Thoughts on moving forward with Treatment
Everything started in Aug 2022. My husband is 53 and I noticed he was going to the bathroom way more than normal. We had a discussion about it and he mentioned that there was also blood in his urine. I made him go to urgent care. Urgent care gave him antibiotics and referred him to a urologist.
Honestly the experience with the urologist was horrible. Using cat scan results a nurse practitioner diagnosed him with kidney stones. After 2 weeks of trying catch the stone with no luck we called the office back. There was a lot of confusion at this point. The nurse practitioner couldn't be found, so another one looked at the scan as well as a radiologist, neither could find anything, no stones.
Frustrated, I decided to take him to the emergency room due to the pain, blood and frequency of urination. They performed another cat scan and found the tumor and told us to follow up with the urologist.
We followed-up and a scope was done. He scheduled surgery within two weeks to removed the tumor. After the surgery, the surgeon told me he was not able to remove all the tumor and it was bad. After he referred us to a oncologist and told us he needed to have his bladder removed. We also asked for a referral to another surgeon that had more experience with a neobladder.
So fast forward to Dec 2022, after 3.5 rounds of GCT chemo and 1 trip to the ER for renal failure he finally had the surgery to remove his bladder and prostate. During surgery a vascular surgeon was also brought in because they found cancer on his iliac vein. We were told the chemo didn't work. The neobladder was aborted and they performed an ideal conduit.
After a lot of trial, error, and frustration I think we finally found a method and urostomy bag that will work for him. Still working on ordering products thru the supplier.
We have now had all of the follow-up appointments. The oncologist is saying radiation and immunotherapy (Nivolumad). Only I've lost faith in him so I got a referral from the surgical team for a new oncologist. We had a visit with her this week. I'm so distraught, she said she wished she would have met us sooner because she possibly could have saved his bladder. I wanted to cry. Anyway can't go back now. She's recommending no radiation, another 2 rounds of GCT chemo but adding DDMVAC, then moving on to PADCEV & Nivolumab. She said the PADCEV is very effective. Does anyone have any experience with it?
He is so weak right now. I'm scared he won't make it thru this treatment. I'm debating if it's even worth it. Would it be better to just not do anything? I'm sure his quality of life would be better, even if it was shorter. Any advice is greatly appreciated.
@ldean - If I may ask, what stage was your husband diagnosed with? And how recent was his surgery? There are people on here who were diagnosed at stage 4 and had bladder removal and follow up treatment and are doing well. I am not a medical professional but think that your husband was moved along quickly through procedures and is still in the post RC healing process. Post RC with chemo healing and recovery can take months so extreme fatigue is expected and normal. I know that this is difficult to watch someone go through but I think it is much too soon to consider doing nothing especially due to the fact that he recently had a major surgery. As for the supplies - have you reached out to manufacturers for samples to decide which system works best? A stoma reduces in size during healing and it may be a bit early to determine what wafer and barrier works best. I am highly disappointed that a doctor would state post OP that he or she could have done things differently and saved his bladder had that person been his doctor. I see no value at all in having your husband second guess his decisions when it is too late. I highly suggest that whatever his new doctor decides for treatment, that you have a second opinion also. His weekness may be from the fatigue of chemo and RC as those both take our energy away for a while. I personally think you may be ahead of yourself thinking that it is not worth it. 53 is way too young to give up on life if there is a chance for him. What does he think about this and how does he feel about moving forward with treatment? I am sure that others will respond with their experiences and thoughts also. Please take the time to have your husband find out the best and most effective options before considering doing nothing. I have a tip sheet that I share for those going through RC/IC and if you are interested please message me on here. Please keep us updated and know that you both are in our thoughts and prayers. You have come to the right site for experience and support so hang in there. My best Linda Urbanski ( moderator, Bladdercancer.net team member)
Thank you for your reply. It gives me a lot of hope knowing there are people out there who are survivors. This whole situation has been really tough.
He is currently stage 4. The cancer went thru the wall of the bladder and onto the iliac vein and nerve, 2 lymph nodes tested positive. His surgery was Dec 9th, 2022. They removed his bladder, prostate, 29 lymph nodes, part of the iliac vein which they patched with a graft. After that they performed the ideal conduit. He stayed in the hospital for 5 days. Since this all started he has lost 90 pounds. Thank you for reminding me he's still healing, I definitely need to keep reminding myself that his body had been through a lot.
I have reached out to Coloplast and Convatech for samples. He was given Coloplast supplies from the hospital. We had lots of leaks in the beginning. The manufacturers have been awesome about giving advise and sending samples. We found a 1 and 2 piece convex appliance from Convatech that has lasted 4-5 days. I feel like this is a huge win since it they had only been lasting 4-8 hours.
As far as treatment goes. We are both on the same page about moving forward with treatment but we also are having discussions about is it worth it. That's why I appreciate this forums so much. Hearing the survivor stories have been a huge inspiration for us. We are definitely trying to stay positive, but at times it's very difficult. We're just taking it one day at a time right now.
WOW! Thank you so much for sharing your husband's journey and your heart. My goodness, I cannot imagine what you have been through! You are definitely in my heart and prayers.
I understand that hopeless feeling all too well. It's hard to imagine a body can tolerate so much pain and suffering. But it can! What matters most, to me, is the spirit. If we are up for the fight and think it worthwhile, it is. However if we are too tired to mount a strenuous new battle, I think that is when palliative considerations should be taken.
I definitely want to echo what Linda said earlier. Your husband being so fresh off of a radical cystectomy and chemotherapy regimen is enough to knock the socks off of the strongest person! Plainly, he SHOULD feel like crap. That, to me, is a good sign that his body recognizes balance still and is fighting on his behalf for health.
May we all keep room in our hearts and minds for the miraculous. I hope to hear good news from you very soon, or any news you are moved to share with us. All my best, Charles (Moderator / BladderCancer.net)@ldean - Just wanted to check in and see how your husband is doing. I recall that recently it seemed that his appetite was starting to come back. That certainly is a good sign and of course hydration and nutrition are needed to help with the healing process and feeling better all around. I hope that he is improving and your stress is diminishing. Please keep us posted as we are always here to listen and provide encouragement and support. My best Linda Urbanski ( moderator, Bladdercancer.net team member)
Hi there. What a lot, you have both been through. I don't have any personal experience to share and I am not medically trained but can direct you to some information on the proposed treatment on here which may help you to understand them a little better. I would definitely ask for another meeting with medical team to discuss through the options, what was considered in choosing the different options and any side effects etc so you can understand them better. Keeping you both in my thoughts as you take the next steps. Take care. We are here to listen and support, any way we can. https://bladdercancer.net/treatment/padcev https://bladdercancer.net/treatment/opdivo-bladder-reviews-how-well-works-side-effects https://bladdercancer.net/treatment/systemic-chemotherapy Laura, Moderator, BladderCancer.net prayers are with you both. Hang in there.
