The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Does this sound correct? The tale continues

Forums General Melanoma Community Does this sound correct? The tale continues

  • Post
    archer
    Participant

      For those of you following our journey, this is the latest yesterday afternoon.You remember that on Tuesday we went to see our first onc.  You all let me know loud and clear that my wife and I should see a specialist.

      For those of you following our journey, this is the latest yesterday afternoon.You remember that on Tuesday we went to see our first onc.  You all let me know loud and clear that my wife and I should see a specialist.

      We mentioned to the first onc and remember that was the first time ever being to an onc, for his opinion on a second opinion.  He said if he were in our shoes he would understand doing this.  He even said that there is only one in the whole midwest and he was located at Mayo Clinic.  He went on to say he wasn't sure how "hands on" this specialist was….  So, after he left they came in, took her blood and then on the way out talked to her about insurance and having to get two pre-approvals and that she thought the machine was booked all of next week.  Ok with that.. Remember, we do have an appt on Tuesday, at a Cancer Center and with a specialist.  Name and center taken from this website.  OK  U of Iowa is the center

      Now, yesterday afternoon, the first onc's PA calls my wife at her work and asks her if they were still to proceed on her case because the specialist we are going to requested her records.  She reminded her of the conversation with the onc where he stated no problem with him and a second opinion.  The PA then went on to ask my wife, "should we still proceed to schedule the PET"  My wife, confused by this call, having to take this call at work said, "yes" with the understanding that we will cancel if we are happy with the specialist.  Here is the kicker and the main question.  A small history.  They are trying to find the main melanoma and 18 months ago she had "basil cell" removed about 2 – 3 inches away from the underarm where she found the lump (spindle cell).  There seems to be a strong suspicion that the basil cell might  have been misdiagnosed and that would then be the primary.

       So, the last statement from the PA was, what is the other onc name:  my wife wasn't sure and she told the PA that.  Then the PA said, well the other doctor has also requested the stain from the dermatologist that removed the basil cell and we are NOT sure we are going to send this to them. We feel that our local pathologist should review that stain since the lump was first sent to her.  (this is the same lab that called when they first got the biopsy and told us that they were going to sen it to Mayo or the place we are going Tuesday)

      Does this seem like normal treatment for my wife to grill her with this and then to mention they are NOT going to send her stain to the specialist we are see Tuesday?  I thought this belonged to my wife and she could have it sent anywhere she chooses. So many questions, so many thoughts.  Thank you.

      Loading spinner
    Viewing 11 reply threads
    • Replies
        lhaley
        Participant

          Wow, I'm sorry your wife is having so many stressors that aren't necessary! 

          Have her call the specialists office you are going to . Tell them the problems and have them call and tell them that this isn't a choice.  Also, the specialist might want his hospital to do the PET/CT. If you do have it done locally make sure that your wife gets a copy of the actual scan on CD and take it with you.  It is normal for this type of scan to have to be pr-approved.

          When I had my scans done locally it took several days for them to be read. When I go to Charlotte they do the scans in the morning and the Dr. has the results by my appointment in the afternoon.  Good chance if you have it done at home he will not have the results by the time you see him.  This is important for him to know how to proceed! 

          When I had one of my last recurrances I had the scans done at home. They promised they would have them read by the time of my appointment with the surgeon in Charlotte.  I got there and they didn't have the results. We set up the surgery. I found out a few days later that another area lit up also. Surgery was cancelled and then I had to have the second area biopsied. The surgery was then rescheduled because of needing 2 hours in OR I now needed almost 5 hours.  Precious time was wasted because of the scans not being read.   Now I have everything done in Charlotte. It's worth the drive.

          It's not easy but please tell your wife not to sweat the small stuff.  They will reread her slides, even if they take a bit longer to get there.

          Linda

          Loading spinner
            archer
            Participant

              Thank you Linda.  We both want her to have the UI do her scans anyway.  They will probably do them sooner than the first place can get it done anyway.  I just thought is was rude to put her on the spot like this and act like they didn't like it we were seeking a second opinion. Hopefully, we will like this new guy.  

              Loading spinner
              Carol Taylor
              Participant

                Archer,

                My vote is also to get everything done at one place.  That's the setup anyway at your larger places that are really geared for this.  And I learned early on, that they prefer doing their own tests even if you've had the same test done in 10 places already (an exaggeration I know).

                In your wife's case, since the stain in question goes back to the beginning of her history, that obviously can't be redone.  The earlier suggestion to let the office of the upcoming specialist handle it is a good one.  They're the ones who know all the legalities, protocols, and procedures.  Your wife doesn't need this particular battle added to the list.

                PS, we all have to deal with a little rudeness in life, even in dr offices sometimes.  Don't let it rattle your cage.

                Sometimes it's the patients who get rude.  During one of my recent onc surgeon appts, the dr was running about 3 hours behind, it's already late afternoon, I'm in my little waiting room, and we ALL hear this voice in the hall, "Where is everybody???!!!!  I'VE been waiting four hours and haven't seen a soul!  I had an appointment and shouldn't have to wait like this!"

                But that goes to show you the time they'll take with patients.  Don't be surprised if you have unusually long waits at the specialist, because they do take all the time that's needed and they'll do that for you and your wife as well.

                Thanks for keeping us updated.

                Carol

                Loading spinner
                archer
                Participant

                  Carol,  thanks again for the reply.  That is sound advice and we will take it to heart.  

                  Loading spinner
                  archer
                  Participant

                    Carol,  thanks again for the reply.  That is sound advice and we will take it to heart.  

                    Loading spinner
                    Carol Taylor
                    Participant

                      Archer,

                      My vote is also to get everything done at one place.  That's the setup anyway at your larger places that are really geared for this.  And I learned early on, that they prefer doing their own tests even if you've had the same test done in 10 places already (an exaggeration I know).

                      In your wife's case, since the stain in question goes back to the beginning of her history, that obviously can't be redone.  The earlier suggestion to let the office of the upcoming specialist handle it is a good one.  They're the ones who know all the legalities, protocols, and procedures.  Your wife doesn't need this particular battle added to the list.

                      PS, we all have to deal with a little rudeness in life, even in dr offices sometimes.  Don't let it rattle your cage.

                      Sometimes it's the patients who get rude.  During one of my recent onc surgeon appts, the dr was running about 3 hours behind, it's already late afternoon, I'm in my little waiting room, and we ALL hear this voice in the hall, "Where is everybody???!!!!  I'VE been waiting four hours and haven't seen a soul!  I had an appointment and shouldn't have to wait like this!"

                      But that goes to show you the time they'll take with patients.  Don't be surprised if you have unusually long waits at the specialist, because they do take all the time that's needed and they'll do that for you and your wife as well.

                      Thanks for keeping us updated.

                      Carol

                      Loading spinner
                      archer
                      Participant

                        Thank you Linda.  We both want her to have the UI do her scans anyway.  They will probably do them sooner than the first place can get it done anyway.  I just thought is was rude to put her on the spot like this and act like they didn't like it we were seeking a second opinion. Hopefully, we will like this new guy.  

                        Loading spinner
                      lhaley
                      Participant

                        Wow, I'm sorry your wife is having so many stressors that aren't necessary! 

                        Have her call the specialists office you are going to . Tell them the problems and have them call and tell them that this isn't a choice.  Also, the specialist might want his hospital to do the PET/CT. If you do have it done locally make sure that your wife gets a copy of the actual scan on CD and take it with you.  It is normal for this type of scan to have to be pr-approved.

                        When I had my scans done locally it took several days for them to be read. When I go to Charlotte they do the scans in the morning and the Dr. has the results by my appointment in the afternoon.  Good chance if you have it done at home he will not have the results by the time you see him.  This is important for him to know how to proceed! 

                        When I had one of my last recurrances I had the scans done at home. They promised they would have them read by the time of my appointment with the surgeon in Charlotte.  I got there and they didn't have the results. We set up the surgery. I found out a few days later that another area lit up also. Surgery was cancelled and then I had to have the second area biopsied. The surgery was then rescheduled because of needing 2 hours in OR I now needed almost 5 hours.  Precious time was wasted because of the scans not being read.   Now I have everything done in Charlotte. It's worth the drive.

                        It's not easy but please tell your wife not to sweat the small stuff.  They will reread her slides, even if they take a bit longer to get there.

                        Linda

                        Loading spinner
                        Ranisa
                        Participant

                          I am really hoping that the PA just comes across wrong.  I think legalally speaking the slides of your wifes first removal belong to the medical practice.  However I also believe that if you request them to be sent on they should be….they do get sent back.  The new place doesn't keep them.  So what is the big deal!?!?  Pressure, pressure, pressure.  We are the patient, if you end up having to call the patient advicate for the hospital, do it.  If they want the local pathologist to review them again, great do it, then send them on.  We have a right to have a second and third opinion….our ins company has the right not to pay for it, but I am almost positive they can't refuse to sent them.  I have had my original mole sent to 4 different labs.  My opinion is that if a doctor is confident that he is doing the right thing he should be confident that the second opinion will be the same as his…and if not, being a doctor his best interest need to be with the patient…even if it is just to ease the worry.  Sorry if I ramble…

                          Loading spinner
                            archer
                            Participant

                              I agree.  I will look into this for her.  Thanks for replying.

                              Loading spinner
                              archer
                              Participant

                                I agree.  I will look into this for her.  Thanks for replying.

                                Loading spinner
                              Ranisa
                              Participant

                                I am really hoping that the PA just comes across wrong.  I think legalally speaking the slides of your wifes first removal belong to the medical practice.  However I also believe that if you request them to be sent on they should be….they do get sent back.  The new place doesn't keep them.  So what is the big deal!?!?  Pressure, pressure, pressure.  We are the patient, if you end up having to call the patient advicate for the hospital, do it.  If they want the local pathologist to review them again, great do it, then send them on.  We have a right to have a second and third opinion….our ins company has the right not to pay for it, but I am almost positive they can't refuse to sent them.  I have had my original mole sent to 4 different labs.  My opinion is that if a doctor is confident that he is doing the right thing he should be confident that the second opinion will be the same as his…and if not, being a doctor his best interest need to be with the patient…even if it is just to ease the worry.  Sorry if I ramble…

                                Loading spinner
                                KellieSue
                                Participant

                                  There is not just one specialist in the Midwest for melanoma at the Mayo! Cause I see one on U of Iowa!

                                  I think they are jerking you around where you are currently going and I'm glad you chose to see someone for a second opinion.

                                  Email me if you'd like. [email protected]

                                  Kellie(from Iowa) Stage IV

                                  Loading spinner
                                    archer
                                    Participant

                                      Thank you Kellie,   We will email you for sure

                                      Loading spinner
                                      archer
                                      Participant

                                        Thank you Kellie,   We will email you for sure

                                        Loading spinner
                                      KellieSue
                                      Participant

                                        There is not just one specialist in the Midwest for melanoma at the Mayo! Cause I see one on U of Iowa!

                                        I think they are jerking you around where you are currently going and I'm glad you chose to see someone for a second opinion.

                                        Email me if you'd like. [email protected]

                                        Kellie(from Iowa) Stage IV

                                        Loading spinner
                                        washoegal
                                        Participant

                                          I am slightly confused in this tale.  Is the second Onc the melanoma specialist or would there be in fact a third doctor involved?  If the second Onc is the mel specialist and you like him then stick with one doctor.  But if you are still searching for a mel specialist, put on the breaks here.  You'll have slides and scans floating all over the place, you'll have a very difficult time pull you're history together.  So please, stop a day or two and just figure out what the two of you want to do as the next step.

                                           

                                          Mary

                                          Stage 3

                                          Loading spinner
                                            archer
                                            Participant

                                              Hi Mary,

                                              To clarify, we have only been to the local oncologist once, two days ago.  We are moving away from him and seeing a specialist this Tuesday.   Unless there is some sort of disaster, we are planning on staying with the specialist.  Sorry about the confusion and thanks for your opinions.

                                              Loading spinner
                                              washoegal
                                              Participant

                                                Archer, Good than it sounds like the specialist is on the ball and requesting everything ahead of time.  Hopefully he gets what he needs.  Regarding the stains, if they are still available you should be able to pick them up.  That's what I did at least. 

                                                Mary

                                                Loading spinner
                                                Carol Taylor
                                                Participant

                                                  About the stains, I have a good friend who manages a lab at a small-mid-sized hospital in NC and I emailed him this morning about the issue of the stain, who owns what.  I just got his reply so I'm copying/pasting it just FYI:

                                                  To answer your question I spoke with one of the pathologists here at Wilson , and she said that that particular question of ownership is being discussed in the courts. The pathologist is a dormitory for all tissue, slides and stains and they are responsible for them; however the patient can request a second opinion.  Here the pathology group will send a slide for a second opinion if there are multiply slides and if the patient is going to pay for it.  Also the patients can pickup the slides to take to another physician if they take legal responsibility for them.  I guess it all depends on the situation.  I know that here if the pathologists are not sure of a case they will send it themselves to another pathology group to confirm it.  I hope this helps but to tell you the truth it is a gray area.  The primary physician would not be the one with the slides in the first place it would be sent to a pathology group for confirmation.

                                                  Carol

                                                  Loading spinner
                                                  archer
                                                  Participant

                                                    Thank you Carol for doing this.  I guess we just have to wait until Tuesday meeting with the specialist to see if they sent them to him.  I really appreciate all the effort and help.  Thanks again.  

                                                    Loading spinner
                                                    archer
                                                    Participant

                                                      Thank you Carol for doing this.  I guess we just have to wait until Tuesday meeting with the specialist to see if they sent them to him.  I really appreciate all the effort and help.  Thanks again.  

                                                      Loading spinner
                                                      Carol Taylor
                                                      Participant

                                                        About the stains, I have a good friend who manages a lab at a small-mid-sized hospital in NC and I emailed him this morning about the issue of the stain, who owns what.  I just got his reply so I'm copying/pasting it just FYI:

                                                        To answer your question I spoke with one of the pathologists here at Wilson , and she said that that particular question of ownership is being discussed in the courts. The pathologist is a dormitory for all tissue, slides and stains and they are responsible for them; however the patient can request a second opinion.  Here the pathology group will send a slide for a second opinion if there are multiply slides and if the patient is going to pay for it.  Also the patients can pickup the slides to take to another physician if they take legal responsibility for them.  I guess it all depends on the situation.  I know that here if the pathologists are not sure of a case they will send it themselves to another pathology group to confirm it.  I hope this helps but to tell you the truth it is a gray area.  The primary physician would not be the one with the slides in the first place it would be sent to a pathology group for confirmation.

                                                        Carol

                                                        Loading spinner
                                                        washoegal
                                                        Participant

                                                          Archer, Good than it sounds like the specialist is on the ball and requesting everything ahead of time.  Hopefully he gets what he needs.  Regarding the stains, if they are still available you should be able to pick them up.  That's what I did at least. 

                                                          Mary

                                                          Loading spinner
                                                          archer
                                                          Participant

                                                            Hi Mary,

                                                            To clarify, we have only been to the local oncologist once, two days ago.  We are moving away from him and seeing a specialist this Tuesday.   Unless there is some sort of disaster, we are planning on staying with the specialist.  Sorry about the confusion and thanks for your opinions.

                                                            Loading spinner
                                                          washoegal
                                                          Participant

                                                            I am slightly confused in this tale.  Is the second Onc the melanoma specialist or would there be in fact a third doctor involved?  If the second Onc is the mel specialist and you like him then stick with one doctor.  But if you are still searching for a mel specialist, put on the breaks here.  You'll have slides and scans floating all over the place, you'll have a very difficult time pull you're history together.  So please, stop a day or two and just figure out what the two of you want to do as the next step.

                                                             

                                                            Mary

                                                            Stage 3

                                                            Loading spinner
                                                            Charlie S
                                                            Participant

                                                              Hello Archer,

                                                              I have been following your posts with some interest and would like to offer some observations and "tools" for you and your wife if I may.

                                                              First, though not bragging nor complaining, but only as a frame of reference,  I was diagnosed in 1987 Stage IIII metastatic melanoma with an unknown primary that first presented as a lump, had surgery; and nine years later recurred as Stage IV in 1996, have had several recurrences since then and still have active disease as a Stage IV patient now into my 15th year and 24th overall with melanoma.  Additionally, I have been an active participant in this forum reading, listening and interacting  for well over ten years all the while watching people living and dying.

                                                              That said,, what follows is only  my opinion based upon my experience, and as such, is just like a rectum……………….everyone has one…………………and this one is going to be long

                                                              The word/diagnosis "cancer" immediately puts people in crisis mode and it is very easy to become deaf, dumb and blind while emotions run wild.  This is normal.  It sounds like a death sentence, accurate information seems scarce and the world is suddenly driven by medical appointments, confusing language and each word, nuance and medical conversation seemingly only leads to more questions and confusion.  This too is normal, because circumstances appear to be beyond control.  But they are not.

                                                              There is no cure for Stage III melanoma and beyond; durable remission yes, but to date there is no clinical or scientific evidence that supports the word cure for melanoma beyond Stage III.  Any doctor who tells you otherwise is not speaking from evidence based science.  That is not to say melanoma is a death sentence, because it is not; durable remission can and does occur.

                                                              Get a thick skin, set emotions aside and above all, work the problem.  Not all clinical settings are ideal: some doctors simply don't know how to articulate and their  nurses may seem distant by following the lead of their boss.  Maybe,,,,,,,,,,,,,,remember "cancer" can shut down logic and how you perceive it.

                                                              Get a three ring binder and looooooooooooooooooots of paper.  Every time you go to an appointment, make an appointment, receive or make a phone call, receive a report or ask for an inquiry, write it down, document it and put a hard copy in your three ring binder.  Every time you see a doc,, ask to see a doc or receive results from a doc, or call your insurance company, DOCUMENT it in your three ring binder.  Include a diary, if you will, of your notes and thoughts with every interaction relative to the process.  Get a CD of all scans and put them in your binder.  Put a copy of each radiology report in your binder………………every blood work report………everything and ALWAYS write your diary entry and then ALWAYS have a written list of questions before each doc appointment, insurance call so you can have your thoughts organized in advance, and you can then refer back to your binder to make sure everything was answered , you have direction, or if you need additional followup.

                                                              Anytime you call or visit anyone relative to melanoma, always have a list of questions for them before you speak to them and after, make sure the questions were answered, if not, there is more work to do..  Given time, YOU will begin to drive the conversation and information instead of being driven.

                                                              Drive, do not be driven.

                                                              Some basics:  Your wife has not been completely Staged as a patient, so any conversation about treatments is really mental masturbation and premature.  Your wife needs to be clinically Staged…………….any doctor that does not do that or understand that should be eliminated as a resource because they are not following the medically accepted "decision tree" of patient staging.

                                                              Though not all inclusive, there should be blood work that specifically highlights LDH levels, though they are not conclusive, they ca n be indicative.

                                                              Any CT scan should have at least a 3MM "slice".  To explain, picture a CT scan as a loaf of bread.  The thicker the "s;ice", the less revealing.  If you wanted to know what was inside a loaf of bread, the sand which slice )3mm) will tell you more than the Texas Toast Slice (5-7mm)

                                                              The original [pathology is clearly in question and should be reviewed by a derma path.  This is not your battle to fight.  Find a derma path, sign the consent forms and let them get the slides.  No need to explain to the previous providers.

                                                              Without elaboration, I have some experience in Iowa and I would advise caution about your esteemed neighbor to the North for a second opinion.  They are probably out of network, have expensive co-pays and as an example wanted to "wait and see" when in fact there were active brain mets at the time of someone I escorted there.  They were just too lazy and over confident in their reputation

                                                              Intentionally, this was long, because I sense your frustration, fear, trepidation and uncertainty.

                                                              What I would like to do is empower you to grab the wheel and hopefully have maybe given you some driving gloves.

                                                              Cheers,

                                                              Charlie S

                                                               

                                                               

                                                               

                                                               

                                                              Loading spinner
                                                                archer
                                                                Participant

                                                                  Hi Charlie,

                                                                  WOW, there are a lot of powerful suggestions in your letter and I am above grateful for you taking the time to share them. I agree and will be doing these things beginning immediately.  For what it is worth, we are not going North.  

                                                                  You are right about my (our) fears and all the other confusion and runaway emotions.  I can honestly say that nights and early mornings are my worse time right now.  Don't know why but it is.  (not so much for the patient, my wife. Plus something that is beginning to emerge for my wife is the fact that she has a strong family ties and many many friends and many of those friends called last night.  She probably has repeated her story to countless people that were asking her yesterday.  I think that is theraputic for her but we decided to take a time out for awhile with each other. (meaning we have other things to talk about)  There seems to be a lot of new directions going on with all of this so newly emerging in our lives.

                                                                  So, again, thank you for the "gloves" and I just started the ignition.

                                                                  Loading spinner
                                                                  dian in spokane
                                                                  Participant

                                                                    hi archer,

                                                                    Just as a side note…if explaining everything to everyone begins to be too much of a burden for your wife, you might want to look into the Caring Bridge website. It's a way for friends and family to follow  what's going on, a blog, which you or some other designated person (or your wife) can update and others can log on and find out what is going on.

                                                                    dian

                                                                    Loading spinner
                                                                    dian in spokane
                                                                    Participant

                                                                      hi archer,

                                                                      Just as a side note…if explaining everything to everyone begins to be too much of a burden for your wife, you might want to look into the Caring Bridge website. It's a way for friends and family to follow  what's going on, a blog, which you or some other designated person (or your wife) can update and others can log on and find out what is going on.

                                                                      dian

                                                                      Loading spinner
                                                                      archer
                                                                      Participant

                                                                        Hi Charlie,

                                                                        WOW, there are a lot of powerful suggestions in your letter and I am above grateful for you taking the time to share them. I agree and will be doing these things beginning immediately.  For what it is worth, we are not going North.  

                                                                        You are right about my (our) fears and all the other confusion and runaway emotions.  I can honestly say that nights and early mornings are my worse time right now.  Don't know why but it is.  (not so much for the patient, my wife. Plus something that is beginning to emerge for my wife is the fact that she has a strong family ties and many many friends and many of those friends called last night.  She probably has repeated her story to countless people that were asking her yesterday.  I think that is theraputic for her but we decided to take a time out for awhile with each other. (meaning we have other things to talk about)  There seems to be a lot of new directions going on with all of this so newly emerging in our lives.

                                                                        So, again, thank you for the "gloves" and I just started the ignition.

                                                                        Loading spinner
                                                                      Charlie S
                                                                      Participant

                                                                        Hello Archer,

                                                                        I have been following your posts with some interest and would like to offer some observations and "tools" for you and your wife if I may.

                                                                        First, though not bragging nor complaining, but only as a frame of reference,  I was diagnosed in 1987 Stage IIII metastatic melanoma with an unknown primary that first presented as a lump, had surgery; and nine years later recurred as Stage IV in 1996, have had several recurrences since then and still have active disease as a Stage IV patient now into my 15th year and 24th overall with melanoma.  Additionally, I have been an active participant in this forum reading, listening and interacting  for well over ten years all the while watching people living and dying.

                                                                        That said,, what follows is only  my opinion based upon my experience, and as such, is just like a rectum……………….everyone has one…………………and this one is going to be long

                                                                        The word/diagnosis "cancer" immediately puts people in crisis mode and it is very easy to become deaf, dumb and blind while emotions run wild.  This is normal.  It sounds like a death sentence, accurate information seems scarce and the world is suddenly driven by medical appointments, confusing language and each word, nuance and medical conversation seemingly only leads to more questions and confusion.  This too is normal, because circumstances appear to be beyond control.  But they are not.

                                                                        There is no cure for Stage III melanoma and beyond; durable remission yes, but to date there is no clinical or scientific evidence that supports the word cure for melanoma beyond Stage III.  Any doctor who tells you otherwise is not speaking from evidence based science.  That is not to say melanoma is a death sentence, because it is not; durable remission can and does occur.

                                                                        Get a thick skin, set emotions aside and above all, work the problem.  Not all clinical settings are ideal: some doctors simply don't know how to articulate and their  nurses may seem distant by following the lead of their boss.  Maybe,,,,,,,,,,,,,,remember "cancer" can shut down logic and how you perceive it.

                                                                        Get a three ring binder and looooooooooooooooooots of paper.  Every time you go to an appointment, make an appointment, receive or make a phone call, receive a report or ask for an inquiry, write it down, document it and put a hard copy in your three ring binder.  Every time you see a doc,, ask to see a doc or receive results from a doc, or call your insurance company, DOCUMENT it in your three ring binder.  Include a diary, if you will, of your notes and thoughts with every interaction relative to the process.  Get a CD of all scans and put them in your binder.  Put a copy of each radiology report in your binder………………every blood work report………everything and ALWAYS write your diary entry and then ALWAYS have a written list of questions before each doc appointment, insurance call so you can have your thoughts organized in advance, and you can then refer back to your binder to make sure everything was answered , you have direction, or if you need additional followup.

                                                                        Anytime you call or visit anyone relative to melanoma, always have a list of questions for them before you speak to them and after, make sure the questions were answered, if not, there is more work to do..  Given time, YOU will begin to drive the conversation and information instead of being driven.

                                                                        Drive, do not be driven.

                                                                        Some basics:  Your wife has not been completely Staged as a patient, so any conversation about treatments is really mental masturbation and premature.  Your wife needs to be clinically Staged…………….any doctor that does not do that or understand that should be eliminated as a resource because they are not following the medically accepted "decision tree" of patient staging.

                                                                        Though not all inclusive, there should be blood work that specifically highlights LDH levels, though they are not conclusive, they ca n be indicative.

                                                                        Any CT scan should have at least a 3MM "slice".  To explain, picture a CT scan as a loaf of bread.  The thicker the "s;ice", the less revealing.  If you wanted to know what was inside a loaf of bread, the sand which slice )3mm) will tell you more than the Texas Toast Slice (5-7mm)

                                                                        The original [pathology is clearly in question and should be reviewed by a derma path.  This is not your battle to fight.  Find a derma path, sign the consent forms and let them get the slides.  No need to explain to the previous providers.

                                                                        Without elaboration, I have some experience in Iowa and I would advise caution about your esteemed neighbor to the North for a second opinion.  They are probably out of network, have expensive co-pays and as an example wanted to "wait and see" when in fact there were active brain mets at the time of someone I escorted there.  They were just too lazy and over confident in their reputation

                                                                        Intentionally, this was long, because I sense your frustration, fear, trepidation and uncertainty.

                                                                        What I would like to do is empower you to grab the wheel and hopefully have maybe given you some driving gloves.

                                                                        Cheers,

                                                                        Charlie S

                                                                         

                                                                         

                                                                         

                                                                         

                                                                        Loading spinner
                                                                        LynnLuc
                                                                        Participant

                                                                          Mayo is a great hospital but while I was diagnosed from my biopsy there, I had a onc who specialty was breast cancer…and gave me 6- 9 months …they also could not recommend any trials other than leuline injections…They are not  a great melanoma hospital….I checked out Fred Hutchinson in Seattle, then the NIH and finally landed at Moffitt in Florida…I had a great surgeon at Mayo and it was that thoracotomy that finally gave me my NED …I was told at the NIH it would be back in a couple months and then they would have a trial for me…I didn't want to wait for it to come back…so I went to Moffitt where I was told if I didn't do something I had a 99% chance it would come back…so I did a vaccine trial with peptides and MDX 1106…been NED for over 1 year now…I would have did immunotherapy at Fred Hutchinson but after the surgery at Mayo I didn't have measurable disease and the trial they cloned my T cells for 4 months needed that…so they froze done my t cells until and if I have measureable disease and said they would use them on me at that time….

                                                                          Loading spinner
                                                                          LynnLuc
                                                                          Participant

                                                                            Mayo is a great hospital but while I was diagnosed from my biopsy there, I had a onc who specialty was breast cancer…and gave me 6- 9 months …they also could not recommend any trials other than leuline injections…They are not  a great melanoma hospital….I checked out Fred Hutchinson in Seattle, then the NIH and finally landed at Moffitt in Florida…I had a great surgeon at Mayo and it was that thoracotomy that finally gave me my NED …I was told at the NIH it would be back in a couple months and then they would have a trial for me…I didn't want to wait for it to come back…so I went to Moffitt where I was told if I didn't do something I had a 99% chance it would come back…so I did a vaccine trial with peptides and MDX 1106…been NED for over 1 year now…I would have did immunotherapy at Fred Hutchinson but after the surgery at Mayo I didn't have measurable disease and the trial they cloned my T cells for 4 months needed that…so they froze done my t cells until and if I have measureable disease and said they would use them on me at that time….

                                                                            Loading spinner
                                                                        Viewing 11 reply threads
                                                                        • You must be logged in to reply to this topic.
                                                                        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.