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Prognosis Calculator, Now Even More Terrified

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Prognosis Calculator, Now Even More Terrified

Posted By
Butterfly74
5/2/2020 8:22pm
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Replies: 13

Hi, I am recently diagnosed with Stage One melanoma on my upper back.

Depth of. 7mm and told I am 1a. I have posted before about my strong anxiety and had some lovely replies.

My doctor said the statistics are about 97% over five years of surviving this and others have replied to say similar. I was trying to hold on to that hope to help me try and get through this as I am really struggling. I wish I hadn't but I entered my pathology details in a melanoma prognosis calculator and it says I only have a 90% chance of survival over ten years. This may still seem good statistics but
this info has has totally terrified me, I don't want to take anything away from the warriors on here who are struggling with worse odds, but I feel like I won't survive this. How accurate are these calculators? One calculator also said I had about a 7% chance of a positive node during a SNB but my doctor only did the WLE as said I didn't need it. I'm scared I'm really at Stage 3, this has taken over my life and I'm not functioning very well with normal life.

How do people cope with this always over our heads. I feel like I'm waiting for the next shoe to drop.
Sorry for the long post, if anyone can help me please.

Hello Butterfly74.

I too am stage 1a and like you I googled everything when I was first DX’d in hope to find the answer and reassurance. My best advice is too stay off google it really enchances your anxiety. I can say with time you slowly learn to love again. It still is raw and some days are better than others.i can honestly say when was discharged from my skin nurse I have hardly given MM a thought. Be vigilant keep up with your appts because that relay does help Kong you are being looked after. I am hereto chat anytime x

MLD

Apologies but my keyboard is playing up and it’s converted a few words.... oops!!

MLD

Hi MLD
Thank you for replying, yes would love to be able to keep in contact with you as feel alone and nice to talk with others who understand. It's all very overwhelming, my doctor doesn't seem very concerned, I'm not sure why and was happy to see me every six months but I have asked for every three months as that is what I read is normal. I'm also going to see a dermatologist regularly as well. Is there anything else I should be doing, like chest X-ray and scans regularly? You seem to be coping really well, I hope with time it gets easier for me.
Thanks.

It is it is very overwhelming, I was on anxiety medication as I could not cope at first. My dermatologist was not concerned of my dx either, I am based in the UK so care differs here. My follow up here was for one year only every 3 months and then if no further issues discharged from NHS care, which I am now. I asked about scans and xrays but it’s not is not part of the care that is offered for Stage 1 here. I did have a blood test for vitamin D, which was low and am now on supplements for the rest of my life. Last year was a really hard year and I never thought it would get easier, but it does slowly. I will be seeing a private dermatologist every 6 months and I think that helps with feeling a little more confident. Please reach out anytime to me, happy to PM my email address to communicate if that is easier x

MLD

Thanks MLD, email would be great as there were a couple of others I wanted to stay in contact with but they aren't posting. I'm in NZ and don't feel they as proactive with me compared to most on this site from US. The people here seem to have melanoma specialists, oncologists etc, I asked my doctor about a oncologist but she said I don't need one. It all makes me so anxious, I'm trying to find a good dermatologist at the moment. I am too on anxiety and anti depressants which I was already on prior to diagnosis. Another restless sleep last night, my life has changed for ever and I struggled to cope with it all.

Hello there, you won’t need an oncologist. Find a good dermatologist one you can trust and work with. I too at the beginning was looking for specialists and I visited so many private dermatologist last year, As I felt I needed to get control back and understand my pathology (which I still don’t really understand). I just sent a message to you on here, but I don’t really know where it goes. My email address is mandydudfield@gmail.com, drop me an email anytime.

Mandy x

MLD

Thanks Mandy. I have found a dermatologist today who has alot of experience with melanoma and I have made an appointment with him for next week. I feel a bit better knowing I have someone I can go to for followups now although haven't met him yet so will see how it goes. It's just that waiting to see if it is going to spread that is going to be so difficult, the fear hanging over me.
Thanks for your email address, I will contact you on there to stay in touch.
Victoria x

Hello there, you won’t need an oncologist. Find a good dermatologist one you can trust and work with. I too at the beginning was looking for specialists and I visited so many private dermatologist last year, As I felt I needed to get control back and understand my pathology (which I still don’t really understand). I just sent a message to you on here, but I don’t really know where it goes. My email address is mandydudfield@gmail.com, drop me an email anytime.

Mandy x

MLD

hi, I am also newly diagnosed in feb, I am stage 1a ( level 2) melanoma of 0.3mm
I spoke to the melanoma clinic who assured me its 98% chance it never comes back or spreads and a 1/20 to get another melanoma within 5 yrs. I have since had another 2 removed but luckily fine and another today waiting on path reports, paranoid about every little spot and blemish and anxiety is through the roof, especially as i already have a rare disorder.

Hi Fairystar, thank you for your reply. It's so overwhelming isn't it? I already suffer from anxiety so this has really been difficult. I wish I had found it earlier, are those statistics based on your depth of .3mm as mine is thicker at .7mm so think I am more at risk. I will see the dermatologist next week so will talk thru it more with him. I wake up and fall asleep thinking about it and the fear is quite consuming.

Hi Fairystar, thank you for your reply. It's so overwhelming isn't it? I already suffer from anxiety so this has really been difficult. I wish I had found it earlier, are those statistics based on your depth of .3mm as mine is thicker at .7mm so think I am more at risk. I will see the dermatologist next week so will talk thru it more with him. I wake up and fall asleep thinking about it and the fear is quite consuming.