› Forums › Cutaneous Melanoma Community › Newbie/ Stage 1b
- This topic has 7 replies, 5 voices, and was last updated 5 years, 9 months ago by
Gene_S.
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- July 26, 2018 at 11:59 pm
Hello everyone. Just looking for some thoughts on a couple of topics. First an outline. I am a 46 yr old female "poster child" for melanoma – strawberry blonde, blue eyed, fair complected, many freckles and moles, 27 yr competitive softball coach. My lesion stats – surfaced in an existing mole on my left calf, .44 mm, 0 mitotic rate, "focal" ulceration, no regression. Large excission in May with the dermatologist and first oncologist telling me no need for SLNB due to the "thin" nature of my lesion.
Like many newly diagnosed individuals, I hammered the internet for as much information as I can find. I found an education, along with a lot of anxiety. The anxiety led me to a second opinion with another oncologist who stated he would have performed a SLNB because of the ulceration regardless of the depth. If under his care, he would do ultra sounds of my lymph notes behind my knee and groin area every 3 months for 2 years. He did state, not all would take his approach and that my dermantologist (who he praised as a "good one") and first oncologist are not "wrong" in their opinion. Its an opinion and many are split at a 1b stage.
Anyone else a 1b and did you have a SLNB? If not, are you having follow up ultra sounds? I have been told by a rep at AIM that the second onc is going above and beyond normal treatment for a 1b. HOWEVER, their own website advises to perform a SLNB for lesions with ulceration at ANY depth. So a little confused. I in no way fear treatment above and beyond the norm. It makes me feel like I am doing something to check the inside. I have had 31 biopsies in 2 months. 5 excissions (2 dysplastic and 3 which could cause an issue down the road). So I am obviously going above and beyond on the skin cks.
Another question. The new oncologist mentioned Decision DX. I was already aware of it. Anyone participate in this test? Its for early stagers. It tests the make up of the tumor to see if you are at high risk or low risk for spreading elsewhere. I understand that there is only a 3-5% chance at 1b, but its still a chance. The only thing I can benefit from this test is a heightened awareness (if that is possible) and MAYBE insurance will cover a yearly PET scan to where they will not now. The one thing it could do, is send my anxiety to a new level.
And another…nodular melanoma scares me greatly. Melanoma that looks like one of my many freckles or age spots..scares me. How to catch a new spot amongst so many??? I feel like I would have to take 1000 pics to tract everything. Is that the tried and true method of tracking?? And do you have it done professionally or just on your cell/computer so you can blow up the image (mine gets blurry – I tried).
Unfortunately, I allowed this diagnosis to completely paralyze me in fear and depression for about 2 months. I had convinced myself I was going to be in that 3-5% or that a new primary will place me at a higher stage and that my daughter who has 50% of my genetics was doomed. Now that I am somewhat normal again, sometimes I feel guilty. Like I am not giving the beast its due respect and I am going to miss something even though I currently look like swiss cheese. I just got tired of crying. Reading the same stats over and over again. They really don't change when you read them EVERY DAY. I know how very blessed I am that I caught this at a 1B. I HOPE I can depend on myself to catch the next one – should that day come. I PRAY every day it doesn't. It feels like a very heavy burden at times but you have to have faith and love everyday you're given. You can't do that sitting in a dark corner. There are so many people on this forum who have battled this MUCH worse than me. I commend you on your strength. I think Janner kept me off the ledge more that once!! Hope she is still doing well. Prayers of strength and healing to you all.
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- July 27, 2018 at 2:04 am
You ask so many good questions in a frenetic way….reading your post is really a great trip down memory lane after being diagnosed 3b last year.
I don't have answers. But in hindsight I was often trapped by too much info and not enough context.
Consider the Decision Dx part of your question. Yes, it sorts out two very distinct lines…which are currently completely blended for staging purposes because it's all new. And given that melanoma strikes young, old, well and unwell, that is only one example of unaccounted for variables within the statistical info. This becomes much clearer when you are cast in a 50/50 5 year survival group. Statistics Shmatistics.
So just to throw it out there for debate. Cost/benefit analysis aside, many scans and labs, including Decision Dx tell you valuable but incomplete information. Wouldn't you eventually respond with more proactive strength if you were in the higher probability, and would it be relieving to know that you are really on the lowest end of probability given your other staging criteria?
Sounds like right now, you would not get those benefits. So you can skip the test because you are going to be on high alert anyway until some more time passes and you get used to having been diagnosed with a crappy disease. (which has that odd "no big impact unless massive impact" dimension) And I imagine its just as crappy at 1b for you as it is for 3b for me, but neither of us know what the 4's have faced. We read casual heroicism from them almost daily – where does that even come from?!
I would suggest that as you adjust over time, your coping mechanisms will catch up to the point where either Decision Dx result would be equally manageable. Understanding sometimes grows without reference to certainty.
Final comment. Your dermos are going to fine tooth comb you. You are 100x less likely to have a miss now. I just made that statistic up but try not to let that bother you. We can't all be Janner.
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- July 27, 2018 at 3:31 am
Frenetic? Very much. I do get wound up when discussing this very new, unwelcomed intruder. My apologies. I knew I had a problem when I went head to head with my oncologist discussing gene mutations and the presence of the P16 protein in benign lesions. Oops.
Thank you for your comments on the Decision DX. You make a very valid point. The "no big impact unless massive impact" dimension is on point.
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- July 27, 2018 at 1:13 pm
Hello greetings fom across the pond.
I am also a blonde, blue eyed, freckley, fair skinned person being a prime target for MM. Numerous sun burns as a child and sun bed visits in my early 20s led to my 1B dx in 2016 on my right knee. If you are diagnosed with a 1B MM or more in the UK you are automatically offered the SLNB which some people go ahead and have whereas others decide not to for their own reasons.
I went ahead with the SLNB as I am a rather anxious person normally so for some peace of mind it was the best decision for me and luckily no cancer cells were found in my lymph nodes and it alleviated some of the worry going forward.
I have had various biopsies since all ok but I know going forward there will prbably be more so being anxious is part of the course once diagnosed with MM. I now swim three times a week, go for long walks and listen to music which helps a lot for those over anxious moments.
As I also have thousands of freckles, moles and other blemishes being over 50 it is very difficult to keep a track of any changes as you said but taking photos where possible is what I do. I also use the ‘Skin Vision App’ which is also another back-up. You do have to pay a small fee to submit photos but it has been correct on a couple of my suspect moles. I also get three monthly checks with my consultant being a 1B so any worrying changes I can point out at these checks.
As time goes on you will learn that MM does not have to rule your life. I have learnt over these last two years that worrying about what might happen is wasted energy and deal with it once you know is much better.
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- July 27, 2018 at 3:10 pm
Thank you so much Rosa. You are right. My 22 year old daughter told me that same thing…you consume your life with worry and fear over something that has not happened. Amazing how kids end up teaching us lessons from time to time.
How deep was you lesion if you don't mine me asking? Mine was .44…thin enough for 1A but the ulceration bumped me up.
Thank you for the skin ck app suggestion. I will definitely ck in to that.
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- July 28, 2018 at 5:46 am
you would not qualify for slnb in australia, and we kind of dominate tbe melanoma scenehttps://www.racgp.org.au/afp/2012/july/melanoma-guide/
stop worrying, you are low risk , we all go thru this panic stage but you have no good reason to fear.
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- July 29, 2018 at 12:45 pm
Hello,
I just wanted to chime in that my husband started out as a Stage III. His lesion was 10.5 mm and when they did the WLE they did do the SLNB which came back negative. He later went on to Stage IV.
He was in a clinical trial and became NED in July 2012. Six years NED but if you would like to read more about his journey you can read on his profile.
Melanoma is tricky.
Judy loving wife of Gene (Stage IV and now NED since 2012 after Clinical Trial of IPI (Yervoy) and GMCSF)
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Tagged: cutaneous melanoma
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