Bladder wall thickening/terrified it's cancer

Posted by rivergirl @rivergirl, Aug 31, 2023

Hello,
I had a CT scan done last week as a routine check up by my oncologist (I'm a breast cancer survivor). The scan was fine, except it showed bladder wall thickening and inflammation in right ureter. The way my oncologist hustled me off to my urology nurse practioner the very next day and said, quote, it MIGHT BE CANCER, terrified me-I have medical PTSD anyway and her words were a big trigger for sure.

I saw my NP the next day since he's been working with me on OA bladder. I've done one tx of Mona Lisa and pelvic floor therapy and it helped but what really helped is that I finished with 11 years of taking an anti-hormal for breast cancer and I have much more control now.

My NP tested me for a UTI (negative, and I knew that-I've had UTIs) and sent my urinalysis off for a cytology and I should have them this week. He wants me to get another scan that looks closely at the urinary tract system. I don't particularly want another scan without a second opinion and if it is cancer then I want to work with Mayo so I've faxed all my urology records to the Scottsdale clinic already. He also wants me to get a cytoscopy but earliest was October.

I read the CT report results and it says nothing about mass, suspicious for tumor, or cancer anywhere.

I have no blood in my urine, it's clear, I have no pain anywhere, and since stopping the anti-hormonal I've only gotten up once a night. I don't have a problem urinating other than a bit of urgency that has improved with tx.

I'm a fit, active, normal BMI (20) 64 y.o. female uni prof that does hot yoga and pilates and hikes, and this latest bomb in my life really shook me. I am a non-smoker, but I am considered a Downwinder (fallout exposure from an above ground nuclear test in July 62-I was 2).

I was also dx this summer with IBS-D by my Mayo gasteroenterologist who is helping treat that.

Finally I should add that my husband is currently being treated for locally advanced prostate cancer at Mayo.

I hope someone can talk me off the cliff even a little, and give me some hope. I'm already convinced that I have cancer because of the urgency of my oncologist and the long face that my NP had when I talked to him.
Thank you < 3

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

I had high grade bladder cancer that did not respond to BCG so I am seven months post radical cystectomy/ ileal conduit and doing well. It sounds like something to watch ongoing but not to be too upset at this point. I also have IBSD and it is more of a challenge than dealing with the urostomy. I go to UW hospital as well but am retired Mayo Jacksonville. Wish I could get up to Rochester. I’m four hours south. What are they doing for your IBSD?
Keep an eye out for hematuria and keep up with Mayo urology but don’t worry about it. Hang in there. You’ll be okay.

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@ggarrepy

I had high grade bladder cancer that did not respond to BCG so I am seven months post radical cystectomy/ ileal conduit and doing well. It sounds like something to watch ongoing but not to be too upset at this point. I also have IBSD and it is more of a challenge than dealing with the urostomy. I go to UW hospital as well but am retired Mayo Jacksonville. Wish I could get up to Rochester. I’m four hours south. What are they doing for your IBSD?
Keep an eye out for hematuria and keep up with Mayo urology but don’t worry about it. Hang in there. You’ll be okay.

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What kind of symptoms did you have, if you don’t mind?

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I had bladder pain that I thought was a bladder infection. When that turned out negative, I thought maybe it was interstitial cystitis. I followed their recommended diet for a several months. Didn’t help. Then I started seeing blood in my urine. At times, quite a lot. That’s when I pushed for a CT and got the diagnosis.

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Okay...catch your breath! I feel your heart, your panic and fear. Totally understandable given your history and all the things your have gone through and are going through. You've done some hard things and are doing some with your husband as well. I can see how it just might seem to be too much. I understand also why your factors want yo treat this seriously and catch it early... if it is something. It looks like you've taken steps in the right direction, and are moving forward proactively. I always Try to not let the fear make decisions for me ... but it can be hard.
You seem to be handling this so well given the situation. Just do your you! You can do hard things but I'm praying this is nothing. Keep us informed and let us know how you are doing. Don't nourish yourself on the what ifs, focus on what you have! Hugs!

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@donsunlover

Curcumin has been shown to be a powerful agent that kills cancer cells. It's weakness is that alone, it is not bioavailable and is quickly metabolized out of the blood stream. Bioavailability has been remedied by the addition of black pepper extract. I currently take 1000 mg 95% curcuminoids with black pepper extract supplements several times a day.

I am 77 year old male. In March 2022, I was diagnosed with stage II muscle invasive cancer found by CT scan and cystoscopic biopsy. Did chemotherapy, but while taking the curcumin supplements 6 times a day. Tested cancer free in August 2022 and still am.

I have posted this many times on this site and my comments with many medical studies that prove curcumin effectiveness are available if you look.

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I was diagnosed with low grade noninvasive bladder cancer a year ago, in 2022. I've had about 5 TURBTs, all low grade superficial until December 2023 which shows muscle present. My urologist is going to recommend bladder removal soon according to the NP. No mention of chemo or anything else. Any input anyone could give would be appreciated!

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@chloegirl1

I was diagnosed with low grade noninvasive bladder cancer a year ago, in 2022. I've had about 5 TURBTs, all low grade superficial until December 2023 which shows muscle present. My urologist is going to recommend bladder removal soon according to the NP. No mention of chemo or anything else. Any input anyone could give would be appreciated!

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And it's still low grade.

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@chloegirl1

And it's still low grade.

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And I went through BCG treatment which was apparently unsuccessful.

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@chloegirl1

I was diagnosed with low grade noninvasive bladder cancer a year ago, in 2022. I've had about 5 TURBTs, all low grade superficial until December 2023 which shows muscle present. My urologist is going to recommend bladder removal soon according to the NP. No mention of chemo or anything else. Any input anyone could give would be appreciated!

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Have you considered a second opinion?
My mother had chemo and radiation for her bladder cancer and it preserved her bladder. There may be reasons this is not an option for you but it's never inappropriate to get a second opinion. Wishing you good luck

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@lbrockme

Have you considered a second opinion?
My mother had chemo and radiation for her bladder cancer and it preserved her bladder. There may be reasons this is not an option for you but it's never inappropriate to get a second opinion. Wishing you good luck

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Thank you for responding. I think I will get a second opinion. I've read that once the muscle gets involved it's best to remove it, but was surprised that chemo wasn't at least considered first. I go for another TURBT on 2/6 after undergoing one on 12/5 because doctor couldn't get the whole tumor removed. Then he will give me his recommendation for certain. Also if it must be removed (bladder) I would rather wait till July when I'll have Medicare & can go possibly to Mayo clinic rather than stay in state (TN) I would at least have more options. If you dont mind, when you can, would you tell me whether your mom's was into the muscle and how long ago it has been? I'm my mother's caregiver which is another reason I'd hate to be incapacitated for months. Thank you in advance.

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My mother's bladder cancer treatments with chemo and radiation started in 2019. They believed It had just started infiltration into the muscle but not enough that they felt surgery was required.

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