Post-nephroureterectomy for UTUC - now abnormal bladder cells

I wish I had something helpful to share. I was diagnosed with a high grade UTUC in March of 2021. It was in the ureter, lymph nodes, & the muscles, & blocked the ureter, subsequently killing the kidney. I also had the same surgery, but the tumor was “gooey” & fell apart, so they were unable to take it all out.
My bladder scans have been clear, though, so I don’t have any experience with your current situation. My most recent scans showed metastatic disease to the anal-rectal region, with more lymph node involvement, (possibly an axillary node too, we’re watching that one), highly unusual I’m told. In fact, they are questioning if maybe this was the primary cancer & the ureter was metastatic. I’m heading into chemo radiotherapy.
I wish you good news on your bladder pathology. Very much relate to the stress of continuous cancer treatment. Best regards.

Wow. UTUC is supposed to be very "vigorous" and hard to beat, not to mention uncommon. You are a year further into treatment than I. It is difficult to know what to expect. My oncologist is optimistic as I am only 61.5 yrs old without any other health issues and I blasted through the chemo without any real issues except loss of apetite and a bit of hair thinning. Hair thinning was a bit of a bonus on not having to shave my legs in the summer. : )
My cancer definitely started in the kidney pelvis. Surgery was complex as the kidney was stuck to the adrenal gland and both were stuck to my diaphram. The tumour extended into both the renal vein and renal artery which were stuck to adjacent tissue. They had to cut into my diaphram in two spots and the inferior vena cava in one spot. Only the kidney end of the ureter was compromised, so I had hoped to avoid bladder issues. I have a lovely 15 inch scar down my abdomen.
I was lucky that my family doctor sent me to a good oncologist. She had a brief battle with the first surgeon my first urologist sent me to over chemo before surgery. The chemo stopped it from progressing and the new second surgeon agreed on the chemo decision. Unfortunately the first urologist did not know anything about UTUC and delayed a second biopsy attempt by 2 months (ureteroscopy didn't work as they couldn't access the kidney through the top of the ureter) by asking for a second opinion (that took 3 weeks). Then it took him 2 weeks after the external biopsy result showed high grade muscle invasive UTUC to contact me. December 2021 CT scan had half the kidney gone, the mid-March 2022 CT had entire kidney gone. The first urologist's comment was "I see hundreds of high grade cancer reports so why should I have jumped on this one". He is no longer my urologist and I am putting a complaint in with the Patient Relation board at the hospital (not one in the USA) about his attitude. If he had not delayed a total of 3 months, perhaps it would have been stopped at the T3 stage. My oncologist said she wished she had seen me sooner. First urologist did not even consider refering me to an oncologist. The current urologist seems to be more humane.
I hope that your cancer will respond and give you at least a few years without hearing the word cancer.

I had muscle invasive bladder cancer and used high staggered doses of Curcumin successfully and am now cancer free. Suggest you look into this:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6680685/

What form of Curcumin did you use in your treatment? Was this under an MD supervision or were you successful with your own treatment? The research article is very interesting, thanks for sharing.

Before, during, and after my treatment I use 95% standardized and bioavailable curcuminoids supplements. In it's natural form it is not absorbed into the blood. Most reliable brands add piperine(black pepper extract). Because it is water soluble like vitamin C, it may be flushed from your system every couple of hours. I was already taking large dosage of "timed release" vitamin c and still do, but had to take the curcumin supplements about every 2-3 hours.
There don't seem to be any report downside to either curcumin or vitamin c unless you happen to be allergic to them.
FDA and American Cancer Society have not yet given approval for this. Many doctors and hospitals don't want holistics used because source, quality, and dosage is unknown and unpublished. My oncologist told me she could lose her license if she mentioned it to her patients.
Since I read that life expectancy for me was low, I searched for solutions. I have worked in computer programming(now IT) since 1966, and have a high degree of confidence in my ability to gather accurate and reliable information from quality sources.

There seem to be a very large number of studies and clinical trials being done all over the world. I read that England now has an extremely large one going on. I didn't want to die waiting for federal approval, but understand doctors and hospital concerns. I first looked at a Malaysian study on Lung cancer because it contained much detail and was well documented. I recommend you look for as much research as possible as it is being updated all the time. Any further questions, I will answer yto the best of my ability.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699625/

Thank you for your prompt response. I have been actively researching complementary treatment options for my own head and neck cancer for 11 years now. I continue to watch for recent studies for Urothelial Cell Carcinoma since my husband was diagnosed in 2019. I am a veterinarian so I can appreciate reading studies to extract solid information and avoiding what is internet trash. We both take an increased bioavailable curcumin at this time, but once daily. I thank you for your information and good luck.

I’m sorry you had to go through all of that with your first urologist. Good doctors make all the difference. I’m also glad you are in good hands now.
I saw the Radiation oncologist today, simulation next week, then we’ll start treatment. Apparently this treatment is really hard. I’m trying to stay in the moment. Thank you for sharing your experience with me.

Your welcome. Google Chrome browser seems much better at finding things than others, don't know why. Curcumin is used for everything. I know somebody with RA who take 10-500 mg supplements a day and says it solves her problem, Curcumin also builds the immune system, is good for the heart and is being suggested for Alzheimer's and brain stimulation. Taking it may aid more than one condition. By the way, B vitamins are also water soluble, so they may not stay in your blood stream very long. Very important to know everything about what you put in your body and and reactions between them and anything else you are taking, including foods.

@lrwants2know, I wanted to check in. How are you doing? Any updates?

Hi Colleen,

TURBT done on Thursday. Urologist said he didn't believe the suspected areas had grown in the three weeks since cytoscopy. Report said that multiple biopsies were taken and multiple lessions were resected. Question - one, two, many, multiple? How much is "multiple" in doctor speak? Report also summarized that the cytology did not say malignant, but was suspicious given the T4 UTUC that resulted in the radical NU.

Interesting that I had three cytology tests (Aug 2021, Nov 2021 and Dec 2021) that all reported "no evidence of high grade urothelial carcinoma", even though by December 2021 about 1/2 my kidney had been taken over by the "unnamed" UTUC. In February 2022 the biopsy said muscle-invasive high grade urothelial carcinoma. Note , that based on some internet searching, it looks like cytology results are not really accurate for UTUC

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8415726/ "However, as our molecular understanding of UTUC matures, we are learning that UTUC and UCB may, in fact, reflect distinct biological entities—an epiphany crucial to improving outcomes in patients with UTUC."

I have an immunotherapy (Nivolumab) session on Thursday and a monthly consult with my Oncologist. I hope that she will provide information on potential future treatment eventhough the biopsy results may not be available for another week (or 2). Personally, I think that it is "Cancer Round 2 - the Bladder Episode" and that they really shouldn't waste time going through the standard steps. It ate up my kidney in 7.5 months. It has been 8 months since the kidney was removed. Am I racing the clock to the next major surgery? It has a significant head start.