Unclear Undefined RCC

I had a 1.8 cm mass found on my kidney on a scan following a mastectomy. It was an incidental finding but one that needed to be addressed before chemo/radiation could begin. I saw a Urologist who advised to have a biopsy/ablation of that mass after chemo and radiation ended. The biopsy revealed "renal oncocytic neoplasm of indeterminate malignant potential" , sample size for the biopsy was very small so still at risk, so Active Surveillance commenced. For the past 3 1/2 years I have had periodic enhanced CT Scans (3-6 months apart) of the abdomen. As of 1 year ago the tissue in the area was showing changes. I got really confusing descriptions and reports of the changes in general, what the changes indicated, next steps, etc. I specifically asked if they were indicative of a RCC and was at first told NO; that later changed to very likely RCC. The unclear communication between Urologist, PNA and me was a BIG problem. Add to that unclear/undefined RCC means that it just hasn't evolved enough to know what it REALLY is and Active Surveillance until it meets a certain size or other symptoms occur seems to be the norm. I switched doctors to one at a facility where roles are more clearly defined and DOCTORS do the Active Surveillence. I will see the AS Urologist until the mass reaches a size or conditions to warrant surgery. At that point I will move on to the Surgeon. Eventually they seem to have determined that the mass is likely a chRCC (chromophobe Renal Cell Cancer) as the shape and color and configuration on the last scan showed more than the others. I had an MRI instead of a CT and I think it gave them more detail?

Welcome to Mayo Connect
I was diagnosed with 2.4 cm renal cell carsonoma on my left kidney following biopsy. I am now scheduled for surgery to remove the tumor on Oct. 25 and hopefully keep my left kidney if the margins are clear. I know how hard the waiting is. Let me know how you get on with survalence?
Don

I am still in the midst of active surveillance. It has been a lot of scans over the past three years so I have some concerns about the amount of radiation. I am being exposed to. That is why I made the request to switch to MRI studies instead of CT studies because there is some reduction in the amount of radiation. My biggest issue has been that because my kidney issues are “small “, they seem to be more apt to be disregarded by the urologist. In addition to that I have been seen predominantly by a physicians nurse associate rather than the physician. I was OK with that, until there seem to be a recurrence of the kidney mass, and at that point, I really felt it was critical to be seeing , the doctor. When I asked the PNA if the mass is a Cancer, she flat out told me no. When I finally saw the urologist, all he focused on was the fact that I had cancer. All this without any skin evidence that I have ever had a cancer. so hopefully I will be meeting in two weeks with a new urologist at a new cancer center and will be able to strike a balance between active surveillance and probable malignancy. I am hoping that continued active surveillance at the new facility will be with a urologist who will follow me until the mass needs to be surgically removed. Then I will pass on to the surgeon in that practice. Hopefully I will not be meeting with nursing level staff for the session. That was my biggest complaint with active surveillance. Every time I ask a PNA question I was told oh I’ll have to ask Dr. so-and-so about that and talk to you next time. They never asked and we never talked about it. I have a problem with that.

I live in Tampa Bay Area as well.

@koke and @tullynut welcome to Mayo Clinic Connect. As this discussion suggests you both have an “unclear undefined” kidney something. If there is a potential for something cancerous it is especially concerning. My husband had thyroid cancer 15 years ago that is now considered to be resolved. My daughter is currently battling stage 4 breast cancer. Sometime after my husband’s thyroid cancer a thing was detected in one of his kidneys. There were appointments, labs, scans ….. etc to determine what it was. At one point we were told “it is something, but nothing to be concerned about”! That was a very frustrating, scary and confusing statement to hear. Eventually it was diagnosed as a “calcified cyst / mass”. When it was first detected the term “kidney stone” was used. There has never been any treatment for it and it is still scanned every few years to monitor for changes (size, shape, color etc). Sometimes the more words / phrases that are used to describe something the more aggravating the situation can feel. If there is something wrong I prefer to know what, why and what to do about it. Have either of you been presented with any treatment options?

No treatment options offered yet. And in all honesty there don’t appear to be many true treatment options other than ablation and/or surgery and even with that monitoring with scans follows. My breast cancer oncologist referred me to genetics because HE was concerned about my kidney issues! I do have a maternal family history of RCC for my grandmother, her daughter was born with only one kidney. Aunt’s son was born with one kidney smaller than the other. It was eventually remodeled bed. My mom had no issues. My genetics results came back all OK. I understand the need for continued monitoring in hopes of catching any issue as early as possible. It can be unnerving tho. Always waiting for another shoe to drop.

We live in Pinellas Park and I go to Moffitt for cancer treatment. I've had successful treatment for esophageal cancer including chemo and radiation.
The kidney tumor was found on followup scans for esophagus. I'm also now signed up for biopsy of throid nodule Dec 15. I'm hoping next year will be better.
Don

My name is Ron the farmer I was diagnosed with rcc two years ago I went from a yoked 185 to 130 in 2 months it was the most horrible stuff I ever went thru I'm on keytuda and lenvima so far the tumor has shrunk its not in my lungs anymore my numbers r all good I have gained 32 back and I train like it's the last day of my life

Curcumin has been shown to be a powerful agent that kills cancer cells. It's weakness is that along, it is not bioavailable and is quickly metabolized out of the blood stream. Bioavailability has been remedied by the addition of black pepper extract. I currently take 1000 mg 95% curcuminoids with black pepper extract several times a day.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758121/

I see a surgeon tomorrow. Were you given a choice of type of surgery? Partial nephrectomy, radical nephrectomy or other? Stay strong. I have circled October 25. Blessings.