Thoughts on declining treatment

Hi JLB91463690 and a very warm welcome to our group.

I was fortunate that my melanoma stage meant that I didn't need immunotherapy or targeted drugs so I didn't have to make any decision about whether to take it or not.

However, 3 years ago I was diagnosed with breast cancer and I was given the choice of whether to have chemotherapy or not. Like you, I was given a long list of side effects that I might get if I chose chemotherapy, but I hardly got any and you might be the same with treatment for your melanoma.

Although you say you don't want to talk to your oncologist about this, I think that you need to have that conversation if only to find out what might happen if you don't have the treatment.

There are lots of people in the group who are having treatment for Stage 3 melanoma and hopefully some of them will pop on soon and share their experiences with you.

Sending ((hugs))

Can you speak to anyone for example the National Autistic Society or Scope and see if there's any support available?

Don't decline treatment; you have no idea what the side effects could be. When I was being told about a new medication,  they said I could start bleeding out of my orifices! A lot of what they warned me about I haven't had. What I have had, I've managed.

Eg I have extremely dry eyes so bought strong eye drops, eye gel for puffiness, night treatment and a reheatable mask. I also drink a lot of water and take omega 3.

You'll get through this.

I completely understand your reluctance to agree to immunotherapy in your circumstances. However there is the option of stopping treatment if it gets too much - it’s not a case of no treatment or you have to complete the course. You may be lucky and have only mild side effects. Do you have a cancer/macmillan nurse you could talk to? 

I was diagnosed stage 3b last year and completed immunotherapy in July 2025. I had several side effects and I’m still getting them three months on. My oncologist checked every time she saw me whether I wanted to continue or not and would have completely understood if I’d decided I’d had enough. 

Best of luck. 

I declined immunotherapy due to the cons outweighing the pros for my stage (3a). Targeted therapy was not an option, as my BRAF status wasn’t known then (various reasons given by the testing lab). The oncologist did say that with the targeted treatment, any side effects that you may get will stop once you stop taking the tablets.

Hi JLB91463690

It does sound like you have a lot on your plate right now...

My advice would be to try the treatment once and see what the side effects are.  They may well be minimal and you find that you can deal with them.  Also its possible that your team will be able to "tune" the dosage once they know how your body reacts, and reduce or eliminate any problems you have.

Of course declining the treatment is another option.  I would ask your oncologist what they see as the likely result of doing that.  

I was fortunate to able to force myself through a helter skelter of ops and courses of meds. These all came with some good and bad days. [These are all explained in more detail on my profile] But for the last six years I've been completely clear following an imuno treatment.

Take care,

J

I had immunotherapy. I sailed through a long process of one year . I am stable have been for five years . It’s not for everyone but I was stage 4 it was right for me if I had to do it again I would