Husband diagnosed with bladder cancer: I feel so alone

Posted by ljean63 @ljean63, Mar 28, 2022

Hi,
My husband had a tumor removed from his bladder. Biopsy results were conveyed to us as non life threatening bladder cancer. He had bloodwork and Ua prior to treatment and Ua showed cancer cells in urine. The doctor thinks the cancer is in his ureter. My husband still thinks it's non life threatening, but I looked up what was in his notes and it stated high grade T1 disease. I looked it up and now I'm freaking out and I feel so alone because I tell him everything that upsets me, but I can't share this. I also think his urologist isn't telling us anything .

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

I've had 4 Chemo infusions for bladder cancer at the VA hospital in Madison, WI, and scheduled for #5 on December 27.

I've also had various scans, MRI, CT, etc.

This afternoon I'm headed back to Madison for a PET/CT scan.

Here's a link detailing that procedure:

https://www.cancercenter.com/diagnosing-cancer/diagnostic-imaging/pet-ct-scan
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Hang in there. we need you. i had my bladder removed years ago and could not have made it without my care giver and soul mate.

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What a fighter you've been for many years. Bless you! Thank you for the good holiday wishes. Wishing you many golfing days in 2024!

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@dks

At 71 years age now, I totally hear you. Making a decision as to how to progress (or not) in regards to a particular personal medical situation is maybe the hardest thing. Celebrate something good each day! My best to you & yours!

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Thank you for those kind remarks. The whole thing is kind of surreal to me because I believe it all stemmed from the prostate cancer that I had back in 07 with a PSA. I think it’s either 10 or 12 something like that and I had it radiated at one of the best hospitals here in the area with proton therapy. I can’t remember how many Sessions I did but the permanent marker that was used for aiming the radiation is still on my scrotum or wherever it is for the prostate. However, the PSA never went down below two which is really weird because my brother had the same thing done in his location and his PSA went down to zero and he does not have any problems with his bladder or anything like it. The worst part is the encroachment of the loss of vision in my left eye which is now about 40% and I hope it doesn’t get any worse because nobody can handle it. Nobody does anything about it and as far as I know nobody in the world is even working with the optic nerve, even with the new stuff that they’ve developed regarding Growing this and knew that with stem cells. That would be interesting to see if it would work but there’s nobody to call to find out. Regardless, I’m still alive but the main thing is I’m 86 years old and even though my brain is still very intact, my Short term memory is not the greatest but my long-term memory is fully intact which is really weird to me but that’s the way it is. I’m a five time cancer survivor starting with colon cancer and then a couple lesions on the outside of my left lung and then prostate cancer and then skin cancer and now bladder cancer , the ladder of which is probably gonna kill me because I really don’t think I’m going to try and do the cystectomy mainly because of the amount of downtime the length of the surgery the length of the hospital stay and the approximate 10 days and rehab while they help me learn how to walk again and all that kind of stuff. at my age, probably letting nature take its course is probably the best idea. Regardless, have a happy Christmas. Have a happy new year and I wish you the best and thank you very much for your comments again.

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@rickbsig

I called two of the best eye clinics in the nation, one being in Miami, which is where I’m from and one in Chicago. Both responses to me on the telephone was that they did not work on the back of the eye and although they’ve heard of the on the optic nerve they refused to give me an opinion as to whether Cate Truda might have caused it. I don’t know if there’s anybody in Europe or China or any place else that could help me but the people in Chicago and the people in Miami said that there was nothing that they knew of or could do to help me. The damage is now a little bit more than 40% of my vision in my left eye going left to right And because my right eye was damaged when I was 13 and it has taken over the predominant, I can see well enough to watch TV and play golf having to learn how to hit the ball all over again with this vision impairment, but driving is out of the question because after a couple hundred yards The vision is not perfect even though it’s clear, I can’t really tell if there’s one image or two. Thank you very much for your help. Thank you very much for your comments. I really appreciate it but at my age the next thing is just to let nature take its course And spread throughout the body and when it gets too bad, find somebody who sells pills and take a couple of those and just go to sleep. Have a great and wonderful holiday season Christmas and New Year’s and bless you.

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At 71 years age now, I totally hear you. Making a decision as to how to progress (or not) in regards to a particular personal medical situation is maybe the hardest thing. Celebrate something good each day! My best to you & yours!

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@dks

I'm so sorry you're living with this situation. Have you considered seeing someone at a major hospital like Mayo, Vanderbilt or UCLA?

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I called two of the best eye clinics in the nation, one being in Miami, which is where I’m from and one in Chicago. Both responses to me on the telephone was that they did not work on the back of the eye and although they’ve heard of the on the optic nerve they refused to give me an opinion as to whether Cate Truda might have caused it. I don’t know if there’s anybody in Europe or China or any place else that could help me but the people in Chicago and the people in Miami said that there was nothing that they knew of or could do to help me. The damage is now a little bit more than 40% of my vision in my left eye going left to right And because my right eye was damaged when I was 13 and it has taken over the predominant, I can see well enough to watch TV and play golf having to learn how to hit the ball all over again with this vision impairment, but driving is out of the question because after a couple hundred yards The vision is not perfect even though it’s clear, I can’t really tell if there’s one image or two. Thank you very much for your help. Thank you very much for your comments. I really appreciate it but at my age the next thing is just to let nature take its course And spread throughout the body and when it gets too bad, find somebody who sells pills and take a couple of those and just go to sleep. Have a great and wonderful holiday season Christmas and New Year’s and bless you.

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I'm so sorry you're living with this situation. Have you considered seeing someone at a major hospital like Mayo, Vanderbilt or UCLA?

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I was diagnosed with bladder cancer invading the wall - there is a name for that; diagnosed by accident while technician doing ultrasound scan of kidneys. That was 2017 January and for the next two years I was given a tuberculosis virus (BCG) and, later, treatments of anti-cancer bladder wash (like BCG, injected into bladder via urethra, held for about 2 hours and then urinated into toilet with cup of Clorox poured into toilet before flushing. In 2022 new oncologist recommended a new anti-cancer drug, Keytruda to prevent cancer spreading. Three treatments, 3 weeks apart, half hour infusion each led to one double treatment July 2022; minor discomfort but bearable. Another small treatment November 2022 and one more January 2023 was the end; I awoke One morning first week of March with 20% loss of vision in left eye on left peripheral. After seeing 3 different eye doctors during the next 10 days, the consensus was “stroke on the optic nerve” and the best to hop for was it would not get any worse but, nothing could be done to stop it and no one works on back of eye, only front! Keytruda? Good guess but, I have no more proof than their brochure that does mention eye problems. Draw your own conclusions. I got rid of the Urologist and Oncologist in minutes. Can’t drive any more and golf game has reverted to learning all over again. QED

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@knititout

Thank you! A little knitting accomplished, yes. Dad is doing great today! In fact, better than most days last week. We are going for a short walk now. Mailed my mom a letter to Baylor Rehab in Dallas where she is intensively rehabilitating from a spinal cord injury from a car wreck in Georgia 8 days after dad’s 1st bladder biopsy. Waiting for the next of my three sisters to arrive for a visit - one sister left yesterday, and the other is with mom. God is good… all the time!

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Amen to your comment. Your faith is what will get you through this.

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@katydid77

In re-reading your postings I realize your Dad is having a Turp. This is not as extensive as the surgery my Husband had. I hope this is sufficient and he will not have to have a urostomy. Please let us know how things are going for him..

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Deep bladder resection. Might not qualify for cystectomy due to probable metastatic disease.

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