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How long can it take to get a freaking doctors appointment! Newly diagnosed stage IV

Forums Mucosal Melanoma Community How long can it take to get a freaking doctors appointment! Newly diagnosed stage IV

  • Post
    lrkg1234
    Participant

      Hello all ~Just needing a minute to vent. 

      My husband, Scott was diagnosed with stage IV mucosal melanoma on the 8th of this month.  I have been trying to get a doctors appointment at a good cancer center ever since then.  I have jumped through hoops and ran in circles all this time.  I am on the phone non-stop and nothing has happened. 

      Hello all ~Just needing a minute to vent. 

      My husband, Scott was diagnosed with stage IV mucosal melanoma on the 8th of this month.  I have been trying to get a doctors appointment at a good cancer center ever since then.  I have jumped through hoops and ran in circles all this time.  I am on the phone non-stop and nothing has happened. 

      First Dana Farber set us up an appointment after 3 days of waiting with the wrong department even though I know I asked for Melanoma because the receptionist needed to know how to spell mucosal.  That has slowed us down and I don't have an official appoinment yet because we are having trouble with getting them the pathology slides.  Johns Hopkins has the slides and the other set of slides was sent to the place that tests for BRAF & C-Kit.  Will they give those back to the lab when they are done? 

      Johns Hopkins got his records and slides on Monday and have been reviewing them since.  I plan to call again tomorrow.  Once they are done with the slides we have to get them to Dana Farber. 

      You wait and wait.  People promise they will call you within 24 hours, does not happen.  Exhausting. 

      No one will see you without these slides and it really slows things down. 

      I'm so worried that it will probably be full month after diagnosis before we even begin any type of treatment.  I don't want the cancer to spread any further. 

      Did anyone else have these problems?  Any tips?  Does a month seem to long to wait or is this typical? 

      Any advice?  Lisa (Scotts wife)

    Viewing 20 reply threads
    • Replies
        natasha
        Participant

          Hi!

          I was waiting for 2 weeks to get diagnosys from pathologist ,this is normal .

          After what I waited for about 2 month for surgery ,I thought every day how my untreated melanoma is spreading acsross my body .

          I am in England but it looks like the same waiting game as in USA.

          natasha
          Participant

            Hi!

            I was waiting for 2 weeks to get diagnosys from pathologist ,this is normal .

            After what I waited for about 2 month for surgery ,I thought every day how my untreated melanoma is spreading acsross my body .

            I am in England but it looks like the same waiting game as in USA.

            natasha
            Participant

              Hi!

              I was waiting for 2 weeks to get diagnosys from pathologist ,this is normal .

              After what I waited for about 2 month for surgery ,I thought every day how my untreated melanoma is spreading acsross my body .

              I am in England but it looks like the same waiting game as in USA.

              washoegal
              Participant

                I got my slides and brought them to my first appoint with me.    I called the hospital that had the slides, said I was picking them up and that was that!  (do the same with the records if you have to, say you'll pick them up in 72 hours if they aren't ready say you'll wait or you'll make the copies yourself). Yes, I have had problems with returned calls.  Sometime the squeaky wheel works. 

                Each facility has a different wait time, it wall depends on how busy they are.  It seems to vary from a couple weeks to a couple of months so you are about in the middle.  Try you best to be nice to the person on the other end of the phone and realise it's not their fault.  Ask to be put on a wait lit for a canceled appointment.  I use the pester and apologize approach.  Seems to work for me.

                Good Luck,

                Mary

                Stage 3

                washoegal
                Participant

                  I got my slides and brought them to my first appoint with me.    I called the hospital that had the slides, said I was picking them up and that was that!  (do the same with the records if you have to, say you'll pick them up in 72 hours if they aren't ready say you'll wait or you'll make the copies yourself). Yes, I have had problems with returned calls.  Sometime the squeaky wheel works. 

                  Each facility has a different wait time, it wall depends on how busy they are.  It seems to vary from a couple weeks to a couple of months so you are about in the middle.  Try you best to be nice to the person on the other end of the phone and realise it's not their fault.  Ask to be put on a wait lit for a canceled appointment.  I use the pester and apologize approach.  Seems to work for me.

                  Good Luck,

                  Mary

                  Stage 3

                  washoegal
                  Participant

                    I got my slides and brought them to my first appoint with me.    I called the hospital that had the slides, said I was picking them up and that was that!  (do the same with the records if you have to, say you'll pick them up in 72 hours if they aren't ready say you'll wait or you'll make the copies yourself). Yes, I have had problems with returned calls.  Sometime the squeaky wheel works. 

                    Each facility has a different wait time, it wall depends on how busy they are.  It seems to vary from a couple weeks to a couple of months so you are about in the middle.  Try you best to be nice to the person on the other end of the phone and realise it's not their fault.  Ask to be put on a wait lit for a canceled appointment.  I use the pester and apologize approach.  Seems to work for me.

                    Good Luck,

                    Mary

                    Stage 3

                    jmmm
                    Participant
                      Vent away! I’ve been arguing with doctor offices and the insurance company for 18 months for my husband (stage 4 since 1/11). It’s so frustrating! It does take a long time to get that first appointment. Unfortunately, after you get in, you’ll probably have to wait for the insurance to approve any treatment (which can take a couple weeks or more). If you know the doctor you’re trying to make an appointment for, that helps. I’ve learned that if you’re polite, but insistent, it usually helps. I’ve lost it a few times and yelled at whoever is on the phone…that doesn’t help:). One time i finally got a pharmacist to help when I politely explained to her that A) she did not understand what I was going through, B) my husband is going to die anyway, but without this medicine, he will die sooner, and C). (my pity card)…I have three little boys and I don’t want them to watch their Daddy die right now. Just keep calling each day. Keep track of who you talk to and ask for them the next time. A few tears never hurts. Hang in there and keep advocating for him…it will be the hardest, but most important job you’ll ever do. I joke that if i got paid for all the time I spend on hold, I could afford to pay all the medical bills:)
                      jmmm
                      Participant
                        Vent away! I’ve been arguing with doctor offices and the insurance company for 18 months for my husband (stage 4 since 1/11). It’s so frustrating! It does take a long time to get that first appointment. Unfortunately, after you get in, you’ll probably have to wait for the insurance to approve any treatment (which can take a couple weeks or more). If you know the doctor you’re trying to make an appointment for, that helps. I’ve learned that if you’re polite, but insistent, it usually helps. I’ve lost it a few times and yelled at whoever is on the phone…that doesn’t help:). One time i finally got a pharmacist to help when I politely explained to her that A) she did not understand what I was going through, B) my husband is going to die anyway, but without this medicine, he will die sooner, and C). (my pity card)…I have three little boys and I don’t want them to watch their Daddy die right now. Just keep calling each day. Keep track of who you talk to and ask for them the next time. A few tears never hurts. Hang in there and keep advocating for him…it will be the hardest, but most important job you’ll ever do. I joke that if i got paid for all the time I spend on hold, I could afford to pay all the medical bills:)
                        jmmm
                        Participant
                          Vent away! I’ve been arguing with doctor offices and the insurance company for 18 months for my husband (stage 4 since 1/11). It’s so frustrating! It does take a long time to get that first appointment. Unfortunately, after you get in, you’ll probably have to wait for the insurance to approve any treatment (which can take a couple weeks or more). If you know the doctor you’re trying to make an appointment for, that helps. I’ve learned that if you’re polite, but insistent, it usually helps. I’ve lost it a few times and yelled at whoever is on the phone…that doesn’t help:). One time i finally got a pharmacist to help when I politely explained to her that A) she did not understand what I was going through, B) my husband is going to die anyway, but without this medicine, he will die sooner, and C). (my pity card)…I have three little boys and I don’t want them to watch their Daddy die right now. Just keep calling each day. Keep track of who you talk to and ask for them the next time. A few tears never hurts. Hang in there and keep advocating for him…it will be the hardest, but most important job you’ll ever do. I joke that if i got paid for all the time I spend on hold, I could afford to pay all the medical bills:)
                          lrkg1234
                          Participant

                            Wow. 

                            I'm not the only one that has these problems. 

                            I was told that I could never have the slides in my posession by the receptionist on the phone today.  She said they were treated as a specimen?? I said ok, but I don't really get it.  We have no more slides, but if I ever get the chance then I am going to get my hands on a set. 

                            I am also going to get a copy of all the medical records so that I can do the faxing myself. 

                            Thanks for all the help and support.  This group has been so good.

                            Lisa

                              JerryfromFauq
                              Participant

                                I have known of people hand carrying their slides.  Even know of people from other countries bringing their slides with them when they fly into the USA to get 2nd opinions and follow-up work done.  Do get copies of all your reports, scans, bloodwork ,etc and be able to handcarry them if needed.  I shortned my entry into UVA by over a month by haaving copies of everything that they wanted.  Normally a Center will send you releases for you to sign and return to them, for them to forward to each Medical facility you have seen.  This can add a month or more to the time for an intake appointment.  Keep copies of ALL PAPERWORK and scans.

                                JerryfromFauq
                                Participant

                                  I have known of people hand carrying their slides.  Even know of people from other countries bringing their slides with them when they fly into the USA to get 2nd opinions and follow-up work done.  Do get copies of all your reports, scans, bloodwork ,etc and be able to handcarry them if needed.  I shortned my entry into UVA by over a month by haaving copies of everything that they wanted.  Normally a Center will send you releases for you to sign and return to them, for them to forward to each Medical facility you have seen.  This can add a month or more to the time for an intake appointment.  Keep copies of ALL PAPERWORK and scans.

                                  JerryfromFauq
                                  Participant

                                    I have known of people hand carrying their slides.  Even know of people from other countries bringing their slides with them when they fly into the USA to get 2nd opinions and follow-up work done.  Do get copies of all your reports, scans, bloodwork ,etc and be able to handcarry them if needed.  I shortned my entry into UVA by over a month by haaving copies of everything that they wanted.  Normally a Center will send you releases for you to sign and return to them, for them to forward to each Medical facility you have seen.  This can add a month or more to the time for an intake appointment.  Keep copies of ALL PAPERWORK and scans.

                                  lrkg1234
                                  Participant

                                    Wow. 

                                    I'm not the only one that has these problems. 

                                    I was told that I could never have the slides in my posession by the receptionist on the phone today.  She said they were treated as a specimen?? I said ok, but I don't really get it.  We have no more slides, but if I ever get the chance then I am going to get my hands on a set. 

                                    I am also going to get a copy of all the medical records so that I can do the faxing myself. 

                                    Thanks for all the help and support.  This group has been so good.

                                    Lisa

                                    lrkg1234
                                    Participant

                                      Wow. 

                                      I'm not the only one that has these problems. 

                                      I was told that I could never have the slides in my posession by the receptionist on the phone today.  She said they were treated as a specimen?? I said ok, but I don't really get it.  We have no more slides, but if I ever get the chance then I am going to get my hands on a set. 

                                      I am also going to get a copy of all the medical records so that I can do the faxing myself. 

                                      Thanks for all the help and support.  This group has been so good.

                                      Lisa

                                      awillett1991
                                      Participant
                                        I have to say I think you are doing pretty great if he was only diagnosed a week ago. My experience was with MD Anderson, Sarah Cannon , and Vandy. They all wanted their own scans too so don’t be surprised when that comes up. Fortunately our insurance was and continues to be generous.

                                        Get a big binder, or 2, and every time get copies of scans on disk and just ask the onc right there for copies of reports. The big centers all have everything online too so that makes life a lot easier too. Find out right away who the financial oncology counselor is when you get there and tuck that persons name and number away for safe keeping. Sadly, insurance stuff will probably eat up a lot of your time. Cancer is expensive, billing is complicated and can be done incorrectly.

                                        I waited 2 extra weeks for a surgeon to return from vacation and his schedule to clear because he was “the best”. Another time I delayed an entire in-patient round of biochemo a week to see my kids off to their first day of school.

                                        Finding the right doc you can trust and a solid treatment plan is the most important thing right now. Anxiety just comes with the diagnosis unfortunately. Lots of folks never get a second opinion or look up good info on the web, it’s just easier and that is what they want. It is their cancer and their choice to make.

                                        I read once that patients willing to travel to manage their disease live longer, and I bet that applies to being better educated about it too. Take a deep breath and realize tomorrow is another day, and each day is a gift. Attitude goes a long way so try to force yourself out of the mindset that it’s one “less” day. I know you’re still in shock but you are doing all the right things. You will get there.

                                        awillett1991
                                        Participant
                                          I have to say I think you are doing pretty great if he was only diagnosed a week ago. My experience was with MD Anderson, Sarah Cannon , and Vandy. They all wanted their own scans too so don’t be surprised when that comes up. Fortunately our insurance was and continues to be generous.

                                          Get a big binder, or 2, and every time get copies of scans on disk and just ask the onc right there for copies of reports. The big centers all have everything online too so that makes life a lot easier too. Find out right away who the financial oncology counselor is when you get there and tuck that persons name and number away for safe keeping. Sadly, insurance stuff will probably eat up a lot of your time. Cancer is expensive, billing is complicated and can be done incorrectly.

                                          I waited 2 extra weeks for a surgeon to return from vacation and his schedule to clear because he was “the best”. Another time I delayed an entire in-patient round of biochemo a week to see my kids off to their first day of school.

                                          Finding the right doc you can trust and a solid treatment plan is the most important thing right now. Anxiety just comes with the diagnosis unfortunately. Lots of folks never get a second opinion or look up good info on the web, it’s just easier and that is what they want. It is their cancer and their choice to make.

                                          I read once that patients willing to travel to manage their disease live longer, and I bet that applies to being better educated about it too. Take a deep breath and realize tomorrow is another day, and each day is a gift. Attitude goes a long way so try to force yourself out of the mindset that it’s one “less” day. I know you’re still in shock but you are doing all the right things. You will get there.

                                          awillett1991
                                          Participant
                                            I have to say I think you are doing pretty great if he was only diagnosed a week ago. My experience was with MD Anderson, Sarah Cannon , and Vandy. They all wanted their own scans too so don’t be surprised when that comes up. Fortunately our insurance was and continues to be generous.

                                            Get a big binder, or 2, and every time get copies of scans on disk and just ask the onc right there for copies of reports. The big centers all have everything online too so that makes life a lot easier too. Find out right away who the financial oncology counselor is when you get there and tuck that persons name and number away for safe keeping. Sadly, insurance stuff will probably eat up a lot of your time. Cancer is expensive, billing is complicated and can be done incorrectly.

                                            I waited 2 extra weeks for a surgeon to return from vacation and his schedule to clear because he was “the best”. Another time I delayed an entire in-patient round of biochemo a week to see my kids off to their first day of school.

                                            Finding the right doc you can trust and a solid treatment plan is the most important thing right now. Anxiety just comes with the diagnosis unfortunately. Lots of folks never get a second opinion or look up good info on the web, it’s just easier and that is what they want. It is their cancer and their choice to make.

                                            I read once that patients willing to travel to manage their disease live longer, and I bet that applies to being better educated about it too. Take a deep breath and realize tomorrow is another day, and each day is a gift. Attitude goes a long way so try to force yourself out of the mindset that it’s one “less” day. I know you’re still in shock but you are doing all the right things. You will get there.

                                            sjl
                                            Participant

                                              Wow!  This one really struck a nerve!  My husband was diagnosed with mucosal melanoma on the nasal cavity in April.  We were able to get to another doctor fast and he had more surgery on May 8 to remove what the first doctor couldn't and to have a neck resection and biopsy done.  One node tested positive.  At the same time, a suspicious nodule showed up in the lung.  We saw a melanoma specialist and were bounced from Dr A to Dr B to Dr C to Dr D and more with all wanting to do more scans, more tests, whatever.  It was finally determined to be a new primary lung cancer and all agreed to take care of the lung first.   Finally, we had a surgery date set for the lung on August 23.  About 2 1/2 weeks ago my husband woke up with a chain of small bumps and a larger mass above them that appeared literally overnight.  I called the doctor and we were seen in two days.  A biopsy was taken and it was confirmed that the melanoma had spread.  They were to call with a PET Scan appointment within a few days and have an appointment with the melanoma specialist..  Meanwhile, the tumors continued to grow and then pain developed.  I made another call only to be told that each of the two doctors involved thought the other was to call.  I finally reached someone else within the system who told me we had an appointment for September 13!  I told her that was totally unacceptable and gave her the whole story.  She said it was ridiculous and somehow had both doctors calling back within half an hour.  I was told to get him to the ER, two hours away.  it was the only way I could get them to pay attention.  We spent3 days seeing a steady stream of doctors and having more tests done.  We also found that the melanoma docotor, who was overseeing everything, knew nothin about the lung cancer even though I stood over one staff member and watched her fax the info to him.  I had also had a conversation with his contact person about the lung cancer and she talked to him about it (at least she said she did) and called me back.  This mass continued to grow during the entire time.  it's pressing on a nerve, causing the pain.  It's pressing on a blood vessel, making the blood pressure go up.  It's close to affecting his swollowing and breathing.  My worst fearhad come true – that the melanoma would srpead while waiting for the lung to be taken care of.

                                              I realize that we are in a unique situation with two primary cancers.  But my advice to you is to keep at it and follow up on everything.  Don't trust that they have the information or have done what they said they did.  Not Ever.  My husband went from May 8 until August 13 before having anything else done for the melanoma.  By that time, the situation was so serious that the whole treatment plan was tossed out the window.  he began chemo with taxol and carboplaxin which seems ot be working already in just 3 days.  The idea is to get things shrunk down fast and them move on to Yervoy.

                                              Document everything.  I have copies of all scans, reports, meds, doctors, notes on each visit, followed up with phone calls and stood over people to make sure they were sending the faxes in and it still wasn't enough.  I am frustrated beyond belief.  I take the whole bundle to each visit.  Get your husband checked for the cKIT mutation.  If he has it there is a drug called Gleevec that works in a lot of people.  My husband was supposed to have been checked for it in May but I found that it was never done.  The doctor figuered that out when I asked him about in a couple weeks ago.  I asked again last eweek and it couldn't be found in the system.  I suspect threy failed to do it again.  Now they say they are working on it. 

                                              Never, ever, trust that they are communicating or have everything together.  I've done everything imaginable and they still messed up.  Good luck to you.  I'd be interested in hearing what treatments are recommended for your husband.

                                                lrkg1234
                                                Participant

                                                  Sjl,

                                                   

                                                  I'm so sorry about your crappy luck with getting things done too.

                                                  If you want to give me your e-mail by contacting me direct then we can e-mail each other. 

                                                  I'm have been e-mailing back and forth with another wife who's husband  has mucosal melanoma too.  She knows so much and has helped me more than anything so far. 

                                                  It's good to have other people that can relate.

                                                  Take care, Lisa

                                                  lrkg1234
                                                  Participant

                                                    Sjl,

                                                     

                                                    I'm so sorry about your crappy luck with getting things done too.

                                                    If you want to give me your e-mail by contacting me direct then we can e-mail each other. 

                                                    I'm have been e-mailing back and forth with another wife who's husband  has mucosal melanoma too.  She knows so much and has helped me more than anything so far. 

                                                    It's good to have other people that can relate.

                                                    Take care, Lisa

                                                    lrkg1234
                                                    Participant

                                                      Sjl,

                                                       

                                                      I'm so sorry about your crappy luck with getting things done too.

                                                      If you want to give me your e-mail by contacting me direct then we can e-mail each other. 

                                                      I'm have been e-mailing back and forth with another wife who's husband  has mucosal melanoma too.  She knows so much and has helped me more than anything so far. 

                                                      It's good to have other people that can relate.

                                                      Take care, Lisa

                                                      Gene_S
                                                      Participant

                                                        Hello,  

                                                        My advice to you is to contact, preferrably in writing, of the medical establishments patient advocate about all the problems you have been having.  They can sometimes work for you and help things go more smoothly as far as getting everyone on the same page.

                                                        Just my 2 cents worth.

                                                        Judy (loving wife of Gene)

                                                        Gene_S
                                                        Participant

                                                          Hello,  

                                                          My advice to you is to contact, preferrably in writing, of the medical establishments patient advocate about all the problems you have been having.  They can sometimes work for you and help things go more smoothly as far as getting everyone on the same page.

                                                          Just my 2 cents worth.

                                                          Judy (loving wife of Gene)

                                                          Gene_S
                                                          Participant

                                                            Hello,  

                                                            My advice to you is to contact, preferrably in writing, of the medical establishments patient advocate about all the problems you have been having.  They can sometimes work for you and help things go more smoothly as far as getting everyone on the same page.

                                                            Just my 2 cents worth.

                                                            Judy (loving wife of Gene)

                                                          sjl
                                                          Participant

                                                            Wow!  This one really struck a nerve!  My husband was diagnosed with mucosal melanoma on the nasal cavity in April.  We were able to get to another doctor fast and he had more surgery on May 8 to remove what the first doctor couldn't and to have a neck resection and biopsy done.  One node tested positive.  At the same time, a suspicious nodule showed up in the lung.  We saw a melanoma specialist and were bounced from Dr A to Dr B to Dr C to Dr D and more with all wanting to do more scans, more tests, whatever.  It was finally determined to be a new primary lung cancer and all agreed to take care of the lung first.   Finally, we had a surgery date set for the lung on August 23.  About 2 1/2 weeks ago my husband woke up with a chain of small bumps and a larger mass above them that appeared literally overnight.  I called the doctor and we were seen in two days.  A biopsy was taken and it was confirmed that the melanoma had spread.  They were to call with a PET Scan appointment within a few days and have an appointment with the melanoma specialist..  Meanwhile, the tumors continued to grow and then pain developed.  I made another call only to be told that each of the two doctors involved thought the other was to call.  I finally reached someone else within the system who told me we had an appointment for September 13!  I told her that was totally unacceptable and gave her the whole story.  She said it was ridiculous and somehow had both doctors calling back within half an hour.  I was told to get him to the ER, two hours away.  it was the only way I could get them to pay attention.  We spent3 days seeing a steady stream of doctors and having more tests done.  We also found that the melanoma docotor, who was overseeing everything, knew nothin about the lung cancer even though I stood over one staff member and watched her fax the info to him.  I had also had a conversation with his contact person about the lung cancer and she talked to him about it (at least she said she did) and called me back.  This mass continued to grow during the entire time.  it's pressing on a nerve, causing the pain.  It's pressing on a blood vessel, making the blood pressure go up.  It's close to affecting his swollowing and breathing.  My worst fearhad come true – that the melanoma would srpead while waiting for the lung to be taken care of.

                                                            I realize that we are in a unique situation with two primary cancers.  But my advice to you is to keep at it and follow up on everything.  Don't trust that they have the information or have done what they said they did.  Not Ever.  My husband went from May 8 until August 13 before having anything else done for the melanoma.  By that time, the situation was so serious that the whole treatment plan was tossed out the window.  he began chemo with taxol and carboplaxin which seems ot be working already in just 3 days.  The idea is to get things shrunk down fast and them move on to Yervoy.

                                                            Document everything.  I have copies of all scans, reports, meds, doctors, notes on each visit, followed up with phone calls and stood over people to make sure they were sending the faxes in and it still wasn't enough.  I am frustrated beyond belief.  I take the whole bundle to each visit.  Get your husband checked for the cKIT mutation.  If he has it there is a drug called Gleevec that works in a lot of people.  My husband was supposed to have been checked for it in May but I found that it was never done.  The doctor figuered that out when I asked him about in a couple weeks ago.  I asked again last eweek and it couldn't be found in the system.  I suspect threy failed to do it again.  Now they say they are working on it. 

                                                            Never, ever, trust that they are communicating or have everything together.  I've done everything imaginable and they still messed up.  Good luck to you.  I'd be interested in hearing what treatments are recommended for your husband.

                                                            sjl
                                                            Participant

                                                              Wow!  This one really struck a nerve!  My husband was diagnosed with mucosal melanoma on the nasal cavity in April.  We were able to get to another doctor fast and he had more surgery on May 8 to remove what the first doctor couldn't and to have a neck resection and biopsy done.  One node tested positive.  At the same time, a suspicious nodule showed up in the lung.  We saw a melanoma specialist and were bounced from Dr A to Dr B to Dr C to Dr D and more with all wanting to do more scans, more tests, whatever.  It was finally determined to be a new primary lung cancer and all agreed to take care of the lung first.   Finally, we had a surgery date set for the lung on August 23.  About 2 1/2 weeks ago my husband woke up with a chain of small bumps and a larger mass above them that appeared literally overnight.  I called the doctor and we were seen in two days.  A biopsy was taken and it was confirmed that the melanoma had spread.  They were to call with a PET Scan appointment within a few days and have an appointment with the melanoma specialist..  Meanwhile, the tumors continued to grow and then pain developed.  I made another call only to be told that each of the two doctors involved thought the other was to call.  I finally reached someone else within the system who told me we had an appointment for September 13!  I told her that was totally unacceptable and gave her the whole story.  She said it was ridiculous and somehow had both doctors calling back within half an hour.  I was told to get him to the ER, two hours away.  it was the only way I could get them to pay attention.  We spent3 days seeing a steady stream of doctors and having more tests done.  We also found that the melanoma docotor, who was overseeing everything, knew nothin about the lung cancer even though I stood over one staff member and watched her fax the info to him.  I had also had a conversation with his contact person about the lung cancer and she talked to him about it (at least she said she did) and called me back.  This mass continued to grow during the entire time.  it's pressing on a nerve, causing the pain.  It's pressing on a blood vessel, making the blood pressure go up.  It's close to affecting his swollowing and breathing.  My worst fearhad come true – that the melanoma would srpead while waiting for the lung to be taken care of.

                                                              I realize that we are in a unique situation with two primary cancers.  But my advice to you is to keep at it and follow up on everything.  Don't trust that they have the information or have done what they said they did.  Not Ever.  My husband went from May 8 until August 13 before having anything else done for the melanoma.  By that time, the situation was so serious that the whole treatment plan was tossed out the window.  he began chemo with taxol and carboplaxin which seems ot be working already in just 3 days.  The idea is to get things shrunk down fast and them move on to Yervoy.

                                                              Document everything.  I have copies of all scans, reports, meds, doctors, notes on each visit, followed up with phone calls and stood over people to make sure they were sending the faxes in and it still wasn't enough.  I am frustrated beyond belief.  I take the whole bundle to each visit.  Get your husband checked for the cKIT mutation.  If he has it there is a drug called Gleevec that works in a lot of people.  My husband was supposed to have been checked for it in May but I found that it was never done.  The doctor figuered that out when I asked him about in a couple weeks ago.  I asked again last eweek and it couldn't be found in the system.  I suspect threy failed to do it again.  Now they say they are working on it. 

                                                              Never, ever, trust that they are communicating or have everything together.  I've done everything imaginable and they still messed up.  Good luck to you.  I'd be interested in hearing what treatments are recommended for your husband.

                                                              Linny
                                                              Participant

                                                                Hi Lisa,

                                                                I'm sorry to hear about Scott's diagnosis. Waiting can be agonizing. I'm a patient at Johns Hopkins and if I remember correctly, it took about 7-10 days to hear back from them after they received the slides from my local surgeon. Then after they confirmed the melanoma diagnosis, it was another week and a half before I got an appointment at Hopkins. Once the ball started rolling everything went smoothly.

                                                                Linda

                                                                Linny
                                                                Participant

                                                                  Hi Lisa,

                                                                  I'm sorry to hear about Scott's diagnosis. Waiting can be agonizing. I'm a patient at Johns Hopkins and if I remember correctly, it took about 7-10 days to hear back from them after they received the slides from my local surgeon. Then after they confirmed the melanoma diagnosis, it was another week and a half before I got an appointment at Hopkins. Once the ball started rolling everything went smoothly.

                                                                  Linda

                                                                  Linny
                                                                  Participant

                                                                    Hi Lisa,

                                                                    I'm sorry to hear about Scott's diagnosis. Waiting can be agonizing. I'm a patient at Johns Hopkins and if I remember correctly, it took about 7-10 days to hear back from them after they received the slides from my local surgeon. Then after they confirmed the melanoma diagnosis, it was another week and a half before I got an appointment at Hopkins. Once the ball started rolling everything went smoothly.

                                                                    Linda

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