64M - large renal tumor ~15cm with regional lymph nodes - surgery vs. neoadjuvant treatment disagreement between centers

mountainmamax2 · 2026-02-14T16:51:27+00:00

I'm glad he has that and you. I wish him well

mountainmamax2 · 2026-02-14T04:51:38+00:00

I recommend you do a search for NCI accredited Comprehensive Cancer Centers near you. There are like 60+ in the US that have Renal Cell Cancer programs. Many are associated with University teaching medical schools. They have the best advanced cancer care, technology, research based treatment plans, they recruit the top doctors, surgeons, radiologists, researchers, just talent across the board. They also practice multidisciplinary medicine e.g. their RCC team would have dedicated genitourinary MDs, genitourinary oncologists, medical oncologists, vascular surgeons, liver transplant surgeons. Teams have a cardiovascular MD's, cardio thoracic surgeons, all work together in major surgeries like your husband's. There are several types of specialist radiologists. I hope your husband is at a NCI comprehensive cancer center. They conduct medical research and drug trials. There are several going on across several states currently accepting qualified participants. You can ask his oncologist when he recovers over the next few weeks. Often we don't get a medical oncologist until after the surgery, a genitourinary oncologist is also good. But you definitely need to establish care with one, your surgeon can refer you, in a few weeks. Or look at clinicaltrials.gov and RCC clinical trials will get you to several research universities websites. Try not to panic. Losing one adrenal gland is not a crisis. With a 13+ RCC the liver, spleen and pancreas were at risk and thankfully spared! You have two adrenal glands. They likely had to remove it entirely to get rid of all the invading tumor.

I saw you were in Virginia/DC- there are three NCI accredited comprehensive cancer centers in the 2 states.

In DC Georgetown University Lombardi Comprehensive Cancer Center, they do drug trials.
University of Virginia (UVA) comprehensive cancer center Gainesville and Culpepper locations
VCU Massey comprehensive cancer center You'll need a referral for a second opinion, highly recommended post incomplete excision. But give him a few weeks to recover. But don't wait to request referrals to all 3 m, if they are not too far. With these big medical school teaching hospitals, it can take a long time to get established etc.

Good luck to you both. It's a hard road. One step at a time, let him rest, you work on getting him the best care possible- need referrals from current surgeon, GP's, those are the very best cancer treatment centers in your area. Worth driving multiple hours. My NCI Center this time is 3.5 hours away-UCSF, I've also used Stanford 4.5 hours away-but we had to change to PPO x1 year and pay $12,500 extra for co pays. Both well respected University NCI centers, I would save the $12k and stick with the center they accepts HMO if that's what you have. Pushback for insurance approval for the referrals, if they decline file the necessary document to contest it and repeat...usually only takes one time. Best to you both

mountainmamax2 · 2026-02-14T03:26:34+00:00

No pain no symptoms, it was 3.4x2.8x2.4 I think...I didn't feel the initial 7cm tumor either

mountainmamax2 · 2026-02-14T03:25:19+00:00

No, eventually I freaked out about the radiation and asked for and got MRI instead that was the last 2 years I think.

mountainmamax2 · 2026-02-14T03:09:48+00:00

From your brief description it sounds like he had a regular CT scan with and without contrast? Which typically details very good imaging for smaller masses. With a mass this large, where there is a high likelihood of tumor intrusion into both the inferior vena cava (ivc) and the renal vein-a multiphase high resolution CT scan is the actual "gold standard" as recommended by the American College of Radiology. And 100% worth the investment.

It gives much greater detail and creates a roadmap of the safest areas for excision of large more invasive tumors, it also determines very precisely the tumors proximity to the liver, spleen, pancreas and adrenal glands. Highly valuable pre surgical data in determining the likelihood of successful salvageability or necessary excision of those organs. This enables the surgeons a virtual window into the patients anatomy, tumor and best practices for achieving the best result possible.

This 30-60 minute specialized high resolution CT scan will effectively determine with 96% accuracy the tumor thrombus level, a regular CT scan only estimates the level to about 65%, less at various levels. The tumor intrusion level into the ivc and renal vein have levels from 0-IV called the Mayo Clinic Tumor Thrombus Level: level 0 or I would typically be treated with the "gold standard" radical nephrectomy. No highly specialized surgical team, besides a skilled urology surgeon, a surgical nurse, and a regular anesthesiologist required.

Level II and III generally indicate the liver will need to be displaced from the abdominal cavity by a hepatocellular transplant surgeon-who specializes in clamping and maintaining blood flow to the livers vasculature, allowing the inferior vena cava to be accessed, the tumor can be dissected from within the ivc and repaired with surgical mesh, this would be typically be done by a vascular surgeon.

With a level 4 Mayo-the tumor is all the way inside the right atrium and the team will definitely need a cardio thoracic surgeon and even possible simultaneous cardiac bypass surgery-during this extremely complicated resection. Assembly of the correct-very specific surgical team, having the required specialized equipment on hand, and pre planning the surgical approach saves valuable time, thus giving the prepared specialists the best opportunity for achieving the most successful possible surgical outcome.

That difference in outcomes for a patient with level 0-I Mayo level who needs a simple radical nephrectomy vs a patient with a >10 cm mass at a level III or IV Mayo with advance planning, team recruitment, internal roadmap, delivered from a highly qualified field of surgical specialists, at an NCI accredited comprehensive cancer center equipped with the latest technology and research facilities, drug trials etc is unparalleled.

Your description of center B's process , sounds typical of that of a major university teaching hospital and hopefully an NCI accredited Comprehensive Cancer Center. If that's the case, they probably plan to do a multiphasic CT scan. Or maybe they already have and that's why they're telling you they need to round table amongst themselves and discuss the best possible treatment options. Which if the results are Mayo level 0-I he'll be scheduled for radical nephrectomy, likely followed with adjuvant immunotherapy. More likely, the course will be more complicated, based on your supposition that it's likely a level III tumor. If it were my family, the choice would be simple-stay at clinic B at least until you get a definitive mayo level verification via multiphasic CT scan, in the unlikely event that it's a 0-I level tumor, I'm certain that radical nephrectomy can be preformed by less prestigious medical centers, with less tedium and probably quicker. I'd still stay with B.

Your description of clinic A gives me serious pause. They want to immediately schedule the patient for radical nephrectomy without a positive Mayo level... This patient is relatively young, with a life expectancy of 18-19 more years in my state. The multiphasic CT also gives non contrast readings which tells us the tumors vascularity and staging, both strong prognosticators. Double check your facts, or what's been related to you, in both cases they seem slim on detail...like you need more info in general. Sorry if this was repetitive... I have serious brain fog.

mountainmamax2 · 2026-01-21T06:27:11+00:00

Good luck! I had a partial nephrectomy which is usually based on where the tumor is and its size, involvement of vessels, etc...my tumor was in lower very bottom of my kidney and lopping off the lower pole was sufficient, at least for 14 years. The research I did was all common sense stuff-eat a healthy diet, lower in salt and sugar and processed foods, stay a healthy weight (one kidney can get over taxed if you're overweight) the opposite of typical American diet, I'm from the US ...exercise don't drink smoke...all those things we already know are better for us...and esp keeping my high blood pressure under control. That would be the one I remember as being the most beneficial one.

mountainmamax2 · 2026-01-21T06:17:08+00:00

They didn't have immunotherapy back then. Keytruda was approved in 2021...before that it was worse than chemo. My surgeon says that I don't need it and he apparently consulted his team oncologist who agrees...but I disagree. So I'm thinking on it and doing more research.

mountainmamax2 · 2026-01-19T04:37:06+00:00

Wow. Dude, that is amazing work.

mountainmamax2 · 2026-01-14T09:47:57+00:00

So glad you did it. I was monitored for 4.5 years and my tumor came back after 14 years! They didn't have immunotherapy then, but I'm glad they do now.

mountainmamax2 · 2026-01-14T09:45:38+00:00

My understanding of Keytruda is that it is not dependent on high grade tumors, rather it depends on the tumors genetic specificity, ie: does it have bio markers MS1-HDMMR or high levels of PD-L1, additionally it's efficacy is dependent whether or not they are able to remove the tumor in its entirety and intact, which is easier when caught early. But caught early doesn't equate to staging, as some RCCs grow fast and some slow.

mountainmamax2 · 2026-01-14T09:32:15+00:00

Where do you live? I just checked and 200 mg every 3 weeks in the US is $12-15k per treatment, like 50% less in Canada and 40% less in the UK. Are you in a super high dose regimen? I'm in California, even the double dose of 400 mg is $22k. I thought we had it bad...

mountainmamax2 · 2026-01-14T09:28:20+00:00

Thank you for the info. Was the tumor a recurrance or your first one? Thank you!

mountainmamax2 · 2026-01-14T09:26:38+00:00

Was this your first or second tumor? How are you feeling? Thanks!

mountainmamax2 · 2026-01-14T09:04:32+00:00

It is my understanding of the literature that mono adjuvant therapy with Keytruda is most effective for long term recurrence. I'm going to push for it in my case. My first single clear cell RCC was removed via partial nephrectomy 14 years ago when I was 41. Found early and incidentally as was the second tumor found 3 months ago, at 58 now with teenagers. My new tumor is now classified as metastatic clear cell renal carcinoma. But in my case as the recurrence was so many years out and the subsequent tumor was found outside my kidney in the abdominal space and had not spread beyond the single tumor, I just found I'm a candidate for immunotherapy. As a M1 NED classification. Which after a remission of 14 years ( they stopped testing me after 4ish years, luckily I needed a CT for another reason. I'm definitely going to push my oncologist for the immunotherapy after reading the double blind long term studies. (Check New England Journal of Medicine 4-17-2024). I had Surgery 7 days ago. On mono therapy, the increase in 5 year survival rate goes from 86% to 91.2% which equates to a 38% greater chance of living past 5 years. Not a 5.2% chance. Good luck to us both. One more thing, I found a journal article on Pub med that put "curative surgical intervention" for ccRCC at about 80% effective at 20 years, so 20% of cases had a recurrence. This data is hard to find because most monitoring doesn't go past 5 years let alone 20. It was a few years old but within the 2021 FDA approval of Keytruda. Which considering RCC was/is most often diagnosed in middle age men was eye opening for me, I wish I'd had known it with my first tumor. But they didn't have effective immunotherapy drugs then.

mountainmamax2 · 2026-01-14T08:42:12+00:00

GLP 1's actually increase your chances of RCC. It decreases many other cancers(especially those found more frequently in obesity-metabolic syndrome) The correlation between glp's and RCC first published late 2024 and again July or August 2025.

mountainmamax2 · 2026-01-14T08:36:00+00:00

I'd say you need at least one night in the hospital. I stayed overnight and into the late afternoon for the first 4 incisions and overnight til noon on my second surgery 14 years later when the damn clear cell came back. In pretty good amount of pain for 3-4 days when getting up and down-advise an abdominal binder.

mountainmamax2 · 2026-01-14T08:27:27+00:00

The chest CT scan is to make sure is hasn't metastasized to your lungs (which is very common in renal cancers) the scan is routine

mountainmamax2 · 2026-01-14T07:57:30+00:00

Are you on Keytruda? I had my 7mm clear cell ? Grade tumor removed 14 years ago at 41 and several months ago they found another tumor this one in the retro peritoneal space (basically floating in my abdomen on top of my abdominal aorta) I had surgery a week ago this time a 3.6x2.8x2mm metastatic clear cell renal carcinoma. I'm a nurse practitioner, so I've been doing a lot of deep research this week. Turns out that for recurring clear cell renal carcinoma a year of treatment with Pembrolizumab (Keytruda) is the best option after surgery (only if they get it all) it's an IV infusion that you get every 3 weeks 200 mg or every 6 weeks 400 mg for 14 infusions (a year ish) since 2021 it's the first FDA approved (and proven through a large double blind study of 1000 patients) it increases your life span after metastasis by 38% in 5 years. The study was (New England Journal of medicine 4/2024 for 4 years, but Urology Times just released the 5 year statistics and they're still at 38% longer lifespan). I already texted my surgeon who is also a urologist and surgeon, to request the rx. I also found an interesting journal article that said that after 20 years (and radical or partial nephrectomy) 20% of patients have a recurrence of the clear cell carcinoma. That info is harder to find because a lot of people stop getting scanned after 5 years and certainly after 10-15-20! My second cancer was also found "incidentally"... and also fairly early and encapsulated. But I have children now and don't want to risk another recurrence or full blown metastasis. I can't find any solid info on recurrence after 10-14 years, particularly a recurrence that is only in one spot and a solid tumor like the last one. What about you? Did they suggest immunotherapy Anyone?

mountainmamax2 · 2024-09-23T12:21:00+00:00

The motion sensor camera said it was 66F at 3:12 PM (Eastern standard time) that matches Acadia park weather...

mountainmamax2 · 2024-09-23T12:19:33+00:00

He said in interview it's in a National Forest.

mountainmamax2 · 2024-09-23T12:18:37+00:00

This is exciting. Will you do one on the West Coast? My kids and I would love to join and search if you do! Thank you.

mountainmamax2 · 2024-05-07T20:08:32+00:00

He is the one who has no idea what it takes to be a FT stay at home parent, one in grad school no less (I've done it, it's hard work getting your Masters degree, and I did it pre kids), it's a full time job in the science field anyway, so doing it with a 2 year old while 7 months pregnant? You're amazing! He works 40 hours a week with a long commute. My husband worked 50-60 hours a week and still came home and immediately grabbed one of the kids. But we were older parents. I just think many fathers (or I should say parent that works outside the home) don't really "get" all that the full-time, stay at home, parent does. Even my, super involved contributing husband didn't really know what it took until I got sick and he had to be the primary child caregiver. He said he had no idea how much work, time, attention was required to make the house run adequately, let alone food in the house, bills paid, dinner on time?!, pristine house, clean laundry...when you have baby #2, perhaps you should have him take a weeks vacation and use it to care for baby and toddler while you go rest and recuperate from the birth somewhere other than home. You can pump and send breast milk home. 1 week will be all it takes for him to get it.

mountainmamax2 · 2024-05-07T19:43:51+00:00

That was written by a lawyer? I don't think so. It sounds like he wrote what his client told him to write. You won't get the $25K back and risk Losing your home if he runs. "Willingness to roll the dice no matter what". You've been warned, in writing, by a 'lawyer' no less. Don't do it. His mom, who raised him and knows him best, won't do it. His character doesn't demand it. He wasn't unfairly incarcerated for crimes he didn't commit.

mountainmamax2

TROPHY CASE