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

Hi. New here (F 62). I saw your post and had to respond since I am in the same boat. Trying to learn more about secondary andenocarcinoma to the bladder.

History:
In 2018, I was diagnosed colon andenocarcinoma. The cancer attacked my bladder and I ended up with a partial cystectomy. In 2020, I had a recurrence of the cancer and it, once again , attacked my bladder (about 2cm was removed) plus my left ovary. In early July (2022) , my 6-moths CT scan showed a mass, but the biopsy said it was scar tissue from the previous surgeries. In late July (2022), during my annual cystoscopy, my urologist spotted a small red spot (0.5cm) and some unusual bumpy spots on the surgical scar left from the partial in 2018. He ordered a biopsy (in August) and it turns out both samples are the original colon andenocarcinoma. So it has metastasized to the bladder. After the biopsy I had a CT scan which shows the cancer sitting on the bladder dome, just like it did in my first and second round, but this time it is also reaching out to the peritoneum.

What's happening now:
My urologist took the biopsy and CT data, plus my cancer history to the Tumor Board for recommendations. The board recommended chemo first and then surgery. I have a MRI and CT-PET scheduled for next week. The following week, I have an appointment to discuss treatment with my oncologist. I plan on getting at least 1 more opinion. I feel great so I think it was caught pretty early.

I am a cancer patient at the University of Arizona Cancer Center in Tucson, Arizona.

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?

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.

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 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.

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.