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As if things could get any worse ….. Results from my CT I have a 2×1 cm tumour on my kidney . I had the scan done last Wed and my family doc had the results Friday lets just say I am gutted and back in limbo. I called my Uro 1st thing this am and my appt. is not until next week . I asked if he could call me still waiting. She said he had read the report and it was not deemed urgent …how do you read into that ???I said please have him call I can’t wait 8 days . I just need to know his new plan. CT states highly concerning for urothelial malignancy. The rest of the report is normal.
Joe ?
Hi Cher-L,
Hang in there !!
You know sometimes, with all my respect, office assistance can sometimes becomes a gate keeper. The office assistance at least should pass your concerns and your request for a phone consultation to your urologist. I would be also buried with worries now you are diagnosed with a possible cancer in kidney after you have been diagnosed with bladder cancer recently. It was not deemed urgent likely because the tumour would not cause malfunction of the kidney immediately. .
First, the urologist has to determine if the tumour is urothelial cancer or renal cell cancers or benign. The tumor needs to be removed and analyzed just like bladder cancer. If the urologist determines tumour is located in the renal pelvis, first, he may look at the tumour by ureteroscopy, just like cystoscopy except using a narrower scope. Or a biopsy may be done from your back and analyze the tumour tissue first. Your tumour 2cm x 1cm is considered small renal mass (SRM) by Canadian Urology Association guidelines (2015) for the management of SRM. The established standard treatment for localized RCC has been radical nephrectomy, but recently partial nephrectomy has become the recommended treatment.
Renal cell carcinoma, which is 9 out 10 cases with kidney cancers.
Incidentally, because the radiologist expressed a concern of the tumor being urothelial cancer. It could mean that the tumor was located in or near the renal pelvis as it is considered as upper urinary tract. As we found out that LS patients have germlines mutations of DNA mismatching error repair (MMR), and studies we reviewed showed that patients with MMR gene mutations have higher rate of upper track cancers than bladder cancer by almost 5:1 ratio. On the other hand, in general population, upper tract cancers are only 10% compared to bladder cancers 90% in all urothelial cancers at the time of initial diagnosis. If the tumour found in kidney is urothelial cancer, then that could be the culprit of the bladder cancer.
Thanks Joe ! Have an appt this Thursday will post when I get back. It pays to be persistent. I also had a friend retired MD read the report and she said the only thing amiss was the renal tumour the rest looked fine.
Cher-L,
When investigating for bladder cancer in 2017, they saw something on one of my kidneys. More CT’s and an MRI and it was a large tumour. As I had good kidney function, my urologist recommended total removal of kidney. Kidney removal in April 2018 and biopsy of removed kidney showed renal cell carcinoma.
I am now over 5 years post surgery and no problems.
I had a cystectomy in April 2019 and now have a urostomy which is working OK.Stever
Stever
Thank you for your reply . I know this is treatable just want it OUT ! I have faith in my Uro . He was wise to follow with a CT. It just came as such a shock . I am blessed with a terrible gene that just wont stop coming for me. Just waiting on more tests and then kidney removal.
Cheryl
Hi Cheryl,
I know it may be not right time to ask but has the urologist decided if the tumor is urothelial carcinoma, formed in the pelvis or renal carcinoma? What treatment options did the urologist give you?
I was curious if the urologist weighed on full nephrectomy vs partial nephrectomy because the tumour is considered small as being 2cm*1cm. If it is urothelial carcinoma and the tumour is located in renal pelvis, it is highly associated with LS. Then I would be thinking what would be chance of the other kidney will be affected by LS in future. I think the chance is very slim though technically greater than those without LS because it took this many years for the tumour to develop if the tumour indeed is upper tract urothelial carcinoma. Anyway, I was expectation the discussion included LS and its implication in terms of the treatment.
Incidentally, there have been a couple clinical trials going on for vaccine for LS patients. One vaccine candidate is the NOUS-209 which was developed by a Swiss company Nouscom. 209 means that the drug contains 209 different neoantigens often expressed in colorectal cancer patients who are also LS patients. Our immune system, particularly T cells get activated against the neoantigens when they are introduced to our body, then go to cells which express those antigens and kill it. Nous-209 will be injected to muscle just like Covid-19 vaccine. Nous-209 is used in combination with immunotherapy drug Keytruda.
The other vaccine drug is called Tri-AD5. ImmunityBio, Inc. (NASDAQ: IBRX), a clinical-stage immunotherapy company, today announced on April 25 the opening of a clinical trial to study its investigational Tri-Ad5 vaccine combination (Adenovirus 5 CEA/MUC1/brachyury) together with its IL-15 superagonist N-803, an immune-enhancer, for people with a hereditary condition known as Lynch syndrome. This Phase 2b trial (NCT05419011) sponsored by the National Cancer Institute, part of the National Institutes of Health, will study whether Tri-Ad5 in combination with N-803 works to prevent colorectal and other cancers in study participants. It is interesting to know that ImmunityBio is the company who developed a treatment for BCG unresponsive non muscle invasive bladder cancers using the IL-15 superagonist N-803 in combination with immunotherapy Keytruda.
I also think that preventative measure such as vaccine is the way for treating people with LS.
Hi Joe pretty sure he said full …I should get a call next week for the scope he laos said it could take a few weeks grrr
I would also think that the urologist said the removal of kidney. CUA guidelines say that the gold standard management for non-metastatic urothelial carcinoma is radical nephrourectectomy with bladder cuff excision though Nephron-sparing procedures including segmental urethrectomy, endoscopic ablation or resection are employed in selective patients. It sounds like the tumour is in renal pelvis as the urologist wants to look at by scope (ureteroscopy to confirm that it is not benign.
Actually, I have noticed that CUA guidelines for NMIBC lists LS and includes LS under section of other risks. It says LS is related to both colonic and extracolonic cancers, including upper tract urothelial carcinoma (UTUC). A study by Skeldon et al suggested that LS is also associated with bladder cancer, as more than 6% of patients carrying a specific mutation in the MSH2 gene were diagnosed with the disease. Therefore, awareness of LS among urologists is important for appropriate screening and counselling of bladder cancer.
Literatures say that ureteroscopy for upper urinary tract, i.e. renal pelvic is commonly performed under general anesthesia to maximize patient tolerability and minimize surgical complications. Maybe, securing OR for ureteroscopy is the reason for taking more time. I hope your scoping gets expertized.
Incidentally, I think had the guidelines been more specific by recommending to check upper tract also at the time of cystoscopy, or at the time of TURBT the tumour in upper tract could have identified. If I recall your CT urogram was done because your tomour in bladder was high grade as CT urogram was their standard protocol for all HGs. Had your tumour was reported as TaLG, it is possible that CT urogram was not prescribed and the upper tract tumour would not have been found. I think the guidelines should be upgraded, especially knowingly now that the 2020 study by MSK found patients with LS were more susceptible to haver upper tract cancer than bladder cancer.
Good Morning Joe …My Uro was aware of my lynch status at time of finding bladder tumour. When I asked for the notes from the cysto I got them from my family doc it said ..Low grade low risk of course you can’t tell until path. But I think he was not expecting a high grade tumour.
This has been going on since beginning of March when I first went to family doc complaining of bladder fullness and put on over active bladder meds.. I am at my wits end . I have reached out for mental health and starting an anxiety med soon . I’m not sleeping well wake up and brain turns on .Thanks for responding- Cheryl
Good morning Cheryl too.
I am hoping my inquisitive postings have not complicated the matter. I believe your postings will be helping other people with LS if they are diagnosed with bladder cancers.
Below is the link to LS related postings in BCAN discussion forum, 2012 – 2019.
Once it lists out topics, you can click the topic to go to postings. If you finish reading the postings of the topic, you can click the back arrow on the top to go back to the lists, and click the next topic and so on.
Once you are the postings of the topic, you can click three dots after the bell symbol, which will pop up actions, of which “send message” is one of them. You can send a message or question to the poster, similar to BCC discussion forum. You may need to register to the forum.
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