CancerCompass message board discussion started by Kristy98 on 6/16/2006 http://www.cancercompass.com/message-board/message/all,5691,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad just found out he has skin melanoma on his leg. They are planning on removing a large amount of tissue from his leg and then doing a skin graft. I am very scared for him because we a not certain the stage or if it is in his lymph nodes. He has battled being overweight his whole life and now this is the battle. Does anyone have any advice to give me on how to just get through this? Any advice on how to help him to get through this without him knowing I feel like I am dying inside, he is only 43 and my two kids love him so much. They are 6 & 2. How do you explain this to kids? I feel like I have so many questions and no answers. Kristy98 Fri, 16 Jun 2006 00:00:00 GMT Hi Kristy98 May of 2005, I was diagnosed with a skin melanoma on the back lower part of my right calf. It was small, but deep. It was a Clark 4. Pathologists use the Clark or Breslow method to distinguish the depth and what level. During the wide incision operation, they removed 2 of my lymph nodes from my right groin. The sentinal node and one other.(This is what they will do with your dad). Both of my lymph nodes had microscopic metastasis in them. Therefore, all the remaining 11 lymph nodes had to be removed and biopsied. One out of this 11 had microscopic mets. This put me at a Stage IIIB. Fortunately, a PET scan of my whole body and CAT Scan of my chest abdomen and pelvis did not show any other metastasis. At my Stage, I had to have the IV chemotherapy of Interferon. 19 treatments is what they would like to see you complete. I made it to 13. I retained 20 lbs of fluid everywhere in my body and I was too toxic to continue. After that, I chose to do the home injections of the Interferon 3X a week for a year. That's a whole topic in intself...I wont' go there now. Hopefully, if your dad's 2 lymph nodes come back negative for cancer, I believe he will be a Stage II...that would be just GREAT NEWS. I do not know if chemotherapy is advised with a Stage II. Kristy, my best advice to you and your dad is...GO TO THE BEST Melanoma Clinic or Oncology Clinic and an oncology doctor in your area or maybe you will have to travel a little bit. My Steve and I would have to drive an hour and a half into Boston to the Beth Israel Melanoma Clinic. The traveling is worth it!! I have worked in the medical field all my life, but cancer wasn't my speciality, so I did a lot of research with the internet to understand just what I had. Did your dad have a PET Scan, CAT Scan of chest, abdomen and pelvis done. My primary Dr. ordered these tests immediately when I was first diagnosed. Those tests are to rule out any spread of the melanoma to other organs. If it had spread, that would be a Stage IV...NOT GOOD!! Kristy, I can't tell you not to worry. I don't know if you are spiritual or not, but I did a lot of praying and asked God to help me be strong thru this all. For now, just tell the kiddos that grandpa is having a "boo-boo" removed that just didn't heal right. Please keep me posted as to how your dad makes out with the lymph nodes. Is an Oncology Surgeon going to "clean the margins" and do the skin graft? I highly recommend that. If you are having just a regular surgeon do it, I would find an Oncology Surgeon to do it, if you can. That is THEIR Speciality and they know how much of the area around the melanoma to remove. You and your family are in my prayers. Please keep in touch. Sincerely, DebBiz Debbiz Sun, 18 Jun 2006 00:00:00 GMT Hi Kristy, I just read a couple of your emails and thought I'd share my story with you. Please keep in mind that I share this with you not to scare you, but to encourage you to be aggressive from the get go and research all that you can, in case your father's situation needs additional treatments pass surgery. I just lost my mom 3 weeks ago, July 3rd, to Melanoma (and complications from the treatments). She was 53 years old. She was diagnosed with stage IV last November. She underwent 3 surgeries to remove the mole on her arm that kept coming back. After the 3rd surgery, we found out that it spread to a few lymph nodes under her left arm. We had those, along with the surrounding lymph nodes removed. In December, we found out that it matastized to her lungs and a spot on her spine. She started on Interferon first for roughly 2 months with no success. All it did was tear down her energy. We seeked another local doctor who started radiation and oral chemo (Salydimide and Timadore). These 2 oral treatments really had bad side effects and affected her overall health, not to mention didn't really have any success either. In the meantime, we had contacted the Angeles Clinic (part of the John Wayne Cancer Institute) in Los Angelos, CA. They are Melanoma specialist and Dr. O'Day is nationally and internationally known for his credentials and knowledge with this disease. He is also a reknown speaker on this disease. We took my mom there on June 8th. He took one look at her, told her to stop taking these 2 medications, and that he would find her a different protocal. He was very positive and told her that he had treated many patients in a lot worse condition than she was in. She couldn't walk, talk (at that time), eat (had a feeding tube) - just very miserable. A very positive doctor is crucial in the treatment of this disease and for the overall attitude of the patient. This clinic has lots to offer. If you have insurance issues with not covering it, fight it. We kept on her insurance company until they approved this clinic. Dr. O'Day was so positive and told my mom that it was still treatable. Unfortunately, she ended up in the hospital with internal bleeding along with other complications that ultimately took her from us. I tell you this with a very saddened and broken heart, but hopefully maybe you can get something out of this for your father. Hopefully, his scans will show no further issues, but if it does, my advice to you is to research all you can. Go online and check out the Angeles Clinic. I would start there right off the bat, instead of dealing with local doctors that never seem to communicate with each other and stay aggressive enough. I think sometimes that if we had started off with the absolute best instead of staying local, then my mom may still be here today. I'm pregnant with my first child (at 34 years old) and I would surely love to have my mom here for advice. At least she knew that I was FINALLY going to have a child of my own and that did make her happy. So, I know how worried and scared that you are....you have to just hang in there and be positive for your dad. And please research all that you can. Take care. You and your dad are in my prayers. Tracie Mobile, AL Tmoss Sun, 23 Jul 2006 00:00:00 GMT