Questions to ask the Oncologist for u... - Advanced Prostate...

Advanced Prostate Cancer

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Questions to ask the Oncologist for upcoming visit tomorrow!

HarGreg profile image

Hello, I am new to the site! Age 65. Was diagnosed in January 2020 with prostate cancer. T2a Gleason 7 (3+4) PSA 5.71 Robotic Prostatectomy done 6/13/2020 by Dr. Ash Tewari at Mount Sinai. One year of undetectable PSA, then rose to 0.1 in 11/2021. I had a flare up of diverticulitis in 12/2021! My GP ordered a CT Scan with contrast that showed a swollen iliac lymph node in the pelvic region, so ordered PSA that came back 0.2. I am seeing a Radiation Oncologist tomorrow in my area, Dr. David Hauerstock. Can anyone tell me what questions I should ask and what treatment is the first line of defense? I am including a photo of the Pathology Report . Any advice would be greatly appreciated! and thanks to all the people and information on this site.

23 Replies

What makes you think that this swollen iliac lymph node is due to prostate cancer ? I think its more likely due ti diverticulitis (inflammation of colorectal area) PSA 0.1 or 0.2 is insignificant finding unless PSA keeps rising continuously for next 3 to 4 times.

HarGreg profile image
HarGreg in reply to LearnAll

Thank You for the info! Could diverticulitis cause PSA to be elevated? This is what I was hoping!

LearnAll profile image
LearnAll in reply to HarGreg

Fluctuation between PSA 0.1 and 0.2 does not matter. What really matters is a steady upward trend for 3 to5 times. Any inflammation in prostate tissue or nearby area can cause minor fluctuation in PSA. Prostatitis is well not cause on increased PSA.

I would try to get a PSMA scan to evaluate. I think the scan would be helpful in determining cancerous lymph nodes versus reactive nodes.

HarGreg profile image
HarGreg in reply to Bkraus1

Thank You for your input. Do you know where a PSMA Scan is available in the North East?

DarkEnergy profile image
DarkEnergy in reply to HarGreg

Dana-Farber, Boston is one example...

HarGreg profile image
HarGreg in reply to DarkEnergy

Thank You

HarGreg profile image
HarGreg in reply to Bkraus1

Thank You Bkraus1

Go to PYLARIFY website and see what’s closest for you. This was recently FDA approved and more centers are offering. Has much better sensitivity in diagnosing metastasis than bone scans or CT. You need to know where the PSA is coming from.

HarGreg profile image
HarGreg in reply to Bkraus1

Hello Tall_Allen, Thanks for the great info, As far as side effects! everything has been great, No pads! No problem with erectile dysfunction! Everything has return to almost 100% pre RP. I am experiencing some of the same discomfort in the pelvis buttock region as when first diagnosed. That's the kicker, everything has been going so fine! can you tell me what are the important questions I should be asking the Radiation Oncologist? PS I do not live in the NYC region! I'm in upstate NY. Thank You Much

Tall_Allen profile image
Tall_Allen in reply to HarGreg

I thought you were at Mt Sinai. I would encourage you to look into treatment at MSK or one of their affiliates participating in that clinical trial. I laid out below topics to discuss. Also ask about side effects from the radiation and from long-term ADT.

That is one of the clearest laid out pathology reports I have ever seen. And Ash Tewari is certainly a master. How are your side effects - incontinence? erectile dysfunction? If they are still troublesome, you may wish to start ADT now to give yourself more time for healing before radiation begins.

What the RO will probably recommend is salvage radiation to the prostate bed and the entire pelvic lymph node area. The dimensions of the radiation area has recently been expanded. I'm sure your RO is aware of it, and you may wish to bring it up. There may be anatomical reasons why the expansion may or may not be good for you in particular:

prostatecancer.news/2021/05...

The RO will also give you an extra boost of radiation to the enlarged lymph node. To be sure, it is a good idea to get a PSMA PET scan to find any other lymph nodes that may be too small to show up on a CT scan. Mount Sinai ( as well as several other hospitals in Manhattan) now offers the "Pylarify" PSMA PET scan. It is covered by Medicare.

There is a clinical trial now at Memorial Sloan Kettering (Craig Grossman) to test this strategy for men with exactly your situation. You may wish to get in on it. Here are the details:

clinicaltrials.gov/ct2/show...

There is every hope it will be curative.

Fred312 profile image
Fred312 in reply to Tall_Allen

With the Pylarify scan, does being on ADT reduce it's sensitivity? In other words, scan first then ADT or ADT then scan is ok?

Tall_Allen profile image
Tall_Allen in reply to Fred312

Detection is very PSA dependent, it would be detected only in a minority of cases where PSA≤0.2.

For about a month, maybe two, ADT may actually increase expression of PSMA on the cancer surface, making the cancer more detectable. After that, it reduces expression of PSMA, making the cancer less detectable.

HarGreg profile image
HarGreg in reply to Tall_Allen

Thanks, When I typed the rising PSA it is actually 0.2.4

Tall_Allen profile image
Tall_Allen in reply to HarGreg

metastases with rapidly rising PSA often show up, even when the PSA is low. Here's the Pylarify site locator:

pylarify.com/site-locator

HarGreg profile image
HarGreg in reply to Tall_Allen

Thanks for that site! Albany and Burlington sites are not that far for me. 3 hours max

HarGreg profile image
HarGreg in reply to Tall_Allen

Good Morning Tall_Allen, Had the visit with my RO on Wednesday! He reviewed the CT Scan that showed the swollen iliac lymph node and said it wasn’t cancer and could be resulted from the surgery? I hope he’s right! Also will call today for the latest PSA results? If treatment is needed? He will contact Dr. Tewari’s office for there recommendations going forward with treatment. Is there any reason why I shouldn’t have treatment done locally? or should I go back to Mount Sinai or some other cancer center? The problem is NYC is 6 hours from my location. The RO Dr. Hauerstock seems very good, answered all my questions and is open to my thoughts! Thank You for the Pylarify site for locations near me! Hope the scan is covered by Medicare? No sure if or when I will be needing it? Thanks

Tall_Allen profile image
Tall_Allen in reply to HarGreg

It's easy enough to see if the enlarged LN has cancer. You are recurrent after RP, so you qualify for Pylarify now. It is covered by Medicare. If you do that first and can rule out cancer in pelvic LNs, you can get your SRT anywhere. If it isn't benign, I encourage you to think about that clinical trial.

HarGreg profile image
HarGreg in reply to Tall_Allen

Thanks for your reply! RO was talking about 3 months ADT and then 6 weeks of SRT if my PSA rises. Should here back on the PSA today. Also if ADT is the first part of my treatment? Should PSMA Scan be done first? Can I ask why, would this clinical trial be important for me? Thanks

Tall_Allen profile image
Tall_Allen in reply to HarGreg

PSMA expression increases during the 1st month of ADT, but decreases thereafter.

The clinical trial may provide hormone therapy enhancement that you otherwise would not be able to get. Even if you are not randomized to get the intensified hormone therapy, the ADT+SRT you would receive are usually top notch on a clinical trial. But it is only if the LN is positive.

HarGreg profile image
HarGreg in reply to Tall_Allen

Thanks again for the great info and have a nice weekend!

First question: How much do I owe you doc?

Second question: Where can I catch the subway or bus to MSKcc?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/12/2022 7:36 PM EST

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