Husband diagnosed with bladder cancer: I feel so alone

Hi, I am 69yo male with a similar story, first red flag for me was low gfr on my kidney function at my family physician, long story short ended up at Mayo with upper ureter high grade cancer! Thank God for the Drs at Mayo, had left kidney and ureter removed about 2 years ago, but it had not spread so hopefully all is well.Early detection saved my life, Hope for the best for your husband. Best wishes, Jim Ross

Thank you, Jim. I’m sure @ljean63 will appreciate connecting with you and @sandielegal.

Jean, I understand how the diagnosis of high grade and T1 can be confusing. High grade means that the cells tend to grow more aggressively than low grade. But they also respond well to treatments, which is good. T1 means that the cancer was detected early and before the cancer spread.

You’re doing a great job of asking questions. Keep asking them until you understand what you’re dealing with. I would focus on prognosis statistics. These are numbers that may or may not pertain to your husband’s situation.

What help have the cancer nurses offered about dealing with the incontinence? They can be very helpful.

Will your husband have treatments beyond surgery?

Thanks, I’m feeling better reading comments from other people. Dwelling in your own head isn’t the best thing. I appreciate you reaching out. No one addressed the incontinence. We are switching docs and the nurse navigator at the new office has already been so helpful.
My husband had large bladder tumor removed and was getting ready for treatment when urinalysis showed cancer cells again. Treatment now on hold and he is having a cystoscopy on April 7th to see if cancer is in urethra.

Be comforted and don’t feel alone. God is with you. See how He has graciously sent you to this platform where many have shared their knowledge and experience with you. It is well with your husband.

I am so sorry to hear that you and your husband are going through this. I totally understand the feeling of being alone and adrift. My husband was diagnosed at Mayo Clinic Rochester with high grade invasive urothelial cell carcinoma T2 L1, in 2019, after a local doctor missed it completely. He was able to have a partial bladder resection, followed by chemo and BCG. It was muscle invasive and had spread to one lymph node right beside the bladder. He was a BCG failure as it recurred several times in the bladder, luckily caught early so still superficial, but he quickly became tired of a TURBT every 4-6 months. He had a radical cystectomy, prostatectomy with neobladder formation in December and is recovering well despite some complications. The highly aggressive tumors are more likely to recur quickly. As shocked and resistant as we were to the idea of bladder removal initially, it is a potential for a cure, rather than continued treatment as is done with the less aggressive bladder cancers. We have learned that you need to ask a lot of questions, and to do that, you must educate yourself as you are doing. And not just you, but your husband as well. We have to advocate for ourselves with cancer to gain as much information as possible and make the best decisions. Even at Mayo, number one in Urology in the country, his surgeon will skim over things and avoid the questions. The urologist's answer to our question about genome testing was that it is not always predictive of success of treatment, which is why we tried Keytruda, which also failed to control the cancer. The first thing my Mayo oncologist did when recommending an immunotherapy for my metastatic squamous cell carcinoma ( head and neck) was do the tumor testing to see if the treatment would be feasible to try. Is there a difference in cancer cell type and predictability? Probably, but also I feel that the urological surgeons who manage your case are not oncologists, even though they do cancer surgeries every day. A urological oncologist is potentially more well-versed in regards to the chemo/radiation/immunotherapy fields. A big referral center is a valuable tool for getting the best information, and the more you read from reputable sources, the better able you are to understand the options available. I found my husband to be overwhelmed by the whole situation so most of the research fell on my shoulders. Share All the information you collect with him though, as it is his body and the final decision for treatment is his. I think that some people just want to follow the doctor's orders and hope for the best, but that is not going to find your best options. Definitely continue to advocate for yourselves, as you are doing with the new urologist. Pursue a referral to U Penn if you can. Just a second opinion there will let you know if you are heading in the right direction, or if there is something better to be done. we drive 10 hours to Mayo and have done this for 10 years for my cancer. And don't be afraid of radical surgery....it is tough, but worth it for a potential cure.

@ljean63, thinking of you today. I hope the cystoscopy went well. I'm sure you're both tired tonight. Sleep well.

Oh you are so sweet to remember! He did well, no cancer in ureter. They biopsied site of original tumor. He has some scarring in ureter and will need a small section resected after treatment completed. He will have 6 bcg treatments. He also had a stent put in. Thanks again, I really appreciate you reaching out.

That's a relief that there is no cancer in the ureter! One step at a time and you know you have people here to journey along side you. Any questions about BCG treatment coming up?

Yes, I’m wondering how he will feel. I read that usually first two you feel fine afterwards, but with subsequent treatments there can be discomfort.
Also, he did have a rough night as he’s experiencing incontinence. I called doctor last night and he said it’s normal due to stent and bladder spasms.

I would like your opinion. My husband’s current urologist did his cystoscopy yesterday. He was much more communicative than prior times. We have my husband switching to a uro oncologist in the same practice. Now we’re second guessing. Everyone seems to think a uro oncologist is better. Do you have any thoughts? Thanks!