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Bladder Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, May 17, 2024

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.

jojo2059 | @jojo2059 | 3 days ago
In reply to @jowilliams1 "Yes, I have a port. I was glad to have it for chemo as it made..." + (show)
@jowilliams1

Yes, I have a port. I was glad to have it for chemo as it made things easier on me.

Chemo was difficult. The farther along, the harder it got. Nausea and overall fatigue were my biggest issues. So glad to have that behind me. I had surgery in Nov and now have a neobladder.

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Hi Jo, how was the surgery and how do you like the neobladder? The oncologist at the beginning denied the port. And the new oncologist also denied the port??? Anyway my brother is very hard to come back for treatment b/c of the awful time he had with the nurse putting in the IV. It rang on the monitor for about 1 hour. It bubbled right away and I alerted the nurse and she ignored for an hour. Finally I had to get another nurse to put a new one in. Well she searched all over his poor forearms making this treatment unbearable. We are trying to get the doctor to order & schedule the port asap. How soon did you start treatment after your port was put in? Thank you so much. Jo

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1 reply
jojo2059 | @jojo2059 | 2 days ago
In reply to @sepdvm "Welcome to Connect @jojo2059 . It has to be heart wrenching to see your brother going..." + (show)
@sepdvm

Welcome to Connect @jojo2059 . It has to be heart wrenching to see your brother going through so many health issues. My husband had high grade bladder cancer diagnosed 5 years ago. He has had multiple surgeries and did have chemo with Cisplatin after the first surgery. He was recommended to have a port and that worked well for him. It was removed around a year after treatment. Your brother needs help in making the decisions about treatment, but ultimately it is his decision unless he is declared mentally incompetent. Has he had neurologic testing for his potential dementia?

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Hi Sue, yes he did have an MRI at an outside company. We have not seen the results yet. His new oncologist referred him back to neurology. He is having a hard time with incontinence. Having to wear pads & diapers. Administering the chemo is a huge problem to get him to finish his treatments. How long did your hubby have his port before treatment started? Thank you for your support.

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jowilliams1 | @jowilliams1 | 2 days ago
In reply to @jojo2059 "Hi Jo, how was the surgery and how do you like the neobladder? The oncologist at..." + (show)
@jojo2059

Hi Jo, how was the surgery and how do you like the neobladder? The oncologist at the beginning denied the port. And the new oncologist also denied the port??? Anyway my brother is very hard to come back for treatment b/c of the awful time he had with the nurse putting in the IV. It rang on the monitor for about 1 hour. It bubbled right away and I alerted the nurse and she ignored for an hour. Finally I had to get another nurse to put a new one in. Well she searched all over his poor forearms making this treatment unbearable. We are trying to get the doctor to order & schedule the port asap. How soon did you start treatment after your port was put in? Thank you so much. Jo

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Oh no! I'm sorry to hear he had to go through that. The experience is stressful enough without all of that. I wonder if there's another medical condition he has that prevents getting the port for him. I had the port put in one week and started chemo the very next.

The neobladder surgery was very tough, especially the first four weeks after. You have to be in good health otherwise to do the neobladder (I'm 55 yo) and picking an experienced surgeon is key. I'm very happy I did it. I've been blessed with the results so far.

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scott232 | @scott232 | 2 days ago

Hi. I had 9 inductions of BCG this past yr. Cysto found 2 tumors small My cancer is nimbis High grade. 3rd Turbt scheduled for next week. Im then scheduled for Gen/Dox sometime after Turbt. Has anyone used any other chemo treatment besides Gembiticde/Dox. Thanks

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nolaughingmatter | @nolaughingmatter | 1 day ago

Hello, I am a 74 year old female who was recently diagnosed with bladder cancer. It appears I have a very large tumor that is suspicious of urothelial cancer. I will be getting a biopsy soon to confirm this but was suspected in the mri with contrast and cystoscopy. I am very nervous about all this. I would like to hear from others who have been diagnosed with same. Thank you.

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1 reply
hmmm | @hmmm | 1 day ago
In reply to @delavan "Good luck. It’s a relatively short procedure. It may take an additional day or two to..." + (show)
@delavan

Good luck. It’s a relatively short procedure. It may take an additional day or two to receive the surgical pathology report. That, in large part, drives treatment decisions. I received my surgical pathology report today with results from the TURBT that I underwent last Friday. I will undergo chemotherapy after the wounds are healed. At least my doctor now has a game plan. Hope to hear how things go for you. I am a person of faith. I will say a prayer for you. Best.

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I waited 3 weeks for my pathology results, even though they were sent with a rush on them. Apparently the rush was not put on the vials so they were not rushed 🙄 the worst part is the waiting. I had 3 of the 4 tumors removed on December 20th but no appointment with the urologist until January 22nd. I am aware I will more than likely be having a radical cystectomy as the 1 tumor remaining is still 5cm into my bladder wall which is aggressive high-grade. So why all the waiting, while it hasn't spread further? Just so frustrated.

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2 replies
delavan | @delavan | 1 day ago
In reply to @hmmm "I waited 3 weeks for my pathology results, even though they were sent with a rush..." + (show)
@hmmm

I waited 3 weeks for my pathology results, even though they were sent with a rush on them. Apparently the rush was not put on the vials so they were not rushed 🙄 the worst part is the waiting. I had 3 of the 4 tumors removed on December 20th but no appointment with the urologist until January 22nd. I am aware I will more than likely be having a radical cystectomy as the 1 tumor remaining is still 5cm into my bladder wall which is aggressive high-grade. So why all the waiting, while it hasn't spread further? Just so frustrated.

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I hope your care team can come up with a plan that provides you with hope. I agree that it is the uncertainty of not knowing that is so difficult to experience. Best wishes to you.

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hmmm | @hmmm | 1 day ago

I hope I get a team care. You would assume that alot should be ready for me to start as it will be just over a month and he already knows my bladder needs to be removed. He hasn't even completed paperwork for me to give manulife so my short term disability doesn't end next Friday. And I am told not to stress 🥺🙄 Thank you

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jowilliams1 | @jowilliams1 | 23 hours ago
In reply to @hmmm "I waited 3 weeks for my pathology results, even though they were sent with a rush..." + (show)
@hmmm

I waited 3 weeks for my pathology results, even though they were sent with a rush on them. Apparently the rush was not put on the vials so they were not rushed 🙄 the worst part is the waiting. I had 3 of the 4 tumors removed on December 20th but no appointment with the urologist until January 22nd. I am aware I will more than likely be having a radical cystectomy as the 1 tumor remaining is still 5cm into my bladder wall which is aggressive high-grade. So why all the waiting, while it hasn't spread further? Just so frustrated.

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Are they planning a radical cystectomy immediately or will you have chemo before bladder removal? I had three months of chemo, a month wait to help my body recover from it a bit and then bladder removal. I also had a muscle invasive tumor that was 5 cm. (My only tumor)

If you aren't happy with any of your doctors remember there are many more out there. Don't be afraid to switch. You'll know when you've found the right ones and that can help give peace of mind. Prayers for you.

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1 reply
hmmm | @hmmm | 17 hours ago
In reply to @jowilliams1 "Are they planning a radical cystectomy immediately or will you have chemo before bladder removal? I..." + (show)
@jowilliams1

Are they planning a radical cystectomy immediately or will you have chemo before bladder removal? I had three months of chemo, a month wait to help my body recover from it a bit and then bladder removal. I also had a muscle invasive tumor that was 5 cm. (My only tumor)

If you aren't happy with any of your doctors remember there are many more out there. Don't be afraid to switch. You'll know when you've found the right ones and that can help give peace of mind. Prayers for you.

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I haven't seen the urologist yet so sadly I have no idea what the plans are. I just know that my bladder needs to be removed from researching it myself. Then I read some people have chemo before but some just have it removed and have it after or immunotherapy. I hopefully will know a plan when I finally see the urologist on Wednesday. Depending on that meeting I will know if I need to look for someone else. I am expecting him to have a plan and dates ready to start as he has had a month now to do that. Thank you

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