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I am from New Zealand and have found this site. I too have invasive extramammary pagets of the vulva diagonised in Fed this year. I have already had 3 operations to remove the recurrance pagets, but unfortunately mine had cancer cells that had invaded deeper than the 1mm safety margin.
It is so good to finally find people who have this disease. As NZ is a small country there are not alot of doctors here that have even seen anyone with is disease, which doesnt help me much.
I have had 22 groin lymph nodes removed 12 from each side as well as half my vulvar removed. 3 ops later and it is getting extremely uncomfortable. I cant wait to be able to sit properly and get rid of the pain in my legs from the lymphodema I now have.
It has only been 2 weeks since my last op and it has already returned. My doc is away on holiday so he doesnt even know it is back yet until I see him on the 1st of Nov.
I have done heaps of research and have found alot of information, but sometimes it doesnt pay to read as the outcome of invasive in not good. I am only 45 and am definately not ready to give up just yet. Everytime I have an operation they tell me that they have got it, but within 2-3 weeks its back again.
Anyway thanks for listening to me bleet on, but it is good to get it out.
DeniseView Thread
What can I expect from all this...just how dangerous is this diagnosis?
I am anxious about it and should I be, at this point?
Just wondering if anyone can help me with this.
MarilynView Thread
I have two questions: 1) anyone been diag w/colorless melanoma? from what my dr and the drs @ MDAnderson say it is fairly rare and harder to treat...I'll be glad for any input. 2) anyone used or currently using Yervoy? I'm very anxious about side effects and results.
Thanks for any input. I'm very happy to have found this discussion board. I look forward to talking with all of you. AggieMom04.View Thread
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Thanks
GNView Thread
In February this year, I accidentally saw this brownish color around the black mole, not sure if it had been there before cause I never really paid many attention to that mole(the reason why I said that it didn't change in size is by comparing to my photos taken years ago, but photo quality ain't good enough to enlarge to be able to see if there's brownish color around the mole). That brown area is still the same until now compare to photo of the mole taken in February
A month ago, I found that there's another small area of the skin to the up of the brownish color outside the black mole, that area turned into a light brown color until now. I've made an appointment to see a dermatologist but need to wait till November.
The black mole itself is slightly raised, the border is very distinct though and you can clearly see the border from the brownish color around it. The black mole itself is almost round in shape and from what I see, it's quite symmetric.
There had been no other sign like itchiness or bleeding etc.
P.s I don't sunbath but I don't like to use sun screen when I go out(but I've started using sunscreen like a year ago)
I'm quite worried about the possibility of melanoma and can't sleep well these days. Do you think it's melanoma?View Thread
Indoor Tanning Beds Linked to Common Skin Cancers
- Those of you who have basal or squamous cell - What do you think about the last paragraph of the article?
- Do you think indoor tanning should be banned?
- Are you an indoor tanner? Do you think this study will change how you tan?
ElizabethView Thread
Any thoughts on the likelihood of such a simultaneous occurrence,? Also, the tentative plan is Mohs surgery. I have concern using Mohs when Melanoma frequently has non-contiguous micro-satellite lesions that would presumable be missed using the Mohs approach. Any thoughts?View Thread
I recall hearing that antibacterial soap stripped our skin of natural oils helpful in screening the skin from the sun; am I mistaken or has that been disproved?
I started to use the craft soap and had a good check-up for the first time in a long time.
View Thread
So on July 27, 2012 after five years of no medical insurance, I felt the need to obtain health insurance and visited a dermatologist because of a mole on my right posterior thigh which was dark in color and getting remarkably larger in size. a Biopsy was taken and aprox five days later the doc called and told me i had a insitu melanoma which he referred me to a plastic surgeon for removal. While at the surgeon, he also excised 4 additional "suspicious moles" and noted multiple others but only removed 4 in addition to the wide insicision on my already dignosed melanoma. Nine days after my surgery i went to get stiches removed and ALL four biopsies show + M (positive melanoma). I was sent home and told to keep track of moles and have a derm check me every 3 months. What the HECK?!?!?! i'm so scared and so confused!!!! Does % positive MELANOMA findings not warrant or cause concern for a more aggressive treatment plan?!?!?! I mean whats to say that the other 200 hundred "suspicious mole" i have located on my body dont have melanoma growing thruout and possibly invasion of my lymphs? If anyone has any suggestions on what i should do please please respond, im beyond scared due to my risk factors and and increased risk for more melanomas which cause me feelings of hopelessness and impending doom . I just need some answers or advice on what to do next.View Thread
I have an appointment with my dermatologist next week but am actually really stressing as I wait.
Information on-line has said that the third most likely spot that skin cancer is detected is on the ear. I don't think I've ever put sunscreen on my ear and have always lived in sunny Southern CA. Needless to say, we spend the entire summer at the beach or pool.
Can anyone give me any insight?
Thank you.
View Thread
My question:
Since the melanoma has metastasized as much as it has, at what point does one determine whether or not the Ipi is working?View Thread
View Thread
http://1.bp.blogspot.com/-mdTHV9zgfX8/TVNiE86sZiI/AAAAAAAABkw/vjcTNnHtvlc/s1600/Melasma.jpg
but not on the face. It is TENDER and sensitive to touch, asymmetrical, and flat. It does not appear to have grown any larger over the years.
Could it be just a more severe case of melasma?View Thread
I can recall at least one sunburn in my childhood (or early teens?), but no more than 2-3 (perhaps just 2, but not 100% sure - how can really recall their childhood so well anyway...?). Mostly within the last 5 years I've done a lot of work on our 5 acres of land and odd jobs out in the sun unprotected (always tanning I guess) along with a normal life of going outside without thinking about protection like anybody else. I've been to a tanning booth twice.
Anyways, I was invited to play tennis the other day with my family and moved my sunscreen out my car (normal storage place). I started playing tennis realizing that I didn't have my sunscreen and it was all the way at home. It was a 35-40 min. drive to go back home and get it and we were only going to play for 90 minutes. I decided to stay unprotected in the sun. I didn't want seem weird to my family about complaining about not having my sunscreen. Why am I in the wrong if I can't do anything about it? I mean, it's easy to forget things and gets frustrating. I believed my family didn't have sunscreen on either (but boy was I wrong as one of them did!)
I didn't even think about a 10 min. trip to the nearby store to buy some more sunscreen. We were out in the sun from 1:30-3:00pm. I live in WA state, USA (northern US). I'm pretty sure we were out in least high UV (6-7/10). After 3:00pm onward I seeked shade. I seem to only get the worst of the sun at the most unfortunate circumstances. My fault??
Now I really regret doing this more than I did at the time. My skin is really dark but not burned. No peeling. Some warmth, some itching, some irritation/stinging. You can see some redness. My face, neck, ears, arms, and legs all got it. Not too bad, but a half an hour more maybe and I was real close to another sunburn.
Am I over-worrying or not? My cure to the issue is to keep the sunscreen bottle with my wallet and keys and keep it in my jean pocket, so it's always with me. I plan to get genetically tested in the future for all cancers and keep on eye on my skin for changes in the future as well as see a dermatologist as needed.
Source: I have a degree in biochemistry so I understand the mechanisms of tanning/burning.View Thread
Thanks
dubbyView Thread
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