New Patient... treatment through the VA what can I expect..

Just recently diagnosed. My PSA was 4.9(5.9 wrong # given by primary dr) but not sure about any of the other indicators, really new. They are scheduling my CT and bone scan. My care will be through the VA and I really am just wondering what I can expect with support through them. They've scheduled the CT and Bone but will VA do a PMSA PET scan also? and just how far will they go with treatment, will they out source at all. Can I get multiple opinions???

Post Edited (Michael Touchette) : 9/18/2022 9:47:40 AM (GMT-7)

don't remember if he gave me a gleason score. I've only had a phone consultation at this point where he called to tell me I was positively diagnosed and to tell me he needed further tests. No other insurance options.

Have you had a biopsy of your prostate? Biopsy samples taken provide the gleeson score, which tells how developed the cancer is.

Michael welcome to the forum sorry you need to find your way here.
The Gleason score on a biopsy it is an indication of how aggressive the cancer cells are it is a key finding that you really should find out. The score will be a major influencer on what type of treatment you decide on.

You should ask for a copy of the full pathology report. We can help you interpret it. Short story… Gleason 6 or grade group 1 is usually considered indolent and can be monitored carefully without aggressive treatment. Gleason 7 is considered intermediate risk, and Gleason 8 to 10 are considered high risk.
You can see how the Gleason score could affect treatment .

It’s also usually wise to consider getting a second opinion on the pathology, from Johns Hopkins they have a second opinion service that is run by Dr. Jonathan Epstein one of the world reknowned prostate cancer pathologists.

Others will add to this I’m sure. But for now the most important thing you can do is get a copy of the pathology report, and depending on what it says probably a second opinion from Dr. Epstein.

Surgeons business is to do surgery urologists are generally surgeons and that’s what they recommend. You should also speak to not only a surgeon with a lot of experience but also a number of radiologists who practice different forms of radiation. Each one has a specialty don’t take advice from a doctor on an area of treatment that he/she does not specialize in. this is a big business and you have to be your own advocate. Don’t follow the doctor is God theory, and just do what he says. Make your own decisions with guidance from drs whom you feel have YOUR interests at heart. I should emphasize that I believe most doctors are good people. It’s just that most of them practice a specific type of treatment because that’s what they believe in and they are many different opinions

Here are two good books worth reading with differing points of view, they are a good starting point to get educated…and I’ll leave it at that for now, so you don’t get overwhelmed..

https://www.amazon.com/patrick-walshs-surviving-prostate-cancer/dp/1538727471/ref=sr_1_1?crid=1scg71mg9gika&keywords=dr+walsh+prostate&qid=1663164356&s=books&sprefix=dr+walsh+prostate%2cstripbooks%2c51&sr=1-1

https://www.amazon.com/invasion-prostate-snatchers-essential-managing/dp/1635421861/ref=sr_1_3?crid=1irc0o0id7xxt&keywords=dr+mark+scholz&qid=1663164490&s=books&sprefix=dr+mark+scholz%2cstripbooks%2c66&sr=1-3]

Michael,
Here is a link that explains Gleason grades and scores and also a bit more about things you might see in a pathology report.

I've had prostate cancer for 20 years. I now get most of my prostate cancer care through Dana-Farber in Boston but also coordinate care with an oncologist and pharmacist at the Boston Jamaica Plain VA hospital. Dana-Farber shares my lab results every three months with the VA and the VA provides my prescribed Abiraterone (Zytiga), which would otherwise be very expensive under my Blue Cross Medicare Advantage pharmacy coverage. Every month I have a telephone consult with the VA oncology pharmacist when they re-fill my prescription.

Though I don't get my primary cancer treatment from the VA, they have been very accommodating and work well with my Dana-Farber medical team. From my personal experience I can't answer whether they will provide PSMA scans. But I would think they have them or would refer out for them if deemed needed.

In my own situation I've had a couple of Axumin PET scans at Dana-Farber. Though I expect they will have upgraded to PSMA by now. Each time my D-F docs had to justify to Blue-Cross that the scan was necessary and get approval for payment. Although you wouldn't have to pay at the VA, they may have a some kind of similar internal review process to get approval based on your pathology and your doctors' recommendations.

And though not the same thing, I get my dental and vision care through the VA and my experience there is top-notch -- equal to any treatment I had over the years with non-VA dentists and without the suspicion of "upsell" I've sometimes had with my former private dental practice. My VA dentist once went above and beyond to save a tooth that she said would probably need an extraction. Over three appointments she saved the tooth and put on a new crown. And in the midst of COVID, before there were vaccines. I had an urgent care appointment for a root canal on a tooth that was suddenly causing a lot of pain while chewing. The dental clinic was nearly a ghost town because they weren't doing routine care. I had a dentist and an endodontist all to myself for 3 hours and got the procedure done in one sitting.

And because I had a melanoma 35 years ago, when I go for my annual eye exam at the VA they always closely monitor a small dark spot on the back of my eyeball to be sure it hasn't changed shape or size. This and my dental experience suggest to me a high level of professionalism and competence.

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html

VA patient here. Nothing but good things to say about the VA. I was RALP'ed in 2016. At that time they didn't do MRI's for Pca at my facility, even after I mentioned it to my doc. Said it wasn't a proven method. No PSMA's back then that I was aware of. No idea if it's automatic now. Things change from facility to facility with time. But I felt the care was EXCELLENT at my facility. Active surveillance for 5 years until I pulled the trigger when the biopsy showed 3+4. I would just suggest you study up on all the available diagnostic tools and quiz your doc whether they are available through your VA facility. Good luck.

Gleason 7 (3+4) is an intermediate grade cancer. The significance of this depends on the specifics of your actual biopsy results, no of positive cores, percentage of cancer and Pattern 4 in cores. He may be correct or may be understating the situation. It may be barely cancer in his eyes but then you may not want to be barely dead in the future so you may want to have a full understanding of the results. Some are content to just listen to their doctors, the rest of us want to be part of the process since we are the ones with the cancer.

Get a copy of your biopsy results so you can fully evaluate and ask questions. It is not surprising that there was no interest in PSMA scan at this point if the situation is as benign as he thinks. Another biopsy in 6 mos seems pretty conservative and is just around the corner. He should be considering a MRI also as part of the AS process.

Gosh, in that situation I'd probably see another uro for a 2nd opinion. As a VA patient none of my uros told me not to be concerned about a 3+4. But then every patient's numbers are different and doctors give medical advice based on their experience, training and the numbers in front of them. I'm glad I pulled the trigger since I ended up with EPE. Does the VA offer MRI's in the diagnostic evaluation of Pca these days? I don't even know. But in my experience the VA provided great care. I was very impressed with the doctors and nurses in recovery after surgery. They kept me in recovery for 4 days before discharge. Better care than I've ever received in any private hospital. Bar none.

Michael - For reference, you are looking for something that looks like this that will have the summary of samples and results:

https://www.quantumpathology.com/website/wp-content/uploads/2017/03/prostate-biopsy-sample-report.pdf

There are many report formats but they all convey the basic information.

Thanks for the book recommendations... ordered! and reviewed the one page educating on Gleason Score. so he was referring to grade group 2. and told me only reason it hit two was because they found it on both sides. but looks like only one side showed up on MRI. he told me not to worry too much, but now listening to you I'm back to worrying. We had the meeting prior to him seeing the CT and bone scans. as well, after watching a few seminars on PSMA Pet/CT scans I'm wondering if I missed something.. anyway, I just need to wait for scans and biopsy results to better assess the situation.

What is the procedure to sending lab workups to Dr Epstein? is this a pro bono service he provides? if not costs?

https://pathology.jhu.edu/patient-care/second-opinions

All the info is here to get to your doctor and don’t worry. Lots of reading will whipsaw your feelings as you read good things then bad things and try to apply them all to your situation. No need to rush so take your time and acquire the necessary information for decision making.

thanks Mumbo.... $ 350. so cheap for a piece of mind. out of pocket=tax write-off and what is average cost of PSMA Pet/scan? did I hear right around 3000. or was I drunk at the time.............

VA will cover it IF your Dr makes the recommendation. And don't think you can just switch Dr's without moving to another area. I am dealing with the Urology dept. with many Dr's and one Head. the team did biopsy, by the head Dr is one I met with. So I am assuming at this time any other opinion is out of pocket. but not sure how it works. They are always sending you to Community Care. for instance, I was recommended by my primary to see the Dermatologist... they couldn't see me in the VA clinic within 30 days so they allow you to opt for Community Care. So, they then hook you up with an outside Dr. who in this instance was more than happy to cut off all my questionable moles and skin tags... and probably charging high dollar... my colonoscopy was done through Community Care, better procedure than VA gives... but not sure how wanting a second opinion would work through the VA.. any other vets out there know???