Stage 1 Bladder Cancer/Gemcitabine

Colleen I made the 11.5 hr trip yesterday after talking to Steph in oncology. I have been in excuriating and debilitating pain for over six weeks and finally begged enough to get an MRI on hip and pelvic, results referred me to Mayo. Went to ER early Sat morning and had devastating news that my high grade, highly aggressive and invasive bladder cancer was not contained or stage 1, it has metastasized and I now have bone cancer, thanks to medical negligence in Michigan, where care lacked and symptoms ignored for 5.5 months. The cancer is in my hips, pelvis and legs with multiple fractures in hips and pelvis and deteriorated tibia. The speed and care in the ER was phenomenal and had answers to my pain and loss of mobility in a little over an hr. Under the advise of ER doctors, with Steph and ER doctors advocating for me to get in asap, we stayed in Rochester across from hospital in hopes of getting seen by oncology tomorrow, Monday 2/12. We will call at 8am sharp, praying for care and healing.

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! 🙏🙏🙏🙏

Colleen I made the 11.5 hr trip yesterday after talking to Steph in oncology. I have been in excuriating and debilitating pain for over six weeks and finally begged enough to get an MRI on hip and pelvic, results referred me to Mayo. Went to ER early Sat morning and had devastating news that my high grade, highly aggressive and invasive bladder cancer was not contained or stage 1, it has metastasized and I now have bone cancer, thanks to medical negligence in Michigan, where care lacked and symptoms ignored for 5.5 months. The cancer is in my hips, pelvis and legs with multiple fractures in hips and pelvis and deteriorated tibia. The speed and care in the ER was phenomenal and had answers to my pain and loss of mobility in a little over an hr. Under the advise of ER doctors, with Steph and ER doctors advocating for me to get in asap, we stayed in Rochester across from hospital in hopes of getting seen by oncology tomorrow, Monday 2/12. We will call at 8am sharp, praying for care and healing.

My prayers are with you brother I am in gray area am having bad hip pain had clear cystoscope and PSA 2.9

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! 🙏🙏🙏🙏

My Husband is 81 and in good health othere than now being diagnosed with non invasive bladder cancer having 2 TURB surgeries. He is scheduled to have his bladder removed in a couple of weeks, plus his prostate and lumph nodes. Any tips for him?

Has your husband had his cystectomy? My hubby had this with neobladder formation in 2021. It is a tough surgery. Do you have an update for us?