The Colon Club

Hello all! I haven’t been here in a while but I remembered how amazing you all were and what a great place this is for information and support. So my brother has a history of colorectal
Cancer. He’s now 40 years old. Forgive me if my timeline is off or if this is a little all over the place but he was diagnosed about 4 years ago and had radiation then chemo then surgery and now has a permanent colostomy. He was doing well and had some clear scans but recently (April 2020) noticed blood in urine. He had a cystoscopy where a mass was found and a TURBT for removal of the mass. Results showed the mass was removed but looks like it has Bladder muscle involvement. His urologist only had his nurse call him to tell him and didn’t give Any other info but to just follow up in a week for treatment options. He has called his oncologist and urologist for further info but just reaching out for anyone in similar situations to hear their story or any recommendations? Any feedback is greatly appreciated. Thanks so much!
- Jill

I am so sorry for what your brother is going thru. I though I had bladder cancer last fall. I too started to pass blood in my urine. I also saw it on my underwear after power walking. That is what got my attention. PCP confirmed blood in urine, sent me off to a urologist. At the end, bladder is fine, there is a spot on left kidney they are watching. Took samples in January of this spot, no cancer found. As of this past July, urine is "pristine", per urologist (ie, no more blood in urine). Will do another CAT scan December/January 2020/2021. If this spot is growing, I will probably have it removed.

It's frustrating to have to wait so long to get results. I remember a time when doctors called or follow up visits with in days of testing. I had a CAT scan last fall regarding this issue, had to wait 2 weeks to get results. I called office after one week to get info. Was told doctor would talk to me in next follow up visit, they can not give info over the phone. The wait is the hardest.

Good luck,

Lee

Thanks for the reply. You’re right. The waiting is the worst part. I just wish the urologist would have called him in the first place to discuss the results. Not crazy about this urologist so far but apparently he’s one of the top ones around. Ahh we will see. My brother just got married in sept and I was really hoping all this cancer stuff would stay behind him and he could start his family anyway thanks again! Sending prayers and positive vibes to all those on this tough journey.

Anyone else with any bladder experience or advice?

That seems to be an uncommon site for mets, compared with more common areas such as liver or lungs. We faced the same paucity of information when DH had a met to his adrenal gland. Maybe once you get more information, you could post something here, so others down the line may benefit from your experience?
I hope your brother gets good news regarding treatment, and that the bladder involvement can be contained/removed soon!

JLD13 wrote: . . . he was diagnosed about 4 years ago and had radiation then chemo then surgery and now has a permanent colostomy. . . .
- Jill

Claudine,

Radiations puts you at a higher risk for developing bladder cancer down the road. He doesn't have a met, butt rather a new cancer. Bladder cancer due to radiation damage.

When I met my Urologist, one of his 1st questions, "so what makes you think you have bladder cancer?'. When I gave him my history he responded, okay we do not ignore this.

Lee

Ha, my mistake, I saw the title (mets to bladder) and assumed it was from CRC.
When my husband had SBRT for his spinal met, they did warn us about a small possibility to develop leukemia...

Claudine wrote:When my husband had SBRT for his spinal met, they did warn us about a small possibility to develop leukemia...

The expression is "you hope you live long enough to experience that 2nd cancer". When I thought I did have bladder cancer, I thought of all of those people who did not make it, butt would have given there eye teeth to be in my shoes last fall.

Lee

They are calling it a Mets to bladder. The biopsy report came back saying it’s from the colon. I’ve heard that’s an uncommon site to have a mets to. Tomorrow is the appt with the urologist so we’ll see what he has to say. I know he’s really hoping he just doesn’t need his whole bladder removed but it’s in the muscle so not sure if they’ll say it bc of that.

Please let us know, that would be a 1st. I just assumed in was radiation damage. He could end up with a 2nd bag for his bladder, many people live this way and live a life. Give me a bit of time, there is a site you might want to consider/look at with information from people like us here. UOAA, United Ostomy Association of America. They have people who have one and/or both bags.

Lee

Did you learn anything with the Urologist visit today?

Here is that other site I mentioned yesterday.

https://www.uoaa.org/forum/index.php

Hope it helps,

Lee

Sorry I haven’t been on in a little while. So first the plan was just to do a cystoscopy and remove what they saw and follow up every 2 months with scans/ further cystoscopies but unfortunately he had scans done 6 weeks after the cystoscopy and it looks like it’s growing again in the same spot. Since it grew in such a short amount of time now they’re talking surgery. A pelvic exoneration actually. He already had his rectum removed so now just his bladder and prostate. Also talks of chemo. Either before or after surgery or possibly both. Another option is chemo and radiation but they think the better chance of curing it is the surgery. So now time to decide and don’t want to wait to long obviously. I just feel so bad for him. Thanks for checking in and thanks for the site info I’m going to check that out now!