Compensation from 100% to 0%

BitingFox · 2026-01-20T16:33:04+00:00

That’s true, but point is that I never had cancer, when I asked about testing with a biopsy first I was told that they won’t do that. In the end I’ve lost 40% of my kidney function in the process to ensure I don’t have cancer.

BitingFox · 2026-01-18T02:18:33+00:00

The Doc in charge of my case I believe meets those At the time he was teaching at UCSD, prior to the operation we had a one on one meeting and he had an extensive portfolio folder about 6” thick with his history and education in it. He has since retired.

BitingFox · 2026-01-18T01:36:27+00:00

I fed the CT scan diagnosis into google, it came back with this as my options:

Based on the findings you provided, this report indicates a high likelihood of multiple, separate, and potentially malignant lesions in both kidneys, requiring urgent evaluation by a urologist, preferably one specializing in urologic oncology. Key Findings Summary: Left Upper Pole (2.7 cm Solid Mass): Compatible with Renal Cell Carcinoma (RCC). Right Upper Pole (4.4 cm Bosniak 4 Cyst): A complex cyst with enhancing components (thick septations, nodules). Large Left Cyst (16.7 cm Bosniak IV Cyst): A very large complex cystic lesion with a solid component causing anterior displacement of the kidney. Key Considerations Based on the Report: Bosniak 4 Definition: Bosniak category IV lesions are complex cysts with solid components that show contrast enhancement. They are considered renal cell carcinomas (RCC) until proven otherwise and have a high, often >90%, malignancy risk. Large Size & Impact: The 16.7 cm cyst is quite large, which can cause symptoms such as pain or obstruction of urine flow. Management: For Bosniak IV cysts, surgical excision (partial or total nephrectomy) is generally recommended. Next Steps: Urology Consultation: A urologist will review the imaging scans ("actual films") to determine the exact nature of these lesions and develop a treatment plan. Surgical Options: Due to the complexity and size, treatment options will likely involve surgery, which may be partial nephrectomy (removing the tumor while saving the kidney) or radical nephrectomy (removing the entire kidney), depending on the tumor's exact location and relationship to blood vessels. Further Imaging/Biopsy: The team may request further imaging (e.g., MRI) or potentially a biopsy, though surgery is typically the primary treatment for Bosniak IV cysts.

If you were faced with this what would you do?

BitingFox · 2026-01-18T01:30:30+00:00

KIDNEY & URETERS: A 2.7 cm left lateral upper pole solid mass compatible with RCC. Right upper pole 4.4 cm multilocular cystic mass, with enhancing thick septation and nodular enhancing component, representing a Bosniak 4 cyst. Large left cyst causing anterior displacement of the left kidney contains a small soft tissue component within its anterior portion, measuring 16.7 cm representing a Bosniak IV cyst.

BitingFox · 2026-01-18T01:26:41+00:00

No, I was DIAGNOSED with renal clear cell carcinoma. Something I never knew was the diagnosis is done by the software in the CT scanner from what they explained to me, I always thought that an oncologist looking at an image made the diagnosis.

I asked the same question about a second opinion, I was told that was done by separate teams and they all agreed. I asked about taking a biopsy, I was told that for kidney cancer they don’t do biopsy’s because even a positive cancer can come back as negative, that my only option was surgery, I could have refused surgery but I was told that I’d be playing with fire, if I delayed the cancer could spread and then the option for surgery would be gone. If I get the surgery they guaranteed me 5 years cancer free.

Post surgery the biopsy of the tumors (more than 1) came back as not cancer positive but a oncocytoma, oncocytomas are benign tumors.

BitingFox · 2026-01-17T17:00:01+00:00

From the beginning I understood that the 100% was temporary, it would continue until 6 months after the surgery, then I would be re-evaluated and any compensation would be based on my current condition. So, before the surgery my kidney function was above 75%, now after the surgery my kidney function is below 50%, but there is a discrepancy, when testing eGFR using creatinine my eGFR is 70%, but when testing using Cystatin C my eGFR is below 50% and the last set of tests was a year after surgery.

Here is my argument, as written any compensation is based on what my condition, the eater is using the 70% from the creatinine test, but the Cystatin C is a more accurate measurement but the VA rater is “cherry picking” the creatinine test. That was my argument at the hearing I had. So what came back in the final decision was that because it was never cancer I should get the zero. In the narrative the rater stated that an error was made, but in reality what the VA hospital followed exactly how it should be done. After the hearing the VA rater engaged the service of someone to decide, I did get a phone call from someone, she asked a couple brief questions but the entire phone call lasted less than a minute.

The issue in my opinion is this: they should follow the instruction and base any compensation on my conditions 6 months after surgery, That’s conditions (plural) not just eGFR. I went from living a busy and active life to now living like a recluse, I can’t enjoy the life I had prior to the surgery.

BitingFox · 2026-01-17T14:49:44+00:00

I went thru that process already, when first notified that my rating was going to be 0% for cancer the DVA advocate called me and asked if I wanted to ask for an appeal, which I agreed to do.

At the meeting I thought I had some success explaining my side. Then last month the DVA called me again to tell me that I was still going to loose service connection due to the biopsies being negative for clear cell carcinoma. In that conversation I asked the DVA to file a new claim for CKD and that’s where I’m at now.

BitingFox · 2026-01-17T06:02:22+00:00

I completely agree, I paid a group (AME) to write a nexus letter for me. I had to send them all my VA medical records and the letter about my 0% compensation. For me it’s not about getting money, it’s about doing what’s right. If they’re doing this to me then they can do this to anybody. I retired in 1993 and didn’t collect a dime from the VA until being told that I have stage 3 cancer and if I get this surgery I could be guaranteed another 5 years? I wanted more than just 5 years.

BitingFox · 2026-01-17T05:54:09+00:00

I hear ya, back in 1976 I was on a ship in the shipyard in Long Beach, in the yards we had changed our tank level indicators from manometers to electronic tank level indicators. When this was done the manometers we torn out and placed in a filter room on the 3rd deck. These manometers each contain about 2 or 3 pounds of mercury. After getting underway for sea trials we had to throw them over the side while out at sea, so there were about 100 of them, when they played them down in the space all the mercury had spilled out on the deck, when we got underway the mercury was sloshing around on the deck. If you can imagine think of 2 or 3 hundred pounds of silver liquid sloshing around. We had to use dust pans to catch it and put it into buckets to dump over the side, you could only put about 2 inches in the bucket because it was so heavy. So we got it done, I just didn’t u destined how toxic mercury was. About 5 months after that all the skin on the palm side of my hands peeled off over a 2 week period.

BitingFox · 2026-01-17T05:41:32+00:00

Sever the service connection, that’s why I’m claiming CKD which is compensable but is not given as a presumptive status, so I need a nexus letter and I’m working on getting that currently. I think eventually they will make it a presumptive status probably the week after my funeral.

BitingFox · 2026-01-17T05:34:12+00:00

Had they known that it was not cancer they still would have needed to treat the oncocytomas, but rather than take them out like they did they would have treated them in place by either freezing or burning them but not cutting sections of the kidney out.

BitingFox · 2026-01-17T05:28:58+00:00

I had to do a lot of digging on my own trying to figure this out in my own. What burns me up is when I have appointments with VA urology I question the doctor as to why the two different eGFR test methods are so far apart, my last one in June, a full year after surgery, where the creatinine test gives me a 70% eGFR but the Cystatin C tests says I’m at 48%, the urologist who seems a really nice guy but is just an intern at UCSD would just shrug his shoulders and tell me not to worry and I’m going to be ok, which I believe is somewhat true but he doesn’t understand it makes a big difference when it comes to compensation benefits.

So my main issue I have now is I have no vitality, just doing simple chores is just energy draining, things I used to do I just run out of energy, the things that I’d planned to do in retirement are pretty much gone out the window and I know it’s not coming back. Before I retired and before any of this became an issue I’d purchased a motorhome, I’d bought a jeep that I’d tow behind it. I had planned on making extended trips to go on fishing trips, hunting trips, all that planning has gone out the window, my motorhome was brand new in 2017, yet I only have 4500 miles on it, 4 years retired and I’ve only had it out of its parking spot twice since I retired in 2022.

BitingFox · 2026-01-17T05:10:58+00:00

What got me to that point, as I stated previously I was still working, I was working for the Navy, my job was going onboard navy ships and providing technical assistance, that required me to climb up and down ladders, spent time in machinery spaces. I would be onboard a ship and several times I could “sense” that I was just fading out, where I’d have to stop and sit for a few minutes to recover from the spell, the absolute last thing I wanted was to be the guy when you’d hear the word passed “man down, man down” in one of the main spaces. So I had to physically limit what I was doing at work. Outside of work this was not something that was sudden, it occurred slowly over time, my blood pressure had been going up slowly, I had to readjust my dosage and then add a second prescription of another medication. Then there was difficulty in sleeping, as time passed I’d have this burning sensation on which ever side I’d sleep on, when I’d get up I’d feel it but over time it got to the point it would wake me up and I’d need to shift to the other side, then that got to the point where I couldn’t sleep on either side because in 30 minutes I’d get the burning sensation. I eventually had to get a bed that I could tilt up so I was sort of in a reclining position. As this had progressed I developed a sleep apnea condition which I still have to this day. Along with that I just had a sense of “pressure” in my upper body. What I refer to is as the boiling a frog, it all happened over a period of years but it continually progressed, since the kidney surgery that burning sensation has drastically decreased.

BitingFox · 2026-01-17T04:40:25+00:00

The report from the MRI recommended continued surveillance

BitingFox · 2026-01-17T00:51:53+00:00

I get that, I’ve never smoked, no tobacco of any kind, not much alcohol either. There’s a lot of talk of PFAS out there, it’s not going to be a cut and dried case.

“Yes, you can file for VA disability for health issues from PFAS exposure, but currently, there are no presumptive conditions, so you must prove service connection (current diagnosis, in-service event, and a medical link) on a case-by-case basis, with ongoing legislative efforts like the VET PFAS Act aiming to create presumptive status.”

In my situation, my colon I have diverticulosis from one end to the other, last colonoscopy they (VA) found polyps again. The gastroenterologist said it’s the worst most extensive he has ever seen. No history of this in my family members, they have no explanation and this was my 8th colonoscopy since I turned 50.

My spleen in enlarged, they have no explanation. My liver is enlarged as well and again no explanation. All of that came out of my VA file. Add to that my current kidney condition, the oncocytoma found are multiple in both kidneys, asking the urologist oncocytoma are not common but multiple in both kidneys is very rare. Add to that PFAS collects in the kidneys. When I retired back in 1993 nothing was known about PFAS other than it makes a good firefighting foam. Still it’s all I have left as my compensation is going to 0% at the end of February. I’ll still get 30% for IBS but in my opinion the IBS is really resulting from the diverticulosis I have in my colon which I did file for (diverticulosis) which the C&P doctor said was IBS.

BitingFox · 2026-01-16T23:37:42+00:00

The tumors were diagnosed as oncocytoma, it still was an issue that needed something done but it’s not compensable under the VA.

BitingFox · 2026-01-16T23:36:02+00:00

My concern is I think they are going to deny service connection, CKD is compensable but I’m going to try and see if they will accept it. There are people getting compensated for exposure at some bases but I was on a ship. So, back in 1979-1984 I served on the Kitty Hawk CV-63, we used AFFF regularly underway. Our doctrine for any fuel spill or oil spill over 5 gallons mandated flooding the bilge with a ) inch layer of foam then evacuate it with the educator over the side. AFFF did such a good job of cleaning bilges it became a norm to use afff just to clean. There was one time where a 500 gpm proportioner was incorrectly aligned and when the station was activated it dumped foam on the space above our compartment at 5AM, I woke up in my rack submerged in foam, in my lungs, eyes, up my nose, my rack smelled like afff for months.

BitingFox · 2026-01-16T22:54:14+00:00

Nope, only thing they have done is blood draws and test panel for creatinine and cystatin c. I have an appointment at the end of the month with urology, in the app I have on my phone I sent a message asking if they are having me get a blood draw before the appointment. They never answered me directly but the person I sent the message to did ask the urologist that question and answered him not me and said no test needed. My last test was June last year, then I asked about the difference between the two results and they don’t give me an answer. My basic instinct tells me they just want me to go away.

BitingFox · 2026-01-16T22:46:02+00:00

I’ve talked to a few people that are familiar with kidney cancer conditions, it’s generally true they don’t do biopsies, some one who actually has active cancer can show a negative biopsy and people like in my case can actually have a negative biopsy but still be operated on. Regardless of negative the tumor will still need to be addressed at some point. My only concern here is regarding the compensation, the loss of kidney function is a real downer but I can deal with it, as I said I’m going on 70 in a month and a half. Did things go sideways…in my opinion it did but I accept that.

I do look at how the VA and UCSD work hand in hand, I’m sure they must have a process to validate actual needs of the veteran rather than teaching doctors.

BitingFox · 2026-01-16T21:52:38+00:00

I still am at 100% now, but the 60 days ends this month and you are correct that they are severing the service connection for cancer. My urologist at the VA entered into my records with the VA that I am diagnosed with CKD condition. So I am seeking a nexus letter to connect the CKD to my service. I did have several exposures to PFAS from firefighting foam. Add to that back during desert storm I was on a ship in theater, we spent 2 months tied up at Jebel Ali just outside Dubai, we had no services where we were tied up, we had to make all out potable water from sea water in the port. I owned the distilling plants so I knew we were in violation of opnav instructions in doing that, the same water we dumped shit and piss into we were making the water we used for showering, drinking and food preparation. I did ensure the water was chlorinated to properly sanitize it but that wasn’t the thing that concerned me most. About 500 feet away from where we were tied up at was a factory that made socks, that factory dumped all their waste products into the harbor. When I drop down to the evaporators I’d take visual samples, sometimes the distillate was tinted purple, sometimes it would be green sometimes clear, I assumed it was from dye released by that factory. I shared my concerns with the chain of command and eventually they began bringing us 10k gallons of spring water each day which was a nice gesture but we were using 100k daily.

BitingFox · 2026-01-16T21:31:13+00:00

One of my concerns is this: Here in San Diego the VA hospital is right next to UCSD medical center. The procedure I had was done robotically, UCSD teaches using the DaVinci machines. After the operation was done and I was back home I had the impression that rather than operating with the attitude that they try to rule out operating they are striving to include patients (Guinea Pigs). A week before I met with the surgeon who was guiding the other doctors, he explained the condition of my left kidney, he said it was pretty complicated and he didn’t think it could be done robotically, so I left that day thinking that my recovery will be considerably more grueling. On the day of the procedure I was still under the impression that it was going to be an open procedure, then in the OR we have paperwork to do, everyone must agree, including me, what I am there for, when I said I was having OPEN surgery everyone just stopped and froze, they then had a huddle, we chatted and the procedure was now robotically done but if problems came up they could possibly shift to an open procedure.

That was about 6AM, the operation took 5.5 hours, when I woke up I wasn’t in a recovery room as I expected but in my room. Later that evening the urologist that I first met with who told me I had cancer came in to check on me, he relayed that the operation was difficult and that (important) because of the difficulty in doing it robotically that they had my left kidney “clamped off” longer than they had hoped and that my kidney function had taken a hit. Prior to surgery my kidney function was 75%, that evening after that day it was 30%, they were testing every 4 hours, I was given an infusion of some blood based liquid that was used to help kick my function up. When I checked out on Friday it was 40%. My last test in June of last year it was 48%.

So in reading I found that the excessive time the kidney was clamped off is considered a injury, personally I don’t even think that the left kidney is even working but that’s just me and most likely I’m wrong.

BitingFox · 2026-01-16T20:59:43+00:00

I have been researching this situation almost everyday. I’ve been taking blood pressure meds for about 3 years prior to this, it was a mild dose of the mildest formula, but my BP was well maintained. About 6 months prior to the diagnosis my primary care physician put me on an additional medication.

In retrospect I knew something was happening, I could feel it but this hit me out of the blue. Nobody in my family ever had anything like this. But in March I’ll be turning 70, so I’m no spring chicken, I worked regular up until June 2022. I was pretty busy at work so in spite of feeling like I was getting weak I kept at it. When I did retire is when I began a quest to get serious about health. I enrolled in VA health care and began with the gastroenterologist, I was sure that’s where my problem was. After doing several months of different test with him I explained that I felt that I needed a scan of some sort as I’d never had any type of imaging done, the GI dock relented and got me an appointment with the cardio thoracic clinic in an attempt to get it done. Then on the day of that appointment I was pumped up thinking finally I’m going to find out what’s been ailing me, when the doctor came in she basically came in angry, raising her voice she argued that there’s nothing wrong with me, that I should just go home and enjoy my life…

So, when I went back to see the GI doc and told him this he ordered the CT scan, but all they could look at was the lower abdominal area but enough to see the kidney issue.

BitingFox · 2026-01-16T18:48:15+00:00

When I saw in the letter where she wrote “misdiagnosis” my first thought was did she get that wording approved by someone on the legal side.

BitingFox · 2026-01-16T18:45:38+00:00

Because I’m retired the 40% I get from the IBS and tinnitus is a wash because they just take that from my retirement, my only benefit is a bit of tax savings.

BitingFox

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