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NEW to board – Stage 3, Possible Stage 4 – Suggestions for Questions for Melanoma Oncologist

Forums General Melanoma Community NEW to board – Stage 3, Possible Stage 4 – Suggestions for Questions for Melanoma Oncologist

  • Post
    MRFUser2011
    Participant

      I visited this board in 2008 when I discovered a mass in the inguinal area of my left thigh.  I had what had been Dx as a plantars wart by my GP and dermatologist on the bottom of my left foot.  It had not gone away despite repeated treatment and I asked if it could be related to the swollen area, which my GP said were likely swollen lymph nodes from an infection.  He said no connection to what he assured me was a wart.

      I visited this board in 2008 when I discovered a mass in the inguinal area of my left thigh.  I had what had been Dx as a plantars wart by my GP and dermatologist on the bottom of my left foot.  It had not gone away despite repeated treatment and I asked if it could be related to the swollen area, which my GP said were likely swollen lymph nodes from an infection.  He said no connection to what he assured me was a wart.  Two months later, after antibiotics and visit to a general surgeon, I googled "swollen inguinal lymph nodes and plantars wart" and got several hits for melanoma, one of which led me here and I read that I may have a misdiagnosed melanoma that had spread.  My GP refused to send me to a new dermatologist, so I self referred and a punch biopsy revealed melanoma.  My surgical info is in my profile (for future reference do I need to include it in posts?)  I had surgery for WME and had all left inguinal lymph nodes removed.  Recovery was long, painful and took everything I had.  Once I began to feel good again, I had no desire to research melanoma and moved forward with life with an attitude that I had beat this!  Since I cannot change the past, I am where I am and I will move forward from here.

      As noted in my profile, I have non-calcified lung nodules, 8mm in left upper lobe, 2cm in right lower lobe.  They grew slowly over months until the right lung went from 1.2 to 2.0 in 3 months.  I have been seeing a general oncologist who has allowed me to have my "wait and watch" approach, even though the melanoma oncologist she confers with has repeatedly recommended a year of interferon.  Not even sure that is an option now?  My current oncologist said she would do a biopsy of the right nodule and if it was melanoma, would do localized radiation on both nodules to remove them.  The melanoma specialist said no – this was not advisable and requested I come up the next week (which will be 1/20/11).  He requested that I have a brain MRI before I come up (he is 4 hours from us, as well) and bring CDs and reports from my recent scans.  He will present my case to a "tumor board" for recommendation.

      I came back to this board last week and started doing research but feel I am in over my head without enough time to find out everything I need to know before I head up to see this doctor.  I want to go in to the appointment informed and with the right questions.  I realize now that not doing adjunctive treatment early on may have made a difference in my case but have to start from where I am.  So, for those with experience with meeting with melanoma oncologists and the concept of the tumor board, what do I need to know?  What do I need to ask?  Where would you point me for "must have" facts and information for this appointment?  I appreciate any direction that any of you can offer because right now, I am sort of shotgunning it and there has to be a more effective way!

      Also, I have had what is referred to as a "kidney cyst" on my PET/CT scans for at least 18 months.  It was NOT on my pre-op scan, so showed up some months post-op.  It has grown over time and I believe is 3 cm x 6 cm now.  Also, I have thickening of the wall of my left adrenal gland which has increased slightly over months and also was NOT present on my pre-op scan.  Does this mean anything in terms of melanoma?

      Thanks again to any who can offer me some direction.  I will continue my research but know that some here have a lot of experience.  I hope I will be able to be on this board a LONG time and help someone else in the future.

      Blessings,

      Shari

    Viewing 5 reply threads
    • Replies
        LynnLuc
        Participant

          go to a comprehensive cancer center that specializes in melanoma…regular docs can not deal with this…you have too much going on ! Take care!

          LynnLuc
          Participant

            go to a comprehensive cancer center that specializes in melanoma…regular docs can not deal with this…you have too much going on ! Take care!

              Becky
              Participant

                Shari

                I see you are going to Dr Kashani in San Francisco. He has a really good reputation. I think you will be in good hands there.

                Good luck

                Becky

                Becky
                Participant

                  Shari

                  I see you are going to Dr Kashani in San Francisco. He has a really good reputation. I think you will be in good hands there.

                  Good luck

                  Becky

                  MRFUser2011
                  Participant

                    Becky, would Dr. Kashani and those on his "tumor board" qualify as a "cancer center" as referenced in the above post?

                    Shari

                    MRFUser2011
                    Participant

                      Becky, would Dr. Kashani and those on his "tumor board" qualify as a "cancer center" as referenced in the above post?

                      Shari

                      MRFUser2011
                      Participant

                        Any suggestions on how to search for one?  My google searches are coming up with all kinds of stuff but nothing specific to melanoma.

                        Thanks.

                        MRFUser2011
                        Participant

                          Any suggestions on how to search for one?  My google searches are coming up with all kinds of stuff but nothing specific to melanoma.

                          Thanks.

                          MRFUser2011
                          Participant

                             

                            Below is a description of the center I am going to.  Dr. Kashani was previously with UCSF which is a major medical center in San Francisco, including a Comprehensive Cancer Center.  

                            Center for Melanoma Research & Treatment: Our melanoma program addresses all stages of melanoma, from diagnosis of early lesions to therapy for late-stage disease. Our specialists provide care to control and prevent skin cancers, and design new treatments for high-risk skin malignancies such as melanoma, basal and squamous cell cancer, and skin lymphomas including mycosis fungoides, a rare form of T-cell lymphoma of the skin.

                            MRFUser2011
                            Participant

                               

                              Below is a description of the center I am going to.  Dr. Kashani was previously with UCSF which is a major medical center in San Francisco, including a Comprehensive Cancer Center.  

                              Center for Melanoma Research & Treatment: Our melanoma program addresses all stages of melanoma, from diagnosis of early lesions to therapy for late-stage disease. Our specialists provide care to control and prevent skin cancers, and design new treatments for high-risk skin malignancies such as melanoma, basal and squamous cell cancer, and skin lymphomas including mycosis fungoides, a rare form of T-cell lymphoma of the skin.

                              EmilyandMike
                              Participant

                                Hi Shari – I am also in Northern California (San Francisco Bay Area). My husband is 3a – no INF – 18 mos out and NED.   His case was presented to the UCSF tumor board beacuse they couldnt tell if the 1-2 cells in his sentinel node were melanoma.  Anyway, we have been to most of the major cancer centers in the area. You are in very good hands with Kashani at Cal Pacific.  If you are stage IV or even think you do, you MUST be at a melanoma center of excellence…preferably the one with the most clinical trials.  DONT rely on your local oncologist for treatment suggestions – they dont know the latest in melanoma research.  They will give you interferon or IL-2 – sadly all they have to offer.  Biochemo with Dr Minor at Cal Pacific is a good option if you are truly Stage IV and dont want to do the clinical trials.  If you are BRAF + – UCSF is opening the GSK MEK trial, St Marys (Northern Cal Melanoma Center) also offers Oncovex, Ipi and some other trials.  My sister in law also happens to work at another major cancer center in Nor Cal – in the melanoma dept – so we know what's up when it comes to the area and melanoma centers.

                                Please send us a note if you want more info about the Bay Area/melanoma – [email protected]  (blog is http://www.emandmichael.com)

                                All my best to you

                                Emily

                                 

                                EmilyandMike
                                Participant

                                  Hi Shari – I am also in Northern California (San Francisco Bay Area). My husband is 3a – no INF – 18 mos out and NED.   His case was presented to the UCSF tumor board beacuse they couldnt tell if the 1-2 cells in his sentinel node were melanoma.  Anyway, we have been to most of the major cancer centers in the area. You are in very good hands with Kashani at Cal Pacific.  If you are stage IV or even think you do, you MUST be at a melanoma center of excellence…preferably the one with the most clinical trials.  DONT rely on your local oncologist for treatment suggestions – they dont know the latest in melanoma research.  They will give you interferon or IL-2 – sadly all they have to offer.  Biochemo with Dr Minor at Cal Pacific is a good option if you are truly Stage IV and dont want to do the clinical trials.  If you are BRAF + – UCSF is opening the GSK MEK trial, St Marys (Northern Cal Melanoma Center) also offers Oncovex, Ipi and some other trials.  My sister in law also happens to work at another major cancer center in Nor Cal – in the melanoma dept – so we know what's up when it comes to the area and melanoma centers.

                                  Please send us a note if you want more info about the Bay Area/melanoma – [email protected]  (blog is http://www.emandmichael.com)

                                  All my best to you

                                  Emily

                                   

                                  MRFUser2011
                                  Participant

                                    Thank you, Emily.  I have replied to you via  email.  Your blog is very touching, thanks for sharing the  link.

                                    Shari

                                    MRFUser2011
                                    Participant

                                      Thank you, Emily.  I have replied to you via  email.  Your blog is very touching, thanks for sharing the  link.

                                      Shari

                                      EmilyandMike
                                      Participant

                                        Hi Shari – I am also in Northern California (San Francisco Bay Area). My husband is 3a – no INF – 18 mos out and NED.   His case was presented to the UCSF tumor board beacuse they couldnt tell if the 1-2 cells in his sentinel node were melanoma.  Anyway, we have been to most of the major cancer centers in the area. You are in very good hands with Kashani at Cal Pacific.  If you are stage IV or even think you do, you MUST be at a melanoma center of excellence…preferably the one with the most clinical trials.  DONT rely on your local oncologist for treatment suggestions – they dont know the latest in melanoma research.  They will give you interferon or IL-2 – sadly all they have to offer.  Biochemo with Dr Minor at Cal Pacific is a good option if you are truly Stage IV and dont want to do the clinical trials.  If you are BRAF + – UCSF is opening the GSK MEK trial, St Marys (Northern Cal Melanoma Center) also offers Oncovex, Ipi and some other trials.  My sister in law also happens to work at another major cancer center in Nor Cal – in the melanoma dept – so we know what's up when it comes to the area and melanoma centers.

                                        Please send us a note if you want more info about the Bay Area/melanoma – [email protected]  (blog is http://www.emandmichael.com)

                                        All my best to you

                                        Emily

                                         

                                        EmilyandMike
                                        Participant

                                          Hi Shari – I am also in Northern California (San Francisco Bay Area). My husband is 3a – no INF – 18 mos out and NED.   His case was presented to the UCSF tumor board beacuse they couldnt tell if the 1-2 cells in his sentinel node were melanoma.  Anyway, we have been to most of the major cancer centers in the area. You are in very good hands with Kashani at Cal Pacific.  If you are stage IV or even think you do, you MUST be at a melanoma center of excellence…preferably the one with the most clinical trials.  DONT rely on your local oncologist for treatment suggestions – they dont know the latest in melanoma research.  They will give you interferon or IL-2 – sadly all they have to offer.  Biochemo with Dr Minor at Cal Pacific is a good option if you are truly Stage IV and dont want to do the clinical trials.  If you are BRAF + – UCSF is opening the GSK MEK trial, St Marys (Northern Cal Melanoma Center) also offers Oncovex, Ipi and some other trials.  My sister in law also happens to work at another major cancer center in Nor Cal – in the melanoma dept – so we know what's up when it comes to the area and melanoma centers.

                                          Please send us a note if you want more info about the Bay Area/melanoma – [email protected]  (blog is http://www.emandmichael.com)

                                          All my best to you

                                          Emily

                                           

                                        washoegal
                                        Participant

                                          Shari, I am a little surprised you were not referred to Angles Clinic in Santa Monica if you were already at John Wayne Cancer Center.  They have an excellent program and might be closer to you. 

                                           

                                          As far as questions go, if any of the tumors or potential tumors are mel I would ask them to do gentic testing for future inclusion in trial groups should you need it.  Right now it sounds like the PET scan picked up so much, who knows what is going on.  Could even be false reading, which happens a lot.  An MRI doesn't hurt. 

                                           

                                          Let us know how it goes.

                                           

                                          Good luck, Mary Stage 3

                                          washoegal
                                          Participant

                                            Shari, I am a little surprised you were not referred to Angles Clinic in Santa Monica if you were already at John Wayne Cancer Center.  They have an excellent program and might be closer to you. 

                                             

                                            As far as questions go, if any of the tumors or potential tumors are mel I would ask them to do gentic testing for future inclusion in trial groups should you need it.  Right now it sounds like the PET scan picked up so much, who knows what is going on.  Could even be false reading, which happens a lot.  An MRI doesn't hurt. 

                                             

                                            Let us know how it goes.

                                             

                                            Good luck, Mary Stage 3

                                              MRFUser2011
                                              Participant

                                                Mary,

                                                I am in the Central Valley – midway between LA & SF.  The doc that did my surgery is not at JWCI anymore. The grapevine is a tough road for an ill body (which I was post-op and imagine I may be post treatment).  My oncologist here already has a relationship with Dr. Kashani and I have a friend that has been to him but it was 2002 and she is thankfully still a healthy Stage 2.  SF is actually more convenient for me if care is equivalent.  

                                                Just to be clear (need to check my profile, it may not be) all this was not picked up on one scan.  The adrenal thickening and kidney cyst have been there for about 18 months on repeated PET/CT scans and have gotten thicker/bigger.  The lung nodule increase was the big "hello" to me and my doctor.  My understanding is brain mets cannot be picked up adequately on PET/CT, thus the MRI.

                                                Shari

                                                MRFUser2011
                                                Participant

                                                  Mary,

                                                  I am in the Central Valley – midway between LA & SF.  The doc that did my surgery is not at JWCI anymore. The grapevine is a tough road for an ill body (which I was post-op and imagine I may be post treatment).  My oncologist here already has a relationship with Dr. Kashani and I have a friend that has been to him but it was 2002 and she is thankfully still a healthy Stage 2.  SF is actually more convenient for me if care is equivalent.  

                                                  Just to be clear (need to check my profile, it may not be) all this was not picked up on one scan.  The adrenal thickening and kidney cyst have been there for about 18 months on repeated PET/CT scans and have gotten thicker/bigger.  The lung nodule increase was the big "hello" to me and my doctor.  My understanding is brain mets cannot be picked up adequately on PET/CT, thus the MRI.

                                                  Shari

                                                  MRFUser2011
                                                  Participant

                                                    Mary,

                                                    How do you go about the genetic testing (I am guessing this is for the BRAF treatment?)  I understand from searches that the testing company gets a sample from your original biopsy and then gives you a report.  Are there other genetic tests available?  How long does this take?  Does insurance cover this normally or I do I have to pay for it?  I really need a "Melanoma Stage IV for Dummies" guide!

                                                    Shari

                                                    MRFUser2011
                                                    Participant

                                                      Mary,

                                                      How do you go about the genetic testing (I am guessing this is for the BRAF treatment?)  I understand from searches that the testing company gets a sample from your original biopsy and then gives you a report.  Are there other genetic tests available?  How long does this take?  Does insurance cover this normally or I do I have to pay for it?  I really need a "Melanoma Stage IV for Dummies" guide!

                                                      Shari

                                                    kylez
                                                    Participant

                                                      Shari,

                                                      It's really good you're going to directly see a melanoma-specializing oncologist, Dr. Kashani. Just bring all your questions. Ideally a melanoma specializing oncologist, rather than a non-specialist, would direct your care, until such time as you can rule out melanoma as the cause of the recent issues.

                                                      I had lesions on my lungs, my oncologist at first wanted to take a wait and see approach. But at least she mentioned there were possibilities. I pushed for them to confirm or rule out melanoma in my lungs by doing a VATS (Video Assisted Thorascopic Surgery) procedure so they could biopsy. In my case, they confirmed melanoma. Then, confirmed, they could proceed with stage IV treatment approaches.

                                                      I imagine they'll want to do something similar, look at one or more of the areas you mentioned, and possibly do some kind of surgery so that they can biopsy and confirm or rule out melanoma for those areas.

                                                      Whichever way it turns out, another place to ask  questions is a local (SF) melanoma support group, I was going to a different support group but it recently stopped meeting. I have not been to this one below because it's during work hours. It's next meeting is the 18th I believe:

                                                      San Francisco
                                                      California Pacific Medical Center
                                                      2351 Clay Street, Suite 137

                                                      3rd Tuesday of each Month
                                                      2pm-3:30pm
                                                      To Register:  415-923-3155 or email [email protected]
                                                      Info (including transportation) http://www.cpmc.org/CHRC

                                                      Good luck,

                                                      Kyle

                                                      kylez
                                                      Participant

                                                        Shari,

                                                        It's really good you're going to directly see a melanoma-specializing oncologist, Dr. Kashani. Just bring all your questions. Ideally a melanoma specializing oncologist, rather than a non-specialist, would direct your care, until such time as you can rule out melanoma as the cause of the recent issues.

                                                        I had lesions on my lungs, my oncologist at first wanted to take a wait and see approach. But at least she mentioned there were possibilities. I pushed for them to confirm or rule out melanoma in my lungs by doing a VATS (Video Assisted Thorascopic Surgery) procedure so they could biopsy. In my case, they confirmed melanoma. Then, confirmed, they could proceed with stage IV treatment approaches.

                                                        I imagine they'll want to do something similar, look at one or more of the areas you mentioned, and possibly do some kind of surgery so that they can biopsy and confirm or rule out melanoma for those areas.

                                                        Whichever way it turns out, another place to ask  questions is a local (SF) melanoma support group, I was going to a different support group but it recently stopped meeting. I have not been to this one below because it's during work hours. It's next meeting is the 18th I believe:

                                                        San Francisco
                                                        California Pacific Medical Center
                                                        2351 Clay Street, Suite 137

                                                        3rd Tuesday of each Month
                                                        2pm-3:30pm
                                                        To Register:  415-923-3155 or email [email protected]
                                                        Info (including transportation) http://www.cpmc.org/CHRC

                                                        Good luck,

                                                        Kyle

                                                          MRFUser2011
                                                          Participant

                                                            Kyle, thanks so much for your response.  VATS is a great reference – I have not come across that yet!  This is what is difficult – trying to learn an entirely new jargon in a few days while under some mental stress (as I am reading about melanoma, I now recall why I decided not to after I was diagnosed!  This is some scary s—!)  I am not in SF.  I am down near Fresno, so am hoping that there will be some options that will not require me to constantly revisit SF. But if that is what it takes, that is what I will do.  

                                                            I will have to check my area and see if there is a support group.  Thanks for the idea.

                                                            Shari

                                                            MRFUser2011
                                                            Participant

                                                              Kyle, thanks so much for your response.  VATS is a great reference – I have not come across that yet!  This is what is difficult – trying to learn an entirely new jargon in a few days while under some mental stress (as I am reading about melanoma, I now recall why I decided not to after I was diagnosed!  This is some scary s—!)  I am not in SF.  I am down near Fresno, so am hoping that there will be some options that will not require me to constantly revisit SF. But if that is what it takes, that is what I will do.  

                                                              I will have to check my area and see if there is a support group.  Thanks for the idea.

                                                              Shari

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