Metastatic Clear Cell RCC and overwhelmed, needing a provider

This is long but I wanted to give some context of where we are at in this process. Husband is 52 years old and was diagnosed just before 48 with clear cell RCC. Left radical nephrectomy in December 2021 and things have been good until now. Scans indicated nodules in the lungs, one grew and he had it removed two weeks ago then was referred to oncology for follow up treatment.

We were all set up to see a local oncologist who comes highly recommended and after looking at his resume/experience, I felt relieved he was going to see a great oncologist who has a strong background in genetic medicine (and as a nurse, I am super picky about who my husband sees for his medical issues). As immunotherapy and things like CAR-T are the new kids on the block so to speak with renal cell treatment, I would prefer a provider who is well versed in this specific cancer so I was looking forward to his appt next week.

Well, he just got notified that the cancer center this oncologist works out of does not accept community care referrals from the VA so we are looking elsewhere. I do not want the VA handling his treatment as I feel they were lax in not referring us to oncology four years after a radical left nephrectomy and being dx'd with clear cell renal carcinoma. I have no idea if a course of immunotherapy after the nephrectomy may have kept us from being where we are now. They said it was contained to the kidney, pathology did not show any malignancy in the adrenal gland they removed or the lymph node they had biopsied. Hindsight is 20/20 and I can't beat myself up for not being a stronger advocate.

So here we are, two weeks post op from VATS wedge resection of his left lobe to remove a 13mm nodule and pathology showed it's positive for metastatic ccRCC. His surveillance scans had been clear up until this year when February showed some small nodules in both lungs. A six month follow up scan was scheduled and life went on as usual, he even got a total knee replacement in June. Then the follow up scan in September was completed and it wasn't great news -one of the 9mm nodules had grown to 13mm. It was in the fissure and easy to access for removal; a needle biopsy would have carried a high risk of pneumothorax.

He has three other nodules, two are quite small at 3mm and 4mm (one in each lung) and then a larger 9mm that has been stable since earlier this year deep in the right lung. We are pretty sure whoever we see will opt for something like SBRT for the remaining nodules and surveillance or perhaps a course of immunotherapy followed by surveillance to see if the nodules in the lungs shrink. Because the 9mm on the right lung is so deep, the thoracic surgeon said a lot of lung tissue would have to be removed, that targeted radiation/immunotherapy with or without a TKI would be the better course of action.

Because this cancer doesn't behave like many others (doesn't always show on PET scan, doesn't respond to chemo, etc) we would prefer to see someone who specializes in kidney cancer. Not just a regular oncologist. He does have a secondary insurance with UMR (under UnitedHealthcare umbrella) through his state job that he retired from and while I am not concerned about things like imaging and doctor appts, I know immunotherapy can be extremely expensive.

The VA would cover 100% of all costs if he is treated at the VA or through one of the community care providers as this is service related from exposure to toxic chemicals. So we have a choice - see the local oncologist and bill it to his state insurance but potentially risking denial of coverage for many of the immunotherapy drugs from UMR (because they are horrible). And even if approved, I have no idea what the out of pocket expenses would be. Or.....try to find a VA community care provider and hope they know what they are doing.

I am really lost with all of this - this has all transpired in the course of about 6-8 weeks including the surgery. We still have to get a CT scan of his chest/abdomen/pelvis to restage the cancer - brain MRI was negative for mets, thank god. He is in pretty good health, takes a low dose of BP medication mostly for kidney protection, has great numbers on his kidney panel despite having the solitary kidney (his creatinine this week was 1.2 and his GFR was 73). I know he will probably tolerate treatment okay but I also have to consider the time off work I will be taking which will be unpaid since I'm out of leave.

This is all so much to take in so I decided I should probably start to use resources like this where folks have walked a mile in his shoes already and perhaps I might come across someone who was in a similar position. Or even get some recommendations of great renal oncologists then cross check them with the VA list. We are in Northern Nevada but are willing to travel to the bay area, Vegas, s. California or even Houston (my nana was treated at MD Anderson many years ago when I lived there and I hold them in high regard).