Post-nephroureterectomy for UTUC - now abnormal bladder cells

@lrwants2know, you have a lot of good questions for your upcoming consultation with the oncologist. Keep asking questions and ask again until the answer is clear to you. Do you usually bring someone to your appointments to help be another set of ears and note taker?

No family available to come with me. Friends need to work. I audio tape visits that might be high-powered. Did that with the first urologist who did not know the implications of an invasive high grade UTUC biopsy report. He did not contact me or set up any follow up for 12 days after the biopsy report because he "saw hundreds of invasive high grade path reports and had a thousand patients". I had to put the European Urological Association's Guideline on UTUC in front of him and point out the sentences at the top of the introduction :"1 or 2 per 100,000 people are diagnosed annually with UTUC. Prognosis is poor" . I walked out on the meeting. He read the Guideline and very, very quickly set up a CT and Bone scan - 18 hours. CT Scan showed kidney totally destroyed. 3-1/2 months earlier it was only 1/2 destroyed.

Hi Colleen,

Pathology report says high grade papillary urothelial carcinoma. No invasion of lamina propria, muscularis propria not sampled. So Cancer Episode 2 The Bladder has started.

Oncologist appointment tomorrow - I have to talk about this latest development. Fast action needed since the high grade versions tend to take over quickly.\

Bye,
Linda

Linda, you are such a good advocate for your care. How did the appointment with your oncologist go? What is the treatment plan? And, of course, how are doing?

Hi Colleen,

Urologist appointment on Thursday at 11:30 am. Won't know the treatment regime until then. Annoying to wait 2 weeks to find out. Oncologist said in our meeting 2 weeks ago that it is not muscle invasive (I added - "YET") and is treatable. She is thinking the urologist will offer BCG treatment. Immunotherapy with Nivolumab will continue every 4 weeks. Yesterday's CT scan was "status quo", but then the end of January CT scan was the same with bladder tumor barely a month later.

I have done some research and will ask Urologist if the treatment plan is for Primary Bladder cancer or if it is for UTUC Intravesical Recurrence (UTUC IVR) in the bladder. According to several journals UTUC IVR in the bladder is different from primary Bladder cancer and standard BCG treatment is not as effective at stopping it. "Presence of NMIBC after treatment for UTUC has a worse outcome for patients compared with primary NMIBC. More aggressive treatments for bladder tumor recurrence should be considered" .

Based on statistics of several retrospective reviews, I am on target for UTUC recurrence in the bladder (min. 7 months after RNU). There is a 50% chance that NMIBC will recur within 3 years of BCG treatment, a 12% chance of radical cystectomy and a 24% chance that other metastatic cancers will occur.

So far my cancer has consistently been on the bad side of "chance". 1 chance in 50,000 of getting it. My UTUC had squamous differentiation (13% chance of that occuring). So being on the "good" side of the 47% end point for cancer specific survival in 5 yrs (now 3.5 yrs) is highly unlikely.

Since UTUC and the recurrence in other areas has been difficult to study as there are not enough victims for studies and they are diagnosed late (Stage 4 for me), the effect of any treatments such as the cisplatin/gemcitabin before surgery, immunotherapy after surgery and now BCG is unknown.

I am taking this one day at a time (with bouts of crying) hoping to reach my 65th Retirement age in 2026. Not quite following the activities in Tim McGraw song "Live like you were dying", (no way, no how, am I jumping out of a plane!) but continuing my normal activities. It is all that I can do.

Thank-you for caring.

Hi Linda, and Colleen,
Thank you very much for your post.

I too was diagnosed with UTUC in January. After bypass surgery in February, had a single bladder polyp of cancer removed in March. BCG was injected into the bladder at that time. Biopsy showed my cancer was high grade with no muscle invasion. Am scheduled for nephroureterectomy and lymph node removal surgery on April 26th. Not sure of the diagnosis after that.

Hoping to reach my 65th retirement in 2024. Am a bit panicked. Haven’t looked for a cancer specialist. Just my local urologist. Have a million questions some I don’t want to know the answers to.

I will hope and pray for your favorable outcome. Thank you very much for your post. It is so appreciated.
Jeff

Hi Jeff,
If you can, an oncologist will be of great help. UTUC is agressive and you need to do as much as you can to smack it down. My cisplatin/gemcitabin chemo was before surgery which was good because it likely cleared up any cancer in the lymph nodes. The surgeon took out 27 lymph nodes from my pelvic and retroperitenium (area between the kidneys). No sign of cancer.

In Canada the medical procedures are free, so I didn't need to worry about costs. My oncologist found a urologist which specialized in cancer surgery at Princess Margaret Cancer Hospital which is the top cancer hospital in Canada. I had open surgery with an incision straight down the centre of by abdomen - about 14 inches long. Scope surgery wasn't going to work. I went with a spinal epideral for 4 days which managed the pain nicely. After that it was 1000 mg tylenol twice daily for a week, then I slowly backed off- none needed two weeks after I got home. Didn't use the oxycodin they prescribed.

Surgery was on a Monday, walking in hospital halls and jello/broth on Wednesday, real food on Thursday and home on Saturday. Driving and shopping three days after I got home. Slow moving, not lifting anything over a couple of pounds and avoiding speed bumps which hurt when you go over them. Six weeks after surgery it was back to normal activities, but still being careful for another 4 weeks - no sit-ups!

Had a catheter in for 2 weeks to keep the bladder drained. Since they took out the section of the bladder where the ureter entered, the bladder needed to heal before any "urine pressure" was put on it. Annoying, but necessary. Hint - put the night bag with the long tube in a tupperware tub on the floor beside your bed. I accidently opened the valve by knocking it on the bed leg when the bag was on the floor. Very unhappy next morning to find a wet carpet. I cried. I was overjoyed that it was removed - told the male surgeon that "guys are used to having something dangling between their legs, women are not". The female nurses laughed.

Make sure that your urologist does a cystoscopy to check your bladder every 3 months after you recover for at least a year to catch any recurrence in the bladder. High grade also means it moves fast.

Don't be afraid of the surgery - it is the easy part - as the doctor says "you won't feel a thing". If you have shoulder rotator cuff problems on your surgery side, tell them. They do a lot of table tilting to get a good look if it is open surgery and it stresses the shoulder.

The statistics I've found indicate that men seem to have a lower chance of early recurrence.

Relax mentally as much as you can before surgery. I started re-reading my old Star Trek, STNG, DS9 books to get away mentally. It helps.

Best of luck and hope to see some new posts after your surgery.

Hello lrwants2know,
My husband had highly aggressive muscle invasive UC in the bladder diagnosed in 2019. After partial cystectomy and 29 l. nodes removed (all clear but 1 closest to bladder) he started Gem/Cis treatment. Recurrent abnormal cells and suspicious spots on cystoscopies, TURBs, BCG failure, Pembrolizumab failure, and he got tired of the procedures and had radical cystectomy with neobladder formation. December of 2021. All recurrences were non muscle invasive but we know the tumor type so expect progression. After multiple issues with postop complications, retrograde ureteroscopy, neph tube, repeat ureter attachment via robotics, he just had a final robotic surgery to repair his huge incisional hernia. All the care has been at Mayo Clinic MN, for surgeries not always available by local urologists. I totally understand what you are going through and how terrifying it is but you are doing a great job researching and advocating for your care. I understand from Canadian friends with cancer that you must do this for yourself with your health care system. We have also found that being knowledgable about your medical condition is a huge plus. We have also had a lot of experience with complementary therapies with my cancer (Head & Neck SCC) of 11 years. Include in your research the various ways to boost your immune system such as beta glucan, diet changes, probiotics, Vitamin C, etc. I know there are naturalists in Toronto area that my friends used. Qubiologics.com is doing a lot with immune therapy and located in BC. While these never take the place of traditional medicine, they may improve your odds of fighting this cancer with your own immune system. I know it is a lot of work researching constantly while undergoing all the rest. A favorite book to give hope is How Not to be My Patient by Edward Creagan, a palliative care doctor at Mayo Clinic. Good luck to you in this battle. Susan

Hi Susan,
Sincere thank you for the information on immune boosters. I have started taking a Vitamin C/Quercetin supplement. Both are very good immune system supports. Also Cranberry Extract to ward off UTI since my urethra and bladder are going to be subjected to catheters for the next 6 weeks with BCG instillations.

The hardest part of a diet change is weaning off chocolate bars. I am a chocoholic and want something sweet to eat. Since sugar feeds the cancer, I am trying my best to reduce. It is disconcerting to reduce sugar and bread and potato consumption only to find the scale going higher. I lost my right adrenal gland when they took out the kidney (they were "stuck" together) and my Thyroid Stimulating Hormone level is higher. I lost 30 pounds from the on-set of UTUC and the start of Immunotherapy. I've gained back 20 pounds (that I don't need). Is my metabolism slower because of the immunotherapy?

My Oncologist, urologist and the onco-urologist surgeon who did the RNU are all confident that the BCG will work in combination with the Nivolumab therapy and that I not loose my bladder anytime soon. I know they are putting a bright spin on it. All of the journal articles on Bladder cancer after RNU surgery for Upper Tract Urothelial Carcinoma note that BCG is not a guarantee, as your husband found out. They say "everyone responds differently", but statistics are supposed to provide a mid-ground of the responses, and Bladder Cancer after UTUC has the mid-ground at the low end of the "progression-free", "overall survival" spectrum.

I hope the doctors are right, but am prepared to say "I told you so". Time will tell.

Give your husband a hug for me.
Linda

I also am a terrible chocoholic, but high quality dark chocolate can contain less than 4 grams of sugar per serving. I save my sugar expenditure on dark chocolate daily. I don't even like sweet milk chocolate anymore! Limiting sugar gets easier as time goes on. I hope someone is doing a thyroid panel with the high TSH as Hypothyroidism is possible. Hypothyroidism is a side effect of some immunotherapies and one symptom is weight gain. My husband is permanently hypothyroid as a result of Pembrolizumab and his TSH and T4 are still erratic even on levothyroxine supplement daily. The oncologist keeps adjusting the dose. I am ready for him to see an endocrinologist instead of just monitoring with the oncologist. I have been hypothyroid for many many years but very stable on levothyroxine despite all the cancer treatments. Good luck and treat yourself to some dark Ghiradelli .....you deserve it!