Large growth after resection - feeling anxiety over spouse refusing further investigations

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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  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?

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  • Thank you for your reply.  Good questions.  I have accompanied him to all of his appointments and treatments.  We have a good relationship and I respect his decisions for himself but he does not seem okay at all with me asking questions during appointments.  I know, I tried.  I think this is because he likely doesn't want to know the answers, which is his choice.  I do continue to ask him how he's doing, how he's feeling and if there's anything I can do to help.  This large tumor on his leg is bothering him now - feels hot and itchy and painful at times.  Maybe he'll change his mind and want to get it looked at again.  Thanks latchbrook

  • 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?

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  • You bring up a good point - that I can probably call and speak to his SCNS - she gave me her card.  He has an upcoming chest CT scan which his oncologist ordered after his PET came back.  I took the call from scheduling and asked to make sure they had the correct patient as I thought that was odd.  I suppose since he is okay with them calling me to set up appointments and he's fine that I go TO appointments that I can probably speak to them when he is out of earshot.  I think overhearing just must bring a lot of anxiety to him.  I can understand that.  In fact, when I was trying to discuss some ideas with him just this past weekend he verbalized that it was giving him way too much anxiety to talk about it.  So, it might not be that he doesn't want me to talk to the doctor.  It is probably that he just doesn't want to hear it.  Thanks for listening and letting me bounce my thoughts.  

  • You're very welcome  and I hope you can get the answers you need from speaking to the SCNS.

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  • My husband has been a bit like this. I thought burying his head in the sand to begin with but he has a different way of processing things. I need to talk out loud to process. He stays quiet and works things out for himself. We have checked in with each other about what we want to know when. I was miles ahead of him with my own research but kept it to myself until he was ready. Forewarned is forearmed as far as I'm concerned. 

    I am not keen on some of the options he's been given for treatment but completely respect his right to make his own decisions and I am completely supportive whatever he chooses. And I have had a conversation with the nurse without him. He's completely happy for me to do that. So it sounds like you're right, he just isn't ready to hear some of the answers.

    Take care

  • Thanks Squeak - I do feel the need to talk out loud about it.  We have a load of adult children and I've been careful about what I say to them as well.  I suppose that's why a group like this can be helpful.  He has a lot of pain starting a couple days ago and is being aggressive with a baking soda treatment he learned online.  My own anxiety is climbing bc I'm noticing I'm holding my breath often.  I need to remember to just breathe as easily as possible.  At least he has an oncologist and is plugged in to care should he decide to go that route.  

  • Well, I did call the nurse this morning to get clarification on his last PET results. She confirmed that his mass on his leg did light up and also confirmed they saw bilateral lung nodules that didn’t light up so they want to check those with a CT scan this week. His PET was 2 months ago.  Hubby has taken a pretty bad turn in a short amount of time.. VERY fatigued and isn’t eating bc of nausea.  He’s decided he wants to do what he can to starve the cancer since he’s ”already nauseous”.  He is staying hydrated though. He told me today that his lungs do hurt.  He ran a fever/cough for a few days a few weeks back and it seemed to clear up.  But the cough is still lingering and he is still coughing stuff up. He could just have bronchitis or Covid I suppose?  Besides all this his tumor is really hurting and he feels he wants to have it removed. God bless him bc he is still trying to go to work but just couldn’t today.  I have totally encouraged him to stay home if he wants.  He told me today that he’s ready to die and thinks he is going to. He works out of town 2.5 hours away and so I am really sad that he is alone tonight… he does, however, really enjoy solitude… and has expressed it has been good to be alone.  I’m having a hard time right now. I want to be with him.  He will be home in 48 hours but I may drive over to him tomorrow morning anyway.  Sigh. 

  • 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))

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  • Thank you for replying.  I am going to join the carers group as well.  My brain is reeling with all the emotions of unfinished or unfulfilled projects and plans.  At the end of October we are supposed to go meet my husband’s favorite person outside of our family - a wonderful missionary from China who will be an 11 hour drive away - I’m hoping this can still happen!  I think my husband would be so blessed by it.  But, we will see how it goes until then. I’m so bummed.