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Just diagnosed… Again.

Forums General Melanoma Community Just diagnosed… Again.

  • Post
    Eileensulliv
    Participant

      In 2006 I had a rather quick battle with melanoma in my back. I had WLE and SNB done at University of Chicago Hospital and was considered cancer free. In October 2014 the area between my melanoma scar and the scar under my arm from the SNB swelled up, and was red and painful. I have lymphedema in both arms, so reaching the area is difficult. I saw my oncologist who said it could be an abscess, so she prescribed antibiotics. She said to be safe I should have a CT. The CT was done about a week later, after antibiotics already took effect. The technician was commenting on the lump of my melanoma scar, and I told him that is not where the pain was, it was off to the left. When I got home and saw where he put a mark for the scan, I called to see if it was done in the right spot. My onc sent me to see a surgeon, and the surgeon said the CT only showed scar tissue. She felt around my scar and said everything was fine. I told her my scar and my back feel "tight" lately, and that I felt like something was there. She said I was fine. Two weeks later, the area starts to swell again. My onc was out of town, so I saw the nurse practitioner, after they started me on a different antibiotic for two days. I was very firm that I needed some answers, and wanted this thing taken out! The nurse practitioner definitely felt something, and ordered ultrasound. She said it could be a lipoma that is just getting irritated and infected because it is right on my bra line. The ultrasound technician took some pictures of it, and my onc said I should see the surgeon to have it biopsied and removed. I finally got in to see the surgeon after the holidays, and she did a core needle biopsy, which came back as melanoma. They sent me for a PET scan, and the onc gave me the results two days ago… The spot in my back lit up, as well as in my bowel. She said I should see Dr. Sharfman, a melanoma specialist at Hopkins. Yesterday the surgeon called and was discussing the scan results with me when she said the spot in my lung… What spot in my lung!?! Apparently my onc failed to mentioned there is a spot in my lower right lobe that just barely lit up, and could be nothing at all, or it could be something. I know my onc and the surgeon are very well respected doctors here, but I have really lost faith in them… Am I crazy? I feel like this could have been caught two months ago! And has anyone been treated by Dr. Sharfman? I know Hopkins has a strong melanoma program, and everything I have been able to research on him seems very positive.  Sorry for the long post, but I am really having a hard time believing my doctors now, and am wondering if I am justified. 

    Viewing 17 reply threads
    • Replies
        Janner
        Participant

          I'm only going to comment on the lung issue.  Benign lung nodules are VERY COMMON, and if it really didn't light up on the PET scan, then the docs probably feel it isn't related to your melanoma.  It's actually not uncommon for a doc to omit discussing things that show up on scans if they don't feel they are malignant.  My Dad's scans used to show several things that the radiologist would point out (they have to mention everything) – including several things in the lungs, but the oncologist didn't think they were relative to my Dad's cancers and didn't mention them.  I only knew about them because I asked for copies of the reports.  But since those things mostly stayed stable over several scans, it seems that the docs were correct in not bringing up these other "beasties".  Hoping your lung nodule is one of these benign lesions!

          Sorry to hear about the rest  — and Sharfman does have a good reputation.

          Janner
          Participant

            I'm only going to comment on the lung issue.  Benign lung nodules are VERY COMMON, and if it really didn't light up on the PET scan, then the docs probably feel it isn't related to your melanoma.  It's actually not uncommon for a doc to omit discussing things that show up on scans if they don't feel they are malignant.  My Dad's scans used to show several things that the radiologist would point out (they have to mention everything) – including several things in the lungs, but the oncologist didn't think they were relative to my Dad's cancers and didn't mention them.  I only knew about them because I asked for copies of the reports.  But since those things mostly stayed stable over several scans, it seems that the docs were correct in not bringing up these other "beasties".  Hoping your lung nodule is one of these benign lesions!

            Sorry to hear about the rest  — and Sharfman does have a good reputation.

            Janner
            Participant

              I'm only going to comment on the lung issue.  Benign lung nodules are VERY COMMON, and if it really didn't light up on the PET scan, then the docs probably feel it isn't related to your melanoma.  It's actually not uncommon for a doc to omit discussing things that show up on scans if they don't feel they are malignant.  My Dad's scans used to show several things that the radiologist would point out (they have to mention everything) – including several things in the lungs, but the oncologist didn't think they were relative to my Dad's cancers and didn't mention them.  I only knew about them because I asked for copies of the reports.  But since those things mostly stayed stable over several scans, it seems that the docs were correct in not bringing up these other "beasties".  Hoping your lung nodule is one of these benign lesions!

              Sorry to hear about the rest  — and Sharfman does have a good reputation.

                Eileensulliv
                Participant

                  Thank you, Janner! That does put my mind to rest a bit! Thank you!

                  Eileensulliv
                  Participant

                    Thank you, Janner! That does put my mind to rest a bit! Thank you!

                    Eileensulliv
                    Participant

                      Thank you, Janner! That does put my mind to rest a bit! Thank you!

                    Linny
                    Participant

                      I don't blame you for being concerned and worried. It won't hurt to have a chat with Dr. Scharfmann about your results. Scharfmann is one of the top melanoma doctors in the country. He's also my doctor. ๐Ÿ™‚

                       

                      Linny
                      Participant

                        I don't blame you for being concerned and worried. It won't hurt to have a chat with Dr. Scharfmann about your results. Scharfmann is one of the top melanoma doctors in the country. He's also my doctor. ๐Ÿ™‚

                         

                        Linny
                        Participant

                          I don't blame you for being concerned and worried. It won't hurt to have a chat with Dr. Scharfmann about your results. Scharfmann is one of the top melanoma doctors in the country. He's also my doctor. ๐Ÿ™‚

                           

                          mwconklin
                          Participant

                            Sorry that you are having to deal with this monster again. I know what it feels like to have a loss of confidence in your doctors. My oncolgist died last summer from a heart attack. It really shook me and as I have learned, many other patients. It was hard to trust after that. I have a new doctor and even though I think he is very caring and qualified, it s hard to trust again. It has been my observation that the doctors in the cancer centers are not in it for the glory, I really think they care for people.

                            mwconklin
                            Participant

                              Sorry that you are having to deal with this monster again. I know what it feels like to have a loss of confidence in your doctors. My oncolgist died last summer from a heart attack. It really shook me and as I have learned, many other patients. It was hard to trust after that. I have a new doctor and even though I think he is very caring and qualified, it s hard to trust again. It has been my observation that the doctors in the cancer centers are not in it for the glory, I really think they care for people.

                              mwconklin
                              Participant

                                Sorry that you are having to deal with this monster again. I know what it feels like to have a loss of confidence in your doctors. My oncolgist died last summer from a heart attack. It really shook me and as I have learned, many other patients. It was hard to trust after that. I have a new doctor and even though I think he is very caring and qualified, it s hard to trust again. It has been my observation that the doctors in the cancer centers are not in it for the glory, I really think they care for people.

                                ed williams
                                Participant

                                  Hi Eileen, just wanted to share a Pet scan story. I had my thyroid light up 2 years ago and they decided to watch and wait since many small tumors in thyroid tend to be nothing. They did do a biopsy of the thyroid which found Hurtle cells.  A few months later my Oncologist decided to do a x-ray of my body rather than a Ct-scan, his reason was he didn't want to give me too much radiation. Well, they found a shadow on my right lung, so they decided to do a Ct to confirm, which it did followed by a biopsy which confirmed Melanoma. Now the best option at this point was to get into the BMS trial of NIvolumab and Ipi. In order to qualify they had to rule out the thyroid issue, so  a hemi thyroidectomy was ordered. It turned out that it wasn't cancer. The point that I am trying to make is that scans are usefull but limited in what they actually tell us. A Biopsy is much more accurate in helping to determine what is going on. I know that it can be really tough to get the news that you have Melanoma again. If you don't feel confident in your Oncology a second opinion would be a good idea if you can see one without a long wait. Wishing you the best!!!! Ed  

                                  ed williams
                                  Participant

                                    Hi Eileen, just wanted to share a Pet scan story. I had my thyroid light up 2 years ago and they decided to watch and wait since many small tumors in thyroid tend to be nothing. They did do a biopsy of the thyroid which found Hurtle cells.  A few months later my Oncologist decided to do a x-ray of my body rather than a Ct-scan, his reason was he didn't want to give me too much radiation. Well, they found a shadow on my right lung, so they decided to do a Ct to confirm, which it did followed by a biopsy which confirmed Melanoma. Now the best option at this point was to get into the BMS trial of NIvolumab and Ipi. In order to qualify they had to rule out the thyroid issue, so  a hemi thyroidectomy was ordered. It turned out that it wasn't cancer. The point that I am trying to make is that scans are usefull but limited in what they actually tell us. A Biopsy is much more accurate in helping to determine what is going on. I know that it can be really tough to get the news that you have Melanoma again. If you don't feel confident in your Oncology a second opinion would be a good idea if you can see one without a long wait. Wishing you the best!!!! Ed  

                                    ed williams
                                    Participant

                                      Hi Eileen, just wanted to share a Pet scan story. I had my thyroid light up 2 years ago and they decided to watch and wait since many small tumors in thyroid tend to be nothing. They did do a biopsy of the thyroid which found Hurtle cells.  A few months later my Oncologist decided to do a x-ray of my body rather than a Ct-scan, his reason was he didn't want to give me too much radiation. Well, they found a shadow on my right lung, so they decided to do a Ct to confirm, which it did followed by a biopsy which confirmed Melanoma. Now the best option at this point was to get into the BMS trial of NIvolumab and Ipi. In order to qualify they had to rule out the thyroid issue, so  a hemi thyroidectomy was ordered. It turned out that it wasn't cancer. The point that I am trying to make is that scans are usefull but limited in what they actually tell us. A Biopsy is much more accurate in helping to determine what is going on. I know that it can be really tough to get the news that you have Melanoma again. If you don't feel confident in your Oncology a second opinion would be a good idea if you can see one without a long wait. Wishing you the best!!!! Ed  

                                        tschmith
                                        Participant

                                          Hi Eileen!  I haven't been treated by Dr. Sharfmann (although I've heard he's excellent), but I have been under the care of Dr. Evan Lipson from Johns Hopkins.  He specializes in Melanoma and I think he's great.  He was very proactive in getting me into a trial at NIH and then the Merck Extended Access Program at Georgetown.  (Hopkins didn't have the EAP at the time or I would have stayed with Dr. Lipson.)  I've continued to get Keytruda at Georgetown (Lombardi Cancer Center) and I really like my doctor there as well.  Hi name is Dr. Michael Atkins.

                                          Best Wishes to you!

                                          Terrie

                                          tschmith
                                          Participant

                                            Hi Eileen!  I haven't been treated by Dr. Sharfmann (although I've heard he's excellent), but I have been under the care of Dr. Evan Lipson from Johns Hopkins.  He specializes in Melanoma and I think he's great.  He was very proactive in getting me into a trial at NIH and then the Merck Extended Access Program at Georgetown.  (Hopkins didn't have the EAP at the time or I would have stayed with Dr. Lipson.)  I've continued to get Keytruda at Georgetown (Lombardi Cancer Center) and I really like my doctor there as well.  Hi name is Dr. Michael Atkins.

                                            Best Wishes to you!

                                            Terrie

                                            tschmith
                                            Participant

                                              Hi Eileen!  I haven't been treated by Dr. Sharfmann (although I've heard he's excellent), but I have been under the care of Dr. Evan Lipson from Johns Hopkins.  He specializes in Melanoma and I think he's great.  He was very proactive in getting me into a trial at NIH and then the Merck Extended Access Program at Georgetown.  (Hopkins didn't have the EAP at the time or I would have stayed with Dr. Lipson.)  I've continued to get Keytruda at Georgetown (Lombardi Cancer Center) and I really like my doctor there as well.  Hi name is Dr. Michael Atkins.

                                              Best Wishes to you!

                                              Terrie

                                              Maureen038
                                              Participant

                                                I agree with Ed that I would get a second opinion. My husband went for a consult with Dr. Sharfman. He is a very knowledgable doctor, but we felt he was not aggressive in his approach to treatment. Is it possible for you to see Dr. Lipson? If you are uncomfortable with the treatment you are getting, it's very important to get a second opinion. Good luck!

                                                Maureen

                                                Maureen038
                                                Participant

                                                  I agree with Ed that I would get a second opinion. My husband went for a consult with Dr. Sharfman. He is a very knowledgable doctor, but we felt he was not aggressive in his approach to treatment. Is it possible for you to see Dr. Lipson? If you are uncomfortable with the treatment you are getting, it's very important to get a second opinion. Good luck!

                                                  Maureen

                                                  Maureen038
                                                  Participant

                                                    I agree with Ed that I would get a second opinion. My husband went for a consult with Dr. Sharfman. He is a very knowledgable doctor, but we felt he was not aggressive in his approach to treatment. Is it possible for you to see Dr. Lipson? If you are uncomfortable with the treatment you are getting, it's very important to get a second opinion. Good luck!

                                                    Maureen

                                                  ncdaniel
                                                  Participant

                                                    Only one comment I found in my wife's case I always requested a copy of every ct / MRI report. Many timesaver lot of doctors do not get into the detail good or bad. I would always ask for report copies. I wish you the best in your treatment.

                                                    beat the beast!

                                                    ncdaniel
                                                    Participant

                                                      Only one comment I found in my wife's case I always requested a copy of every ct / MRI report. Many timesaver lot of doctors do not get into the detail good or bad. I would always ask for report copies. I wish you the best in your treatment.

                                                      beat the beast!

                                                      ncdaniel
                                                      Participant

                                                        Only one comment I found in my wife's case I always requested a copy of every ct / MRI report. Many timesaver lot of doctors do not get into the detail good or bad. I would always ask for report copies. I wish you the best in your treatment.

                                                        beat the beast!

                                                        Eileensulliv
                                                        Participant

                                                          Thank you all for your replies! I am still trying to learn to navigate this whole process, and educate myself on the different treatments out there. From your replies, I definitely do feel better about my local oncologist, but am still very much looking forward to getting an appointment at Hopkins. My oncologist's office has called Hopkin's referral line several times since Friday, and has also faxed them my information, and I tried calling as well, but we have heard nothing from Hopkins yet. Possibly because of the holiday weekend. I will see what my oncologist's office says tomorrow about that appointment at Hopkins, but at this point I am going to look elsewhere, as well. Thank you all for your helpful and uplifting replies!!!

                                                          Eileensulliv
                                                          Participant

                                                            Thank you all for your replies! I am still trying to learn to navigate this whole process, and educate myself on the different treatments out there. From your replies, I definitely do feel better about my local oncologist, but am still very much looking forward to getting an appointment at Hopkins. My oncologist's office has called Hopkin's referral line several times since Friday, and has also faxed them my information, and I tried calling as well, but we have heard nothing from Hopkins yet. Possibly because of the holiday weekend. I will see what my oncologist's office says tomorrow about that appointment at Hopkins, but at this point I am going to look elsewhere, as well. Thank you all for your helpful and uplifting replies!!!

                                                              Maureen038
                                                              Participant

                                                                Please try to make an appointment with Dr. Lipson at Hopkins and Dr. Atkins at Georgetown. They are the best melanoma specialists in the area unless you would want to travel to Sloan-Kettering and see Dr. Wolchok.

                                                                Maureen

                                                                Maureen038
                                                                Participant

                                                                  Please try to make an appointment with Dr. Lipson at Hopkins and Dr. Atkins at Georgetown. They are the best melanoma specialists in the area unless you would want to travel to Sloan-Kettering and see Dr. Wolchok.

                                                                  Maureen

                                                                  Maureen038
                                                                  Participant

                                                                    Please try to make an appointment with Dr. Lipson at Hopkins and Dr. Atkins at Georgetown. They are the best melanoma specialists in the area unless you would want to travel to Sloan-Kettering and see Dr. Wolchok.

                                                                    Maureen

                                                                  Eileensulliv
                                                                  Participant

                                                                    Thank you all for your replies! I am still trying to learn to navigate this whole process, and educate myself on the different treatments out there. From your replies, I definitely do feel better about my local oncologist, but am still very much looking forward to getting an appointment at Hopkins. My oncologist's office has called Hopkin's referral line several times since Friday, and has also faxed them my information, and I tried calling as well, but we have heard nothing from Hopkins yet. Possibly because of the holiday weekend. I will see what my oncologist's office says tomorrow about that appointment at Hopkins, but at this point I am going to look elsewhere, as well. Thank you all for your helpful and uplifting replies!!!

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