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Stage 1 Bladder Cancer/Gemcitabine

Bladder Cancer | Last Active: Mar 9 9:27am | Replies (39)

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@cstrate

My heartfelt thoughts and prayers are with you, may your battle with cancer be a successful one! 🙏🙏🙏🙏🤗🤗

I too was diagnosed with bladder cancer in Sept. 2023. I was given blood thinners for a suspected heart problem (which came out all clear) which started the tumor to bleed. It took me a month to find a urologist as nobody would see me as I was without a primary physician ( mine had retired). I bled lightly for 2 weeks then heavy for 2 weeks, with no other symptoms beside a low back/hip ache which I attributed to my exercise. I have no risk factors, don't smoke, no family history and a women. The diagnosis was very difficult for me to digest and come to terms with, actually it still seems surreal but then my urogynecologist found it on a Monday during cystoscope and immediately sent me to urologist surgeon and 4 days later I had my first surgery to remove the cancer. I have high grade, highly aggressive and invasive cancer and in the situ, however its stage T1 and has not penatrated the muscle wall. My life changed in an instant and has been a living hell for four months now. I have had three cystoscopes, 2 surgeries and only 5 out of the 6 BCG treatments because of extreme side effects. After first 2 treatments I got kidney stones and had a severe bladder infection and was 2 weeks off. Went for 3rd treatment and an hour later was having severe bladder, groin and leg spasms so severe I could hardly walk. Went into ER where they did an ultrasound check for blood clots, an xray and a cane, and came out with no diagnois or explanation for my pain. Fourth treatment the spasms and pain increased dramatically and again went to ER (3rd time) in search of answers and relief. At this point I could barely walk and graduated to a walker. Again no answers or relief. Five days after 4th treatment, pain spasms had intensified to 10+ on pain the pain scale, leaving me unable to walk with a walker without assistance from my husband. Went into hospital for the fourth time to no avail. I took the fifth treatment with much fear, tears and determination. Determination to get thru round 1 (6 treat), not ready to give up and let cancer win. As expected all adverse reactions spiked exponentially, screaming and crying in agony and unable to walk only a few step, reliant on my husband to get me to the bathroom, to a chair, to the bed etc. The treatments have left me in excuriating pain and debilitated. Was schedule for 6th treatment but treatment was ceased because of the extreme adverse reaction. Seven days past last treatment and nothing has changed except medicines that don't seem to be working. On heavy anti inflammatory med and prednisone and added nausea, bladder and back pain and light bleeding upon urination. Searching out a second opinion! Does anyone have a urologic oncologist specific to bladder cancer or do you have separate urologist and separate oncologist? How many opinions did you get and has anyone experienced the same symptoms? Forgot to mention I have had a fever the entire time ranging from 99.3- 100.7, my norm 97.5. Sorry for length of post, so desperate to find answers and relief and thought others may have or are experiencing the same thing. Blessings and good health to all, you have my prayers! 🙏🙏🙏🙏

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Replies to "My heartfelt thoughts and prayers are with you, may your battle with cancer be a successful..."

@cstrate, you've been through a lot. It sounds like you might benefit from the multidisciplinary team approach at Mayo Clinic. Bladder cancer care at Mayo may include urologists, oncologists, radiation oncologists, pathologists, radiologists other specialists work to provide comprehensive care.

If you'd like to speak with a scheduler to learn more, you can start here: http://mayocl.in/1mtmR63

How are you doing?

I am so sorry fir all you are going through. My husband was also diagnosed with HG T1 bladder cancer in 2020. We are lucky to live in AZ where there is a Mayo Clinic. My husband was enrolled in a clinical trial using Keytruda and BCG. He is under surveillance now. He had a great team at Mayo. We are just taking it a day at a time, as I know high grade is agressive.

My diagnosis was June 2023, Stage one, non-muscle invasive high risk -- due to the size of the original tumor (5cm) and micropapillary features. Very lucky to date, the second TURBT done 3 months after the first, showed no tumors, blood assay showed no circulating cancer cells. BCG was started 6 weeks after the second TURBT. No significant side effects and I was able to complete the induction in 7 weeks. The fact that you have completed 5 out of the 6, means that the induction is considered as complete. However, my question is with your side effects, why was no alternative chosen? Others are available and still others are in the pipeline for FDA - USA approval. As a side, my follow-up Cystoscopy showed no tumors nor did the urine assay show circulating cancer cells. My only issue is that due to the current BCG shortage, my maintenance BCG will be delayed.