My husband has high grade highly invasive urothelial cell carcinoma, and had a partial bladder resection a year ago last September. THe mass was in a pouch off the bladder...diverticulum....so that was removed. He had one positive lymph node so he had cisplatin and gemzar chemotherapy and then started on BCG. He had a TURP last week to check on a spot they have been watching on cystoscopy and it is a recurrence. Have not spoken with the surgeon yet about next steps. At least this one was not invasive into bladder wall like the first one. Mayo Rochester has provided good care, but we have found working with the urology department is not as easy as working with ENT and Oncology, as I have for the past 8 years.
My husband has high grade highly invasive urothelial cell carcinoma, and had a partial bladder resection a year ago last September. THe mass was in a pouch off the bladder...diverticulum....so that was removed. He had one positive lymph node so he had cisplatin and gemzar chemotherapy and then started on BCG. He had a TURP last week to check on a spot they have been watching on cystoscopy and it is a recurrence. Have not spoken with the surgeon yet about next steps. At least this one was not invasive into bladder wall like the first one. Mayo Rochester has provided good care, but we have found working with the urology department is not as easy as working with ENT and Oncology, as I have for the past 8 years.
@sepdvm Sue, I agree with @miriam57. I encourage you to contact the Office of Patient Experience. They are there to help and would appreciate hearing compliments about the care you received with ENT and Oncology, and how things could be learned and improved with the Urology department. Here's how to contact them https://www.mayoclinic.org/about-mayo-clinic/patient-experience
@texascitylady, good news on you and your husband's 3-month follow-up. I know its such a relief. How are you both doing?
We have done that, That was last year when we spoke with a lovely lady who was very positive and helpful. We have found that it may have helped somewhat. Thank you for the suggestion. It was originally suggested by our CNP in urology. We still have a 2 week wait to video visit with the surgeon about further treatment/surgery as the resident did not have many answers when he gave us the bad news about recurrence this week. We would love to connect with anyone who has gone through a radical cystectomy. This seems like the place to gain down to earth information. And I have a huge appreciation for my medical oncologist who called me personally last evening to see how I was doing with the new immunotherapy infusion for my metastatic squamous cell carcinoma. She is absolutely the best!
We have done that, That was last year when we spoke with a lovely lady who was very positive and helpful. We have found that it may have helped somewhat. Thank you for the suggestion. It was originally suggested by our CNP in urology. We still have a 2 week wait to video visit with the surgeon about further treatment/surgery as the resident did not have many answers when he gave us the bad news about recurrence this week. We would love to connect with anyone who has gone through a radical cystectomy. This seems like the place to gain down to earth information. And I have a huge appreciation for my medical oncologist who called me personally last evening to see how I was doing with the new immunotherapy infusion for my metastatic squamous cell carcinoma. She is absolutely the best!
@sepdvm, I'm glad it has helped your and your husband's situation somewhat. I'm also confident that it will help improve the patient experience in urology for others. Thank you.
I'm sorry to hear of your husband's recurrence and that you have to wait 2 weeks to discuss the treatment plan. Do you know if surgery is the only option on the table at this point or is that what you are waiting to learn?
My husband, Bruce, decided to get tested to see if he can be accepted into the trial. Mayo is only accepting 4 people so after tests on the 10th we will find out in a few weeks. Of the 4 chosen only 2 will get the drug. Everyone will get bcg but only 2 will get bcg and the drug . The side effects can be bad as this will rev up his immune system and can cause the body to attack organs. So there is a risk to doing this but without it there is no cure.
I have great friends that are very supportive but this is scary and sometimes I just go hide in a room and cry.
I wish doctors would run urine tests as a preventative test as maybe bladder cancer could be caught early. They run tests for prostate cancer but no one mentions bladder cancer.
Do feel good that Bruces doctor at Mayo is looking at all options and he is a surgeon. Bladder removal is our last option as Bruce has a horse shoe kidney and I have heard and doctor confirmed that after bladder removal it can come back in kidney so that is not a cure. Thanks for reaching out. We are all learning together
Have you checked for a NCI hospital in KY ? They treat so many types of cancer.
There's one in Columbus Ohio which isn't too terribly far from Louisville.
So sorry to hear about your diagnosis. What were your symptoms before you were diagnosed. Was there a history of UTI's?
My prayers go out to you. Keep us posted.
Saying prayers for you.
Take care.
🙏
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Share info with patient services, they are there to help and they will
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1 ReactionJust had my 3 month follow-up & Dr said he saw no signs of re-growth & no need for biopsy at this time. Re-scope in 3 months
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1 Reaction@sepdvm Sue, I agree with @miriam57. I encourage you to contact the Office of Patient Experience. They are there to help and would appreciate hearing compliments about the care you received with ENT and Oncology, and how things could be learned and improved with the Urology department. Here's how to contact them https://www.mayoclinic.org/about-mayo-clinic/patient-experience
@texascitylady, good news on you and your husband's 3-month follow-up. I know its such a relief. How are you both doing?
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1 ReactionColleen, a huge weight has been lifted from our shoulders & we are trying to live one day at a time, giving thanks to God for his blessings
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4 ReactionsWe have done that, That was last year when we spoke with a lovely lady who was very positive and helpful. We have found that it may have helped somewhat. Thank you for the suggestion. It was originally suggested by our CNP in urology. We still have a 2 week wait to video visit with the surgeon about further treatment/surgery as the resident did not have many answers when he gave us the bad news about recurrence this week. We would love to connect with anyone who has gone through a radical cystectomy. This seems like the place to gain down to earth information. And I have a huge appreciation for my medical oncologist who called me personally last evening to see how I was doing with the new immunotherapy infusion for my metastatic squamous cell carcinoma. She is absolutely the best!
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1 Reaction@sepdvm, I'm glad it has helped your and your husband's situation somewhat. I'm also confident that it will help improve the patient experience in urology for others. Thank you.
Sue, members like @spooz2 @madebacco @lclancy @tattrigoo and @mayobruce may have experiences about a radical cystectomy to share. Also see these related discussions:
- Bladder Cancer https://connect.mayoclinic.org/discussion/bladder-cancer-7/
- Bladder Cancer: Stage 2 high grade https://connect.mayoclinic.org/discussion/bladder-cancer-5/
- Bladder Cancer/Small cell bladder cancer https://connect.mayoclinic.org/discussion/small-cell-bladder-cancer/
I'm sorry to hear of your husband's recurrence and that you have to wait 2 weeks to discuss the treatment plan. Do you know if surgery is the only option on the table at this point or is that what you are waiting to learn?
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1 ReactionMy son has this and we just found out. He lives in Thailand and he’s o stubborn he probably won’t see a doctor. I’m so scared for him.
Have you checked for a NCI hospital in KY ? They treat so many types of cancer.
There's one in Columbus Ohio which isn't too terribly far from Louisville.
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1 ReactionSo sorry to hear about your diagnosis. What were your symptoms before you were diagnosed. Was there a history of UTI's?
My prayers go out to you. Keep us posted.
Saying prayers for you.
Take care.
🙏
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