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.

Rivergirl
After my last 2 CT scans for esophageal cancer showed the esophageal cancer tumor is gone, BUT they showed a mass on my left kidney which grew 1 cm between scans. They did a biopsy of the mass and it came back as renal cell carsonoma. Now I'm signed up to meet kidney surgeon on 9/14. I'm anxious to learn if he wants to try and remove mass or will have to remove the whole kidney. The good news I've now met several people who have had kidney removed and recovered with no long term affects. We both can hope for good results. Let me know what you learn next?

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How your Doctor blurted out those words is horrible. If she even thought is was the C word, she should have approached this with much much more tact. If she is aware you have PTSD, her verbiage should have been much more delicate. ~ I am sorry you were exposed to radiation. I have watched several documentaries about the nuclear testing. So many were exposed. 🙁 . Try your best not to worry. You have more tests to do. ~ God bless you. ~

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Sending hugs as you walk through this & sending good thoughts for good results. You are being smart in planning to see doctors at Mayo.

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I'm an intense worrier also - absolutely hate waiting for results/appointment dates that are too far out. Agree with Sally that words and approach are so important....one time I had a nurse say to me, "have you had a stroke before?" I then started grasping my hands to test for weakness and thinking I needed to contact my best attorney friend asap (I very definitely was not having a stroke). For me, the very best thing for anxiety is walking/gardening/getting out into nature. I hope you'll be able to find something that will help you through this difficult time. One thing that's reassuring, you will get the best possible care at Mayo! (((hug)))

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Dear all,
Thanks for the encouragement. The cytology came back negative. I am going to insist on the cytoscopy first (next month) before rushing into still another CT scan. If I agree to it, it will be the fourth one I've had of my abdomen and pelvis in less than 2 years.

I feel now my oncologist should have suggested an ultrasound first to look at the lump in my stomach (which was nothing) instead of a CT. According to Harvard, CT scans of pelvis and abdomen with contrast expose us to 20 times the normal amount of radiation we get from natural sources (like earth/sun) in one year. As a Downwinder whose whole little body was exposed to radioactive fallout when I was a toddler, and as a b.c. survivor who had six weeks of radiation tx in 2012, I am highly sensitive to the overscanning culture of our American medical community. The same article researched the lack of adequate warning about radiation exposure from docs to patients, and equally patients are asking for scans as are docs "just to be sure" which led to overtx and/or emotional harm.

If the cytoscopy warrants a closer look then okay, but right now with no mass, lesion, nor suspicion for cancer other than a thickening wall and a little inflammation, I feel that I'm being recommended for overtx by my current urology team.

Hopefully I'll hear from Mayo about an appt but I feel like following up since it's been over a week now. I'm already a Mayo patient as is my husband. Knowing we don't have to be anxious about Mayo care is huge.

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Pelvic US tomorrow of my ovaries. Mayo urology visit with NP Friday. I am having the worst anxiety right now—worse than when I was first dx with BC. When I see a text or a phone call reminding me of these appts my stomach jumps into my chest. Seriously. I'm taking Xanax and still feeling near tears and terrified. I talk to my PTSD psychologist weekly. Still almost unable to think about anything but this.

I could be facing 2 potential threats: ovarian cancer or a recurrence of breast cancerin ovaries due to potential enlarged ovary also noted on the initial report AND bladder cancer (the initial CT scan read thickening bladder wall and hydronephrosis/ureter. Trace ascites but don't know where. Both are serious from what I've read. The radiologist who wrote the report said due to "UTI" or "malignancy". I can't unsee the "malignancy" that screamed at me the first time I read the report. Aren’t there any other possibilities between those two extremes?

I have researched these threats and feel that my life is essentially over-bladder cancer recurs, and recurs, and recurs, and the treatment sounds awful. Ovarian cancer can be a death sentence. I can't shake the feeling that I'm going to find out I'm headed toward being a sick old woman for the rest of my life.

I miss my dear dog so much; had to put her down after 13 years last month. She was so calming to me, like a spirit guide who kept me sane during dark times. Right now-I just feel horrible. How can everything I've been doing to keep myself well-and I mean I never let up-count for nothing? I've been taking bloody exemestane for 11+ years to prevent breast cancer recurrence (I took a 2 month break to see if it affected urgent bladder, and it seemed to help a bit, but I am back on it, too scared to go off it). My BMI is 20. I don't smoke, I do yoga and fitness 5 times a week and add in regular hiking at altitude. I eat organically and vegetarian, no fast food, meditate, my work is mostly fulfilling. No other problems except for IBS (which also could be ovarian cancer instead), and I'm managing those symptoms well. How can it all feel like it's going sideways on a speeding train all of a sudden?

Rivgirl

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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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@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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Thank you for posting this unusual natural support supplement. Our medical system seems to be binary - either we go in that direction or we go natural. I often wonder if combining the two may be worthwhile. With our DNA being unique to only us individually, the medical option may be great for one person and then won't work very well for another. I think it's good to keep our minds open. This life we live is an experiment for each of us. I hope you continue to do well & stay cancer-free.

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@dks

Thank you for posting this unusual natural support supplement. Our medical system seems to be binary - either we go in that direction or we go natural. I often wonder if combining the two may be worthwhile. With our DNA being unique to only us individually, the medical option may be great for one person and then won't work very well for another. I think it's good to keep our minds open. This life we live is an experiment for each of us. I hope you continue to do well & stay cancer-free.

Jump to this post

I totally disagree that treatment should one or the other. Humans on this planet have always used everything that might work. Pharna companies may like you to be dependent on them. There has always been a problem with finding out how and when supplements might help because of sources and quality control. Much misunderstanding. Like curcumin, water soluble vitamins only stay in your body a short time. For a long time doctors have negated the use of vitamin C supplement because it is flushed from the body in several hours. I take "timed release", which keeps it effective for 12 hours or more depending on what you buy. Many good doctors are beginning to accept holistics as valuable as science proves it.
https://pubmed.ncbi.nlm.nih.gov/34641328/

https://www.tandfonline.com/doi/abs/10.1080/15569527.2021.2003377https://www.sciencedirect.com/science/article/pii/S0024320520307347https://onlinelibrary.wiley.com/doi/10.1002/ptr.7225https://molmed.biomedcentral.com/articles/10.1186/s10020-019-0096-zhttps://pubs.acs.org/doi/10.1021/acsami.1c08775
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@dks

Sending hugs as you walk through this & sending good thoughts for good results. You are being smart in planning to see doctors at Mayo.

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Bladder wall thickening was the first indication of cancer.

Passing blood soon followed. Now on second infusion of Chemo and Filgastim injections.

So far, CT scans haven't detected cancer cells elsewhere. Hope that continues.

Things will be evaluated after the third Chemo infusion on November 15.

Almost certainly, both my bladder and prostate will be surgically removed.

Hope everything goes well for you.

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