First time poster here. In 08/2021 my spouse for now 35 years was diagnosed w stage 3C metastatic nodular melanoma after removal of a bulbous black bubbly mole on the back of his knee that he initially declined to get checked out for about 4 years. The lymph node in his thigh was also “packed full” of cancer cells and removed. Margins outside of the removed node were NOT clear. Highly suggested he start immunotherapy asap and he did.
5 months into it he had several nodules pop up in his thigh (same leg). Surgeon wanted to remove them and he declined. I asked if these growths meant his cancer was beyond level 3C and she just said that once it comes back they don’t really talk about it in terms of levels anymore? She was not happy that he didn’t want them removed. His oncologist told him immunotherapy wasn’t working and because he is BRAF negative he doesn’t qualify for other treatment and suggested he join a trial. He declined. The nodules/growths receded on their own and his scans looking for distant growths were clear so he stopped seeing the doctor.
Fast forward to 3/4 months ago and he developed a small bump under his skin in the same original tumor area. Today it is nearly the size of a golf ball. He got new insurance and saw a new oncologist and got new scans since it had been about 2 years. The bump which they are calling a tumor showed up on the PET but nothing else lit up. Oncology wants him to go back to dermatology and he has declined, Oncology also called and wants a chest CT which he is scheduled for in a couple weeks from now.
He does not want to get treatments and when I have suggested looking into options he says he doesn’t want me to do any research about it. I am respecting his choices but I personally would like to know what’s going on and what to expect.
I feel like I’m flying blind. I am starting to develop some pretty crappy anxiety. I guess I just need to talk. Thanks for listening.
Hi MelissaO and a very warm welcome to the melanoma forum which I hope you'll find is both an informative and supportive place to be.
It must be very difficult for you accepting your husband's wish for you not to research treatment options and also accepting that he doesn't want to be treated.
I can understand why you want to know what will happen now and wondered if you accompany your husband to his appointments and whether he'd be okay with you asking his consultant your questions?
"Never regret a day in your life, good days give you happiness, bad days give you experience"
It sounds like you're doing all you can to support him and, as you say, maybe he'll change his mind about having treatment if the new tumour is painful.
One last thought if he doesn't want you to ask questions at the appointment, do you think he might be amenable to you asking questions at the end of the appointment if he went out of the room? Or, do you think he'd give permission to his skin cancer nurse specialist (SCNS) for you to speak to him/her over the phone?
"Never regret a day in your life, good days give you happiness, bad days give you experience"
You're very welcome MelissaO and I hope you can get the answers you need from speaking to the SCNS.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
That's good that you've been able to get up to date information from your husband's nurse this morning. I hope it gives you some support knowing what's happening.
I'm sorry to read though that your husband's leg is now very painful but hopefully they'll be able to schedule him for surgery fairly soon if that's what he now wants.
Although it was me with melanoma, I can understand how difficult it must be for you not being with your husband right now. Take care if you decide to drive over to see him.
You might also like to join another forum here called the carers only forum. If you joined, it would give you the chance to talk to other carers about your emotions and find out how they cope. If this is something that you'd like to do, clicking on the link I've created will take you there.
Do continue to let me know how you and your husband are doing.
((hugs))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
