Anyone with colon cancer metastasis to ureter and/or bladder?

Welcome @suzyq2009. I'd like to bring @jim8086 who has experience with cancer in the ureter. His is primary cancer of the ureter, not metastasis however.

You might also appreciate connecting with other stage 4 colorectal cancer members in this discussion:
- Hi, stage 4 colorectal cancer here https://connect.mayoclinic.org/discussion/hi-stage-4-here/

Suzyq, did you also have to have the bladder removed? How are you doing?

Hello! I am so sorry. I have been exceptionally busy since I entered my question.
I did not have to have my bladder removed yet. We thought there was also a tumor outside the bladder, so I was treated with IV chemo for an entire year, from May, 2021 to May, 2022. It seemed the chemo had taken care of the tumor inside my bladder, but after the year of chemo, I had a PET scan that showed the tumor had grown. That is why my oncologist stopped the IV chemo and put me back on Lonsurf oral chemo, which I had been on in 2019 and 2020.

My oncologist ordered a biopsy of the tumor outside my bladder, and it turned out to be an abscess! I never had a tumor there. So then she wanted to have the inside of my bladder checked again, to verify that I was cancer free. Unfortunately, I did have a polyp which turned out to be malignant. So now, I'm back to Square 1.

We agreed that I would stay on the Lonsurf for 4 months, then do another PET scan. If the tumor has grown or shows no improvement, she recommends that I have my bladder removed. I am a 13-year survivor, now age 66, and have endured a lot of chemo and radiation, as well as had multiple surgeries. Right now, since I came off the IV chemo, I feel the best I've felt in about 3 years.

Thank you for your recommendation to join the discussion with other Stage 4 members. I will do that, now that I have some time to do so.

Suzyq, I so glad that you're feeling better off chemo. As you consider bladder removal, you might appreciate hearing these experiences from @sue225 and @sepdvm

- My husband's radical cystectomy experience https://connect.mayoclinic.org/discussion/my-husbands-radical-cystectomy-experience/
- My husband's experience with neobladder surgery for bladder cancer https://connect.mayoclinic.org/discussion/bladder-cancer-and-neobladder-surgery/

I love that you're busy. I look forward to your updates.

Just a quick update re my husband. Total total recovery. Hard to believe how good he feels. Recent July Catscan gave him the all-clear. Has gained back all the lost weight (maybe too much:). He continues to have no issues with life sans bladder.
To recap, he only always had carcinoma in situ, high grade. Bcg worked initially, then didnt. Gemcitabine no go. Fingers-crossed. The only thing he frets about is his arthritic knee. May it stay like that!

I thought an update about my husband's neobladder with radical cystectomy is due. While he has remained free of bladder cancer, one ureter was completely blocked at the 6 month postop scan. Now he has a nephrostomy tube to drain urine from that kidney until they can repair the ureter. Unfortunately, because of the blockage, he has lost much kidney function on that side. We are waiting to hear when his surgery is scheduled at Mayo Rochester. He also has a large incisional hernia secondary to the initial abscess and drainage through the incision. That will also need surgical repair. The frequency of these complications is rather high with the neobladder surgery, and we were not prepared for this. My advice to @suzyq2009 is to ask lots of questions about the surgery, postop care, and potential complications, no matter which urine collection system you choose with the radical cystectomy. Even at Mayo Clinic, that information was not freely shared with us as we did not ask enough questions. Good luck to you and it is wonderful that you are feeling well and keeping busy.

Thank you for your advice, Sue. I just told my Oncologist 3 days ago that I want to be referred to Mayo Rochester for a second opinion and to schedule surgery there. The surgeon who removed my left kidney and ureter last year only talked with me about removing my bladder. He did not mention neobladder. I learned about that on my own.

I had not begun to think of questions, but after reading your post, I read more about neobladder and several questions occurred to me. Being a primary colon cancer patient with mets through my ureter into my bladder, I now wonder if neobladder surgery would be safe for me since I've had 2 colon resections, the last being in 2006. Do you mind telling me the time lapse/frame of your husband's surgery, complications, subsequent surgery(ies)?

I will follow your advice, and I pray your husband's recovery from this point will go much better with few, if any, complications.

Thank you for sharing your husband's success story! I am glad he has adapted so well to life without his bladder. I hope to share a story of similar success in a few months!

I so appreciate reading these ladies' husband's experiences. I've had many surgeries, but this is the only one I have dreaded. After going through so much since 2015 with my ureter being constricted, dealing with stents and exchanges every 3 months, and worrying about the tumor that penetrated my ureter wall - I was so in hopes of avoiding having the cancer reach my bladder. Now that it can no longer be avoided, it has taken me some time to mentally adjust to not having a choice. I have cleared that hurdle, and I'm now ready to have the best possible medical professionals advise me regarding the best choice for me. I would love to hear from some women who have gone through this as well, if there are any out there. Thank you!

Our experience with neobladder surgery has certainly included several complications and we are still dealing with more surgeries needed 9 months after the original surgery. With your history of colon cancer and surgery, I wonder if you would even be a candidate for neobladder. They must have enough ileum to form the neobladder, and scar tissue from previous surgeries is a big issue. It seems to me creating a neobladder would increase your odds of having a colon cancer recurrence there, vs a urostomy. It will be months before we know how well Tim can do with his neobladder, and he has lost some kidney function as a result of the complications. After the fact, we are finding out about the frequency of complications, because we did not ask enough questions about that topic in making our decision. Tim knew he did not want a urostomy, so his decision was made early. Knowing what we know now, I would have pushed for a urostomy over neobladder, but it wasn't my decision. Timeframe for Tim: 9/2019 partial cystectomy for invasive bladder cancer. 12/2021 total cystectomy,prostatectomy with neobladder creation. 122 abscess of incision line led to draining using thru incision, Leaking are was plugged by adjusting the foley catheter balloon. 3/22 CT scan shows one ureter partially plugged. 6/22 CT ureter is now closed off, not patent, causing hydronephrosis on that side. a week later a nephrostomy tube was placed and they tried unsuccessfully to open ureter, also biopsy showed no cancer there. Finally have an October 13 appointment to have ureter surgery to remove blocked portion and reattach to neobladder. The surgeon hopes to do it robotically and says very slight risk of complications from this surgery. Once this is healed, he can have the large incisional hernia repaired that was the result of the abscess,etc. This has been 3 years of multiple cystoscopies, biopsies, catheters and stents. It sounds like you are well aware of these things. Best of luck to you.

How are you doing, @suzyq2009? Did you submit a referral to Mayo Clinic? Any updates on treatment decisions?