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Melanoma nightmare

Alittlebitlost
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This is my first post here although I have replied to a couple of folk last week who were worried about how to interact with a close relative who has cancer.    It was good to be able to help.

So my story began last year when I noticed a ‘spot’ on my thigh, it looked like a typical spot, I gave it a bit of a squeeze as you do, it bled a little but I expected it to go away.  After a few weeks it didn’t so I thought a doctors trip was in order.  It took the usual weeks to get an appointment and when I saw him he wasn’t at all concerned about the spot which by now was just a small flesh coloured nodule.    Obviously this was great news to me, I was completely happy with his diagnosis.  He referred me to the dermatologist on a non urgent basis (as it wasn’t suspect)  who I saw about 5 weeks later.  Unfortunately she didn’t think it was harmless at all and referred me to the hospital on an urgent basis, the lesion was subsequently removed and confirmed as a stage 1B nodular melanoma, 2mm breslow with mitotic rate of 1.   Obviously we were completely knocked for six by this news.  

I was referred for a wide local excision and sentinel mode biopsy which I had a few weeks ago.  Last week we had the news the one node had tested positive.  (Two modes were very close so both were taken).  So that means I’m now stage 3.   Which is a bit **** really!  The cells found were a very small amount which I guess is better than finding loads but it all amounts to the same thing.

Right now I’m in a daze.  I’m not scared (but know I should be) but am angry my GP failed to recognise the melanoma or at least put me on a two week urgent referral, I almost didn’t go to the dermatologist as my thing was ‘nothing to worry about’.

Inevitably I’m now spinning the delay in diagnosis around in my head and and can’t help feeling if removed earlier I woundnt be in this mess right now.

Im now sitting here with a big leaky seroma at the biopsy site which is depressing,  it drained when I was out on Friday and what a mess.   Just feels so dehumanising.

My WLE scar is huge but very neat, it’s healing well but my legs very tight and doesn’t want to bend as easily.  It will be a talking point one day (hopefully)

I now have to have a full body and brain scan and I’m waiting for that appointment and thankfully have already been told I can have adjuvant therapy,  I don’t know what form this will take or what it entails until I see the consultant oncolgist.  Just hope it’s really bloody effective!

I feel like I’ve gone over a waterfall and am falling into the mist far below, having started in the safety of the shallows the current picked up very rapidly and just got faster, this whole thing only began just before Christmas.

I have two daughters who don’t know about this, I was hoping to avoid worrying them for no reason. First of all if the nodule turned out harmless, then  If the SNB had come back clear then I would be feeling like it was a great decision not having told them but now I don’t know what to do.  Wait for the big scan? Wait for the treatment to end but that could be a long time and there could be side effects.  I’m assuming there will be and it wont be fun.  In fact very few people know and actually I like it this way, I didn’t want to become a condition instead of me as I’ve seen happen in the past.

So a bit of a brain dump, not sure what I wanted to say here but it helps to get it out.  I’m very open to advice from others in similar situations.

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    Hi Alittlebitlost,

    I'm a Stage 3 melanoma patient and have been for almost 10 years so don't panic that it's the end of the world right now. I haven't had any adjuvant treatment so you also have that bonus on your side.

    I know you must be feeling like you are wading through mud at the moment but believe me, once you have had chance to digest what's happening it will start to feel a little better. The wait between GP appointment & your results will, more than likely, have not caused the melanoma found in your node - it had probably already spread there before & sat there waiting to be found. In my case, I was diagnosed Stage 1b in 1996 & discharged 5 years later. In 2009 melanoma was found in a node in my groin and one in my pelvis. My consultant thought that it had probably travelled there in 1996 & sat there for 13 years before making itself known!

    As for your GP, sadly very few GPs know what a melanoma looks like unless it's a mole that follows all the ABCDE signs. Yours was a flesh coloured melanoma, probably an amelanotic melanoma, and these are harder to diagnose so please don't be angry with your GP. It would be great if all GPs had a course on melanoma but only those who display an interest in the subject will have a half day course. The best way to help your GP is, once you have a treatment plan in place, ask to see them & tell them your diagnosis. It helps them in the future & they will then know, if presented with another flesh coloured mole, that a 2 week referral is necessary.

    Your seroma will eventually break down & disappear. I know it's one more thing that makes you feel pants but it will resolve itself, as will the mobility in your leg due to your scar. The thing now is to find out as much as you can about what will be discussed at your oncology appointment because you will be given some options to consider. 

    Firstly, they should tell you your BRAF status. Everyone carries the BRAF gene but in 50% of patients the gene is mutated so they are called BRAF positive patients. Those without the mutation are BRAF negative or wildcard patients. BRAF+ patients have an option of targeted adjuvant therapy which unfortunately doesn't work on BRAF wildcard patients. All Stage 3 patients have an option of receiving immunotherapy. So if you find out you are BRAF + you have 2 drug treatments to choose from. These are the options you will be offered. Some consultants still also offer further surgery to remove all the nodes in the area that it would spread to ie. if the primary was on the leg they would do a full node clearance from the groin to try & stop any spread. This was always the case before adjuvant therapy was offered to Stage 3 patients at the end of last year. Now, most consultants don't believe that the full clearance is necessary & will just offer Adjuvant Therapy (AT for short). If a node clearance is offered, it's your choice whether you want it or not. If you have it you will then get AT afterwards. 

    A lot to take in, I know. I won't go into side effects of the different drugs etc as you are already probably feeling overwhelmed. I will send you a friend request. If you would like to know more or just to chat, accept the request & then we can speak by private message. With regards to your children, you don't say how old they are. Perhaps wait until you have seen the oncologist & then decide what & when you will tell them.

    My consultant said to me, when giving me the Stage 3 diagnosis 'It's not the end of the world'. It didn't feel like that at the time but she was right - there is so much treatment out there now that we all have a reason to feel more hopeful & positive. Good luck with your scan and oncology appointment. Please let us know how you get on,

    Angie

  • Offline in reply to AngieT

    Hi AngieT

    Thankyou for the super speedy reply, that’s already very helpful.  My Girls are 17 and 10.  The eldest in the midst of A level revision etc so really not a time for her to be worrying about me and the youngest I just want to protect for as long as possible.  

    The speed this thing has gone at is terrifying, it appeared mid October literally out of nowhere, it wasn’t even a mole before, to get to 2mm by January frightens me that it’s obviously very aggressive.  I just hope that doesn’t translate into the cells it’s shed in that time.  I guess it does but again this is all stuff I need to understand. 

    Ive accepted the friend request, many thanks for that.

     Thanks again :) 

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