Newly diagnosed with melanoma & scared

FormerMember
FormerMember
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Hi everyone. 

I've been reading many posts here this week before actually setting up my account here. I've been diagnosed with melanoma this week and it has come as a massive shock. I am 40 years old & had a new mole on my toe for around 2 years. Last year I've noticed it started to grow, so I saw my GP who said it was nothing to worry about and asked me to come back if the mole doubled in size in a month. It didn't, but it doubled in size in 6 months, in the first lockdown. I took pictures, emailed them to my GP and got referred under 2ww to see a Dermatology Consultant. The Consultant had a look at my mole and all other moles, and confirmed it wasn't cancer. We still agreed to have it removed as I was concerned about it, but as it was confirmed as non cancer, I was told the removal would be in 5 months time. I was relieved, it was nothing to worry about, but I did see the mole grow all this time whilst waiting for the removal. Finally, October came, I had the mole removed and sent for a biopsy (routine procedure) but again been told it will all be fine. Only that it was not. Last Friday, 4 weeks after the biopsy, after chasing up my results, I had a phone call and been asked to attend an appointment the following Monday. Whilst I thought, well it's been confirmed many times as non cancer, I had a very bad feeling as not many people are called back in during 2nd lockdown. At the appointment it was confirmed, I have melanoma. Stage 1B, 0.95mm. Need a wider local excision, skin graft and possibly a sentinel node biopsy, but all this will be discussed with another hospital. I've been a mess this week. I have a little boy and a loving husband and, as you do, I never thought this could happen to me, especially that I've been so careful and seen professionals as soon as I've spotted something not quite right. I am due to have a consultation about what's next and the op next Tuesday and am feeling sick just thinking about it. As strange as it sounds, I would be over the moon to be 1B. What petrifies me is that one can go from 1B straight to stage 3 depending on the sentinel node. My biopsy took 4 weeks as it had to be sent for another opinion externally as it was not clear cut and it was being debated whether it was cancer or not. Looking for some support, positive stories, and advice: would you have the sentinel node or not. Part of me feel very strongly that I need to know what stage I am for sure, part of me is too scared to ask and would rather assume 1B, though I know this is not very wise!!! My lymph nodes were checked during my appointment this week and all seemed fine. Still, very very scared, as this mole was so many times before classed as non cancer yet kept growing all this time. Thanks xx

  • Hi and a very warm welcome to the online community

    Almost 4 years ago I was diagnosed with melanoma, stage 2a, and understand why you'd be feeling scared and worried about what the future might hold. 

    You can read my story with melanoma if you click on my photo but briefly I went to my GP with a pink bump on my arm which had just appeared. Having been referred to a dermatologist and being told that it was nothing to worry about, like you, I was shocked to discover that the biopsy revealed a rare amelanotic melanoma 1.45mm in depth and ulcerated.

    Unfortunately it can be very difficult to diagnose melanoma visually. Just by chance my consultant was one of the top dermatologists in the country and even he didn't think it was cancerous. 

    I was given the same option as you to have a sentinel lymph node biopsy (SLNB). I decided to have it done and I'm happy to answer any questions you might have about it. You might like to have a look at this decision aid from NICE which you can use to decide whether to have a SLNB or not.

    It is true that you could go from being stage 1 to stage 3 if cancer cells are found in the SLNB but this can happen at any time and not just if you have a SLNB. The SLNB tells you if the cancer has spread now but, without wanting to scare you, it could still spread in the future even if you have a SLNB. This is because the SLNB is not a treatment but a diagnostic tool. However, on the positive side lots of people who have a SLNB that comes back negative don't have any future recurrence and I'm one of them, touchwood.

    How soon do you have to decide on whether to have a SLNB or not?

    x

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  • Hi, I was in a similar position to you I had a mole on my groin that I asked the Gp to look at last year when I went for something else, she measured it and said it looked fine but keep an eye on it, that was last August. I thought it looked bigger in March and rang the dr’s for the original measurements and it had doubled in size. I then was asked to send pictures in and it was removed in June this year. On holiday in Greece in July ( I was one of the lucky ones that got a holiday this year) I was by the pool when I got a phone call from the hospital to say it was malignant and would need more removing and they would check the node at the same time if I wanted. Long story I know but had the op on 20/8 and since then found to be stage 3 as there was a deposit in the lymph nodes. I started Tafinlar and Mekinist last Wednesday and so far no side effects. So I’m really hopeful this will sort it out. I know it’s really scary but there’s loads of information on sites like this. Hope it helps to know that you are not on your own.

  • Hi and a very warm welcome to the online community

    I'm sorry to hear that you were diagnosed with melanoma which has spread to your lymph nodes but pleased to read that you've now started your treatment.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"