Anyone in a similar position who can give me some advice?

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12/16/2013 8:51pm
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Replies: 7

I am 28 years old and about 6 months ago, I was diagnosed with Melanoma. I had had a large mole on my back which I found to be ugly and about a year ago, I went to the skin cancer clinic to have it checked out. The dr said it was fine. Nothing to worry about. But, she said, I could have it removed if I wanted to for cosmetic reasons. I made an appointment to do so but ended up cancelling and then I got busy, as one does, and just never went back. It was always nagging at the back of my mind, but I told myself I had had it checked and it was fine. Then I got my yearly checkup notice in the mail, a year later, and went back. This time, I was told to have the mole removed immediately and was told that it was a melanoma. 

 

It was 1.4mm thick, Breslow level 4, no ulceration and on the middle of my back. I have seen2 dermatologists and a plastic surgeon in the last few weeks. One told me he estimated it to be Stage 1, my plastic surgeon said it was Stage 2 so I'm not sure what stage I am exactly. I have had the melanoma removed and last week I had a wide skin excision and sentinel nodes removed from under both arms. I have not yet gotten the results back, but the drs said the nodes looked healthy when they took them out. I have also had a PET scan which came back clear. 

 

I am new to the whole melanoma thing and honestly I am probably still in shock. My question is, is there anyone else out there in a similar situation or who was in a similar situation before? I have asked the drs what are my chances of being completely cured or of it coming back and they are hesitant to give me clear answers. I know cancer is a tricky disease with no definitive answers but I really need some peace of mind. If anyone could share their story with me, I would really appreciate it. 

 

Other than staying out of the sun, which I do and have done for years, is there anything else I can do to prevent reoccurence? 

 

 

Janine, I'm sorry to hear about your diagnosis.  It reminds me of my circumstances 10 years ago when a primary care physician told me that a mole looked fine.  It sounds like you're doing all of the right things now and the statistics are in your favor assuming Stage I or II.  My two cents would be to get with the top melanoma specialist in your area and ask to be followed.  Stay with the follow ups for the rest of your life and request as much ongoing testing as your insurance will cover.

You didn't give us enough information to determine if you are stage I or stage II at this point.  But truthfully, there is little we can advise you on at this moment until you get the results of the sentinel node biopsy.  THAT determines staging, and once you are staged - THEN you can look at prognosis.  There are plenty of people here who are stage I, II and stage III but since we don't know your final staging, our advice can only be general.  Treatments and stories differ with the stages.  Do you have a copy of your pathology report? If not, get it.  And post that or your SNB results here.  I was 29 when diagnosed at stage I and am still here 21 years later.  Wait for the SNB results and then we can be much more helpful.  Until then - hang in there. 

Best wishes,

Janner

Thanks for the replies. It really does help just to know there are others out there in the same boat. I should be getting my results in the next few weeks, so I will post them as soon as I do. But I am hopeful they will be negative! 

As for the checkups, I am scheduled for checkups with a specialist dermatoligist, skin cancer clinic and hospital. They have said I should try to have check ups every 6 weeks for the next few years and do self checks on a weekly basis. So I will definitely be doing that! 

 

Thanks again for your replies. :)

My husband had a mole on his shin checked out while he was a medical student by a dermatologist who said the mole looked fine in 2007.  In February 2008, the mole started to turn dark and raised with irregular borders.  By this time he was in residency, he put it off until it started to become raised.  He then had a surgeon look out it while he was working.  The surgeon said lets get it cut off just to be on the safe side.  It turned out to be melanoma.  Various pathology reports (it was sent out for a second opinion) stated that it ranged from 1.0 to 1.03 mm; mitosis of 1, not ulcerated, Breslow IV--some stated that it was superficial spreading and another pathology report stated nodular melanoma.  He went in for a WLE for clear margines and a sentinal lymphode biopsy.  At the time he was diagnosed as Stage 1A.  However, by 2009 standards it would have been Stage 1B.  He was told that he had less than a 5 percent chance of recurrence and to get yearly follow ups with his dermatolgist.  It recurred 3 years later in 2011.  He had an enlarged lymphode (3 cm), 2 lymphnodes total were diseased.  He was staged as either 3B or 3C depending on the instutition. We had a superficial node disection (13 nodes of the left groin removed in total) and underwent adjuvant treatment.  We opted out of Mage Vacinne, Interferon vs. Ipi, and went for chemotherapy (Abraxane, carboplatin, and tomoxifen).  We are almost to 3 years no evidence of disease. He does a quick self exam daily and has a ritual of putting on sunblock, taking his vitamins (Vitamin D, curcumin, and daily vitamin).  We also say a few prayers. My advice to you is to always be vigilant and learn everything you can about melanoma regarding what to look for--as you are your best advocate.  Melanoma is so unpredictable and you always want to catch it early.  --SF

I hate to hear you are going through that.  I had a similar experience.  My mole was on the back of my right leg...my SNB came back positive (maybe)  They doctors said they weren't so sure it was positive byt the did the disection just to be safe.  I would only do a month on interferon.  13 years until anything came back.  It was caught so early, so I am very hopeful.  I did accidentally get terrible burned at the beach about 4 years ago.  We were sitting out on a cool spring day.  By the night, I had blisters.  I still like being out at the pool and the beach.  I just put some sunscreen on and keep on living.  Good luck to you!  Let us know how you are doing.

Delora

Hi again,

Thank you so much to everyone for sharing your stories with me. It just helps to know I am not alone. I am still waiting on my biopsy results I will hopefully get them next week. I have an appointment on 24th December so all I ask for for Christmas this year is good news and clear biopsies. I will let you know when I get them 

 Thanks again for taking the time to reply to me.

Best wishes,

Janine 

Hi again,

Thank you so much to everyone for sharing your stories with me. It just helps to know I am not alone. I am still waiting on my biopsy results I will hopefully get them next week. I have an appointment on 24th December so all I ask for for Christmas this year is good news and clear biopsies. I will let you know when I get them 

 Thanks again for taking the time to reply to me.

Best wishes,

Janine