Husband diagnosed with bladder cancer: I feel so alone

Would you mind sharing which doctor you had at the Mayo Clinic? Which location and how you felt about the doctors care and thoroughness.

Thanks, bonnie

HI, Sandie! I was just diagnosed with a Papillary Carcinoma with micropapillary features - also a rare version of bladder cancer. It's a club I never thought I'd belong to, yet here I am. Can you talk a bit in general about dealing with rare forms of BC?

Dearest Mayday, Keep your arm and legs inside the vehicle…… it is an “E” ticket ride to be sure.
I experienced the worst and the best in what seemed to be each and every treatment scenario. Celebrating Seven years I am still not sure I believe I won! Faith, family and friends helped but truthfully nothing I read put my mind at ease. I put effort into finding joy or humor daily (losing and depression sinking in) I luckily saw enough medical professionals and asked for help!

My Treatment 30 Radiation, They only took Five minutes. 5 Chemotherapy treatments over tree days so 15 days of chemo.

My complications retaining fluids, sleeping more and more.
Nausea didn’t being until all treatment had ended over two weeks prior. I wasn’t prepared for the chemo and radiation to feel so cumulative! I just felt that now it was over I would get better and the truth was not like that! This too shall pass, and The other side of the coin, The worst and the best of my getting Cancer is I see that glass is half full. I have to walk in faith and I fall all the time! Always available!

I am so sorry. My husband had bladder cancer. The bladder was removed and he did well. My brother had bladder cancer. They removed the tumor and he had chemo. He also survived.

My husband was diagnosed with high grade t1 in January. He had tumor removed and finished bcg about a month ago. He had follow up cystoscopy last Friday and there are two small tumors. We did not expect this at all. Now he has to have a biopsy. Anyone else have a similar experience? I'm trying not to stress.

I haven't been on for awhile. My husband finished his bcg treatment. We had his follow up cystoscopy last Friday. We were not even thinking that there could be bad news. There are two small tumors in his bladder that now have to be biopsied. Now I realize we didn't ask enough questions, like is this part of the original cancer , or is this a reoccurence , or does that not even matter? We're feeling a little defeated at this point.

Oh @ljean63. I’m sending you a big hug. I can imagine that you’re both feeling defeated. I moved both your messages to your original discussion so that you can continue to connect with @sandielegal @ryman @maydayaz @naturegirl5 @bonniewhite56 @gingerw @plugger and others who understand.

I know exactly what you mean about thinking of all the questions you could’ve and should’ve asked but didn’t think of during the appointment. You were understandably in a state of shock. I can see you’ve thought of good questions to ask as posted here. Do you still have your nurse navigator and a contact number? I suggest starting with the nurse navigator to get answers to your questions and, if necessary, schedule a new consult to discuss next steps.

Thanks, I spoke with the nurse navigator yesterday. They consider it a reoccurance. Now we are just waiting for biopsy to be scheduled. After that , treatment options will be decided on. It's just discouraging that we found this out after he finished treatment. I'm trying to stay positive.

My husband had an aggressive muscle invasive bladder cancer diagnosed in 2019. Located in a pocket-like diverticulum off the bladder, that area was surgically removed with lymph nodes and 1 out of 29 nodes was positive so chemo was done, followed by BCG. While on maintenance BCG, and every 3 months after, when he had repeat cystoscopies, there was either a suspicious place to watch or need for a biopsy. I know how shocking the news is when expecting a clear report. If you can picture the bladder full of urine and cancer cells can be shed from the tumor and start up anywhere else in the bladder where they land. In their initial microscopic state they cannot be seen. and will progress. There are a percentage of tumors that do not respond to chemo/radiation/BCG.
After 2 years of this pattern, he elected to have a radical cystectomy with neobladder at Mayo. We are still dealing with complications from this surgery 7 months later, with more surgery needed. The light at the end of the tunnel is that there is no cancer present now. It is terribly discouraging even at this point, when the solution is now the source of the problem. From the first Mayo visit, we have been told that bladder cancer tends to recur. I have seen on this forum where people have gone for many years having their small recurrences removed via cystoscopy on a regular basis. When it is a high grade tumor with aggressive activity, I believe the odds of recurrence is going to be higher. While bladder removal was not an option for him initially at all, he made the decision to go for a potential cure after these repeated recurrences. My advice after fighting with my own cancer for over 10 years is to be very open minded going into each scan/cystoscopy. Cancer does what it wants to and even with the best of treatment, it can recur, so expect the unexpected and recurrence will not come as such a shock. I also highly recommend researching diet changes, immune support,etc for cancer patients. I love the book by the Mayo palliative care physician Ed Creagan "How Not to be my Patient" and "Radical Remissions " by Kelly Turner for patient stories and practical suggestions for eliminating your cancer with complementary methods. Cancer is a battle that you must work to win. The medical part is just the main cavalry, there are many weapons you can find to support them. Good luck to you and your husband. Be strong and advocate for yourselves.

Thank you for sharing. My big concern is that the soonest opening the doctor has got a biopsy of the new tumors is 6 weeks away . Does this sound like it’s too long? I don’t want to be that pushy wife, it seems like too long to wait.