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July 20, 2012 at 7:55 pm #20502bon15Participant
This may sound rather harsh but I do wonder why, when melanoma in situ is 100% survivable, a fellow member is being congratulated for reaching the five years post diagnosis and other in situ members are also either adding their post diagnosis milestones or detailing their fears and difficulties in coming to terms with their situation.
I recognise that some sources quote a 99.5% survival rate but this merely reflects that once in a blue moon there may be an incorrect pathology report. Melanoma in situ, correctly diagnosed, is not invasive and does not kill.
Even taking a pessimistic rate of 99.5% survival, this represents a mortality rate of 1 in 200. As a stage 1a, I face a survival rate of 95% which, although does not sound much less in percentage terms, equates to a mortality rate of 1 in 20 and is a far worse situation to come to terms with. Stage 1b and stage 2 members face even higher uncertainty.
If I had the relative good fortune to have caught my melanoma at such an early stage that it was in situ, I would have looked at this as a wake up call. Obviously, I would then be extra vigilant of any new moles etc and would exercise caution in the sun but why would I feel the need to keep coming back to a section of a forum meant for “newly diagnosed- Stages 1 & 2”, people who face a real threat to their survival in the short term.
I apologise if fellow members take offence to my comments but I just want to get across to in situ members how lucky they are not to be facing any real threat to their health. I can see that there is a need, particularly when first diagnosed, for them to receive help/ reassurance via a forum like this but maybe a completely new section should be set up to meet the needs of “stage 0”.July 20, 2012 at 8:00 pm #55601cohanjaParticipant
Not sure where you got the IA 95% rate, but I wish I could even believe that. I’ve seen 90%, 88%, even some studies that said if male, axial location, VGP, MR >0, that recurrence rate is as high as 30%. I worry the rate isn’t even as good as 95% for IA.July 20, 2012 at 8:57 pm #55602goldengirl2011Participant I see it this way – not only are they sharing their great news of 5 years NED (even if it is in-situ) but they are also sharing their feelings & providing hope to those that are newly diagnosed.
Newly diagnosed folks share the same fears, whether stage 0,1,2,3 or 4. Sure, early stagers may have a much better prognosis than those with 3 or 4, but initially the fear is very real & runs very deep.
No matter what the stage, to be able to post a status of NED, should be welcomed by all & applauded.July 20, 2012 at 9:07 pm #55603Catherine PooleKeymaster
I can see both viewpoints here. I was a bit more risky than insitu, .76 vertical growth phase and pregnant. I knew I should be happy with the 90% I was given, but I was worried about that 10% and not being around for my children. However, by the second year after this diagnosis, I stopped worrying and moved on with my life. I hope others will do so as well. But we try to be non-judgemental if we can. I can’t possibly tell you how sad it is to help folks at the other end of this spectrum in diagnosis and how lucky the insitus and low risk patients are to not be dealing with this disease in stage 3/4. So I will take any good news we get here and celebrate.July 20, 2012 at 10:34 pm #55604bon15Participant Cohanja, I got the 95% survival rate from my consultant dermatologist and this also agrees with the rate shown on the American Cancer Society website. The Royal Marsden Hospital, the major cancer centre in the UK, gives a 93% rate on their prognostic model and I got a figure of 96% on the AJCC based prognostic tool. My consultant has been practising for 9 years in his current role at a fairly large UK hospital and he said that, personally, he has not yet had any stage 1a patients that have progressed. Hope I’m not the first!
Goldengirl, in my view the status of NED can only be applied to invasive melanomas where there can never be any guarantee that surgery has given a cure. In the case of in situ, surgery cures the melanoma 100% so there will always be no evidence of disease in later years.July 21, 2012 at 12:34 pm #55605WorrywartParticipant
I’m one of the in situ members who visits this board. I do so because I like to help people. There is fear in any cancer diagnosis. In situ melanoma has same survival stats as DCIS breast cancer…and no one ever downplays that cancer. The scary part for anyone with a cancer diagnosis is that your body allowed cells to grow out of control…YES, we got to the Dr before you did so we had ours removed at an earlier stage, but had we waited, we could easily have been stage 1 or worse. It’s still a cancer diagnosis and one that has to be digested and accepted. I don’t worry anymore because I’m 4 yrs out, but I am a person who craves knowledge so I’ve learned a lot about melanoma since my dx, and I like to share that info.
Maybe this site should have a separate in situ page for those of us with in situ? I’m not offended at all by your post because I do see your point. I feel that same way when people freak out about an atypical!July 21, 2012 at 3:29 pm #55606Webbie73Participant
I agree with Bon15 for the most part. This board was very helpful when I was first diagnosised. We all need to learn about melanoma. What I don’t understand is how some posters seem to obsess over pathology reports like they can not believe they are in situ or stage 1. Sorry if I step on any toes here. Come here to learn from Catherine and to help newly diagnosed posters but go out and live.July 21, 2012 at 4:57 pm #55607cohanjaParticipant You say you agree with Bon15, but it seems like Bon15 is distinguishing Stage I/II from in-situ.. . saying in-site have nothing to worry about, unlike Stage I/II. So, if you agree with Bon15 you might say in-situ folks – don’t worry, just live, etc… but not necessarily say that to Stage I/II. . .with the same “you’ll be fine” certaintyJuly 21, 2012 at 11:57 pm #556087spiderParticipant I understand and agree with what Webbie and Bon are saying. Excessively scrutinizing the pathology reports is crazy. It won’t change your diagnosis, treatment plan or the recommended follow up care. The way I feel about it is, I got stage 1b melanoma, don’t like it but I’ve done what the Drs said to do, listened to the advice that Catherine and others gave me on what’s what. Do what your supposed to do and hope for the best and be grateful you caught it in a early stage.July 22, 2012 at 2:50 am #55609alliParticipant I understand what the op is saying, to an extent. That kind of feeling is why there are separate sections for stage 3 and stage 4 on this forum. However, as an in situ survivor, it does hurt some when my cancer diagnosis is dismissed. As Worrywart said, breast cancer that is DCIS is very, very similar to in situ melanoma in terms of survival stats. And she is right- no one dismisses concerns by those with that diagnosis.
That being said, the further away I get from diagnosis, the less melanoma scares me, even though I also have dysplastic nevus syndrome. I am at the point now where I pretty much do whatever I want, whenever I want outside. I wear sunscreen and a hat. I was on vacation last week and am now brown, (that is just what happens to me whenever I go outside in the sun, even with sunscreen). It doesn’t worry me. I am going to live my life and have fun with my kids.
I think it would probably be best to have a board here for in situ folks, especially newly diagnosed. It is very scary to go through all that at the beginning. Then, those folks who need support could visit there freely without bothering people with a later stage diagnosis. I visit here to help others when I can, and would be happy to do so on a board for those with an in situ diagnosis.July 22, 2012 at 4:19 am #556107spiderParticipant
I guess it would be great to have an additional separate forum for insitu people, but I believe Catherine has a limited staff and moderating five separate forums and responding to questions and concerns of all of them is enough work. Don’t yall think so ? I’d rather they continue to address the questions and concerns of the new patients and the much sicker people in stage 3 and 4. I mean how many times must some people be told they have a very good prognosis and great odds that it’ll be ok. Just do your checkups and keep a close eye on your skin.July 22, 2012 at 3:22 pm #55611martiParticipant When I was diagnosed 3 years agowith SSM, Breslow at least 0,64, on my outer ear, SNB: some Melanoma cells in the node under my ear, I had no knowledge of this forum. Looking on the internet reading stories of people who died from Melanoma – I was sure it was my death-sentence.
Since I did not wanted to put this burdon on my family, I did not speak about my fears with anoybody.
Then I found this forum, no one seemd to be judging any questions, but advise and encouragement I found, and to me it was a source of invaluable information.
Yes I understood I was on the best side of this forum, and I expressed that as well.
Over the 3 years I did not have to fight melanoma, but was confronted with more diagnostic procedures, then ever before. Most people understand the fears that comes with the waiting for results. Because of my “background”I underwent 3 more biopsies, three ultrasound and needle aspirations of lymfenodes in neck and parotic glands. Not to mention the biopsy from a private mucosal area – an unforgivable area, and a colonoscopy. The skin-check-ups with the derm – where you have to strip naked, is also not something to look forward to. This all comes with the diagnosis Melanoma. I was happy that Catherine and so many others have helped me getting through.
Since received so much help in this forum, I tried to help others, as they helped me.I congratulated fellow NED free visitors, since I thought that they deserved that – and was happy for them.
I understand that this is not everyone’s opinion, and to an extend I understand their feelings as well, but please never underestimate the effect of a Melanoma diagnosis, at whatever early stage it is caught.
martiJuly 22, 2012 at 5:49 pm #55612Catherine PooleKeymaster
Thanks Marti, I value your comments and all of the others, too. I do think we will keep the insitu folks grouped in with the stage 1/II folks, because that is really where they belong in my mind. Some think of insitu as being stage 0 which I will ask Dr. Mihm about tomorrow. But I think once you are diagnosed you do go through all of the same scary feelings. Some folks take longer than overs to recover from this threat on their lives, and what could happen. So we try to be understanding that everyone is different in coping and help them cope better. I felt silly when I freaked out because of the good odds I was given but I’ve come to see that was ok. We will consider a seperate forum for insitu in the future if we get more staff to help monitor.July 22, 2012 at 9:02 pm #55613krissy424Participant The first time i posted here, I didn’t even understand i have good odds. The medical assistant from the Derm had me focused on Clark 2 along with her puppy dog eyes. I had no clue that I was 1A until you all educated me. As a former moderator of non-medical boards i have to say, “no question is a dumb question”. Dumb only if the question is never asked.July 23, 2012 at 1:26 pm #55614MeggptParticipant I agree with Krissy. My doctor did an extremely horrendous job at explaining my in situ diagnosis to me and at first and this forum helped me understand the nature of my stage as well.
Also, since many of us go through a number of biopsies following the initial diagnosis, having support along the way also means a lot.
From what I understand, a massive part of the healing process is mental, so the support of people who have been down that path helps with that a lot. As weird as it is, facing a diagnosis of cancer of any kind, accepting that everything might turn out all right, is harder than the alternative.
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