What to do now...

Hiya. I had a melanoma lump removed from an armpit lymph node as well as 29 other lymph nodes which all came back clear. So in my brain, cancer free...

They have now offered me Immunotherapy. Foolishly I was initially excited about this as it sounded very natural, using your own body's immune system to hunt stray cells, and I pictured someone skipping through fields with a butterfly net just scooping anything they find up. Well, having down more research, it seems more like a tank ploughing through the same field indiscriminately shooting at anything it wants. So I'm now a bit confused as to what to do. In my head I'm now left with a choice: Take therapy for a year which will cut down chances of it coming back from 25% to 12.5% (How comes its never phrased as you have a 75% chance of being ok?) but risk 20% chance of really *** serious side effects and 1% death or don't have the therapy, go super healthy, cross fingers it doesn't come back but have nothing attacking the rest of my body...

I already feel unlucky in this as the melanoma came from a stage 0 mole that was removed so its pretty *** so far.

Also scared that as I am Autistic/ADHD-y I have a tendency to hyperfocus on things and watching for symptoms that could lead to really bad things may cause me huge mental worry and be super negative.

Sorry, just needed to get stuff down. Not sure what I am looking for.

  • My mum was diagnosed with lung cancer 5 years ago and was given the option of Chemotherapy but was given a 5% ( 1 in 20)  chance that it would be any benefit to her and given her borderline health issues and the fact she was in her 70s, we declined it as all it would likely do is make her sick.

    You need to speak to your consultant and family as to what the best option is . Your age and health should also play a part.

    if it was halving the likelihood that the cancer could come back I’d seriously   consider it 

  • Hi,

    It's a real dilemma when choosing the next steps and considering mortality rates v side effects. There is a lot to discuss here and so I've sent you a friend request. If you accept it, we can chat about this and I can give you some advice about the treatment etc. I'm assuming you are Braf negative as you haven't mentioned being offered a choice of Targeted treatment? 

    I haven't had any drug treatment (I was diagnosed long before it was available for Stage 3 patients) but I know many who are currently having the treatment & I know that not everyone has side effects or bad side effects - everyone is different. 

    With regards to you initially being diagnosed Stage 0 - it sounds like you were misdiagnosed & you were probably 1a. This is because a true Stage 0 (in-situ) does not spread (it hasn't grown below the epidermis into the dermis). A misdiagnosis rarely happens but in the melanoma community we have come across this a small number of times & you were unlucky. That being said, even if correctly staged, it may have made no difference to your treatment at the time. 

    The treatment & side effects do sound frightening but it's having great results & many more Stage 3 patients are surviving without further spread. 

    Meanwhile, if you would like to speak to clinicians to try & help make a decision, look at the Melanoma Focus website - they have a dedicated Nurses Helpline & they will be happy to try & help you.

    Angie (Stage 3 melanoma patient since 2009)

  • hi 3rd

    You may be prescribed pembrolizumab or similar immunotherapy. The one I have had for the last year is Cemiplimab to treat incurable metastatic cSCC. Of the big list of dreadful possible side effects including death. I only get skin rash and fatigue both of which are manageable. On the plus side the cancer has stopped spreading and some tumours are no longer detectable. Reducing the chance of recurrence from 25% to 12.5% is actually a 50% improvement of the odds, well worth taking in my opinion. Do not take chances with cancer, this well tolerated treatment can mop up any remaining cancer cells that may be lurking in your body. Give it a try and if you do get side effects you can always discontinue treatment. 

    Ed