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September 7, 2012 at 4:38 pm #20615
Greetings fellow ‘warriors’…ha, guess I’m looking for reassurrance which can’t really be given! 1 year ago diagnosed with SCALP lentigious MM; depth 2.38 and mitotic rate of 10 !!!! WLE/negative SLN…4 months later, local recurrence (1.38 and ‘various’ mitottic rates) on edge of 2 cm WLE; SNL again negative and this time, drainage was on the other side; another WLE…clean PET/MRI/CTs…6 weeks of radiation to that and surrounding scalp area (reports say radiation may be beneficial for local recurrence situations…);
get PETs/CT, whatever about every 3-4 months…my on-going fear is that a systemic recurrence is for me, due to the mitotic rate, a matter of WHEN, not IF…and for that I wish there was some reassurance…or a repsonse such as, you’re right, it’s WHEN, not IF…anyway, that’s my spiel and I’m sticking to it…thank you all!September 8, 2012 at 12:01 am #56411washoegalParticipant
Couple reassuring things I can tell you, one not so reassuring thing. I had a 3.7mm tumor with a mitotic rate of 7, 2 lymph nodes microscopically involved. Still here with no other problems 2.5 years later. I had no other treatment, other than lots and lots of scans.
Now the not so reassuring part, my original tumor was on my trunk (second worse spot). Yours as I am sure you are aware is the worst location.
What I am trying to say is there is plenty of reason to hope. And I recommend you live you life as if there is nothing wrong (except taking the usual precautions). Yes there are risks, but if you dwell on them you will only give yourself an ulcer or worse yet a heart attack. Find the best melanoma specialist you can, follow his/her advice, then move on. If it rears it’s ugly head again, then you can deal with it but don’t waste you life now on the what if.
Stage 3September 8, 2012 at 12:12 am #56412
Great advice, thank you Mary!September 8, 2012 at 3:22 pm #56413 Thank you so much Mary…pretty much what I’ve been doing (yeah, the scalp tho)…I AM living more fully than ever! and Catherine, thank you too for her endorsement!
I SO appreciate this site…September 8, 2012 at 3:45 pm #56414
I am always so pleased to see such great, thoughtful posts by participants. I couldn’t say it any better than Mary did. Keep in touch and let us know how you are doing.September 8, 2012 at 11:46 pm #56415AbbyParticipant Hello “lbeattie”. Wow, I so appreciated your post. Your feelings are so similar to how I’ve been feeling. I had a mitotic rate of 15 and just shy of a 4mm breslow, completely ulcerated. I still have that feeling of “when” is the systemic recurrence going to happen, as you said, due to the mitosis (& ulceration). I was diagnosed a year & 3 months ago.
Thanks for posting your thoughts. It helps when I see others feel the same. I feel I have no place, other than this site, to discuss such feelings. Somehow reading other’s thoughts help “normalize” my own fears.
AbbySeptember 9, 2012 at 4:00 pm #56416
Abby…you are so welcome…it IS comforting knowing others are experiencing similar feelings, thoughts, fears…and ‘know’ what it’s ‘like’…ya know, to wake up every BEAUTIFUL morning and…wonder
I failed to include I am 59…just FYI for everyone who reads these posts
Thank you…I have you ALL in my thoughts
Sally (aka lbeattie)September 10, 2012 at 2:06 pm #56417goldengirl2011Participant
With melanoma you just never know what will happen.
My aunt was diagnosed with stage 4 in 1995. It was first diagnosed on her scalp. She was given 6 months to live. She had multiple surgeries on her scalp, stomach area etc. and did interferon. She lived 15 more years, and passed at the young age of 86. She never gave up hope, and she really LIVED those 15 years – traveling & spending lots of time with family & friends.
So, the moral of the story is – each of us is an individual. There is no date stamp on our butts that say when we’ll expire. So just live…and love!
Good luck to you, and keep us posted!
CathySeptember 10, 2012 at 2:43 pm #56418
Another thank you Cathy…I really, really appreciate the anecdotes, of course being well aware that my story is my story etc. etc…her/his story is his/her story!
I’m on my way to see my rad oncologist to look at a red, somewhat tender spot located at the intersection of my two skin grafts (hair piece will have to come off…)…doesn’t ‘look’ like my recurrence, rather appears more inflammatory (late skin reaction to radiation she pondered?)…I’ve heard areas that ‘appeared’ cyst-like can also be m…
Thanks again so very much…
Sally BSeptember 10, 2012 at 4:10 pm #56419
Sally that doesn’t sound like a recurrence at all an highly unlikely. There’s lots of healing to do and they did a lot of cutting. Hope all goes well with the check up thoughSeptember 10, 2012 at 6:10 pm #56420 That’s encouraging…my 6 weeks of radiation ended first week of April tho…! first skin graft a year ago 9/21 followed by the 2nd in Feb. 0f 2012…but I’m feeling too like it’s not a recurrence… it does looks a little rough…but yes, you’re right, it’s pretty unlikley; that’s what my derm said too
THNKYOU!!! so so much
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