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August 21, 2012 at 3:48 am #20566
Hi – I’m back again with a bunch more stitches and more questions than I know what to do with. The good news is that everything removed since my last melanoma in February have been atypical moles — non-cancerous. As I wrote in my last post, I have had three melanoma to date: the first was discovered in November 2010, the second in February 2011, and the third in February 2012. All were less than .5 cm, non-ulcerated, and removed with clear margins. No additional therapies (chemo) was called for but, because of their frequency, I go in once a month to my doc, once every three months to a melanoma specialist at Cancer Care Alliance, and once every six months to a specialist at the University of Washington who has special equipment to photograph anything of concern The photos blow up the subject matter to make any mole look frightening, but the pictures allow my doctors to more easily track any changes that occur. Last February, I had four moles photographed. In the last couple of months, I had three of those biopsied. Two (on my back) came back as “abnormal “or atypical moles, with one being moderately atypical and the other being moderately to severely atypical. Both were excised. After the last one was removed, I noticed a tiny patch of dry skin (the size of my pinky nail) on top of my left forearm. The doctor checked it against my grid photography from two years ago, said it wasn’t on the photos, and did a punch biopsy, which came back today as moderatly atypical. We’ll be removing that one in September. At this point, I’m wondering if I have any “normal” moles on my body. My doc says that she wouldn’t even remove these on most folks because there’s no proof that they will definitely become melanoma. In my case and with my history, however, she says they need to come out. At this point, I’ve become extremely nervous about my ability to catch everything before it becomes melanoma. Is there any type of machine that can scan the skin and catch abnormal cell activity? I’m trying to stay on top of this but am becoming more and more afraid of missing something. I feel like I’m finding new things every time I turn around, with each atypical mole requiring an average 20 stitches. I am so grateful these weren’t melanoma but, again, am concerned about the future. Any advice you can give would help me a great deal. Emotions are running high… 😮August 21, 2012 at 9:16 am #56079 “with each atypical mole requiring an average 20 stitches” Are these mildly atypical moles that are each requiring 20 stitches upon removal? Is this the initial excision or a re-excision after pathology comes back as atypical? I’ve had lots of mildly atypical after my melanoma but they don’t even bother to go back and re-excise even if it extends to margins, because they don’t seem too concerned about mildly atypical at all.August 21, 2012 at 1:52 pm #56080 The first step as a punch biopsy in each case. The last two came back with one being “moderately atypical” while the other was “moderately to severely atypical.” The stitches are for the excision of the surrounding area (3 mm and 5 mm margins, respectively, I believe). I’m not sure what it all means other than they believe they need to get them out once diagnosed as moderate or worse, simply because of my history with melanoma. Again, my doc has been clear that there is no proof that says these would have turned into melanoma. It’s just not worth the risk. Have you had any that show up as anything beyond mildly atypical?August 21, 2012 at 1:57 pm #56081 No, other than the initial melanoma – the other biopsies have all been nothing or mildly atypical that they don’t even re-excise even if margins are involvedAugust 21, 2012 at 2:11 pm #56082Catherine PooleKeymaster I think there is a tendency among some doctors to remove things that don’t need to be taken off. It has always worried me, but some patients insist on it. A judicious doctor can tell by looking at a suspicious mole whether it is just atypical or actually leaning into melanoma. The cost of too much removing and pathology can be huge to the individual and the health system. It sounds too me like these folks are going overboard with the biopsies and excisions.August 21, 2012 at 2:26 pm #56083 Hmmm… I appreciate your perspective very much. What is your understanding of moderately to severely atypical moles as they relate to melanoma? Based on my history (three identified in a two year period), I think we’re all a little antsy. I am having a difficult time figuring out how I’m going to survive this without some type of technology (a scan of some sort perhaps?) identify what, and what does not, need to be worried about. Do you know of any such thing? Also, if you were me, would you suggest having a Pet Scan annually? I have not had to have any lymph node work as my first melanoma (on my rear end) was .23 cm, the second (on my shoulder) was in situ, and the third and most recent (on my back) was .5 cm. Again, this site is amazing. As are you. Thanks, LAugust 21, 2012 at 2:28 pm #56084 Do you mean mm or cm?August 21, 2012 at 2:32 pm #56085 I thought it was centimeters. If I understand correctly, 1.0 cm and above are typically indications that chemo may be called for. Anything that isn’t ulcerated and is below .75 is a pretty good bet for a clean excision. Thos of mine that weren’t in situ were .23 and .50. Does that sound right?August 21, 2012 at 2:33 pm #56086 I think that is mm, not cmAugust 21, 2012 at 7:15 pm #56087Catherine PooleKeymaster I can see why you are frightened and the docs are probably overly cautious as well. Has the photography helped at all to track changes? All of your others were caught very early, in Dr. Mihm’s presentation, I believe he said it takes over a year for an insitu to grow. But I guess I would rely more heavily on the photography than anything else to determine a change.August 28, 2012 at 8:39 pm #56088AngelaMParticipant Lisa, reading your story is like writing my own. I’ve also had 3 melanomas. Oct 2009 in-situ on my chest, Jan 2011 0.24mm on my back and Oct 2011 0.45mm on my back. My treatment/ management sounds identical to yours. I also have photography on a regular basis and anything that looks dysplastic is removed and biopsied. My dermatologist also says she wouldn’t normally remove these moles on other patients, but with me she takes no chances. Basically, if you are still presenting with atypical moles then your skin is ‘active’ so to speak. She actually found a new mole on me last week that came back dysplastic. My doctors say that having a mildly or moderately dysplastic mole or two doesn’t send alarm bells ringing. However, having severely dysplastic moles does. It means that you are more likely to get a melanoma. But not all severely dysplastic moles become melanoma. In my case, for example, all 3 melanomas did not arise in pre- existing moles. All arose in normal skin and they looked like new moles, so they were melanomas to begin with.August 30, 2012 at 12:30 am #56089 Hi Angela! Our situations do sound very similar, indeed. I am away on vacation for a couple of days, but will write back in more detail when I’m back at my computer as opposed to trying to write on my iPhone! Looking forward to communicating soon… LisaSeptember 1, 2012 at 2:00 pm #56090 Hi, Angela. I just returned from a few days away and am sorry it has taken so long to get back to you. First, I’m sorry for what you’ve gone through and continue to go through, although I’m glad the last mole was dyspastic and nothing worse. I continue to try to wrap my head around the whole melanoma thing. My last one back in February produced a lot of anxiety, and the regular occurance/discovery of dysplastic moles that have followed have also caused some difficult moments. I am trying to stay in the present and be grateful that my doctors have caught so many things so early although my mind still wanders from time to time, wondering what we may have missed. It’s frustrating. I’m going in on the 10th to have a moderately dysplastic mole removed from my arm. This was one I found on my own — it was nothing but a little dot with a dry patch of skin around it (an area the size of a pencil eraser). When I mentioned it to my doc, she looked at the grid photos from two years ago and decided it was new. At any rate, it comes out on September 10th, at which point I’ll have another full body exam as well. May I ask how old you are and if you’ve spent a lot of time in the sun? Where do you live? It sounds like you’re getting good care, which is great. How are you doing with the stress this has created in your life? I hope things are going well, you’re enjoying your summer, and I look forward to hearing from you soon — Lisa.September 13, 2012 at 8:53 pm #56091AngelaMParticipant Hi Lisa.
Apologies for taking so long to reply to you!
To answer your questions… I am 31 years old, I live in South Africa and I spent way too much time under the African sun as a child! No one in my family has ever had skin cancer of any kind either. I am the first.
I’m under the care of an excellent dermatologist here (rumor has it she is the best in the country). We have a number of very good doctors here, and we are also fortunate in that we have some very good pathologists. My dermatologist is seldom ever wrong. I feel very comfortable under her care because it takes her only a few minutes to spot anything abnormal anywhere on my body. She then gives me her prediction for what it is and she’s always right. If I leave her rooms and she’s told me there’s nothing of concern anywhere on my body then I rest easy until my next appointment approaches. A lot of South Africans living abroad come back to see her for their check ups even, particularly those in the UK.
How old are you and do you have children? My doctors think that my last 2 melanomas were pregnancy related.
And about the anxiety, I can identify with you. I actually come down with flu after every biopsy while I wait for the results. It really takes it’s toll on my body! Luckily my dermatologist uses a pathologist that will call her within 24 hours with the results if she marks it urgent. She knows to mark all of mine urgent because waiting 5 days kills me! The stress is difficult for me to cope with because my son is only 2 and I’m petrified that I die and can’t be there for him.September 17, 2012 at 2:24 pm #56092
Hi, Angela– How are you? I hope all is well. To answer your questions, I’m 55 and have never had children. No one in my family has been known to have had melanoma. I’m also fortunate to have great medical care here in Seattle, Washington and am actually being seen by three doctors (my regular skin cancer dermatologist, every month; a melanoma specialist at Seattle Cancer Care Alliance once every three months; and a doctor at the University of Washington who specializes in skin photography, every six months. The thing that’s driving me crazy is that every time I go in to get stitches removed from one thing, it seems we catch another that warrants testing. I just had a moderately dyspastic spot removed from my wrist and did a biopsy on a spot on my thight. Luckily, for the first time in a long time, it came back normal. Hooray! It is clear that I am making these abnormal moles which, as you said, may or may not ever become melanoma. As one who has had three, however, you know what a worry it can be. I’m fairly calm about everything but have finally decided it’s worth seeking out some counseling as that’s what I’d teel my friends to do. This type of stress cannot have a zero effect on one’s spirit, mind, and body so… I figure I’d better do what I can to counteract that. I also went to see a naturoapath last week to see if there are supplements or things she might recommend to help boost some type of something within my body to do a better job of fighting these things off. Who knows. I figure I won’t take any one plan to the bank, but it can’t hurt to keep an open mind to everything. How have your spirits been doing lately? By the way, I’ve always wanted to go to South Africa – I hear it’s lovely. Have you lived there your entire life? Well, Angela – take care and keep me posted on how you’re doing. In the meantime, I will be on this side of the world, wishing you well. Lisa
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