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

@tspitzley63, if you would like to request a second opinion at one of the Mayo Clinic locations, here is where to get started: http://mayocl.in/1mtmR63

How are you doing?

Thanks Sue... It's so hard sometimes to navigate all the things that come with this journey! I am limited by insurance on where I can go for second opinions, but I agree I need to explore most options.

tspitzley63 I certainly agree that you need a highly specialized team to assess what can be done to help you to live with this cancer. It's not always about cure, but some of us live with our cancer for many years. You need another opinion to know that you have explored all options in this battle. Good luck to you.

I too have colorectal cancer that first metastasize to my lung and then after 6 months of having UTIs they finally did a cystoscopy to see that I had a tumor inside my bladder. Obviously grew from the tumor in my colon that had grown and was sitting on my bladder when they did my surgery. The surgeon decided to keep my bladder rather than remove it or take that spot and make the bladder smaller. Now my entire bladder is filled with tumors so much so that they couldn't even put a camera up there to see. I feel like it is now growing over my urethra and I'm passing what look like kidney stones that they say are calcified pieces of my tumor that are coming through as I pee. It's very painful I tried to get my bladder removed but no one would do it saying due to the fact that it wouldn't cure me and I had a tumor in my lung and other areas in my body. And they weren't sure if they could have enough of an intestinal piece to make a conduit for my urine. I haven't been able to find anyone that has had been passing stones and I'm curious if anyone else has I'm probably going to post that as a question here. I have been on just about every type of chemo when I started taking the lonsurf and an urban erbitux together that's when I started shedding/passing the stones/tumor. My right kidney is totally blocked from the tumor growing on my ureter. And is finally not producing urine. The urologist wanted to put a stent in my kidney that is working to divert the urine. But that won't stop the stones from passing and I don't know what else to do. I'm thinking about getting a second opinion here at Mayo clinic. I don't know if this helps but that's my experience

Thank you. His robotic repair of stricture area in ureter went very well. He was discharged from the hospital yesterday and feeling pretty good. Robotic surgery with five small incisions is going to make his recovery much easier. Next up will be incisional hernia repair in a few months.

The closest for me is the University of Arizona Cancer Center in Tucson, Arizona. It is a NCI designated cancer center. I am a patient.

@p14175 Hello Linda and thank you for sharing your journey with cancer. I'm so glad that you now have medical coverage.

Will you keep in touch as you continue this journey? I hope you get a second opinion from Mayo or any other major cancer center. Where is the nearest well-known cancer center?

Thanks Teresa, I'll be checking with my insurance about covering the cost of a 2nd opinion at Mayo.

As far as your other question. Prior to diagnosis I didn't see health insurance as a necessary expense. I was healthy so paying as I needed it saved me a lot of money.

In late 2017 I started having UTIs over and over again. By the time things started getting bad, my doctor begged me to sign up for Obamacare, but it was too late. Obamacare deadline was December 15. At the beginning of 2018, I started having severe chills and shakes that would last about 2 hours and then go away. After stalling for 6 months, my doctor finally convinced me to get a colonoscopy and the rest is history. The colonoscopy showed an obstruction inside the colon. By the time I got to a surgeon a couple months later, the tumor had grown outside the colon. When the surgeon removed the tumor it weighed about 3 lbs and had reached out an touched my bladder, small intestine, and duodenum. I lost my sigmoid section, bits and pieces of small intestine, a little bit of the duodenum, had a partial cystectomy, and woke up with a loop ileostomy. I would say that I am lucky to be alive.

The next year I got health insurance.

@p14175 Hello Linda and welcome to Mayo Connect. As you said, catching cancer early is a good thing.

I'm glad that you will seek a second opinion. That is so very important in getting the right treatment for your type of cancer. As you live in Arizona, have you considered a second opinion at the Mayo Clinic in Phoenix? If you are interested in seeking a second opinion at Mayo, here is a link that will take you to Mayo's appointment center, http://mayocl.in/1mtmR63.

If you care to share more, were you having symptoms that led to the original cancer diagnosis in 2018?

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.