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Frustrated with length of staging process

Forums General Melanoma Community Frustrated with length of staging process

  • Post
    shellebrownies
    Participant

      Hey all,

      Is it normal to take a month or more to get a proper staging and treatment plan? The waiting and lack of knowledge is driving Don and I insane! He has had the melanoma diagnosis since the 1st and we probably won't have an answer on his stage until at least May 6th. 

      Hey all,

      Is it normal to take a month or more to get a proper staging and treatment plan? The waiting and lack of knowledge is driving Don and I insane! He has had the melanoma diagnosis since the 1st and we probably won't have an answer on his stage until at least May 6th. 

      Why this drives me insane: Dr. Ibrahim told us at our appointment 2 weeks ago that because Don's mel was found to be extracapsular, it put him at a higher risk of reoccurrence. She also said she had some concerns about how quickly everything blew up under his arm and thought that might indicate a more aggressive form of cancer. YET… she scheduled the repeat PET scan 2 weeks later and our next appointment with her for 3 weeks later! When I questioned her about that, she said Don would have to have time to heal from the surgery before treatment could be administered anyway.

      The original PET scan he had done on the 7th appeared to have a hot spot in the right shoulder that it was believed indicated more infected lymph nodes as well as an area of suspected activity on the left side of his neck. They are having him repeat to find out if the neck area lit up was an anomaly (like a sore throat or something) or not.

      I understand that it is extremely important for them to know Stage IV vs. Stage III, but does it really need to take this long? Meanwhile, Don has had no treatment all this time and that makes me very nervous that he'll end up Stage IV just from all their waiting to start treatment!

      Help me not to freak out, please. Thanks!

       

      Michelle

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    • Replies
        Carol Taylor
        Participant

          Hi Michelle,

          Freaking out's not going to help anything! I'm not familiar with all these doctors, is this gal a melanoma specialist? If he is, I'd agree, a month is too long and I hope you're calling the office.

          If she's not a specialist, please find one in your area now, now, call and make an appt today.

          Thought as I write, even if she is a specialist, since you're obviously NOT a happy camper, I might be looking for another campsite! Just a thought. You & Don need a team you can work with and feel like are working for Don. Make the change sooner rather than later if you want to find another doc…make sure he/she is a specialist!

          Lord, open doors that need opening, in Your mercy. Amen.

          Grace and peace,

          Carol

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            shellebrownies
            Participant

              Carol,

              Yes, Dr. Ibrahim is a melanoma specialist at Dana Farber. I know she is relatively new to the staff there…am wondering if we shouldn't have our case transferred to Dr. Hodi. I understand the need for caution because they certainly don't want to be categorizing Don as Stage IV if he isn't, but the wait without treatment is SO frustrating! 

              We go in later today for his repeat PET scan and we go back for the oncology visit next Friday, so only a week more to go. I think we'll base whether we stay with this doctor on what we hear next Friday. If they've had this long to figure them out, the better darn well have the answers for us.

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              shellebrownies
              Participant

                Carol,

                Yes, Dr. Ibrahim is a melanoma specialist at Dana Farber. I know she is relatively new to the staff there…am wondering if we shouldn't have our case transferred to Dr. Hodi. I understand the need for caution because they certainly don't want to be categorizing Don as Stage IV if he isn't, but the wait without treatment is SO frustrating! 

                We go in later today for his repeat PET scan and we go back for the oncology visit next Friday, so only a week more to go. I think we'll base whether we stay with this doctor on what we hear next Friday. If they've had this long to figure them out, the better darn well have the answers for us.

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              Carol Taylor
              Participant

                Hi Michelle,

                Freaking out's not going to help anything! I'm not familiar with all these doctors, is this gal a melanoma specialist? If he is, I'd agree, a month is too long and I hope you're calling the office.

                If she's not a specialist, please find one in your area now, now, call and make an appt today.

                Thought as I write, even if she is a specialist, since you're obviously NOT a happy camper, I might be looking for another campsite! Just a thought. You & Don need a team you can work with and feel like are working for Don. Make the change sooner rather than later if you want to find another doc…make sure he/she is a specialist!

                Lord, open doors that need opening, in Your mercy. Amen.

                Grace and peace,

                Carol

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                MichaelFL
                Participant

                  If I remember correctly, Nageatte Ibrahim is at the Dana-Farber Cancer Institute, and she is a melanoma oncologist, as well as Instructor in Medicine.

                  Have you tried contacting Dana-Farber? Perhaps they are getting a second op[inion?
                   
                  Squeaky wheel gets the grease.
                   

                  Contact Information:

                  Dana-Farber/Harvard Cancer Center
                  Dana-Farber Cancer Institute
                  44 Binney Street, Rm. 1628
                  Boston, Massachusetts 02115
                  (617) 632-4266
                   

                  Nageatte Ibrahim, MD
                  Dana-Farber Cancer Institute
                  450 Brookline Avenue
                  SW550D
                  Boston, MA 02215
                  Office phone: (617) 632-5055
                   

                  Michael
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                  MichaelFL
                  Participant

                    If I remember correctly, Nageatte Ibrahim is at the Dana-Farber Cancer Institute, and she is a melanoma oncologist, as well as Instructor in Medicine.

                    Have you tried contacting Dana-Farber? Perhaps they are getting a second op[inion?
                     
                    Squeaky wheel gets the grease.
                     

                    Contact Information:

                    Dana-Farber/Harvard Cancer Center
                    Dana-Farber Cancer Institute
                    44 Binney Street, Rm. 1628
                    Boston, Massachusetts 02115
                    (617) 632-4266
                     

                    Nageatte Ibrahim, MD
                    Dana-Farber Cancer Institute
                    450 Brookline Avenue
                    SW550D
                    Boston, MA 02215
                    Office phone: (617) 632-5055
                     

                    Michael
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                    Phil S
                    Participant

                      Michelle      I totally understand what you both are feeling.  Last year, my husband's first MRI showed some growths at the base of his skull, and we were sent off to Dana Farber, as our local doctor felt my husband's condition couldn't be handled here in upstate NY.  We were even sent to the Brain Tumor Board in Boston and his scans were reviewed by the best and no one could say for sure what these spots were.  Only, Dr Hodi at Dana Farber said to us, if I were a betting man, I would say these growths are not melanoma related.  However, the only way to know for sure (these spots couldn't easily be reached for a biopsy), was wait out another month and re-scan to see if they changed.  That was one LONG MONTH, as my husband wasn't receiving any treatment at that time and I too worried that the melanoma was being given free rein.  I prayed alot and we both tried to focus on our kids and their activities, and not obsess with our circumstances.  It was the HARDEST month of my life, but when he was re-scan there were no changes and it turns out my husband just has a weird head! We are now 15 months NED, and he is finishing his year of interferon next week.  Just take one day at a time, and try to understand that sometimes re-scanning although that usually involves a one month wait, is often better than an unnecessary biopsy.

                      Also, my experience with the Dana Farber melanoma team, is that the doctors share the same nurse, Nancy and PA, Angie and they are both very receptive to any questions and concerns you have.  I frequently e-mail and/or call them with questions/concerns and they get back to me right away.  So, if you are nervous about waiting for your appointment, contact them and express yourself.  They helped me wait out our time last year!  God Bless!  Valerie (Phil's wife)

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                      Phil S
                      Participant

                        Michelle      I totally understand what you both are feeling.  Last year, my husband's first MRI showed some growths at the base of his skull, and we were sent off to Dana Farber, as our local doctor felt my husband's condition couldn't be handled here in upstate NY.  We were even sent to the Brain Tumor Board in Boston and his scans were reviewed by the best and no one could say for sure what these spots were.  Only, Dr Hodi at Dana Farber said to us, if I were a betting man, I would say these growths are not melanoma related.  However, the only way to know for sure (these spots couldn't easily be reached for a biopsy), was wait out another month and re-scan to see if they changed.  That was one LONG MONTH, as my husband wasn't receiving any treatment at that time and I too worried that the melanoma was being given free rein.  I prayed alot and we both tried to focus on our kids and their activities, and not obsess with our circumstances.  It was the HARDEST month of my life, but when he was re-scan there were no changes and it turns out my husband just has a weird head! We are now 15 months NED, and he is finishing his year of interferon next week.  Just take one day at a time, and try to understand that sometimes re-scanning although that usually involves a one month wait, is often better than an unnecessary biopsy.

                        Also, my experience with the Dana Farber melanoma team, is that the doctors share the same nurse, Nancy and PA, Angie and they are both very receptive to any questions and concerns you have.  I frequently e-mail and/or call them with questions/concerns and they get back to me right away.  So, if you are nervous about waiting for your appointment, contact them and express yourself.  They helped me wait out our time last year!  God Bless!  Valerie (Phil's wife)

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                        RMcLegal
                        Participant

                          Michelle, I empathize with your frustration about the pace of things.  We've all been there.  In my case, about three months elapsed between the time a pathology report showed that a tiny mole was melanoma and the time the diagnosis had settled on Stage IIIc (14 malignant nodes) and I started an adjuvant biochemotherapy trial treatment.  Every next step along that journey was always a "week from Thursday", followed by more waiting for scan or biopsy results etc. and the next appointment with the oncologist.  It nearly drove me (and my wife) bonkers.  Unfortunately, this just seems to be the way it is at any big-time melanoma treatment center.  Every diagnostic test and appointment has to be fitted into busy schedules and every step along the way seems to require insurance company preauthorization.  Nevertheless, when I expressed my frustration to my docs they assured me that the most important thing was to get the staging right so they could then recommend the most appropriate and best available treatment options; and the passage of several weeks before starting that treatment wouldn't reduce my chances of a successful treatment outcome.

                          And that turned out to be true.  Nearly eight years later, I'm healthy and showing no evident disease.  I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com, and you might get some smiles and encouragement from it.

                          Best wishes to you and your husband.

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                          RMcLegal
                          Participant

                            Michelle, I empathize with your frustration about the pace of things.  We've all been there.  In my case, about three months elapsed between the time a pathology report showed that a tiny mole was melanoma and the time the diagnosis had settled on Stage IIIc (14 malignant nodes) and I started an adjuvant biochemotherapy trial treatment.  Every next step along that journey was always a "week from Thursday", followed by more waiting for scan or biopsy results etc. and the next appointment with the oncologist.  It nearly drove me (and my wife) bonkers.  Unfortunately, this just seems to be the way it is at any big-time melanoma treatment center.  Every diagnostic test and appointment has to be fitted into busy schedules and every step along the way seems to require insurance company preauthorization.  Nevertheless, when I expressed my frustration to my docs they assured me that the most important thing was to get the staging right so they could then recommend the most appropriate and best available treatment options; and the passage of several weeks before starting that treatment wouldn't reduce my chances of a successful treatment outcome.

                            And that turned out to be true.  Nearly eight years later, I'm healthy and showing no evident disease.  I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com, and you might get some smiles and encouragement from it.

                            Best wishes to you and your husband.

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