Refused Adjuvant Therapy

Hi Daffodil59, it sounds like you have lost some faith in your team, and that you want to know if what they are advising is correct, and seem a bit freaked out by watch and wait.

 I don’t know if you can only get adjuvant treatment once, Nice guidelines do change, so what was true back in 2019 may not be true for 2020 or 2021 so you may be being a little hard on yourself and your team, but it’s an understandable thought process you might go through. The Macmillan support line may be able to help you check some facts out, and advise you about getting a second opinion. 

I have had times when advise from surgeons and oncology seems not to agree, and my mind has been stuck in a sort of this does not compute or fit in with what I’ve been previously told, it’s tough to get around. I made a call in that case to my Macmillan nurse who had sat in on the MDT meeting and would have heard all considerations. She ran through what was said and the reasoning and that really helped for me she listened to my fears and reasoning and was able to relay that back to the team. It’s always an anxious time when treatment plans change.

i think one positive to hold onto is that after the dissection you are clear now, and I’m hoping that you feel well now. 

I have experience of being on watch and wait, and on restarting immunotherapy after a recurrence in my nodes. I had a break during covid I wasn’t clear but stable, and they reacted quickly to arrange scans ahead of when they planned when I felt something growing. It was nice being off treatment though, and It’s a position I hope I can get to again. There is that concern though that you don’t want to do anything to jeopardise something worse in the future either from a growth of the cancer or from drug side effects. For me, I had in my head for a long time the black and white thinking of clear being good, any cancer bad, and hadn’t contemplated the grey area of stability being good to. 

I hope you get to change what you can and find a level of comfort with those things you can’t change.

Hello KT

Thank you for your lovely reply. I’m calmer today, although woke up with red and swollen eyes so stayed off work today. 
I followed your advice and called the Macmillan helpline. Someone is going to call me over the weekend. 
I found out you can only get funding for one adjuvant therapy in a 12 month period. So even though I only basically had one week out of 52 I wouldn’t qualify for swopping to immunotherapy. But today I was told that because my clinical profile has changed since starting the first therapy that I have  good grounds for getting a second opinion to start new treatment. I have to ask my consultant to request a second opinion. That’s a little daunting, but I’ve set the wheels in motion on the advice of my dermatologist.
A new Nurse specialist started this week. The previous one left last autumn so it’s been difficult as there was no one to turn to for help and advice. Hopefully things should improve from now on. 
Ive read your profile and the posts you’ve added to this forum and know you’ve been through the mill. I admire you for the way you help others on here, and for the bravery that comes through your posts. Thank you. And the other regulars who always reply and offer support. 
Even though I’ve been on this journey for 16 months now, I still find it hard to reconcile that one small mole could cause your whole life to turn inside out. It may end up that I have to remain on watch and wait and can’t get any immunotherapy until (or if) I get a recurrence. It’s very, very scary. 
But do you know what? If that happens I’m going to make the most of it and book a holiday as soon as we can and get away and forget everything. That’s the plan anyway

Thank you again  You’re a special person xxx

Hi Daffodil59 thank you so much for your kind words, they were very much appreciated. I’m glad to read you’re calmer now and that you’ve made some progress on sorting things through. I can’t imagine not having access to the specialist nurses in my hospital as they are such a great liaison point, I hope yours settles in to her new job and does the same for you. A holiday to look forward to sometimes the planning for that can be equally enjoyable as the holiday itself, so twice the joy.

Good luck with everything