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March 20, 2013 at 3:38 am #21119blueeyes39Participant
i am a 39yr old women who was diagnosed on Feb 1st with melanoma. since then i have had it removed from my left forearm(3.5mm deep) and also one lymph node from left arm pit. i have seen 3 different doctors and they all say that i should do clinical trial. the issues im havin is that i dont want them to remove the rest of my lymph nodes due to my pet scan did not show the other ones have cancer. i also feel if i am chosen to just b observed…..that i am doing nothing to get rid of it and to help me live longer. It seems the drs only care about the clinical trial. im so confused and frustrated at all this. Interferon has been discussed but they say i shouldnt do it but its always my choice. someone please help make it easier for me to make this decision. i starting to question whether the medical field really care about the people or just the research they can do on us. my melanoma is T3a N1a Stage 3. i also have a friend whos cancer was described as mine and they did interferon on her…..she has now been cancer free for 6 years…..and that story makes me question things even more. thank u for ur help .March 20, 2013 at 7:31 am #59704GillyParticipant So sorry for your diagnosis – my hubby was stage 3 c (he had 3 nodes infected and his primary was deeper than yours and ulcerated and on his chest) he had a full axillary clearance – he was offered interferon – but his team said that in their opinion it really wasn’t worth the side effects as it does NOT prolong your life – he chose not to have it and we are very pleased he didn’t – he continued normally – being watchful and having regular checks is just as good and you dont have to put up with the side effects – it is a hard decision because you feel it might do something but my hubby continued life untainted by side effects – a MM colleague chose to take it and for him it was like having flu for 4 months (when he stopped it). All the best in your decision !!March 20, 2013 at 7:39 am #59705GillyParticipant I forgot to add – it is wonderful your friend is cancer free after 6 years but there is nothing to suggest it was the interferon – it could simply have been where her cancer was, the stage, its agressivity , whether it had shed any cells – there are so many variables you have to really make the decision for your own situation at your particular stage – sadly all the recent evidence shows that each cancer is different so comparisons are not helpful unless there is a proven benefit with a drug – in the case of adjuvent interferon there isn’t. Discuss it with your team.March 20, 2013 at 1:35 pm #59706Catherine PooleKeymaster Gilly has done a fine job of answering your post. You seem to think of interferon as a choice and I know that the choices are slim for stage III. What trial do they want you to enter? Full node dissection does seem like overkill and there is a study to determine if it does prolong overall survival. Careful surveillance is often a good road to take with stage III because of the lack of good options. Sorry we can’t really “tell” you what to do, but you have to decide what is best for you! Let us know how you are doing, we are here to support you.March 20, 2013 at 1:57 pm #59707HeatFireParticipant Im only stage I, but just a tip is to do what you really feel is right for you.
if you don’t wanna risk all the pain and problems from having your lymph nodes removed dont do it.
i felt kinda overrun with my operation he removed alot more then he first said. leaving me in pain for 8 months, still in pain but alot better now i can almost walk like a normal person. If i was the one really making this choice i wouldnt be as upset.March 20, 2013 at 9:37 pm #59708washoegalParticipant
I think maybe you misinterpret the doctors. One of the reasons they suggest clinical trials is because there are very few options for those of us that are stage 3. I really think the doctors are trying to give you the best shot. Unfortunately, the options that are available are not very good. Interferon is really the only approved treatment besides surgery for stage 3a and I am sure you are aware that it has very limited benefits. Some doctors will now do a partial removal of more lymph nodes, I wish this had been available to me.
I had a 3mm tumor with 2 nodes positive. I choose to have the rest of the nodes removed and then close monitoring after that. Yes, I do have some complications but I am still happy with my decision. It is a very personal decision. You must consider lifestyle, support system, tolerance for discomfort, and many other things. Look closely at all your options, ask a lot of questions and then decide what you feel is best for you …then never look back!
Stage 3March 20, 2013 at 11:30 pm #59709blueeyes39Participant
thank u all very much for the information. the study the drs want me to b a part of is multicenter selective lymphadenectomy for melanoma trial 2…and it is sentinel and complete lymph node dissection vs sentinel lymphadenectony alone. i am still confused on what to do but i have time. my biggest worry is the what ifs of everything and how strong cancer of all types run in my family. again thank u all for the suggestionsMarch 21, 2013 at 8:24 pm #59710LinnyParticipant One advantage of participating in a trial is that you’ll be under frequent observation by your doctor. And that’s not such a bad thing.
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