Metastatic renal cell cancer: Cyst in maxilla bone area

A renal cell cyst (instead of a carcinoma) sounds like an unusual diagnosis, but I'm not a doctor. What happened with the originating renal cancer - kidney removal?

Radical resection and fibular (or other bone) flap reconstruction is major surgery, but it may be your best option. Some people here like @hrhwilliam have had a very similar surgery in the mandible rather than the maxilla.

Have you sought a second (or third) opinion from a highly rated cancer center? Is genetic testing of the tumor potentially useful?

Renal cell diagnosis was a big shock to me also. I had kidney cancer 25 yrs ago!! The cyst then engulfed my kidney, but was all contained. They removed it and my kidney, I had no chemo or radiation after, and stayed cancer free for 25 yrs. Then, in September 2022, while having tests done for gum scaling for periodontis, they found the cyst in my maxilla.
Genetic testing, I never thought of it.

Did you have a biopsy to confirm the diagnosis? My (repeated) tumor adventure started at the dentist as well - but the initial pathologist couldn't identify it, then the specialty pathologist took over a month (and prodding from the oral surgeon) to confirm ameloblastoma, which is quite rare.

For me it was ~15 years apart, not as long as you.

Yes, I agree with Tom. You now should ask your physicians about their familiarity with Ameloblastoma. Further, are they pushing the free flap surgery because they want this on their resume' or because this is best for you? That sounds harsh but something here doesn't sound quite right. If it's free flap surgery, then my advice would be to go somewhere where they have had a lot of experience in this area such as Mayo Rochester, or MD Anderson. Do not hesitate to ask about the surgical team's experience in this. Free flap is a really big deal requiring considerable pre-surgery model work-up and prep.

Original pathology report when first operated on first the cyst it was diagnosed as "may be" ameoblastoma, cystic odontogenic tumor, an unusually large radicular cyst or ancurysmal bone cyst. I questioned this right at the start and cancer doctor that "specializes" in renal cell told me that's what it definitely was. The biopsy was initially done with an extremely small piece of the cyst. I bled out and the surgeon at the time said she was lucky to get the small piece!!! I'm waiting for Sloane Kettering for a 2nd opinion because they are closest to me. I didn't believe in jumping into surgery unless they said it was my only option. So, ameloblastoma would be even more serious???

Ameloblastoma isn’t necessarily more serious, just more definitive. There are variants of Ameloblastoma of which one can be reoccurring whilst others not. So it would be good for you to know that as well as your surgeon treatment wise.
Good to hear you are getting a second opinion at a reputable facility. Please keep us updated.

I agree with William.

Personally I would insist on a more definitive pathology report. Knowing exactly what the problem is should inform the treatment plan. I sympathize with the surgeon having difficulty getting a sample.

For my first round with the ameloblastoma, it took 20 minutes of rooting around in my jawbone and the surgeon repeating "let me try one more for bigger sample". Worst pain of my life - even beating out the nasty kidney stone I had last year.

Ameloblastomas are a group of quite rare tumors which form near/on roots of teeth. They are slow growing and very rarely metastasize. However, they keep growing and are difficult to eradicate - and difficult for pathology to identify, let alone define the subtype. As William notes, different subtypes can need more or less aggressive treatment. Mine is probably the least aggressive type - unicystic.

On the genetic testing: There are now a variety of drugs which target the specific genetic mutation which caused the tumor - and tumor tissue has to be genetically tested. My particular tumor has the BRAF V600E mutation, and I am trying some chemotherapy which is designed for tumors with that mutation. Two caveats:

1: The evidence this chemotherapy works on ameloblastomas with the mutation is slim. Good, but slim. This is an off-label use of an FDA approved chemotherapy regimen, being overseen by MD Anderson. The biggest trial in the world that I could find was only 12 people - but with a 100% success rate at shrinking the tumor.

2: Mandibular ameloblastomas tend to have this mutation. Maxillary ones have other mutations.

I am not a doctor or even in the medical field, but my current job is overseeing research projects. I did a lot of digging in Pub Med, as did friends of mine. I really don't want to do a radical resection and fibular flap, so we're trying the chemo. It's a set of pills I have been taking twice a day since early October. One imaging followup showed the tumor is static - which is good news. Hopefully the next imaging in a couple of months will show actual shrinkage, which would be great news!

For more details, head over to the Ameloblastoma thread - I and others have posted a fair amount there.

Thanks so much for the info. I'm at a stand still right now and extremely frustrated. All this has been going on since September 2022 and, other than being alive still, which is a GREAT thing, nothing else has changed. Having an extremely difficult time getting in touch with the right people at Sloane. Today I reached out to a patient advocate, even though I'm technically not a patient yet! Short of going to NYC, sitting down on the floor of the hospital and saying "Help Me"...I can only wait for other people. Monday I have an appointment with my cancer doctor and I will most certainly bring up everything that was suggested here.
I Thank you and @hrhwilliam for all your advice. Keeping the faith.

Things started moving for me once I had the pathology report from my original oral surgeon and got my PCP to give me a referral to MD Anderson. It was the wrong part of MDA, but having that referral really helped.

I really wish I could afford MD Anderson or Mayo Clinic...I'm having a really hard time, as I stated previously, and now I'm reading the reviews. For a top of the chart cancer center, their reviews are horrendous. Wondering if anyone here has heard of Beth Isreal Cancer Hospital??