Just diagnosed

Posted By
9/10/2010 7:42pm
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Replies: 7

Hello all! I've been lurking for the past few days and have been amazed at the strength I have gained from simply reading your stoires, posts, and responses.

I am a 28 y/o M from Long Island, NY that  was just diagnosed this week with ulcerated malignant melanoma originating from a mole on my inner calf.  It got cut off in the ocean about 5 months back and grew back a little strange.  I didn't have it removed until a week and a half ago.  Unfortunately for me the thing was 9 mm...Knowing that the scale stops at 4 I am obviously expecting the worst.  I have a PET scan next week and am definitley feeling that "scanxiety" that others have spoke about.   Just thought I would say hello and see if maybe I could get some insight on what to expect. Am I definitley looking at stage IV or is there any hope of stage III?  Fear and anxiety have been the primary emotions, but some inner strength and willingness to fight has been brought out from some of the stories on this board. 

 

-pat

dian in spokane - (9/10/2010 - 8:13pm)

No, you are not definately looking at stage IV. There are a number of members here on the board who have had deep primaries with no further involvement.

Did you have a wide excision and a sentinal node biopsy? If not, then that's probably ahead of you. The wide excision will leave you will a very large scar, and with such a deep primary, perhaps require a skin graft. The SNB is generally done the same day, with the dye injected just before surgery, near the site of your primary, and followed to the nearest lymph node basin, then the 'sentinal node" will be removed, anywhere from 1 to 4 nodes actually.  

The PET scan itself is not that tough, you'll have a day of prep before, where you have to do a no carb, no sugar diet..then the day of you'll have to be there a couple of hours. You'll have to lie completely still, but other than that there's no stress involved in it.

If your SNB shows lymph node involvement, they'll likely want to do a full lymph node dissection, so you might want to read up a little on that...and the potential for lymphadema, and treatment. Or you can wait till they recommend it and ask the doctor to explain all the consequences.

And of course if your PET Scan shows organ involvement or distant metastes, then you'll be looking at more serious treatment.

I know that it's a shock to get such a diagnosis, but try to keep a cool head and not anticipate the worst. Waiting for results is nervewracking, and particularly at your point in the process.

Welcome to the board, and good luck. Please let us know how things are going.

dian in spokane

Anonymous - (9/10/2010 - 8:23pm)

An example of someone who was diagnosed with a very deep melanoma and who is still doing fine after 5 years: https://www.melanoma.org/community/profiles/carver

Carver - (9/10/2010 - 9:03pm)

Hi Pat,

I'm sorry you are having to deal with a melanoma diagnosis but there is plenty of room for hope. I was diagnosed in February of 2005 from a shave biopsy which meant the full depth isn't known but it was at least 6.9 mm breslow (nodular) and then with the wide excision another 2.8 mm of residual dermal melanoma was removed. My sentinel node (left groin) was positive for melanoma but none of the additional nodes removed during the lymph node dissection had melanoma. I have had a lot of scares but no recurrences. I have even had PET scans that said worrisome for melanoma but my doctor didn't think so (he thought it related to the surgery) and I had the option of rescanning or more surgery. I chose rescanning and that was smaller and went away. I mention this because I've had so many little things on PET that they don't think are related to melanoma but with none of them have they gotten bigger or ended up being melanoma and the one time it was worrisome (pretty large mass) it went away. I think with deep primaries in particular it's especially hard not to let every scan be very scary but we all have things that aren't cancer related (or most people do).

One other point, the scale doesn't stop at 4 mm. That's just where some staging charts stop. There are studies that deal with deeper primaries. I've found them but frankly we all know the risk is going to be higher with a deep primary (by higher I mean higher than with a thin one) so I don't think that type of reading helped me that much. What did help me is there were other people on this board with very deep nodular melanoma who were still doing fine after many years, some over 10 mm.  April 1010 was my 5 year full body PET/CT and I had no eveidence of metastatic or recurrent disease.

Wishing you all the best of luck and let me know if you have any question.

Regards, Carver

 

"A closed mind is a wonderful thing to lose"

King - (9/10/2010 - 9:30pm)

Pat,

 

I'm glad that you found this board.  As others have stated, you might not be a Stage IV.  Once the scans and pathology results are available, you'll know the answer to that.  I just want to add that even if you are a Stage IV...there is hope.  Stage IV is not an automatic death sentence.  I was diagnosed at Stage III with an unknown primary in 2004.  I advanced to Stage IV in 2005 when the melanoma spread to my liver.  Here it is 2010 and I currently have no evidence of the disease.  It's not all quite that simple but take one step/day at a time.  There is always hope and more treatment choices now than in the past.

 

Keep posting..we're here for you.

 

Stay Strong
King

Stage IV 7/05 Liver mets

makedoandmend - (9/11/2010 - 1:00pm)

Thanks so much for the information and inspiration.  My expectations are extremely low due to the thickness and ulceration but its good to know I have some options if I'm at stage IV.  I am excited to see all of the compassion and strength found on this message board.  Before reading I hadn't felt anything but fear..Its also nice to know there is a place to bounce ideas off of before making some of the tough decisions that I know are looming ahead.

caper01 - (9/14/2010 - 3:37pm)

My melanoma started on the calf also.  The mole was removed in 1998.  You can expect to have regular checkups after surgery.  I hadn't noticed anything else until some 8 years later when I had a lymph node swell in my upper leg.  Good luck on the surgery and I hope that will be all you will ever need! 

DonW - (9/14/2010 - 10:21pm)

Pat -- Hope things are going well for you and that your scan is negative.  A woman who posts on this forum  and lives on Long Island would like to contact you. She is an old timer who can give you some insight. Her name is Carole and she would like you to email her at frosty3043@aol.com She is having problems with her password and can't log in here for some reason, so I am relaying the message. Good luck and keep us posted on your situation.