Low, But Rising PSA--Wait for Imaging or Act Now?

My husband has been a patient of Dr.Kwon since his first recurrence in 2011. In that time, Dr. Kwon has always insisted that my husband have imaging before any treatment decisions or the start of treatment. He also requires a wait of three months after any treatment for imaging to occur. We are scheduled to see Dr, Kwon soon, on May 6, with imaging the day before--three months after my husband's last radiation treatment. As you can see, the doctor is following that protocol to this day.

I would also caution you that Dr.Kwon does not answer email, even from current patients. The members of his team monitor incoming email messages from patients and answer the messages, after consulting with Dr. Kwon if necessary. His team is terrific--but I don't know if they will answer you if you are not a current patient.

Hope this helps.

Yours is the case where aggressive treatment may be the best treatment. You shouldn’t be seeing a doctor like Doctor Kwon, You have a very serious case with both Cribriform and IDC. You need to be monitored for the rest of your life so you can get the best treatment. I don’t know if you’ve done any searches about treatments for IDC plus Cribriform, I’ve done some research into treatments for it and there are none that are really showing positive long-term results.

This was discussed at one of the Online ancan.org Advanced prostate cancer meetings, a couple of months ago. There was a lot of frustration by the guys leading the meetings about the fact that they could not recommend any specific treatment they knew would work. There are always a few few doctors in the meetings. They were not able to come up with anything either..

You also have EPE which says that it has likely spread outside the prostate.

Dr. Kwon Was asked how prostate cancer spreads is it like a pebble being dropped into a body of water where the waves spread out and would prostate cancer would propagate the same way. He said no, it is a stochastic spread of prostate cancer that goes everywhere (Like dormant cells spreading before the cancer is even detected).

Dorman cells spread out throughout your body before they even have detected that you have prostate cancer. They hide in a way they cannot be seen by any known diagnostics today. If you have stress on your body, they can pop up and cause your cancer to reappear.

Dr. Kwon’s explanation about how cancer spreads throughout the body makes it even more likely that your EPE has allowed cells to get away from the prostate.

While a normal case of prostate cancer, that’s not too aggressive, can put off salvage radiation to see if metastasis show up. I’m not sure that’s really applicable in your case. Speak to some doctors about this, but not urologists maybe radiation oncologists but you probably need a GU oncologist to work with you?.

My husband has IDC and no BRAC 2 or any other inherited mutations. To be honest this is the first time I am hearing of this connection.
Also - there are 2 types of IDC with different aggressiveness and nobody is looking into that - one type has loose cribriform around IDC and the other more dangerous had a dense cribriform tissue.

All in all, any study I found suggests early salvage for high risk PC regardless of negative PSMA so my husband and me will stick with that recommendation.

I never found a single study that even looked into "wait and see" in this stage of cancer treatment - if you have any links could you please attach them here ? Thanks so much in advance . 🌺

I have always found Dr Kwon’s approach unsettling. If standard SRT to the bed and nodes is to be frowned upon, why then do so many men - including myself - see a dramatic DROP in PSA levels after treatment?
Surely, if there is undetectable cancer in soft tissue outside the traditional area of treatment, the radiation (with ADT in my case) would not affect it and PSA levels would be expected to rise…they don’t!
I’ve read of the different ways metastasis occurs - and they are all based on extremely complex (like paragraphs of Greek letters) mathematical formulae. The ‘stochastic’ model is bewildering to comprehend.
I have heard that pancreatic cancer spreads this way, in that once the tumor reaches a certain size, it is considered inoperable, as it has already micro - metastasized everywhere; which is why it is so deadly and carries such a high mortality rate.
But prostate cancer doesn’t - cure rates (long term remission) are incredibly high, so again, I wonder about Dr Kwon’s assertions.
Don’t get me wrong, he’s the expert, he’s the genius and his many papers prove his vast knowledge in this field, but with your pathology I personally would not waste any time in getting SRT with ADT. Your cancer has many factors which make it more aggressive.
Just my layman’s opinion, not medical advice.
Phil

@heavyphil Just to add, there ARE cases where the horse has left the barn, as evidenced by recurrences many years down the road, but they are not the norm.
I think members of this forum are exposed to a LOT more of these delayed recurrences simply because we’re ON the forum, not one of the millions walking around (or deceased) never having had a meaningful relapse and therefore have no need to be here.
Phil

Thanks for the quick comments and questions. I agree that this forum is one of the best sources of information I have found, since I started this journey.
The 3 studies cited by Dr. Kwon supporting delay are on the screen in the PCRI conference replay (https://pcri.org) at 3:55:26. The discussion starts several minutes earlier.
I am convinced of the seriousness of my situation and look for advice on how to proceed.
I will have another PSA test on 5/4. I have a consult at MSK in NYC on 5/6 with Dr. Nagur. I asked about getting a medical oncologist in that appointment but they said that depending on the hormone therapy needed, Dr. Nagur (an RO) will prescribe it himself or I will need a subsequent appointment with the MO. I have an appointment on 5/15 with my local RO, Dr. Greco at Johns Hopkins (I live in DC). I will ask for an MO at that appointment, but I expect the same answer. Finally, I will get a genetic test for BRAC2 on 5/21.
Do you recommend other actions? Can you point me to the institutions/Drs. with the most experience with my situation?
Thank you so much for your help and support

Ah yes, the conundrum, given the clinical data, what to do...!?

What do you know, well, GS, GG, you can calculate PSADT, PSAV, Cribriform, IDC..

There are other pieces of the puzzle which may aid in making a decision, Genetic Testing, Imaging...

You may be looking at two choices, doublet or triplet therapy.

Most think of triplet therapy as ADT+ARI+Chemotherapy. The literature I've seen about chemotherapy points to of use more in high versus low volume PCa.

The third part of triplet therapy could be radiation, ergo imaging may be useful
In informing that decision.

You'll have other decisions about treatment, which ADT agent, which ARI, how long, 6-36 months, given your clinical data, on the right side of those numbers.

I'm going to disagree with @jeffmarc about "you shouldn't be seeing Kwon.." we should not ever be telling you what to do or not to do or who to see or not see. We can discuss our experiences, share the knowledge we have gained, point you to articles to read that may be relevant to your decision making...

There are a myriad of choices besides doublet and triplet, ARI monotherapy, Estrogen as in the PATCH trial, heck, there are trials showing "success" bringing LU177 forward in the HSPCa space.

It would be great if there could be consensus on what you should do. As the answer from this forum show and you will find from discussing with various medical specialists, the only consensus you may find is, you need treatment...!

I'll close with what would I do if it were I!?

I would do the triplet therapy, yes chemotherapy. My ADT would be Orgovyx, my ARI would be Nubequa, I would include radiation based on imaging, that would include not just the sites identified in the scan but the entire PLN system.

As to the side effects of radiation, well, 69 treatments, SRT, WPLN, SBRT, 155 Gya, side effects, none. Then again, I've got a pretty good radiologist. My wife agrees but says being a cantankerous sort plays a role.

My starting duration for systemic therapy would be 36 months and adjust, de- intensify, based on my response to treatment.

That's me though, I am not you.

As an aside, I did triplet therapy in 2017 after consultation with Dr. Kwon. We didn't use an ARI though but radiated the entire PLN system with boosts and wider margins to the locations identified in the C11 Choline scan. That brought a five year remission.

Kevin

@bikeman1
John Hopkins has some really great doctors. If you can connect with Dr. Channing Paller she is a really Great GU Oncologist You could not be doing any better elsewhere. I know a few people that have been treated by her and they All recommend her highly. She talks at some of the conferences as well.

Many times when I’ve attended weekly ancan.org Advanced prostate cancer meetings they have told people that live in the area to see her because she is so good.

Bethesda Maryland
Sibley memorial hospital
Johns Hopkins, school of medicine
GU Oncologist
Dr. Channing Paller GU Oncologist
Dr. Mark C. Markowski GU Oncology
Dr Deville RO

@kujhawk1978
You are right I meant to say “just” Doctor Kwon, Actually Said that when I was doing the “writing” with my voice recognition, but it missed that word and I missed it when I went back and reread it.

You definitely want a urologist involved along with a radiation oncologist and a GU oncologist if a serious case.

@jeffmarc

No worries, sounded out of character...