A Real Stunner

Age 73.PSA doubled 2. 4 to 5.6 in three years.
3 T MRI 12/15. Result : two suspicious lesions left lobe. Organ Confined. RADS 4.
3 D Mapped Biosy 5/ 16 : Gland size : 20cc. 41 Cores. 6 positive . One left . 25 % . 3 plus 4 = 7. Five right : 25 % to 80 % . Four 4 Plus 5 =9 ; one 5 plus 4 =9.
This is my first post as a new member. After my 3 T MRI in December I did a lot of reading knowing I was going to start a new journey and I wanted to scope out the twists and turns I might encounter.
The Academic Center where I had my MRI done recomends a two core extraction on each of the suspicious lesions and a random 12.
Other Doc's I spoke to said that with the high resolution of the 3 T MRI machine 12 additional cores was overkill which would result in unecessary inflammation and scarring.
The more I read the less I became convinced that the 3 T MRI was the new diagnostic gold standard. The mantra that if it does not detect a cancerous lesion, you do not have cancer, or that the only cancer you should be concerned with is what is visible, the non MRI visible cancer is insignificant, rang hollow.
I did not want to start the journey setting myself up for treatment that might be inappropriate to what actually lurked inside this tiny gland that can cause such havoc.
So I opted for a 3 D Mapped Biopsy.
It is expensive. Requires a general in hospital anesthetic. Drills through the perinium. So What. The journey is going to be expensive , time consuming , a real mind game. Why start out misinformed?
But as well prepared as I was I could not even put one foot into the jungle without getting blindsided.
The MRI said two lesions left side. Clean on the right.
The actuality was I had one focally treatable core on the left, and five Gleason 9's on the right. What ? How can that be?
So I am now taking one step back and regrouping. Second and third readings on the biopsy results. Going to the Netherlands for a Combidex scan. I am going assume nothing. If the MRI can't see high volume, high grade cancer in the right lobe, why would I ever trust it saw no seminal invasion, no extracapsular extension , no node invasion.
The Combidex scan has the best chance to stage my cancer. If the cancer is not in my soft tissue surrounding my prostate, nor in any of my nodes, I have a shot at killing It inside the gland.
In the meantime, I am going to ask our Dean, Tall Allan ( or is It Allen) to figure out how to do some kind of a sticky ( I really don't what that means but I see it referenced) whereby new visitors to this site, who are considering biopsy options, can understand, that this is a tricky disease , that there is a 10 percent chance they can be low PSA, High Gleason , and if there going to start the journey, they should invest their time and money on the front end, so they can perhaps avoid wasted time, money and unnecessary treatment and pain on the rest of their trip.
Staying Tuned

Staying tuned....can we assume you're in Northern Europe with your reference about going to The Netherlands? If not, where are you located? There are great and near-great facilities and doctors all over. Perhaps one of us knows a bit about who is where you are.

Stay Tuned,

I think you are raising some great points. I agree with you completely that the transperineal template saturation biopsy is the gold standard for detection and not the 3T multiparametric MRI. I am so glad, as you are now, that you didn't listen to those who advocate fewer cores with an mpMRI. There is no justification for that - it has not been proven to be effective. Also, every cancer center in the US jumped on the bandwagon to offer them, but few have radiologists with enough expertise to correctly read the results.

As for the Combidex scans, there are a few things you should be aware of. It only detects cancerous lymph nodes. The iron oxide particles accumulate in healthy LNs, but not as much in cancerous ones. It does not detect cancer in tissue in any of the other places you are concerned about - the prostate bed, the seminal vesicles, the bladder, etc. (In staging terminology, it detects N1, but not T3/4 or M1.)

I'd suggest that the thing that's most important to you now is to rule out distant spread, rather than to know exactly where detectable cancer is locally (see below). Your best bet, at least to start, might be the traditional bone scan and CT. That should detect any obvious distant metastases to bones, viscera, and lymph nodes. It won't detect smaller ones or micrometastatic and systemic invasion. PET scans can detect smaller mets. Several of those PET scans (e.g., choline, acetate, NaF, and FDG) detect the metabolic behavior of certain kinds of cancer cells. Some experimental PET scans (e.g., PSMA, bombesin, uPAR) detect certain proteins known to occur on a lot of metastasized prostate cancer cells. Because you have an unusual type of prostate cancer that is not putting out a lot of PSA for its grade and is not causing the traditional changes we expect to see on an mpMRI, I don't know which, if any, of those PET scans would work for you. Yours may have unusual metabolic properties and different surface proteins. It makes sense to at least start with a bone scan/CT and take it from there.

One other way that you might be able to rule out systemic micrometastatic spread is with Cell Search. It looks for cancer cells in a sample of your blood. If they find 5 or more, they assume it's systemic. The test is not all that sensitive, though.

Having ruled out, at least as far as current technology allows, that it has spread distantly, there is no further point in detecting exactly where detectable patches of cancer are locally. You have to assume with your high Gleason scores that they are there, even if you can't see them. It may be possible that you can get it all surgically using an extended pelvic lymph node dissection (ePLND - available at Mayo and in Europe), but that won't be curative if it has grown microscopically into surrounding tissue. Radiation to the whole pelvic area will get to any cancer cells in the LNs as well as in surrounding tissues. The most proven way to accomplish this is with IMRT to the pelvic area with a brachytherapy boost to the prostate. (I hope Michael_T and JNF will comment.) Less proven is using SBRT alone to accomplish both, but I'd only recommend one RO to do this. (I hope Nomar Lupron will comment).

I also think it's a good idea to have a sticky on the subject of early detection for the undiagnosed.

- (Dean) Allen

The PCa in your prostate is most probably multi-focal. Some of these lesions are so small that no MRI is able to locate them. As Haffner from John Hopkins found, all metastases can result from a very small lesion you would not expect to do any harm.

So you will end up to get your entire prostate treated, even if you tried to locate the PCa in it as much as you can. Chances are you miss lesions if you go for a focal treatment. These treatments have a 20% failure rate. This means new lesions do appear in the treated area.

Dr. Barentsz with his Combidex can detect lesions down to 2 mm in size. A Ga68 PSMA PET/MRI will go down to 1 mm in size. So you may also use that if you find a place where you can have that done.

Once you know where the lesions are you probably want to get them treated. I would recommend SBRT for that. If new lesions have grown to a visible size you can use SBRT again.

Georg

Staying - I echo Halbert on this one... go for the kitchen sink approach since you have all those 9s and the possibility that the beast has started to move. To cut it out and have those side effects and then to turn around and have to do RT and HT would be a long road. Good luck on your decisions and your journey. Sorry you have to be here. Take care. -JR

Bob-
This case is very different from yours because the prostate is still intact, and I have no idea how he treats that (there are only a few known ways of increasing the prostate dose safely beyond the equivalent of the ~80 Gy IGRT/IMRT maximum). I said he's outside the standard of care in his LN-only treatment. Whether that's good or bad, I can't say because he hasn't published anything (why?), and as far as I know, he isn't even doing it as part of a clinical trial. I've seen a lot of instances of aggressive treatment that resulted in tragic morbidity. Radiation can be very dangerous.

- Allen

Thanks Guys for all of the advice to date .
Tall Allen is our Dean for the obvious reasons: While he is always quick to caveat he is a non medic, I would put his knowledge, nuanced thought, insight, and clear expression up against 99 percent of the Prostate Doc's in the country.
With that said, lets get on with next steps. To add to the patient's profile, lets note the patient is starting on his journey with a fixed view that he will not have a Prostatectomy nor any form of Hormone Therapy . Your job is not to tell the patient he is misinformed or irrational, but to work within the scope of his paradigm.
The patient is presenting with high Volume G 9. The patient has gotten burnt on MRI imaging. The patient wants to know everything he can know about where the cancer may be before doing any thing. The patient know there are no guarantees that he will ever really find all micrometastatic cancer , but he has the time and money to get as close as possible, before jumping to treatment. While we are not now going to talk treatment , the patient is open to consider , at the appropriate time, all forms of radiation, radical cryo ablation and immunotherapy.
Dean Allen has pointed out different imaging technologies in the US that do bones, lymph nodes, etc.
To put the discussion back on track, it would be helpful if he sequenced an imaging path.
The patient, perhaps erroneously , has concluded that if the cancer is out in the Lypmpth nodes, it has also parked in other places which may not now be discoverable, like the bones. So the patient says: I want to clear the lymphs . If it is not in the lymphs, it is not in the bones because it had to pass through the lymphs to get to the bones. So he gets a 2 for one.
The patient then says after we clear the lymphs , lets do our best imaging on the pelvic area .
We then can consider treatment options.
But again we need the Dean to put us on the right imaging track so we get where we need to go.
Thanks to All.

Er, ah, I sense the patient knows what he is doing and what he wants or does not want...some what smugly I would add....not that there's anything wrong with that.. A clinic for the clinicians...that will liven things up around here... Gosh I wish i didn't read so well...at times...this being one. I'll be letten this one ride into the archives

ST:

I am much more simple minded on all of this, I don't have all the fancy terms and buzzwords. With the amount of G9 you have reported, waiting around trying to do all these fancy and complex scans and searches is just going to waste valuable time, IMO.

I don't care about the "I got money part". Good for you. Seen some celebrities with millions of dollars chasing bizarre PC cures because they had the money, and yet they died painful, needless deaths.

I would be focusing on an immediate treatment plan. I have been dealing with micro Mets in my body for nearly 8 years now. Been told they could be anywhere in my body. Combined, they are giving off "x" amount of PSA, which has been constantly rising since my failed surgery in 2008 and failed SRT in 2009, yet none of them are singularly big enough to show up on any scan.

I doubt that you will find out where all your cancer or micro mets are located anytime soon, so why not treat what is known, and take it from there? Just my take.

And no, I don't ever pretend to be a doctor or a source of medical advice. Just another sap with PC that's had a ride from hell, and still residing there.

ST, I have seen papers on modalities how PC spreads, and only one path is along the lymph node route, others can be blood, nerves, bone marrow. That is not to say, that even if there is a microscopic spread where you can´t see it, that it may hurt you. Dr.Myers described how doctors isolated cancer stem cells from his blood (he had positive LN), yet local radiation IMRT+bracy helped him erase it and be cancer-free for over a decade. In other words, those cancer cells are staying dormant or are not able to mutate enough to acquier the ability to seed a metastasis. But to take what is offered at this day and age (Combidex, PET) and intelligently go into the chasing it - from my perspective, a good approach. I agree with others you will possibly, eventually need IMRT+brachy+extended pelvic node radiation. If you want to be agressive. And dose is important. Dr.Myers, I believe had 81Gy, which was considered very high at the time, but it proved effective. My Dad, for example, did not go down an agressive path, but he is still fine after 5 years. I suppose he is lucky.

What I like about your approach is that you have taken the captain seat in your PC ship, and that is definitely how it should be and can lead you to good results.

ST, my take is the 'search' process can sometimes get us more instead of less confused. There are a lot of PC cases where there is the luxury of time, and a few where "all deliberate speed" is more appropriate. I suppose what I'm suggesting to you is that with a high volume G9, you don't have the 6 months to decide what you're going to do the way that us G7's do (or did).

The general advice of this forum stands: Get yourself to a 'top 10' facility and team. The names and locations that keep coming up, (US based) in this forum are: MSK (New York), Johns Hopkins (Baltimore), Cleveland Clinic (Cleveland), Dattoli (Sarasota, FL), MD Anderson (Houston), Mayo (Minnesota), and others. My take (again, I'm just another random dude on the internet), is that you'll do well with any of these "big boys". G9 PC is not something to hand off to a local yokel. Go big or go home. Just don't drive yourself crazy trying to find perfection.

ST,

You are getting some very good information and I know it is a lot to filter through. But, it doesn't have to be too difficult and you will never know everything. Get to the point where you know enough to make a great decision that you can live with. Many failed situations in life were the result of seeking the perfect plan.

You can see my stats and compare them to yours. I am in full remission and have no treatment side effects. I missed three days of work in the last six years due to prostate cancer (2 HDR procedures and a colonoscopy). I have never had a catheter overnight, never used a pad, and have never had a blue pill or shot or pump for other assistance. I had two simple HDR brachytherapy procedures of about four hours each an 25 IMRT sessions of about 15 minutes each so that is about 14 total hours of treatment time...not bad. I don't have any scars and have never spent a night in the hospital. I had a total of 6 hormone shots over a three year period and all the side effects from that treatment are in the past. I had one bone scan, one CT and two ne density tests. For me there was no need for an MRI as it wouldn't have made any difference in my treatments. The one CT led to some question about a couple of lymph nodes as to whether they were enlarged enough to be cancerous, but the decision to include radiation to the nodes had pretty well been made prior to the CT due to the other risk factors. More or different scans would have made no difference.

Overall I am very pleased with my treatments and results and I have never needed any more information than we had to make the treatment decisions. Nearly six years later, I doubt that we would be making any decisions differently other than probably reducing the HT from 36 to 24 months.

Good luck with your process, just don't let the analysis be the focus or you risk paralysis in seeking effective treatment. You have a wealth or experience and advice on the board and it sounds like you are using very capable doctors to assist with the decisions and them carry out the treatments.

Allen -

"You can get a Ga68-PSMA PET scan at Radio-Isotope Therapy of America in Houston."

Is that through a trial? Do not see that PSMA Pet is available at Radio Isotope?
Thanks