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.

I was diagnosed with bladder cancer about 4 years ago and tried to beat it with multiple Turbt, chemo and BCG but couldn't get rid of it. Never had muscle involvement but decided I needed to have the bladder removed. I was under the care of Mayo and I decided I wanted a neo bladder procedure. Best decision I ever made. Two years post surgery and everything is good.
Anyone thinking about a neo bladder, please reach out.

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@crtrucker

just diagnost with invasive bladder cancer in the muscles of the bladder really worried thanks

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Hi @crtrucker, sounds like and @scott232 may both be on a similar timeline with a very recent diagnosis.

Crtucker, I can imagine you're worried. This is all so new. Have you learned more about the grade and stage of your cancer? Have you discussed the treatment plan yet with your cancer doctors? How are you doing?

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You've been in my thoughts since you posted. Any updates on treatment options?

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Muscle invasive...have upcoming appointments with surgeon and radiologist

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i dont know what kind but both times the doctor took what ever it was out, the second time after he gave some sort of kemo. so now its every six months i get checked for bladder and also prostrate cancer. the prostrate was removed in 2017 same tume as first bladder cancer

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Hello everyone. I’m new to this group. My name is David, I’m 64 and had a bladder tumor removed last August. Just got the camera inserted and doctor said there’s 3 tiny ones he wants to remove next month. I’m trying to figure out a way to stop the reoccurrence. Hope that’s possible. He said they are like weeds that just keep popping up. I quit sugar and carbs 100% and that has helped tremendously .

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Hola, mi nombre es Sonia, tengo 61 años y fui diagnosticada en octubre 2023 con CARCINOMA NEUROENDÓCRINO DE CÉLULAS PEQUEÑAS en la vejiga 5 días posteriores a la aparición de los primeros síntomas de sangrado (me practicaron ultrasonido , uroTAC y preoperatorios) me realizaron RTU de vejiga. Cáncer sumamente agresivo e invasivo con índices de proliferación muy elevados; me programaron de inmediato para cistectomía radical, después de múltiples valoraciones durante el mes de enero; cirugía que me fue practicada en febrero de este año en el Hospital de Alta Especialidad de Oncología Siglo XXI en Ciudad de México; mi cirugía fue muy exitosa (9 horas en quirófano) y he tenido una recuperación asombrosa, me retiraron múltiples órganos (Cistectomía Radical laparoscópica, e Histerec total con Salpingooforectomía Bilateral, Linfadenectomía Pélvica Bilateral, Apendicectomía + Conducto Ileal) estuve hospitalizado 7 días y salí caminando a casa, guardando el reposo debido y aprendiendo a vivir con una urostomía. A los 2 meses de la cirugía, en abril, me valoró nuevamente el equipo de oncología y me practiqué una prueba de funcionamiento renal, encontrando todo correcto, estoy citada nuevamente en el mes de agosto (6 meses posteriores a la cirugía) para un nuevo TAC. Todo ha sido muy favorable para mi, aún con un cáncer de los más extraños e invasivos; LA DETECCIÓN OPORTUNA EN ETAPA INICIAL ME SALVÓ DE RECIBIR RADIOTERAPIA, QUIMIOTERAPIA e incluso de tomar medicamentos. Mí acompañamiento solidario a todos aquellos pacientes que atraviesan cualquier tipo de Cáncer deseando su pronta recuperación y para aquellos que tengan síntomas inusuales, atiéndanse de inmediato, pues puede haber un pronóstico un poco más alentador.

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Hi, been a bystander in the group for a little bit. It took me a while to come around to the reality that I have cancer...HGT1 to be exact. I am 63 and was diagnosed with bladder cancer during first TURBT in early March this year. Had a second TURBT in mid April and determined there is no muscle wall involvement. I just completed my 4th weekly BCG treatment of 6. I'm trying to be ok about all this but it's a work in progress.

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@steenrl

I was diagnosed with bladder cancer about 4 years ago and tried to beat it with multiple Turbt, chemo and BCG but couldn't get rid of it. Never had muscle involvement but decided I needed to have the bladder removed. I was under the care of Mayo and I decided I wanted a neo bladder procedure. Best decision I ever made. Two years post surgery and everything is good.
Anyone thinking about a neo bladder, please reach out.

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I’m glad you are doing well.

Kind of an off the wall question but thought I would throw it out there to see if anyone could answer.

Does Medicare cover the cost of a Neobladder procedure ?

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@steenrl

I was diagnosed with bladder cancer about 4 years ago and tried to beat it with multiple Turbt, chemo and BCG but couldn't get rid of it. Never had muscle involvement but decided I needed to have the bladder removed. I was under the care of Mayo and I decided I wanted a neo bladder procedure. Best decision I ever made. Two years post surgery and everything is good.
Anyone thinking about a neo bladder, please reach out.

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@steenrl, Hi Robert and welcome. Good to hear about the success of your neobladder. I wonder if you might wish to share more about your experience, what to expect and what you wished you had known in this related discussion:

- Experiences with neobladder surgery for bladder cancer
https://connect.mayoclinic.org/discussion/bladder-cancer-and-neobladder-surgery/

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