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First Initial Consult Update

Forums General Melanoma Community First Initial Consult Update

  • Post
    Alanamaranto22
    Participant
      Well, we drove a little over three hours (one way) to see the surgeon/on his cologist for my first consult hoping for some answers. I didn’t really get any new information other than his main concern was my mitotic rate. He also discussed what he plans to do as far as surgery. While I liked his positive attitude, surgery is going to be three plus weeks out. If his concern was the amount of cancer cells from the pathology report and how rapidly the cells are dividing I don’t understand why he’s waiting so long for the surgery.

      Well, we drove a little over three hours (one way) to see the surgeon/on his cologist for my first consult hoping for some answers. I didn’t really get any new information other than his main concern was my mitotic rate. He also discussed what he plans to do as far as surgery. While I liked his positive attitude, surgery is going to be three plus weeks out. If his concern was the amount of cancer cells from the pathology report and how rapidly the cells are dividing I don’t understand why he’s waiting so long for the surgery. When I asked this question he replied, “if I prioritized all my cancer patients, I would be working seven days a week.” In addition he said that he has seem patients much better than me and he’s seen patients worse than me. While he realized my concern with this, he then said, “If you want to know if you’ll be here this Christmas- the answer is yes.” I just felt that it was kind of a wasted eight hour trip because he couldn’t provide me with any information that I didn’t already know. He doesn’t have all of the information he needs to know how serious it is yet.

      Again, his positive attitude made me feel better but I’m not happy putting this surgery off for three to four weeks, while in the meantime the cancer cells continue to divide and invade my lymphovascular system. He said the probability is high that is has at least reached the nodes behind my knee due to the mitotic rate but he won’t know anything until he gets in there and does the surgery. He did however order a PET/CT Scan which should tell alot. I’m just wondering if I should seek a melanoma specialist for a second opinion. I believe his main focus is plastic surgery, then oncology and he’s a licensed dentist. I have no doubts that he’s very knowledgeable and good but this is my life hanging in the balance and I think I would feel better seeing a doctor who just specializes in melanoma.

      He did say it is treatable but he just doesn’t have the information he needs to know if and where it has spread. Am I just being paranoid and overactive or should I try and seek a melanoma specialist. My biggest thing is- if he’s so worried and concerned about the mitotic rate then why wait so long for surgery? I just don’t understand that. I decided to call him after I left to again ask if three plus weeks of waiting for surgery is going to affect me, her said, “No, not really. You’ve had this for over two years now, waiting now isn’t going to make much of a difference.” I know its my fault for not getting it checked sooner, but I didn’t know it was cancer. I honestly thought it was a mole. I always thought cancer was black or brown patches.

      I have three main characteristics of this thing fighting against me that are of main concern to him: thickness, ulceration and mitotic rate. But he did say it was treatable. Any input would be greatly appreciated.

      Sincerely,
      Alana

    Viewing 89 reply threads
    • Replies
        lunchlady
        Participant

          Just my two cents worth:  ABSOLUTELY FIND A MELANOMA SPECIALIST!

          lunchlady
          Participant

            Just my two cents worth:  ABSOLUTELY FIND A MELANOMA SPECIALIST!

            lunchlady
            Participant

              Just my two cents worth:  ABSOLUTELY FIND A MELANOMA SPECIALIST!

              Janner
              Participant

                I agree, find a melanoma specialist.  However, as you'll find out, the wait is hardly atypical.  It's the reality because most places have backlog.  There have been studies done on "the wait" and the time frames you are talking about are considered medically acceptable.  Mentally acceptable is not the same thing.  As for learning something new – not even a melanoma specialist can tell you at this point.  A scan will tell you if you have major disease but it will not find microscopic disease.  Until the staging protocols are done, no doctor can give you good information.  Anything else is a guess. 

                Best wishes,

                Janner

                Janner
                Participant

                  I agree, find a melanoma specialist.  However, as you'll find out, the wait is hardly atypical.  It's the reality because most places have backlog.  There have been studies done on "the wait" and the time frames you are talking about are considered medically acceptable.  Mentally acceptable is not the same thing.  As for learning something new – not even a melanoma specialist can tell you at this point.  A scan will tell you if you have major disease but it will not find microscopic disease.  Until the staging protocols are done, no doctor can give you good information.  Anything else is a guess. 

                  Best wishes,

                  Janner

                  Janner
                  Participant

                    I agree, find a melanoma specialist.  However, as you'll find out, the wait is hardly atypical.  It's the reality because most places have backlog.  There have been studies done on "the wait" and the time frames you are talking about are considered medically acceptable.  Mentally acceptable is not the same thing.  As for learning something new – not even a melanoma specialist can tell you at this point.  A scan will tell you if you have major disease but it will not find microscopic disease.  Until the staging protocols are done, no doctor can give you good information.  Anything else is a guess. 

                    Best wishes,

                    Janner

                    SteveH230
                    Participant

                      The waiting for surgery is tough to accept and deal with, but it is pretty typical.  You are right, the scans will help with staging and revealing any other areas of concern.  

                      Without a doubt, I would be on the hunt for a melanoma specialist to go see once the surgery and scans are done (if not before).  I cannot stress the importance of this enough.  

                      Best Wishes, 

                      Steve

                      SteveH230
                      Participant

                        The waiting for surgery is tough to accept and deal with, but it is pretty typical.  You are right, the scans will help with staging and revealing any other areas of concern.  

                        Without a doubt, I would be on the hunt for a melanoma specialist to go see once the surgery and scans are done (if not before).  I cannot stress the importance of this enough.  

                        Best Wishes, 

                        Steve

                        SteveH230
                        Participant

                          The waiting for surgery is tough to accept and deal with, but it is pretty typical.  You are right, the scans will help with staging and revealing any other areas of concern.  

                          Without a doubt, I would be on the hunt for a melanoma specialist to go see once the surgery and scans are done (if not before).  I cannot stress the importance of this enough.  

                          Best Wishes, 

                          Steve

                          POW
                          Participant

                            Uh-m-m-m, Alana, you might want to slow down and think about this a bit.

                            I looked up Dr. Tufar's bio on the Johns Hopkins web site. He's a dentist because he specializes in head and neck cancer surgery. Being a dentist strikes me as a good starting place for a head and neck surgeon. He has 5 Diplomates including surgical oncology and he specifically mentions melanoma as one of his specialties. And in my view, the complexity of the nerves, muscles, ligaments and joints of the head/neck is at least as great as the complexity of the same structures in the foot. He must be a very, very careful and detail-oriented surgeon. 

                            If you do decide to go to another surgeon because you are anxious about the delay, I wonder where you're going to find another surgeon as skilled and experienced as Dr. Tufar who will be able to do your surgery in less than 3 weeks. 

                            POW
                            Participant

                              Uh-m-m-m, Alana, you might want to slow down and think about this a bit.

                              I looked up Dr. Tufar's bio on the Johns Hopkins web site. He's a dentist because he specializes in head and neck cancer surgery. Being a dentist strikes me as a good starting place for a head and neck surgeon. He has 5 Diplomates including surgical oncology and he specifically mentions melanoma as one of his specialties. And in my view, the complexity of the nerves, muscles, ligaments and joints of the head/neck is at least as great as the complexity of the same structures in the foot. He must be a very, very careful and detail-oriented surgeon. 

                              If you do decide to go to another surgeon because you are anxious about the delay, I wonder where you're going to find another surgeon as skilled and experienced as Dr. Tufar who will be able to do your surgery in less than 3 weeks. 

                              POW
                              Participant

                                Uh-m-m-m, Alana, you might want to slow down and think about this a bit.

                                I looked up Dr. Tufar's bio on the Johns Hopkins web site. He's a dentist because he specializes in head and neck cancer surgery. Being a dentist strikes me as a good starting place for a head and neck surgeon. He has 5 Diplomates including surgical oncology and he specifically mentions melanoma as one of his specialties. And in my view, the complexity of the nerves, muscles, ligaments and joints of the head/neck is at least as great as the complexity of the same structures in the foot. He must be a very, very careful and detail-oriented surgeon. 

                                If you do decide to go to another surgeon because you are anxious about the delay, I wonder where you're going to find another surgeon as skilled and experienced as Dr. Tufar who will be able to do your surgery in less than 3 weeks. 

                                JerryfromFauq
                                Participant

                                  I, to strongly urge you to see a Melanoma specialist Oncologist.  There is too much going on in the Melanoma area for  even a melanoma specialist to keep completely up on it.  Any less is too little for other than a minimal stage 1 patient in my opinion. 

                                     I recommend two books for people entering this world. 

                                  The Power of Two    by Brian and Gerri Monaghan

                                  AND

                                  Life Over Cancer by Keith I. Block, M.D.. 

                                          Dr Block combines both the Integrative approach and the conventional approach.  I was doing many of the things he recommends even before finding his book.  One of the first things to watch out for is what to take/avoid around surgery.  Melanoma isn't his main cancer of concern, but his individualized approach should be valid for helping individuals approach the battle against most cancers.

                                          As Janner noted, a three week wait for most surgeries is quit normal.  I have only had three surgeries done with less notice. (One, in soft tissue, was actually performed in my melanoma specialist surgeons office the same day I saw him!)

                                          Take a deep breath and don't get too paranoid.  You need to get more info before you actually know just where you really stand in this battle.

                                  JerryfromFauq
                                  Participant

                                    I, to strongly urge you to see a Melanoma specialist Oncologist.  There is too much going on in the Melanoma area for  even a melanoma specialist to keep completely up on it.  Any less is too little for other than a minimal stage 1 patient in my opinion. 

                                       I recommend two books for people entering this world. 

                                    The Power of Two    by Brian and Gerri Monaghan

                                    AND

                                    Life Over Cancer by Keith I. Block, M.D.. 

                                            Dr Block combines both the Integrative approach and the conventional approach.  I was doing many of the things he recommends even before finding his book.  One of the first things to watch out for is what to take/avoid around surgery.  Melanoma isn't his main cancer of concern, but his individualized approach should be valid for helping individuals approach the battle against most cancers.

                                            As Janner noted, a three week wait for most surgeries is quit normal.  I have only had three surgeries done with less notice. (One, in soft tissue, was actually performed in my melanoma specialist surgeons office the same day I saw him!)

                                            Take a deep breath and don't get too paranoid.  You need to get more info before you actually know just where you really stand in this battle.

                                    JerryfromFauq
                                    Participant

                                      I, to strongly urge you to see a Melanoma specialist Oncologist.  There is too much going on in the Melanoma area for  even a melanoma specialist to keep completely up on it.  Any less is too little for other than a minimal stage 1 patient in my opinion. 

                                         I recommend two books for people entering this world. 

                                      The Power of Two    by Brian and Gerri Monaghan

                                      AND

                                      Life Over Cancer by Keith I. Block, M.D.. 

                                              Dr Block combines both the Integrative approach and the conventional approach.  I was doing many of the things he recommends even before finding his book.  One of the first things to watch out for is what to take/avoid around surgery.  Melanoma isn't his main cancer of concern, but his individualized approach should be valid for helping individuals approach the battle against most cancers.

                                              As Janner noted, a three week wait for most surgeries is quit normal.  I have only had three surgeries done with less notice. (One, in soft tissue, was actually performed in my melanoma specialist surgeons office the same day I saw him!)

                                              Take a deep breath and don't get too paranoid.  You need to get more info before you actually know just where you really stand in this battle.

                                      washoegal
                                      Participant

                                        Alana,

                                        First, 3 weeks is actually a pretty short wait time for surgery.  It's frustrating and nerve racking but that's the way it is.  Next, look at your Doc's Bio on Johns Hopkins web site.  I'd be happy to have him as a doctor.  He is a melanoma specialist.

                                        The other thing you should realize is that there are two types of oncologists.  A surgical Oncologist and a Medical Oncologist.  Right now you want a good surgical oncoligist .  Appears to me that's what you have.

                                        If it makes you feel any better, my mititoc rate was 17.  I didn't have nodular mel, nor did I have nearly as deep of a tumor but the mititoc rate was fairly high.  I had 2 nodes with microscope amounts of mel.  I am now 3 years NED.

                                        Take Care,

                                        Mary

                                        washoegal
                                        Participant

                                          Alana,

                                          First, 3 weeks is actually a pretty short wait time for surgery.  It's frustrating and nerve racking but that's the way it is.  Next, look at your Doc's Bio on Johns Hopkins web site.  I'd be happy to have him as a doctor.  He is a melanoma specialist.

                                          The other thing you should realize is that there are two types of oncologists.  A surgical Oncologist and a Medical Oncologist.  Right now you want a good surgical oncoligist .  Appears to me that's what you have.

                                          If it makes you feel any better, my mititoc rate was 17.  I didn't have nodular mel, nor did I have nearly as deep of a tumor but the mititoc rate was fairly high.  I had 2 nodes with microscope amounts of mel.  I am now 3 years NED.

                                          Take Care,

                                          Mary

                                          washoegal
                                          Participant

                                            Alana,

                                            First, 3 weeks is actually a pretty short wait time for surgery.  It's frustrating and nerve racking but that's the way it is.  Next, look at your Doc's Bio on Johns Hopkins web site.  I'd be happy to have him as a doctor.  He is a melanoma specialist.

                                            The other thing you should realize is that there are two types of oncologists.  A surgical Oncologist and a Medical Oncologist.  Right now you want a good surgical oncoligist .  Appears to me that's what you have.

                                            If it makes you feel any better, my mititoc rate was 17.  I didn't have nodular mel, nor did I have nearly as deep of a tumor but the mititoc rate was fairly high.  I had 2 nodes with microscope amounts of mel.  I am now 3 years NED.

                                            Take Care,

                                            Mary

                                            Lori C
                                            Participant

                                              I would always seek a second opinion in such a situation, but I am confident that this surgeon sounds like he is a good one and the hospital is good.  Unfortunately, it is a myth that in the US there are not waiting times for getting into doctors and for surgery.  It's not an emergency and so it can wait, by their thinking.  I know it's horrible to wait.  If you do get a second opinion, make sure it's one as well qualified and a major center for melanoma.  Sloan Kettering, perhaps?  Can you travel?  I am sure people here can make great suggestions for such resources.

                                              Lori, caregiver to Will

                                              Lori C
                                              Participant

                                                I would always seek a second opinion in such a situation, but I am confident that this surgeon sounds like he is a good one and the hospital is good.  Unfortunately, it is a myth that in the US there are not waiting times for getting into doctors and for surgery.  It's not an emergency and so it can wait, by their thinking.  I know it's horrible to wait.  If you do get a second opinion, make sure it's one as well qualified and a major center for melanoma.  Sloan Kettering, perhaps?  Can you travel?  I am sure people here can make great suggestions for such resources.

                                                Lori, caregiver to Will

                                                Lori C
                                                Participant

                                                  I would always seek a second opinion in such a situation, but I am confident that this surgeon sounds like he is a good one and the hospital is good.  Unfortunately, it is a myth that in the US there are not waiting times for getting into doctors and for surgery.  It's not an emergency and so it can wait, by their thinking.  I know it's horrible to wait.  If you do get a second opinion, make sure it's one as well qualified and a major center for melanoma.  Sloan Kettering, perhaps?  Can you travel?  I am sure people here can make great suggestions for such resources.

                                                  Lori, caregiver to Will

                                                  palmspringswalt
                                                  Participant

                                                    Good to see he ordered a PET/CT.  Get it done and get a copy (as of all medical records) of the results yourself ASAP.

                                                    You need to get a second opinion from both a surgical oncologist and a medical oncologist that are part of a major melanoma center as far as the best course of treatment.  You can read many posts here about the importance of going to a major melanoma center.  I had copies of all my medical records and was able to schedule a second opinion within a week at The Angeles Clinic in LA (after some effort on my part….you need to keep pushing to make things happen as quickly as possible).

                                                    It's a personal decision but mostly likely your best treatment options may be to get in a clinical trail.  Major melanoma centers are aware and conduct the trials.  You local oncologist probably will not be up to date on these options.

                                                    I went through a lot of frustration my first few months after diagnosis similar to what you are experiencing so I understand where you are and what you need to work through.

                                                    In the last 2 years there has been significant progress in the treatment of melanoma so you really really need to seek treatment at a major melanoma center for the best care available AND consult with both a SURGICAL and MEDICAL oncologist.

                                                    I wish you the best.

                                                    palmspringswalt
                                                    Participant

                                                      Good to see he ordered a PET/CT.  Get it done and get a copy (as of all medical records) of the results yourself ASAP.

                                                      You need to get a second opinion from both a surgical oncologist and a medical oncologist that are part of a major melanoma center as far as the best course of treatment.  You can read many posts here about the importance of going to a major melanoma center.  I had copies of all my medical records and was able to schedule a second opinion within a week at The Angeles Clinic in LA (after some effort on my part….you need to keep pushing to make things happen as quickly as possible).

                                                      It's a personal decision but mostly likely your best treatment options may be to get in a clinical trail.  Major melanoma centers are aware and conduct the trials.  You local oncologist probably will not be up to date on these options.

                                                      I went through a lot of frustration my first few months after diagnosis similar to what you are experiencing so I understand where you are and what you need to work through.

                                                      In the last 2 years there has been significant progress in the treatment of melanoma so you really really need to seek treatment at a major melanoma center for the best care available AND consult with both a SURGICAL and MEDICAL oncologist.

                                                      I wish you the best.

                                                      palmspringswalt
                                                      Participant

                                                        Good to see he ordered a PET/CT.  Get it done and get a copy (as of all medical records) of the results yourself ASAP.

                                                        You need to get a second opinion from both a surgical oncologist and a medical oncologist that are part of a major melanoma center as far as the best course of treatment.  You can read many posts here about the importance of going to a major melanoma center.  I had copies of all my medical records and was able to schedule a second opinion within a week at The Angeles Clinic in LA (after some effort on my part….you need to keep pushing to make things happen as quickly as possible).

                                                        It's a personal decision but mostly likely your best treatment options may be to get in a clinical trail.  Major melanoma centers are aware and conduct the trials.  You local oncologist probably will not be up to date on these options.

                                                        I went through a lot of frustration my first few months after diagnosis similar to what you are experiencing so I understand where you are and what you need to work through.

                                                        In the last 2 years there has been significant progress in the treatment of melanoma so you really really need to seek treatment at a major melanoma center for the best care available AND consult with both a SURGICAL and MEDICAL oncologist.

                                                        I wish you the best.

                                                        washoegal
                                                        Participant

                                                          Alana,

                                                          You are getting a lot of different input and i think you are going to find this more confusing.  Part of the problem may be that your profile says you are currently Stage 4.  I think that is whay you received the advice from Palm Springs to see both a Surgical and a Medical Onc.  Until you have a SNB and get scans there is no need to consider a medical onc.  Get those things done as quickly as possibly and then move forward.

                                                          Mary.

                                                          washoegal
                                                          Participant

                                                            Alana,

                                                            You are getting a lot of different input and i think you are going to find this more confusing.  Part of the problem may be that your profile says you are currently Stage 4.  I think that is whay you received the advice from Palm Springs to see both a Surgical and a Medical Onc.  Until you have a SNB and get scans there is no need to consider a medical onc.  Get those things done as quickly as possibly and then move forward.

                                                            Mary.

                                                            washoegal
                                                            Participant

                                                              Alana,

                                                              You are getting a lot of different input and i think you are going to find this more confusing.  Part of the problem may be that your profile says you are currently Stage 4.  I think that is whay you received the advice from Palm Springs to see both a Surgical and a Medical Onc.  Until you have a SNB and get scans there is no need to consider a medical onc.  Get those things done as quickly as possibly and then move forward.

                                                              Mary.

                                                              DeniseK
                                                              Participant

                                                                Hi Alana,

                                                                Please go see a specialitst!!  ASAP!!!  

                                                                I disagree that 3 weeks is not a long time.  Go with your gut instincts, be your own advocate!!  Only you know what's best for you.  These doctors need to prioritize melanoma surgeries over implants or face lifts.  If it were me I'd ask to see his schedule, but I'm pretty fiesty.  LOL!!  

                                                                Keep us posted,

                                                                All my best,

                                                                Denise

                                                                DeniseK
                                                                Participant

                                                                  Hi Alana,

                                                                  Please go see a specialitst!!  ASAP!!!  

                                                                  I disagree that 3 weeks is not a long time.  Go with your gut instincts, be your own advocate!!  Only you know what's best for you.  These doctors need to prioritize melanoma surgeries over implants or face lifts.  If it were me I'd ask to see his schedule, but I'm pretty fiesty.  LOL!!  

                                                                  Keep us posted,

                                                                  All my best,

                                                                  Denise

                                                                  DeniseK
                                                                  Participant

                                                                    Hi Alana,

                                                                    Please go see a specialitst!!  ASAP!!!  

                                                                    I disagree that 3 weeks is not a long time.  Go with your gut instincts, be your own advocate!!  Only you know what's best for you.  These doctors need to prioritize melanoma surgeries over implants or face lifts.  If it were me I'd ask to see his schedule, but I'm pretty fiesty.  LOL!!  

                                                                    Keep us posted,

                                                                    All my best,

                                                                    Denise

                                                                    Janner
                                                                    Participant

                                                                      I think everyone brought up good points. 

                                                                      * YOU ARE being seen at a major melanoma center. 

                                                                      * YOU ARE seeing a melanoma specialist – a surgical oncologist who will help you complete your staging/surgeries. 

                                                                      * YOU ARE NOT STAGE IV or even STAGE III at this point and discussing treatments for either stage is not productive until you really know where you stand.  Staging is important because it determines the next step. 

                                                                      Your doc is a surgical oncologist which is where you need to be right now.  When surgery is done, then you see a melanoma specialist who is a medical oncologist to discuss possible treatments.  But surgery and staging are still the first order of business.  By time you get an appointment with another melanoma specialist, you're unlikely to get the consult and surgery scheduled before your current surgery.   You might be able to get it sooner at a smaller place, but then you may miss out the expertise of the experts at Johns Hopkins.

                                                                      Janner
                                                                      Participant

                                                                        I think everyone brought up good points. 

                                                                        * YOU ARE being seen at a major melanoma center. 

                                                                        * YOU ARE seeing a melanoma specialist – a surgical oncologist who will help you complete your staging/surgeries. 

                                                                        * YOU ARE NOT STAGE IV or even STAGE III at this point and discussing treatments for either stage is not productive until you really know where you stand.  Staging is important because it determines the next step. 

                                                                        Your doc is a surgical oncologist which is where you need to be right now.  When surgery is done, then you see a melanoma specialist who is a medical oncologist to discuss possible treatments.  But surgery and staging are still the first order of business.  By time you get an appointment with another melanoma specialist, you're unlikely to get the consult and surgery scheduled before your current surgery.   You might be able to get it sooner at a smaller place, but then you may miss out the expertise of the experts at Johns Hopkins.

                                                                        Janner
                                                                        Participant

                                                                          I think everyone brought up good points. 

                                                                          * YOU ARE being seen at a major melanoma center. 

                                                                          * YOU ARE seeing a melanoma specialist – a surgical oncologist who will help you complete your staging/surgeries. 

                                                                          * YOU ARE NOT STAGE IV or even STAGE III at this point and discussing treatments for either stage is not productive until you really know where you stand.  Staging is important because it determines the next step. 

                                                                          Your doc is a surgical oncologist which is where you need to be right now.  When surgery is done, then you see a melanoma specialist who is a medical oncologist to discuss possible treatments.  But surgery and staging are still the first order of business.  By time you get an appointment with another melanoma specialist, you're unlikely to get the consult and surgery scheduled before your current surgery.   You might be able to get it sooner at a smaller place, but then you may miss out the expertise of the experts at Johns Hopkins.

                                                                          Janner
                                                                          Participant

                                                                            One more thing….  unless you really doubt the ability of the surgeon, I don't think now is the time to get a second opinion.  You want to be staged first.  Then when/if treatments are discussed, THAT IS WHEN I'd go for a second opinion.  Pretty much any facility will do the same steps to get you staged but treatments can be very specific to an institution – especially when it comes to clinical trials.  But even some approved treatments are offered at some institutions and not others.  So get staged and then look at your treatment options and get a second opinion then.

                                                                            Janner
                                                                            Participant

                                                                              One more thing….  unless you really doubt the ability of the surgeon, I don't think now is the time to get a second opinion.  You want to be staged first.  Then when/if treatments are discussed, THAT IS WHEN I'd go for a second opinion.  Pretty much any facility will do the same steps to get you staged but treatments can be very specific to an institution – especially when it comes to clinical trials.  But even some approved treatments are offered at some institutions and not others.  So get staged and then look at your treatment options and get a second opinion then.

                                                                              Janner
                                                                              Participant

                                                                                One more thing….  unless you really doubt the ability of the surgeon, I don't think now is the time to get a second opinion.  You want to be staged first.  Then when/if treatments are discussed, THAT IS WHEN I'd go for a second opinion.  Pretty much any facility will do the same steps to get you staged but treatments can be very specific to an institution – especially when it comes to clinical trials.  But even some approved treatments are offered at some institutions and not others.  So get staged and then look at your treatment options and get a second opinion then.

                                                                                MikeWI
                                                                                Participant

                                                                                  Alana, 

                                                                                  Two years ago I went through the exact same thing you are now.  I acted the same way as you are now.  I researched my disease online and read the same stats as you did for 5 year survivalibilty.  I was intially staged the same as you, t4b.  My dermatologist stated that I had the largest tumor she had seen in years.  I had the same wait for surgery, I was informed I had this disease on 5/24 and had my surgery on 7/6/2011.  During that time I drove myself nuts by reading what was on the internet about this disease.  THAT IS THE WORST THING YOU CAN DO.  Unplug from the internet for awhile until your tests come in.

                                                                                  My doctor explained to me that the wait for surgery was due to all the tests that need to be done before a final stage is made(you have been prestaged at t4b)  This includes a CT/PET scan and may include a CAT scan and possibly an MRI.  Doctors like to do these scans before surgery to get an idea as to what they are dealing with.  Once those scans have been made and the surgery has been completed you will be given a final stage.  Once the final stage has been made the doctor will start to talk to you about a treatment plan.

                                                                                   

                                                                                  here is my information that I hope puts you at ease.  I read the 40 % survivablity stat as well for t4b.  I read that 2 years ago.  After treatment, 2 years later, I am still alive,and my cancer has yet to advance.  I am still NED

                                                                                  MikeWI

                                                                                  Stage 2c currently NED

                                                                                  MikeWI
                                                                                  Participant

                                                                                    Alana, 

                                                                                    Two years ago I went through the exact same thing you are now.  I acted the same way as you are now.  I researched my disease online and read the same stats as you did for 5 year survivalibilty.  I was intially staged the same as you, t4b.  My dermatologist stated that I had the largest tumor she had seen in years.  I had the same wait for surgery, I was informed I had this disease on 5/24 and had my surgery on 7/6/2011.  During that time I drove myself nuts by reading what was on the internet about this disease.  THAT IS THE WORST THING YOU CAN DO.  Unplug from the internet for awhile until your tests come in.

                                                                                    My doctor explained to me that the wait for surgery was due to all the tests that need to be done before a final stage is made(you have been prestaged at t4b)  This includes a CT/PET scan and may include a CAT scan and possibly an MRI.  Doctors like to do these scans before surgery to get an idea as to what they are dealing with.  Once those scans have been made and the surgery has been completed you will be given a final stage.  Once the final stage has been made the doctor will start to talk to you about a treatment plan.

                                                                                     

                                                                                    here is my information that I hope puts you at ease.  I read the 40 % survivablity stat as well for t4b.  I read that 2 years ago.  After treatment, 2 years later, I am still alive,and my cancer has yet to advance.  I am still NED

                                                                                    MikeWI

                                                                                    Stage 2c currently NED

                                                                                    MikeWI
                                                                                    Participant

                                                                                      Alana, 

                                                                                      Two years ago I went through the exact same thing you are now.  I acted the same way as you are now.  I researched my disease online and read the same stats as you did for 5 year survivalibilty.  I was intially staged the same as you, t4b.  My dermatologist stated that I had the largest tumor she had seen in years.  I had the same wait for surgery, I was informed I had this disease on 5/24 and had my surgery on 7/6/2011.  During that time I drove myself nuts by reading what was on the internet about this disease.  THAT IS THE WORST THING YOU CAN DO.  Unplug from the internet for awhile until your tests come in.

                                                                                      My doctor explained to me that the wait for surgery was due to all the tests that need to be done before a final stage is made(you have been prestaged at t4b)  This includes a CT/PET scan and may include a CAT scan and possibly an MRI.  Doctors like to do these scans before surgery to get an idea as to what they are dealing with.  Once those scans have been made and the surgery has been completed you will be given a final stage.  Once the final stage has been made the doctor will start to talk to you about a treatment plan.

                                                                                       

                                                                                      here is my information that I hope puts you at ease.  I read the 40 % survivablity stat as well for t4b.  I read that 2 years ago.  After treatment, 2 years later, I am still alive,and my cancer has yet to advance.  I am still NED

                                                                                      MikeWI

                                                                                      Stage 2c currently NED

                                                                                      POW
                                                                                      Participant

                                                                                        Gosh! You folks are making me so proud!

                                                                                        I can't imagine any other place in the world– in person or online– where so many people would so generously share their experience, knowledge, and comfort with a confused and frightened newbie. MPIP ROCKS!!! 

                                                                                        POW
                                                                                        Participant

                                                                                          Gosh! You folks are making me so proud!

                                                                                          I can't imagine any other place in the world– in person or online– where so many people would so generously share their experience, knowledge, and comfort with a confused and frightened newbie. MPIP ROCKS!!! 

                                                                                          POW
                                                                                          Participant

                                                                                            Gosh! You folks are making me so proud!

                                                                                            I can't imagine any other place in the world– in person or online– where so many people would so generously share their experience, knowledge, and comfort with a confused and frightened newbie. MPIP ROCKS!!! 

                                                                                            Alanamaranto22
                                                                                            Participant
                                                                                              Wow, this is very confusing to me now. My concern at first was that everyone was telling me to find an oncologist who only specializes in melanoma. When I visited Dr. Tufaro I believed he was just performing my surgery and specialized in cancer surgeries. When I looked up his bio I saw that he has three specialties: plastic & reconstructive surgery, oncology (main specialty of head and neck cancers) and he has a dental degree. I do find that he has to be pretty intelligent and experienced to have so many areas of expertise. But everyone was strongly advising me to find a doctor who only specializes in melanoma so that is the main reason that I wanted to seek one.

                                                                                              I do not want to go anywhere else but Hopkins because I know they are rated among the top three hospitals in the country. I guess I don’t understand the waiting part. If its normal than I guess I’ll feel a LITTLE better. I definitely liked his bedside manner because he was so positive which made me feel quite a bit better but since everyone was suggesting the melanoma only specialist, I felt I should search for one because it is my life on the line whether I’m Stage II, III or IV (I forgot to remove that from my profile, sorry). I guess I just don’t understand how all this works and yes-I prefer not to wait, but if I don’t have any other option then I guess this is where I’ll stay. I have heard that he is very good with surgery but I haven’t found anything about treating cancer. He did tell me that after surgery, even if he finds no positive nodes (which is highly doubtful in both of our opinions), I will have to have treatment due to the depth of the tumor and invasion of the tissue. He said the treatment will depend on if and where it spread.

                                                                                              The one thing I liked most about him: is he said, “I don’t tell anyone they’re going to die.”

                                                                                              So based on all the feedback, I guess I’ll be staying with him.

                                                                                              Thanks for all the suggestions and opinions (even though it was a bit confusing…lol).

                                                                                              God Bless.

                                                                                              Alana

                                                                                              Alanamaranto22
                                                                                              Participant
                                                                                                Wow, this is very confusing to me now. My concern at first was that everyone was telling me to find an oncologist who only specializes in melanoma. When I visited Dr. Tufaro I believed he was just performing my surgery and specialized in cancer surgeries. When I looked up his bio I saw that he has three specialties: plastic & reconstructive surgery, oncology (main specialty of head and neck cancers) and he has a dental degree. I do find that he has to be pretty intelligent and experienced to have so many areas of expertise. But everyone was strongly advising me to find a doctor who only specializes in melanoma so that is the main reason that I wanted to seek one.

                                                                                                I do not want to go anywhere else but Hopkins because I know they are rated among the top three hospitals in the country. I guess I don’t understand the waiting part. If its normal than I guess I’ll feel a LITTLE better. I definitely liked his bedside manner because he was so positive which made me feel quite a bit better but since everyone was suggesting the melanoma only specialist, I felt I should search for one because it is my life on the line whether I’m Stage II, III or IV (I forgot to remove that from my profile, sorry). I guess I just don’t understand how all this works and yes-I prefer not to wait, but if I don’t have any other option then I guess this is where I’ll stay. I have heard that he is very good with surgery but I haven’t found anything about treating cancer. He did tell me that after surgery, even if he finds no positive nodes (which is highly doubtful in both of our opinions), I will have to have treatment due to the depth of the tumor and invasion of the tissue. He said the treatment will depend on if and where it spread.

                                                                                                The one thing I liked most about him: is he said, “I don’t tell anyone they’re going to die.”

                                                                                                So based on all the feedback, I guess I’ll be staying with him.

                                                                                                Thanks for all the suggestions and opinions (even though it was a bit confusing…lol).

                                                                                                God Bless.

                                                                                                Alana

                                                                                                Alanamaranto22
                                                                                                Participant
                                                                                                  Wow, this is very confusing to me now. My concern at first was that everyone was telling me to find an oncologist who only specializes in melanoma. When I visited Dr. Tufaro I believed he was just performing my surgery and specialized in cancer surgeries. When I looked up his bio I saw that he has three specialties: plastic & reconstructive surgery, oncology (main specialty of head and neck cancers) and he has a dental degree. I do find that he has to be pretty intelligent and experienced to have so many areas of expertise. But everyone was strongly advising me to find a doctor who only specializes in melanoma so that is the main reason that I wanted to seek one.

                                                                                                  I do not want to go anywhere else but Hopkins because I know they are rated among the top three hospitals in the country. I guess I don’t understand the waiting part. If its normal than I guess I’ll feel a LITTLE better. I definitely liked his bedside manner because he was so positive which made me feel quite a bit better but since everyone was suggesting the melanoma only specialist, I felt I should search for one because it is my life on the line whether I’m Stage II, III or IV (I forgot to remove that from my profile, sorry). I guess I just don’t understand how all this works and yes-I prefer not to wait, but if I don’t have any other option then I guess this is where I’ll stay. I have heard that he is very good with surgery but I haven’t found anything about treating cancer. He did tell me that after surgery, even if he finds no positive nodes (which is highly doubtful in both of our opinions), I will have to have treatment due to the depth of the tumor and invasion of the tissue. He said the treatment will depend on if and where it spread.

                                                                                                  The one thing I liked most about him: is he said, “I don’t tell anyone they’re going to die.”

                                                                                                  So based on all the feedback, I guess I’ll be staying with him.

                                                                                                  Thanks for all the suggestions and opinions (even though it was a bit confusing…lol).

                                                                                                  God Bless.

                                                                                                  Alana

                                                                                                  washoegal
                                                                                                  Participant

                                                                                                    Alana,

                                                                                                    Some of the super intelengent docs you find around have a variety of degrees and specialities.  For some that's because they lose interest quickly for others it's because the get through programs at such a young age they find it better to continue on with their education – this maybe your case.  Did you also notice you doc help start up the melanoma program at Johns Hopkins?  I'd say that says alot. 

                                                                                                    I think Janners post should cover most of your concerns.

                                                                                                    Mary

                                                                                                    washoegal
                                                                                                    Participant

                                                                                                      Alana,

                                                                                                      Some of the super intelengent docs you find around have a variety of degrees and specialities.  For some that's because they lose interest quickly for others it's because the get through programs at such a young age they find it better to continue on with their education – this maybe your case.  Did you also notice you doc help start up the melanoma program at Johns Hopkins?  I'd say that says alot. 

                                                                                                      I think Janners post should cover most of your concerns.

                                                                                                      Mary

                                                                                                      washoegal
                                                                                                      Participant

                                                                                                        Alana,

                                                                                                        Some of the super intelengent docs you find around have a variety of degrees and specialities.  For some that's because they lose interest quickly for others it's because the get through programs at such a young age they find it better to continue on with their education – this maybe your case.  Did you also notice you doc help start up the melanoma program at Johns Hopkins?  I'd say that says alot. 

                                                                                                        I think Janners post should cover most of your concerns.

                                                                                                        Mary

                                                                                                        Alanamaranto22
                                                                                                        Participant
                                                                                                          It does make sense that because he specializes in head and head cancers it’s actually good to have that dental degree and knowledge because he was telling me a story about seeing and removing cancers in the mouth. I guess my brain wasn’t functioning enough to think about putting two and two together. If he’s also working in the mouth, most people do have teeth in there also. Fear and anxiety had taken over my mind. I do feel better knowing all of this and realizing that I’m probably in the best hands I could possibly be in. I think all of this is just overwhelming me and it’s alot to take in, but I’m so glad I can come here, share my feelings and kind of vent and then listen to reason. It helps alot to have those who have already been through it help me to think rationally and not fearfully.

                                                                                                          Thanks for smacking some sense into me.

                                                                                                          Sincerely,
                                                                                                          Alana

                                                                                                          Alanamaranto22
                                                                                                          Participant
                                                                                                            It does make sense that because he specializes in head and head cancers it’s actually good to have that dental degree and knowledge because he was telling me a story about seeing and removing cancers in the mouth. I guess my brain wasn’t functioning enough to think about putting two and two together. If he’s also working in the mouth, most people do have teeth in there also. Fear and anxiety had taken over my mind. I do feel better knowing all of this and realizing that I’m probably in the best hands I could possibly be in. I think all of this is just overwhelming me and it’s alot to take in, but I’m so glad I can come here, share my feelings and kind of vent and then listen to reason. It helps alot to have those who have already been through it help me to think rationally and not fearfully.

                                                                                                            Thanks for smacking some sense into me.

                                                                                                            Sincerely,
                                                                                                            Alana

                                                                                                            Alanamaranto22
                                                                                                            Participant
                                                                                                              It does make sense that because he specializes in head and head cancers it’s actually good to have that dental degree and knowledge because he was telling me a story about seeing and removing cancers in the mouth. I guess my brain wasn’t functioning enough to think about putting two and two together. If he’s also working in the mouth, most people do have teeth in there also. Fear and anxiety had taken over my mind. I do feel better knowing all of this and realizing that I’m probably in the best hands I could possibly be in. I think all of this is just overwhelming me and it’s alot to take in, but I’m so glad I can come here, share my feelings and kind of vent and then listen to reason. It helps alot to have those who have already been through it help me to think rationally and not fearfully.

                                                                                                              Thanks for smacking some sense into me.

                                                                                                              Sincerely,
                                                                                                              Alana

                                                                                                              LibbyinVA
                                                                                                              Participant
                                                                                                                Please see a melanoma specialist. I did not and I seriously regret not doing so.

                                                                                                                Not sure I remember where you are, but I highly recommend Dr Anna Pavlick at NYU. I did a clinical trial there backmin 2006. You can contact me via my profile page if you need contact details for her.

                                                                                                                Wishing you the best, but PLEASE see a melanoma specialist at one of the major melanoma centers.

                                                                                                                Libby

                                                                                                                LibbyinVA
                                                                                                                Participant
                                                                                                                  Please see a melanoma specialist. I did not and I seriously regret not doing so.

                                                                                                                  Not sure I remember where you are, but I highly recommend Dr Anna Pavlick at NYU. I did a clinical trial there backmin 2006. You can contact me via my profile page if you need contact details for her.

                                                                                                                  Wishing you the best, but PLEASE see a melanoma specialist at one of the major melanoma centers.

                                                                                                                  Libby

                                                                                                                  LibbyinVA
                                                                                                                  Participant
                                                                                                                    Please see a melanoma specialist. I did not and I seriously regret not doing so.

                                                                                                                    Not sure I remember where you are, but I highly recommend Dr Anna Pavlick at NYU. I did a clinical trial there backmin 2006. You can contact me via my profile page if you need contact details for her.

                                                                                                                    Wishing you the best, but PLEASE see a melanoma specialist at one of the major melanoma centers.

                                                                                                                    Libby

                                                                                                                    kathycmc
                                                                                                                    Participant

                                                                                                                      You want a very good head and neck surgeon who is experienced/specializes in oncology with a good amount of that being melanoma.  For treatment you definitely want a melanoma oncologist.  The closer the 2 work together the better but it is not essential.  3 weeks was how long my daughter had to wait too and we freaked out about it as well but couldn't get it moved up.  I know surgeons need some time to go over all the tests and scans and plan out a course of action for surgery so maybe that is part of it.  

                                                                                                                      kathycmc
                                                                                                                      Participant

                                                                                                                        You want a very good head and neck surgeon who is experienced/specializes in oncology with a good amount of that being melanoma.  For treatment you definitely want a melanoma oncologist.  The closer the 2 work together the better but it is not essential.  3 weeks was how long my daughter had to wait too and we freaked out about it as well but couldn't get it moved up.  I know surgeons need some time to go over all the tests and scans and plan out a course of action for surgery so maybe that is part of it.  

                                                                                                                        kathycmc
                                                                                                                        Participant

                                                                                                                          You want a very good head and neck surgeon who is experienced/specializes in oncology with a good amount of that being melanoma.  For treatment you definitely want a melanoma oncologist.  The closer the 2 work together the better but it is not essential.  3 weeks was how long my daughter had to wait too and we freaked out about it as well but couldn't get it moved up.  I know surgeons need some time to go over all the tests and scans and plan out a course of action for surgery so maybe that is part of it.  

                                                                                                                          Charlie S
                                                                                                                          Participant

                                                                                                                            I, as have others, have been very sympathetic and supportive  to your plight, but it is time for plain talk and I would like you to take a deep breath and listen.

                                                                                                                            I do want you to listen though, because in the early stage of a melanoma diagnosis it is quite (and understandably) easy to become deaf and jump to conclusions due to over thinking based upon speculation.

                                                                                                                            You will not like this, but you are expecting too much too soon and are expecting some sort of yes or no answer.

                                                                                                                            That is not how Melanoma works.  Hung up as you are about your pathology, it is only a starting point, not as you seem to believe as an end point.

                                                                                                                            Once again, please set down, take a deep breath and listen and work the problem.

                                                                                                                            By the numbers and the decision tree for cancer of any type, one must: determine the  level of involvement(you do not know this).  Surgery, in an attempt to gain clear margins coupled with a Sentinel Node Biopsy is a first step(you do not know this).  Scans (CT/PET/MRI) are further indicative(you do not know this).

                                                                                                                            Get the picture?  There is a lot you do not know.

                                                                                                                            Untill you do, everything is speculation……………..that means a guess.

                                                                                                                            I get you are freaked, but WORK the problem based upon facts; not speculation.

                                                                                                                             

                                                                                                                            Yes, it will take time.  You will have to accept that.

                                                                                                                            Charlie S

                                                                                                                             

                                                                                                                             

                                                                                                                            Charlie S
                                                                                                                            Participant

                                                                                                                              I, as have others, have been very sympathetic and supportive  to your plight, but it is time for plain talk and I would like you to take a deep breath and listen.

                                                                                                                              I do want you to listen though, because in the early stage of a melanoma diagnosis it is quite (and understandably) easy to become deaf and jump to conclusions due to over thinking based upon speculation.

                                                                                                                              You will not like this, but you are expecting too much too soon and are expecting some sort of yes or no answer.

                                                                                                                              That is not how Melanoma works.  Hung up as you are about your pathology, it is only a starting point, not as you seem to believe as an end point.

                                                                                                                              Once again, please set down, take a deep breath and listen and work the problem.

                                                                                                                              By the numbers and the decision tree for cancer of any type, one must: determine the  level of involvement(you do not know this).  Surgery, in an attempt to gain clear margins coupled with a Sentinel Node Biopsy is a first step(you do not know this).  Scans (CT/PET/MRI) are further indicative(you do not know this).

                                                                                                                              Get the picture?  There is a lot you do not know.

                                                                                                                              Untill you do, everything is speculation……………..that means a guess.

                                                                                                                              I get you are freaked, but WORK the problem based upon facts; not speculation.

                                                                                                                               

                                                                                                                              Yes, it will take time.  You will have to accept that.

                                                                                                                              Charlie S

                                                                                                                               

                                                                                                                               

                                                                                                                              Charlie S
                                                                                                                              Participant

                                                                                                                                I, as have others, have been very sympathetic and supportive  to your plight, but it is time for plain talk and I would like you to take a deep breath and listen.

                                                                                                                                I do want you to listen though, because in the early stage of a melanoma diagnosis it is quite (and understandably) easy to become deaf and jump to conclusions due to over thinking based upon speculation.

                                                                                                                                You will not like this, but you are expecting too much too soon and are expecting some sort of yes or no answer.

                                                                                                                                That is not how Melanoma works.  Hung up as you are about your pathology, it is only a starting point, not as you seem to believe as an end point.

                                                                                                                                Once again, please set down, take a deep breath and listen and work the problem.

                                                                                                                                By the numbers and the decision tree for cancer of any type, one must: determine the  level of involvement(you do not know this).  Surgery, in an attempt to gain clear margins coupled with a Sentinel Node Biopsy is a first step(you do not know this).  Scans (CT/PET/MRI) are further indicative(you do not know this).

                                                                                                                                Get the picture?  There is a lot you do not know.

                                                                                                                                Untill you do, everything is speculation……………..that means a guess.

                                                                                                                                I get you are freaked, but WORK the problem based upon facts; not speculation.

                                                                                                                                 

                                                                                                                                Yes, it will take time.  You will have to accept that.

                                                                                                                                Charlie S

                                                                                                                                 

                                                                                                                                 

                                                                                                                                kylez
                                                                                                                                Participant

                                                                                                                                  Alana,

                                                                                                                                  Not to pile on, and hopefully not to confuse. All I can do is share my own experience being staged and what kinds of doctors I saw, and when.

                                                                                                                                  1st suspected melanoma primary was sampled for biopsy by dermatologist. The biopsy sample was diagnosed as stage I melanoma by a dermatopathology. I was referred to a Head and Neck surgeon, who did the wide excision and SNB. I never saw any oncologist. I suspect all anyone could really tell me would be to stay out of the sun and wear sunscreen. I don't remember having any scans but the memory is foggy. 

                                                                                                                                  2nd melanoma primary, same sequence as first, biopsy staged it as stage 1, and a wide excistion plus SNB was done by head and neck surgeon, end of story. Was not referred to an oncologist, don't remember any scans.

                                                                                                                                  Unlike the vast majority of stage I cases, in my case a couple of years later, some suspicious spots showed up on a chest X-Ray. Immediately a CT scan was performed, confirming (and sizing) 8 suspicious lesions. My primary physician ordered another CT scan a month later, and then another one 1.5 months after that. He may or may not have been consulting with an oncologist. 

                                                                                                                                  As the CT scans showed the lesions were slowly growing (probably 1mm each in that time period), it became more suspicious for (some unknown/unconfirmed) type of cancer. At this point was the first time I was referred to a (non-melanoma speciaist) oncologist. She gave me choice of watch and wait, or needle biopsy. The lesions were still too small to do that, so she gave me the choice of watch and wait or a more invasive  surgical procedure called VATS to sample the suspicious lesions. I did the VATS which confirmed melanoma and changed my staging to stage 4. At that point I was referred to a melanoma specialist oncologist, and was eligible for treatments given to stage IV and IIIc cases.

                                                                                                                                  That set of steps still seems reasonable to me in retrospect, I've never second guessed them.

                                                                                                                                  Hope this helps. – Kyle

                                                                                                                                  kylez
                                                                                                                                  Participant

                                                                                                                                    Alana,

                                                                                                                                    Not to pile on, and hopefully not to confuse. All I can do is share my own experience being staged and what kinds of doctors I saw, and when.

                                                                                                                                    1st suspected melanoma primary was sampled for biopsy by dermatologist. The biopsy sample was diagnosed as stage I melanoma by a dermatopathology. I was referred to a Head and Neck surgeon, who did the wide excision and SNB. I never saw any oncologist. I suspect all anyone could really tell me would be to stay out of the sun and wear sunscreen. I don't remember having any scans but the memory is foggy. 

                                                                                                                                    2nd melanoma primary, same sequence as first, biopsy staged it as stage 1, and a wide excistion plus SNB was done by head and neck surgeon, end of story. Was not referred to an oncologist, don't remember any scans.

                                                                                                                                    Unlike the vast majority of stage I cases, in my case a couple of years later, some suspicious spots showed up on a chest X-Ray. Immediately a CT scan was performed, confirming (and sizing) 8 suspicious lesions. My primary physician ordered another CT scan a month later, and then another one 1.5 months after that. He may or may not have been consulting with an oncologist. 

                                                                                                                                    As the CT scans showed the lesions were slowly growing (probably 1mm each in that time period), it became more suspicious for (some unknown/unconfirmed) type of cancer. At this point was the first time I was referred to a (non-melanoma speciaist) oncologist. She gave me choice of watch and wait, or needle biopsy. The lesions were still too small to do that, so she gave me the choice of watch and wait or a more invasive  surgical procedure called VATS to sample the suspicious lesions. I did the VATS which confirmed melanoma and changed my staging to stage 4. At that point I was referred to a melanoma specialist oncologist, and was eligible for treatments given to stage IV and IIIc cases.

                                                                                                                                    That set of steps still seems reasonable to me in retrospect, I've never second guessed them.

                                                                                                                                    Hope this helps. – Kyle

                                                                                                                                    kylez
                                                                                                                                    Participant

                                                                                                                                      Alana,

                                                                                                                                      Not to pile on, and hopefully not to confuse. All I can do is share my own experience being staged and what kinds of doctors I saw, and when.

                                                                                                                                      1st suspected melanoma primary was sampled for biopsy by dermatologist. The biopsy sample was diagnosed as stage I melanoma by a dermatopathology. I was referred to a Head and Neck surgeon, who did the wide excision and SNB. I never saw any oncologist. I suspect all anyone could really tell me would be to stay out of the sun and wear sunscreen. I don't remember having any scans but the memory is foggy. 

                                                                                                                                      2nd melanoma primary, same sequence as first, biopsy staged it as stage 1, and a wide excistion plus SNB was done by head and neck surgeon, end of story. Was not referred to an oncologist, don't remember any scans.

                                                                                                                                      Unlike the vast majority of stage I cases, in my case a couple of years later, some suspicious spots showed up on a chest X-Ray. Immediately a CT scan was performed, confirming (and sizing) 8 suspicious lesions. My primary physician ordered another CT scan a month later, and then another one 1.5 months after that. He may or may not have been consulting with an oncologist. 

                                                                                                                                      As the CT scans showed the lesions were slowly growing (probably 1mm each in that time period), it became more suspicious for (some unknown/unconfirmed) type of cancer. At this point was the first time I was referred to a (non-melanoma speciaist) oncologist. She gave me choice of watch and wait, or needle biopsy. The lesions were still too small to do that, so she gave me the choice of watch and wait or a more invasive  surgical procedure called VATS to sample the suspicious lesions. I did the VATS which confirmed melanoma and changed my staging to stage 4. At that point I was referred to a melanoma specialist oncologist, and was eligible for treatments given to stage IV and IIIc cases.

                                                                                                                                      That set of steps still seems reasonable to me in retrospect, I've never second guessed them.

                                                                                                                                      Hope this helps. – Kyle

                                                                                                                                      Alanamaranto22
                                                                                                                                      Participant
                                                                                                                                        I feel like I’ve come here for support and guidance and I’m getting bombarded in every direction. Was I scared to death after receiving the pathology report? Of course, any type of cancer with my health history is going to scare me- especially when the dermatologist tells me I’m going to die. So of course I’m even more frightened and trying to look everything up from the pathology report to try and understand why he would say that. Wrong or right, I was afraid. I am also new to all of this so I am not as knowledgable with what happens and how long things take, I’m only thinking about getting rid of this ASAP because I do not want to die. So I then come here and listen to your stories and suggestions and yes- while I’m still very afraid I’m getting many differing suggestions. I then see the surgeon/oncologist (with my soon-to-be ex husband) he tells me he has to do the surgery, ordered the scans and tells me it will be three weeks out. Is this concerning to me? Of course, when he tells me that he’s very concerned with the mitotic rate. Again, I’m new to this and didn’t understand the waiting process. Then many have suggested finding a melanoma specialist and others are saying to stay with my current doctor. So I calm down a little and decide I will just wait it out and stay with my current doc. Now I feel that I’m being bombarded again and I don’t understand why. I guess maybe it was too soon to join this group until I was appropriately staged and gained more knowledge on melanoma from personal experience. I will just ride it out and pray for a positive outcome.

                                                                                                                                        I wish you all the best.

                                                                                                                                        God Bless.
                                                                                                                                        Alana

                                                                                                                                        Alanamaranto22
                                                                                                                                        Participant
                                                                                                                                          I feel like I’ve come here for support and guidance and I’m getting bombarded in every direction. Was I scared to death after receiving the pathology report? Of course, any type of cancer with my health history is going to scare me- especially when the dermatologist tells me I’m going to die. So of course I’m even more frightened and trying to look everything up from the pathology report to try and understand why he would say that. Wrong or right, I was afraid. I am also new to all of this so I am not as knowledgable with what happens and how long things take, I’m only thinking about getting rid of this ASAP because I do not want to die. So I then come here and listen to your stories and suggestions and yes- while I’m still very afraid I’m getting many differing suggestions. I then see the surgeon/oncologist (with my soon-to-be ex husband) he tells me he has to do the surgery, ordered the scans and tells me it will be three weeks out. Is this concerning to me? Of course, when he tells me that he’s very concerned with the mitotic rate. Again, I’m new to this and didn’t understand the waiting process. Then many have suggested finding a melanoma specialist and others are saying to stay with my current doctor. So I calm down a little and decide I will just wait it out and stay with my current doc. Now I feel that I’m being bombarded again and I don’t understand why. I guess maybe it was too soon to join this group until I was appropriately staged and gained more knowledge on melanoma from personal experience. I will just ride it out and pray for a positive outcome.

                                                                                                                                          I wish you all the best.

                                                                                                                                          God Bless.
                                                                                                                                          Alana

                                                                                                                                          Alanamaranto22
                                                                                                                                          Participant
                                                                                                                                            I feel like I’ve come here for support and guidance and I’m getting bombarded in every direction. Was I scared to death after receiving the pathology report? Of course, any type of cancer with my health history is going to scare me- especially when the dermatologist tells me I’m going to die. So of course I’m even more frightened and trying to look everything up from the pathology report to try and understand why he would say that. Wrong or right, I was afraid. I am also new to all of this so I am not as knowledgable with what happens and how long things take, I’m only thinking about getting rid of this ASAP because I do not want to die. So I then come here and listen to your stories and suggestions and yes- while I’m still very afraid I’m getting many differing suggestions. I then see the surgeon/oncologist (with my soon-to-be ex husband) he tells me he has to do the surgery, ordered the scans and tells me it will be three weeks out. Is this concerning to me? Of course, when he tells me that he’s very concerned with the mitotic rate. Again, I’m new to this and didn’t understand the waiting process. Then many have suggested finding a melanoma specialist and others are saying to stay with my current doctor. So I calm down a little and decide I will just wait it out and stay with my current doc. Now I feel that I’m being bombarded again and I don’t understand why. I guess maybe it was too soon to join this group until I was appropriately staged and gained more knowledge on melanoma from personal experience. I will just ride it out and pray for a positive outcome.

                                                                                                                                            I wish you all the best.

                                                                                                                                            God Bless.
                                                                                                                                            Alana

                                                                                                                                            MichaelFL
                                                                                                                                            Participant

                                                                                                                                              Everyone is trying to help you in their own way based on what they know. it was not their intention to confuse you further. You have it right, stay where you are for now until staging, and then work with your doctors to come a plan based on what you have learned. What will be decided as to what will need to be done after that will be between you and your doctors.

                                                                                                                                              Please feel free to keep posting and let the board know what is going on.

                                                                                                                                              xxxooo

                                                                                                                                               

                                                                                                                                              MichaelFL
                                                                                                                                              Participant

                                                                                                                                                Everyone is trying to help you in their own way based on what they know. it was not their intention to confuse you further. You have it right, stay where you are for now until staging, and then work with your doctors to come a plan based on what you have learned. What will be decided as to what will need to be done after that will be between you and your doctors.

                                                                                                                                                Please feel free to keep posting and let the board know what is going on.

                                                                                                                                                xxxooo

                                                                                                                                                 

                                                                                                                                                MichaelFL
                                                                                                                                                Participant

                                                                                                                                                  Everyone is trying to help you in their own way based on what they know. it was not their intention to confuse you further. You have it right, stay where you are for now until staging, and then work with your doctors to come a plan based on what you have learned. What will be decided as to what will need to be done after that will be between you and your doctors.

                                                                                                                                                  Please feel free to keep posting and let the board know what is going on.

                                                                                                                                                  xxxooo

                                                                                                                                                   

                                                                                                                                                  LibbyinVA
                                                                                                                                                  Participant

                                                                                                                                                    Alana – I messaged you privately via this board…feel just awful that you feel like you have not been treated very well, especially since you are a "newbie" here. I understand and have been there myself. Please give the board another chance. Most of us are very compassionate and only want to help.

                                                                                                                                                    LibbyinVA
                                                                                                                                                    Participant

                                                                                                                                                      Alana – I messaged you privately via this board…feel just awful that you feel like you have not been treated very well, especially since you are a "newbie" here. I understand and have been there myself. Please give the board another chance. Most of us are very compassionate and only want to help.

                                                                                                                                                      LibbyinVA
                                                                                                                                                      Participant

                                                                                                                                                        Alana – I messaged you privately via this board…feel just awful that you feel like you have not been treated very well, especially since you are a "newbie" here. I understand and have been there myself. Please give the board another chance. Most of us are very compassionate and only want to help.

                                                                                                                                                        DeniseK
                                                                                                                                                        Participant

                                                                                                                                                           

                                                                                                                                                          Alana,

                                                                                                                                                           There are people on this site that think they "know it all."  The fact is that I was given advice about my progression that turned out to be wrong on this site.  These people on this site are NOT medical doctors and SHOULD not be advising you of any medical decisions that will affect your life and your health.  These "opinions" are just that.  People can share their experiences and support one another in what each individual decides but they should not be offering any medical decisions that you should be making.  In your battle it will be YOU and YOU only that should be making any decisions about your treatment and doctors.  It's your life, take charge and do what you feel you need to do to win your battle and give you peace of mind.  This is a very scary time for you and we all get that, I am personally scared everyday, some days better than others.  

                                                                                                                                                          DeniseK
                                                                                                                                                          Participant

                                                                                                                                                             

                                                                                                                                                            Alana,

                                                                                                                                                             There are people on this site that think they "know it all."  The fact is that I was given advice about my progression that turned out to be wrong on this site.  These people on this site are NOT medical doctors and SHOULD not be advising you of any medical decisions that will affect your life and your health.  These "opinions" are just that.  People can share their experiences and support one another in what each individual decides but they should not be offering any medical decisions that you should be making.  In your battle it will be YOU and YOU only that should be making any decisions about your treatment and doctors.  It's your life, take charge and do what you feel you need to do to win your battle and give you peace of mind.  This is a very scary time for you and we all get that, I am personally scared everyday, some days better than others.  

                                                                                                                                                            DeniseK
                                                                                                                                                            Participant

                                                                                                                                                               

                                                                                                                                                              Alana,

                                                                                                                                                               There are people on this site that think they "know it all."  The fact is that I was given advice about my progression that turned out to be wrong on this site.  These people on this site are NOT medical doctors and SHOULD not be advising you of any medical decisions that will affect your life and your health.  These "opinions" are just that.  People can share their experiences and support one another in what each individual decides but they should not be offering any medical decisions that you should be making.  In your battle it will be YOU and YOU only that should be making any decisions about your treatment and doctors.  It's your life, take charge and do what you feel you need to do to win your battle and give you peace of mind.  This is a very scary time for you and we all get that, I am personally scared everyday, some days better than others.  

                                                                                                                                                              JC
                                                                                                                                                              Participant

                                                                                                                                                                they may not be medical doctors, but i would venture to say many on this site know as much about this disease as anyone. .based on their experience and research. . so i would not discount the info you get here, i would challenge someone to try and get similar info anywhere else. . .  here, people specialize in this disease

                                                                                                                                                                JC
                                                                                                                                                                Participant

                                                                                                                                                                  they may not be medical doctors, but i would venture to say many on this site know as much about this disease as anyone. .based on their experience and research. . so i would not discount the info you get here, i would challenge someone to try and get similar info anywhere else. . .  here, people specialize in this disease

                                                                                                                                                                  JC
                                                                                                                                                                  Participant

                                                                                                                                                                    they may not be medical doctors, but i would venture to say many on this site know as much about this disease as anyone. .based on their experience and research. . so i would not discount the info you get here, i would challenge someone to try and get similar info anywhere else. . .  here, people specialize in this disease

                                                                                                                                                                    anonomyous
                                                                                                                                                                    Participant

                                                                                                                                                                      I agree- there are some people on here that are not in stage III or IV and they have advice as if they are in those stages and as if they understand. They are judgemental and it's frustrating.

                                                                                                                                                                      anonomyous
                                                                                                                                                                      Participant

                                                                                                                                                                        I agree- there are some people on here that are not in stage III or IV and they have advice as if they are in those stages and as if they understand. They are judgemental and it's frustrating.

                                                                                                                                                                        anonomyous
                                                                                                                                                                        Participant

                                                                                                                                                                          I agree- there are some people on here that are not in stage III or IV and they have advice as if they are in those stages and as if they understand. They are judgemental and it's frustrating.

                                                                                                                                                                          JerryfromFauq
                                                                                                                                                                          Participant

                                                                                                                                                                            Mitotic count:
                                                                                                                                                                            http://en.wikipedia.org/wiki/Breast_cancer_classification#Other_immunohistochemical_tests

                                                                                                                                                                            This parameter assesses how many mitotic figures (dividing cells) the pathologist sees in 10 microscope fields. One of the hallmarks of cancer is that cells divide uncontrollably. The more cells that are dividing, the worse the cancer.

                                                                                                                                                                            Note: Mitotic figures are counted only at the periphery of the tumor, and counting should begin in the most mitotically active areas.

                                                                                                                                                                            • 1 point: 0-9 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, 0-5 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or 0-11 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                            • 2 points: 10-19 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, 6-10 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or 12-22 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                            • 3 points: Over 19 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, over 10 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or over 22 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                            Participant

                                                                                                                                                                              Mitotic count:
                                                                                                                                                                              http://en.wikipedia.org/wiki/Breast_cancer_classification#Other_immunohistochemical_tests

                                                                                                                                                                              This parameter assesses how many mitotic figures (dividing cells) the pathologist sees in 10 microscope fields. One of the hallmarks of cancer is that cells divide uncontrollably. The more cells that are dividing, the worse the cancer.

                                                                                                                                                                              Note: Mitotic figures are counted only at the periphery of the tumor, and counting should begin in the most mitotically active areas.

                                                                                                                                                                              • 1 point: 0-9 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, 0-5 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or 0-11 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                              • 2 points: 10-19 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, 6-10 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or 12-22 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                              • 3 points: Over 19 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, over 10 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or over 22 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                              JerryfromFauq
                                                                                                                                                                              Participant

                                                                                                                                                                                Mitotic count:
                                                                                                                                                                                http://en.wikipedia.org/wiki/Breast_cancer_classification#Other_immunohistochemical_tests

                                                                                                                                                                                This parameter assesses how many mitotic figures (dividing cells) the pathologist sees in 10 microscope fields. One of the hallmarks of cancer is that cells divide uncontrollably. The more cells that are dividing, the worse the cancer.

                                                                                                                                                                                Note: Mitotic figures are counted only at the periphery of the tumor, and counting should begin in the most mitotically active areas.

                                                                                                                                                                                • 1 point: 0-9 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, 0-5 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or 0-11 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                                • 2 points: 10-19 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, 6-10 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or 12-22 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                                • 3 points: Over 19 mitotic counts per 10 fields under X25 objective using the Leitz Ortholux microscope, over 10 mitotic counts per 10 fields under X40 objective using the Nikon Labophot microscope, or over 22 mitotic counts per 10 fields under X40 objective using the Leitz Daiplan microscope

                                                                                                                                                                                Thandster
                                                                                                                                                                                Participant
                                                                                                                                                                                  How are you doing Alana? I’ve been wondering what is happening with you. I’d love to be updated on what’s happening if you get a chance. Thanks and God Bless!
                                                                                                                                                                                  Thandster
                                                                                                                                                                                  Participant
                                                                                                                                                                                    How are you doing Alana? I’ve been wondering what is happening with you. I’d love to be updated on what’s happening if you get a chance. Thanks and God Bless!
                                                                                                                                                                                    Thandster
                                                                                                                                                                                    Participant
                                                                                                                                                                                      How are you doing Alana? I’ve been wondering what is happening with you. I’d love to be updated on what’s happening if you get a chance. Thanks and God Bless!
                                                                                                                                                                                        Alanamaranto22
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Sorry it's been so long. My mother passed away shortly after my first post. That was a devastation beyond any. Anyhow, I had my wide excision surgery and sentinel node biopsy a week after her funeral. My nodes were clean so I was staged IIC. It is now June 2015 and my latest scans show new lung nodules. Every scan shows at least one or two. I was told "Big enough to be concerned but too small to biopsy," so we wait and watch. I have a cluster of nodules on my right lung and two on my left. A little nerve racking but I'm tired of worrying. I just received my biopsy results from the dermatologist and I now have invasive basal cell carcinoma on both my chest and back. I feel like I'm a walking cancer stick. First it was thyroid cancer, then melanoma and now invasive basal cell carcinoma. Can't wait to find out what cancer I'll have next year. Geesh. Still not worrying though. I'm done with worrying. Whatever God has planned is out of my hands. I'm living my life. Hope everyone else is doing good. 

                                                                                                                                                                                           

                                                                                                                                                                                          Oh, and both my surgical oncologist and melanoma oncologist are awesome. Love them both. They have the best attitudes and make me feel very positive. They truly give me hope. So I'm so grateful I stuck with them. 

                                                                                                                                                                                          God Bless!

                                                                                                                                                                                          Alana

                                                                                                                                                                                          Alanamaranto22
                                                                                                                                                                                          Participant

                                                                                                                                                                                            Sorry it's been so long. My mother passed away shortly after my first post. That was a devastation beyond any. Anyhow, I had my wide excision surgery and sentinel node biopsy a week after her funeral. My nodes were clean so I was staged IIC. It is now June 2015 and my latest scans show new lung nodules. Every scan shows at least one or two. I was told "Big enough to be concerned but too small to biopsy," so we wait and watch. I have a cluster of nodules on my right lung and two on my left. A little nerve racking but I'm tired of worrying. I just received my biopsy results from the dermatologist and I now have invasive basal cell carcinoma on both my chest and back. I feel like I'm a walking cancer stick. First it was thyroid cancer, then melanoma and now invasive basal cell carcinoma. Can't wait to find out what cancer I'll have next year. Geesh. Still not worrying though. I'm done with worrying. Whatever God has planned is out of my hands. I'm living my life. Hope everyone else is doing good. 

                                                                                                                                                                                             

                                                                                                                                                                                            Oh, and both my surgical oncologist and melanoma oncologist are awesome. Love them both. They have the best attitudes and make me feel very positive. They truly give me hope. So I'm so grateful I stuck with them. 

                                                                                                                                                                                            God Bless!

                                                                                                                                                                                            Alana

                                                                                                                                                                                            Alanamaranto22
                                                                                                                                                                                            Participant

                                                                                                                                                                                              Sorry it's been so long. My mother passed away shortly after my first post. That was a devastation beyond any. Anyhow, I had my wide excision surgery and sentinel node biopsy a week after her funeral. My nodes were clean so I was staged IIC. It is now June 2015 and my latest scans show new lung nodules. Every scan shows at least one or two. I was told "Big enough to be concerned but too small to biopsy," so we wait and watch. I have a cluster of nodules on my right lung and two on my left. A little nerve racking but I'm tired of worrying. I just received my biopsy results from the dermatologist and I now have invasive basal cell carcinoma on both my chest and back. I feel like I'm a walking cancer stick. First it was thyroid cancer, then melanoma and now invasive basal cell carcinoma. Can't wait to find out what cancer I'll have next year. Geesh. Still not worrying though. I'm done with worrying. Whatever God has planned is out of my hands. I'm living my life. Hope everyone else is doing good. 

                                                                                                                                                                                               

                                                                                                                                                                                              Oh, and both my surgical oncologist and melanoma oncologist are awesome. Love them both. They have the best attitudes and make me feel very positive. They truly give me hope. So I'm so grateful I stuck with them. 

                                                                                                                                                                                              God Bless!

                                                                                                                                                                                              Alana

                                                                                                                                                                                            LibbyinVA
                                                                                                                                                                                            Participant
                                                                                                                                                                                              You have been in my thoughts and prayers, Alana. How are you doing?

                                                                                                                                                                                              LibbyinVA

                                                                                                                                                                                              LibbyinVA
                                                                                                                                                                                              Participant
                                                                                                                                                                                                You have been in my thoughts and prayers, Alana. How are you doing?

                                                                                                                                                                                                LibbyinVA

                                                                                                                                                                                                LibbyinVA
                                                                                                                                                                                                Participant
                                                                                                                                                                                                  You have been in my thoughts and prayers, Alana. How are you doing?

                                                                                                                                                                                                  LibbyinVA

                                                                                                                                                                                                  DeniseK
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                    Did I say discount the the info?  NO…I said it's her decision to make her medical choices.  We may all have Melanoma but our battles are all different.  Sharing our experiences, or offering suggestions is valuable information.

                                                                                                                                                                                                    "Specialize?"  Why just because you have it?  Or had it?  Maybe educated but there are NO "Melanoma Specialist" on this site that is licensed as a physician that can offer an internet diagnosis, medical advice, or treatment.  

                                                                                                                                                                                                    So sorry Alana, I hope you can filter through to the compassionate people who can help support you.  

                                                                                                                                                                                                    xxxooo

                                                                                                                                                                                                    DeniseK
                                                                                                                                                                                                    Participant

                                                                                                                                                                                                      Did I say discount the the info?  NO…I said it's her decision to make her medical choices.  We may all have Melanoma but our battles are all different.  Sharing our experiences, or offering suggestions is valuable information.

                                                                                                                                                                                                      "Specialize?"  Why just because you have it?  Or had it?  Maybe educated but there are NO "Melanoma Specialist" on this site that is licensed as a physician that can offer an internet diagnosis, medical advice, or treatment.  

                                                                                                                                                                                                      So sorry Alana, I hope you can filter through to the compassionate people who can help support you.  

                                                                                                                                                                                                      xxxooo

                                                                                                                                                                                                      DeniseK
                                                                                                                                                                                                      Participant

                                                                                                                                                                                                        Did I say discount the the info?  NO…I said it's her decision to make her medical choices.  We may all have Melanoma but our battles are all different.  Sharing our experiences, or offering suggestions is valuable information.

                                                                                                                                                                                                        "Specialize?"  Why just because you have it?  Or had it?  Maybe educated but there are NO "Melanoma Specialist" on this site that is licensed as a physician that can offer an internet diagnosis, medical advice, or treatment.  

                                                                                                                                                                                                        So sorry Alana, I hope you can filter through to the compassionate people who can help support you.  

                                                                                                                                                                                                        xxxooo

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                                                                                                                                                                                                    About the MRF Patient Forum

                                                                                                                                                                                                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                                                                                                                                                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.