1. < Bladder Cancer
Moderator

Bladder Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, May 17 3:57pm

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 21 8:53am
In reply to @soniamargarita "Hola, mi nombre es Sonia, tengo 61 años y fui diagnosticada en octubre 2023 con CARCINOMA..." + (show)
@soniamargarita

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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@soniamargarita, it so good to hear positive stories. Thank goodness you did not delay in seeking medical attention when you saw signs of blood in your urine. Early detection is not always possible with bladder cancer. I'm glad to hear your story.

I wish you all the best for the upcoming follow-up appointment in August and look forward to hearing your update.

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schew5515 | @schew5515 | Jun 22 11:36am
In reply to @steenrl "I was diagnosed with bladder cancer about 4 years ago and tried to beat it with..." + (show)
@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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We will meet with Dr to discuss treatment. Slightly worried the Dr mentioned the reading was unusual. Not sure how to take this. He did say it is not invasive but originally first Dr not at Mayo said it was low grade. Now Mayo said it is high grade.

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1 reply
schew5515 | @schew5515 | Jun 22 11:45am
In reply to @shester "Hi, been a bystander in the group for a little bit. It took me a while..." + (show)
@shester

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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My husband journey with started April 12th. We were with one Dr who was so rude and direspectful after initially hearing this. Glad we got into Mayo June 7th had second turbt.
Yesterday we learned it is not low grade as previous thought but high grade. My husband appetite has plummeted he seems more tired we have not even started treatment. I'm worried.

They also said he results where unusual not sure what to think of this. Not in the muscle but present. We will have an appointment soon. The initial stage was T1. Now I'm not sure.

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Robert Steen | @steenrl | Jun 22 1:25pm
In reply to @schew5515 "We will meet with Dr to discuss treatment. Slightly worried the Dr mentioned the reading was..." + (show)
@schew5515

We will meet with Dr to discuss treatment. Slightly worried the Dr mentioned the reading was unusual. Not sure how to take this. He did say it is not invasive but originally first Dr not at Mayo said it was low grade. Now Mayo said it is high grade.

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I'm thinking that grading tumors is a little subjective and these change with time. Perhaps the first reading of low was on the cusp of something higher and between then and the most recent reading it transitioned higher. From what I understood, it was whether or not the tumor had penetrated the muscle that was most important.
I wish your husband all the best going forward but losing the bladder is not the end of the world as I can testify. Mayo will do the best for him and if it comes to it; I would encourage he consider a neobladder procedure. Mayo is on the leading edge.

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dldinsd | @dldinsd | Jun 22 4:01pm
In reply to @shester "I completely understand being overwhelmed with the news. No one in my family has ever had..." + (show)
@shester

I completely understand being overwhelmed with the news. No one in my family has ever had bladder cancer either.
I did not seek a second opinion, first because I just went with what was suggested because I was scared and second because from everything I read my urologist was offering the recommended treatment.
I've had 2 TURBT procedures and today I will have my 5th BCG treatment at my urologists office. I cannot say enough good things about the care I've received and I trust I am in good hands.
Ask questions, like I didn't LOL. Will you have a 2nd TURBT before BCG?

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I will not be having a 2nd TURBT. I start BCG on July 9th. This forum has been very helpful. @shester - are you doing all your procedures locally or are you at a Mayo facility? Wondering if local doctors recommend Mayo or you just proceed on your own. Thanks for your reply. Every one helps.

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1 reply
Mentor
Sue, Volunteer Mentor | @sepdvm | Jun 23 11:35am
In reply to @crtrucker "just diagnost with invasive bladder cancer in the muscles of the bladder really worried thanks" + (show)
@crtrucker

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

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Hello crtrucker. So sorry to hear of your diagnosis. My husband had that diagnosis in 2019. After partial cystectomy, chemotherapy, BCG, and an immunotherapy trial, he chose to have a radical cystectomy with neobladder creation at MAyo Clinic. he is cancer free currently. That is a massive surgery to go through with many potential complications but he is happy that he made that choice. There is more research currently into bladder sparing treatments that you should inquire about. Travel to a major cancer center for a second opinion is always worthwhile. Do you have one nearby? We drive 10 hours for our cancer care at Mayo in Rochester. We feel like we are both alive today because of their care. I have been a patient for 12 years there.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Jun 23 12:27pm
In reply to @jcold5619 "I’m glad you are doing well. Kind of an off the wall question but thought I..." + (show)
@jcold5619

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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Hello @jcold5619
My husband had the neobladder surgery at Mayo Clinic in 2021. It was fully covered by Medicare and our secondary insurance Med Mutual at that time. Most of the coverage was Medicare. He has had several complications from immediately after surgery until last spring, but is still glad that he chose this surgery and does not deal with a stoma. Others have had better luck with their surgery ,but it is still a huge undertaking and a rough week in the hospital postop. Do you have surgery scheduled?

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1 reply
jcold5619 | @jcold5619 | Jun 23 4:44pm
In reply to @sepdvm "Hello @jcold5619 My husband had the neobladder surgery at Mayo Clinic in 2021. It was fully..." + (show)
@sepdvm

Hello @jcold5619
My husband had the neobladder surgery at Mayo Clinic in 2021. It was fully covered by Medicare and our secondary insurance Med Mutual at that time. Most of the coverage was Medicare. He has had several complications from immediately after surgery until last spring, but is still glad that he chose this surgery and does not deal with a stoma. Others have had better luck with their surgery ,but it is still a huge undertaking and a rough week in the hospital postop. Do you have surgery scheduled?

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Thank you very much for taking the time to reply and for the information that you provided.

I do not have any type of surgery currently scheduled. I just had a recent cystoscopy and thankfully there was no regrowth or new cancer found.

Unsure what lies ahead but I’m just trying to educate myself.

Good luck to both you and your husband. You sound like you have a wonderful attitude.

Jim

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shester | @shester | 6 days ago
In reply to @dldinsd "I will not be having a 2nd TURBT. I start BCG on July 9th. This forum..." + (show)
@dldinsd

I will not be having a 2nd TURBT. I start BCG on July 9th. This forum has been very helpful. @shester - are you doing all your procedures locally or are you at a Mayo facility? Wondering if local doctors recommend Mayo or you just proceed on your own. Thanks for your reply. Every one helps.

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Hello, all my procedures have been completed locally. I only discovered this forum while searching for information about BCG treatments.
I wish you well with your upcoming treatments. I'll tell you what the nurse told me during my initial treatment, she said, "This is not going to be like anything you have been imagining. It will be much easier!" And she was 100% correct.

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