› Forums › General Melanoma Community › My story, new to this board, looking for guidance, positivity, and prayers
- This topic has 6 replies, 2 voices, and was last updated 12 years, 3 months ago by
ramannjr.
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- August 3, 2012 at 6:01 pm
In April 2006, I found a black mole on my right ankle. After having it punch biopsied by my dermatologist and looked at by pathologist, it
was determined it was 1.4 mm melanoma. I had WLE done and no chemo/immunotherapy. I remained fine with no new moles or anything
unusual until April this year. I had a marble sized raised bump on my upper right thigh. After months of testing, I found out last
week that it is a melanoma from the original melanoma. They had to send it to the Mayo clinic to confirm with an expert. Last Thursday,
I met with a surgical oncologist and oncologist. I had surgery on Friday, another WLE and SLN dissection. It turns out that there
were no traces of melanoma in the WLE site, but there are a couple of microscopic traces of melanoma (I believe 2 and they are less than 0.4
mm). The oncologist on Thursday, said best case scenario (no melanoma in lymph nodes, all WLE site is clear and PET scan is clear),
I would have to do weekly Interferon shots once a week for a year and be PET scanned every 3 months. My PET scan is scheduled for this
Tuesday. I'm hoping and praying it has not spread beyond the lymph nodes in my right groin. The surgeon already is recommending a
lymphendectomy of the right groin area, but is awaiting the PET scan to determine if surgery is required anywhere else. I meet with the
oncologist to go over everything next Thursday and come up with a plan. Do you have any idea what I might expect to be done? I'm
very scared right now. I'm 38 yrs old, married happily with an 8 month old son. I'm hoping I can get through this. Is there a
chance for a cure in my situation you think? The surgeon told me 24% 5-yr survival rate, which has really scared me. That was a general stage IV number?I feel okay now and I'm healthy, do you think I have many years left?
Does anyone know of a good oncologist in the St. Louis area that specializes in
melanomas? I'm currently working with Dr. Ryan Neff on the surgical side and
Dr. Hsiao O. Hu on the treatment side. I'm mainly going with them based on insurance tiering.
Thanks,
Roger
- Replies
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- August 5, 2012 at 4:33 am
Welcome to this melanoma website……hopefully you find all the answers to your questions….but more importantly you find support and a place to go when you're feeling really distressed with your disease. Melanoma is so scarry and especially when you are first diagnosed. I don't know why, perhaps it's what we're tuned into but it seems like all the info you read is so negative and without hope! I thought I was only going to live for 6 months…….and here I am today, almost 3 years out and not a whole lot worse….although, I have had many surgeries and a couple treatments. I continue to learn new things about melanoma and reading this board helps me understand how all of us are coming from different diagnosis, treatments and stages but how we all can benefit from the posts we read on this board. You might benefit by reading old posts, there is so much information to be gained but it takes time and being familiar with terms….there's such a learning curve and the more you dive in and educate yourself the better you can understand the conversations with your doctor. This all takes time though and you must give yourself breaks or it just drags you down. The most important factor I have learned and work hard at is…boosting my immune system. I don't do crazy, wacky things but I do focus on the food I eat and use a few supplements. I have gone to a less meat diet but have not eliminated and still enjoy my wine and sunshine…..but limit their use!!
My heart aches for you as I remember being in your shoes…..the future seems so uncertain. I was diagnosed at stage IV and felt my life would be over soon. It is only fair that your physicians are truthful and tell you exactly what you are up against, afterall…they are physicians. However, it doesn't mean it will come true for you or that you cannot survive. As a suggestion, cling to the most positive information and invision that it will happen for you. Please do not waste a day, live to your best level of energy and remember that any down time that you give to melanoma, defeats your power to win this battle…..you are in the Olympic's now and every second counts…..go for the Gold, you can do it…..WIN!!
Sending you positive energy, prayers and hope (like the rest of us here)…..you will survive and go on to help others!
Blessings….
Swanee
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- August 5, 2012 at 4:33 am
Welcome to this melanoma website……hopefully you find all the answers to your questions….but more importantly you find support and a place to go when you're feeling really distressed with your disease. Melanoma is so scarry and especially when you are first diagnosed. I don't know why, perhaps it's what we're tuned into but it seems like all the info you read is so negative and without hope! I thought I was only going to live for 6 months…….and here I am today, almost 3 years out and not a whole lot worse….although, I have had many surgeries and a couple treatments. I continue to learn new things about melanoma and reading this board helps me understand how all of us are coming from different diagnosis, treatments and stages but how we all can benefit from the posts we read on this board. You might benefit by reading old posts, there is so much information to be gained but it takes time and being familiar with terms….there's such a learning curve and the more you dive in and educate yourself the better you can understand the conversations with your doctor. This all takes time though and you must give yourself breaks or it just drags you down. The most important factor I have learned and work hard at is…boosting my immune system. I don't do crazy, wacky things but I do focus on the food I eat and use a few supplements. I have gone to a less meat diet but have not eliminated and still enjoy my wine and sunshine…..but limit their use!!
My heart aches for you as I remember being in your shoes…..the future seems so uncertain. I was diagnosed at stage IV and felt my life would be over soon. It is only fair that your physicians are truthful and tell you exactly what you are up against, afterall…they are physicians. However, it doesn't mean it will come true for you or that you cannot survive. As a suggestion, cling to the most positive information and invision that it will happen for you. Please do not waste a day, live to your best level of energy and remember that any down time that you give to melanoma, defeats your power to win this battle…..you are in the Olympic's now and every second counts…..go for the Gold, you can do it…..WIN!!
Sending you positive energy, prayers and hope (like the rest of us here)…..you will survive and go on to help others!
Blessings….
Swanee
-
- August 5, 2012 at 4:33 am
Welcome to this melanoma website……hopefully you find all the answers to your questions….but more importantly you find support and a place to go when you're feeling really distressed with your disease. Melanoma is so scarry and especially when you are first diagnosed. I don't know why, perhaps it's what we're tuned into but it seems like all the info you read is so negative and without hope! I thought I was only going to live for 6 months…….and here I am today, almost 3 years out and not a whole lot worse….although, I have had many surgeries and a couple treatments. I continue to learn new things about melanoma and reading this board helps me understand how all of us are coming from different diagnosis, treatments and stages but how we all can benefit from the posts we read on this board. You might benefit by reading old posts, there is so much information to be gained but it takes time and being familiar with terms….there's such a learning curve and the more you dive in and educate yourself the better you can understand the conversations with your doctor. This all takes time though and you must give yourself breaks or it just drags you down. The most important factor I have learned and work hard at is…boosting my immune system. I don't do crazy, wacky things but I do focus on the food I eat and use a few supplements. I have gone to a less meat diet but have not eliminated and still enjoy my wine and sunshine…..but limit their use!!
My heart aches for you as I remember being in your shoes…..the future seems so uncertain. I was diagnosed at stage IV and felt my life would be over soon. It is only fair that your physicians are truthful and tell you exactly what you are up against, afterall…they are physicians. However, it doesn't mean it will come true for you or that you cannot survive. As a suggestion, cling to the most positive information and invision that it will happen for you. Please do not waste a day, live to your best level of energy and remember that any down time that you give to melanoma, defeats your power to win this battle…..you are in the Olympic's now and every second counts…..go for the Gold, you can do it…..WIN!!
Sending you positive energy, prayers and hope (like the rest of us here)…..you will survive and go on to help others!
Blessings….
Swanee
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Tagged: cutaneous melanoma
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