Bladder Cancer Group: Introduce yourself and connect with others

Welcome to the Bladder Cancer support group on Mayo Clinic Connect.

This is a welcoming, safe place where you can meet people living with bladder cancer or caring for someone with bladder cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

Feel free to browse the topics, use the group search to find answers to your questions or start a new discussion.

Pull up a chair. Let’s start with introductions.

What type of bladder cancer were you diagnosed with? What treatments have you had? How are you doing?

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

@bostonbruins

Hi from Canada. I was just told I have bladder cancer. I'm 63 and was shocked too. I don't smoke and very reality drink. Shock to me and my family. My road begins to make it disappeared and live my life longer.

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@bostonbruins, getting a cancer diagnosis is such a shock. Thank goodness it was found incidentally. Do you have more details about your bladder cancer type and stage? Has a treatment plan been discussed yet?

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@talltxlady

Hi there, my name is Melissa, I'm 55 yo. Was diagnosed with NMIBC of the aggressive type in 11/21. I've taken about 27 rounds of immunotherapy (BCG). The last BCG was in March. My cystoscopies remain negative. At the beginning I did have one that was suspicious and had to undergo another surgery in 2022 for it, but they have all stayed negative thank God. I go back in September to MD Anderson for another cystoscopy and my doctor said we would decide at that time if I will need any more BCG or not.
I do have a host of other problems as well. I have 3 autoimmune diseases (Hashimotos, Reynaud's and Sjogrens syndrome), plantar and palmer fibromatosis, severe back degeneration with scoliosis, DDD and more (can't remember it all!)
I am happy to be here and feel blessed this aggressive bladder cancer has not showed it's ugly head again. Stay strong y'all! We are strong people :)) 🙏

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Hi: My name is Phyllis and I just have a few questions.
I had a UTI about a month ago and the dr. sent me to get my urine checked. Unfortionately they forgot to call me with the results until last week. They said there was blood in my urine and The dr. referred me to a urologist. My question is: Does that mean that they suspect bladder cancer?
I do have symptoms of bladder cancer but they could not get me an appointment until January 16th 2025. I have read a lot about this and I decided to at least do an alternative treatment until I can see the doctor.
I'm doing the lemon juice and baking soda with 8 oz. water and also rubbing frankensence oil on my tummy. At least I don't think these alternatives should hurt since I have to wait so long to get to see the doctor. Has anybody that you know done one of these alternative treatments and it helped?

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@deb2024

Catherine,
I’m also on the gem/doc treatment & entering 2nd year of monthly treatments. BCG didn’t work for me. So far the cancer hasn’t returned. I have some side effects but are manageable. As someone else stated you are your best advocate. I hope it goes well for your husband.

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Hi Deb
Went to sloan today had cystoscopy
My husband said the dr said he saw things and he needs to come back for a procedure. No explanation of what procedure is.
Waiting for appt.
No treatment yet again. I am at my wits end. This is @ sloan K in jersey.
I am getting frustrated. All they keep doing is finding cancer and taking it out but no treatments
I dont know where to turn. .

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@george36

Hi: My name is Phyllis and I just have a few questions.
I had a UTI about a month ago and the dr. sent me to get my urine checked. Unfortionately they forgot to call me with the results until last week. They said there was blood in my urine and The dr. referred me to a urologist. My question is: Does that mean that they suspect bladder cancer?
I do have symptoms of bladder cancer but they could not get me an appointment until January 16th 2025. I have read a lot about this and I decided to at least do an alternative treatment until I can see the doctor.
I'm doing the lemon juice and baking soda with 8 oz. water and also rubbing frankensence oil on my tummy. At least I don't think these alternatives should hurt since I have to wait so long to get to see the doctor. Has anybody that you know done one of these alternative treatments and it helped?

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Hi Phyllis, I'm unsure as to what they might suspect. It's hard to say. For me, that's what happened to me. Blood in urine. PCP ruled out a UTI, and I was sent to a urologist. It took quite some between the time the blood in my urine showed up, waiting for what seemed like an eternity for an appointment with the urologist ( about a 4 to 6 week wait for new patient), actually seeing the Urologist and then surgery (cancer removal, then resection).
I have never tried any of the home remedies you mentioned. I personally relied on my Faith. That was all I had, as I had no real answers for what seemed like forever.
Best to you 😊

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@ljashton

Please ask about gem/doc combination treatment. It has been very effective for my husband.
I would imagine if cancer is observed in December, they will do another TURBT. You SHOULD start treatment no more than a month after that. I looked up Sloan K and the website states that the combo therapy is something that is offered.
My husband started off
with two rounds (12) of BCG which didn’t work for him, but the chemo did.
The doctor will give you choices and one does need to advocate for self.
Hope all goes well.

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3 more tumors need to be removed. Waiting on appt for 2nd turbt surgery.
Hopefully treatments will start shortly after.🤞

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Hi. My name is Steve. I was diagnosed with high-grade papillary urothelial cell carcinoma back in September this year. I’ve had two TURBT resections since then. The first one I also received Gemcitabine. I’m getting ready to start a clinical trial the end of this month. I’ll either be receiving BCG immunotherapy or Gemcitibine/Docetraxel chemotherapy. I’m still trying to process everything. I’m anxious to get things started but a bit overwhelmed with what’s ahead. I’m hoping to find answers to questions and support on the site. Thanks!

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Hi to all brave warriors here,

My name is Josephine Bommarito and my very close brother 75 named Philip was diagnosed with Locally Advanced Bladder Cancer Stage 3 with travel to Lymph nodes in November 2024. He is not a healthy person, high blood pressure, heart rate, high glucose, blocked right kidney and now Bladder Cancer. He also has confusion, can’t think correctly. We don’t know if it is caused by the kidney function or Dementia. He is supposed to start chemo tomorrow, (Cisplatin & Gemzar) 2 weeks on 1 week off. 6 hours a session. However, he is not ready and not committed. He also had a bad fall at work in September, blow to the back of his head. My question here is did you all have a port, IV or picc line to receive treatment?

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Im a 66 year old male. I have been treated with bcg for bladder cancer for a couple years now. Recently it has progressed into the bladder muscle. My urologist is suggesting I'll need chemo and bladder removal. This is all very frightening and I'm interested in how others are dealing with their bladder cancer.

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Hi @jojo2059, I'm very sorry for all your brother is going through. God Bless You All and praise God that he has you there by his side.
To answer your question, I didn't have those treatments. My treatment method was BCG, but as far as I know they're done the same way. The Nurse Practitioner administers a catheter through the urethra and into the bladder. The treatment goes straight into the bladder, which lets us avoid a lot of nasty side effects such as hair loss, and severe weight loss. Maybe someone else who has had both of those particular medicines administered and confirm the administration method. Stay strong and best wishes.

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@jojo2059

Hi to all brave warriors here,

My name is Josephine Bommarito and my very close brother 75 named Philip was diagnosed with Locally Advanced Bladder Cancer Stage 3 with travel to Lymph nodes in November 2024. He is not a healthy person, high blood pressure, heart rate, high glucose, blocked right kidney and now Bladder Cancer. He also has confusion, can’t think correctly. We don’t know if it is caused by the kidney function or Dementia. He is supposed to start chemo tomorrow, (Cisplatin & Gemzar) 2 weeks on 1 week off. 6 hours a session. However, he is not ready and not committed. He also had a bad fall at work in September, blow to the back of his head. My question here is did you all have a port, IV or picc line to receive treatment?

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Hi Josephine. I had chemo (just as you described...same meds and schedule) this past summer. I had/still have a port and can't imagine doing the treatments without it. It makes things much easier on the patient in my opinion. They can do the chemo and bloodwork taken from the port and it saves your veins from all of those painful sticks. I'm glad I had one put in.

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