Opting for no treatment

Just to clarify for everyone reading this thread, one can ask for a referral to palliative care at any point in the cancer journey to help manage symptoms, not only at the end.

@miscanthus, I'm glad you're seeking a referral to palliative care and/or oncology social work. It is hard to hear that treatment options are running out. His urologist should be able to draw the picture of what progression might look like should no more treatment be administered. The oncologist was very frank with us when my father was near the end. We had him for 13 months instead of the predicted 6 months, but the progression was almost text book and we were well prepared (as much as one can be).

I send you a virtual shoulder to lean on when needed.

@colleenyoung In your last post you mentioned that "progression was almost textbook", if you don't mind and are able, would you elaborate please? If it is too much I understand. Thank you.

@knshopper , that might not have been the best choice of words. What I meant was that my dad's oncologist told us what to expect as his cancer progressed and it was as he predicted. We also found this article helpful to be prepared for the final days:
- Final weeks and days: What to expect https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/Final+weeks+and+days_+What+to+expect.aspx

@miscanthus
I am so thankful to read all of these comments, so many questions I have had, already have been answered.
I just started my first treatment and only due to staff shortage I have to wait an extra week, but am very scared since I have only had one major surgery- knee replacement - and am now 82. BCG was not recommended after Vesta report came back.
My next chemo treatment is Tuesday.
I will continue reading all your the heartwarming comments from you all.
Thank you so very much.

@hummelb99, how did your chemo session go? How are you doing? Will you have surgery after chemo?

@colleenyoung
I have 3 more weeks of chemo, then Cat Scan and cystoscope, to see if chemo worked.
Won’t get an answer till July.
So far I have had very little side effects, mainly very tired and a little nauseous at times,
Thank you for checking in with me.

@hummelb99
Thank you for all the hugs and good wishes and the very same to all of you going through bladder cancer treatments.

Wanted to post an update. My family member decided to go ahead with the BCG treatment and it has gone really well. Lots of anxiety before the first session for all the normal reasons along with an hour commute each way to get to the office. However, we complete session 6 on Friday and everything seems to be going very smoothly. Caretakers have been amazing and the process was a lot less scary after completing the first visit. My question would be, I understand that there will probably be a follow up cystoscopy after 6 weeks and if all is going well, maybe another round of BCG will be recommended? If that's the case, should we expect that this will be a long term treatment option as well? Thanks for any insight.

I assume the immunotherapy you refer to is BCG. I am 81 and have had 12 BCG treatments before stopping due to reactive arthritis. The treatments are not difficult, a short visit to the treatment center, slight discomfort for a minute for the catheter and instillation and that’s it. Side effects are normally pretty easy. You can stop at any time if there are problems. Success rate is high so why not give it a try? I have a post on this site describing my experiences over nearly two years. It might give you a better understanding of my experiences with BCG.

@hummelb99
No need to be scared. As BCG deemed inappropriate for you, you will probably have Gem/Doce. My experience is that the treatment is a little uncomfortable, but there are few if any side effects, apart from urinary frequency and urgency. I am male, 85.