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Posted 11/12/2016 5:10 PM (GMT 0)
After reading responses to compiler's post, I thought it best to give some background information. From 2008 to 2013 my PSA ranged from 1.68 to 2.07. My PSA hit 4.72 in 2015 at which time my doctor expressed some concern and indicated I should have it checked again in 6 months. It then reached 7.66 which triggered a contact with a Urologist. It was recommended that I have a biopsy of the prostate. The results were that cancer cells were found in 3 of the 6 areas. One was a 3+3=6 in 6% of the core. One was 3+4=7 in 6% of the core, and the third was 3+4=7 in 10% of the core.

Because of the 3+4 in 10% number her recommendation was to actively monitor the situation and repeat a PSA in a few months. Four months later the PSA reached 15.08. Compiler had advised me earlier to get a second opinion on the original biopsy which I had avoided doing (denial). I now arranged to have that done by Dr Epstein at John Hopkins. The second opinion results were much different than what I was first told. In the second opinion, cancer cells were detected in 4 of the six sections. One was a 3+3=6 in 10%. One was 3+4 in 10%. One was 4+3+7 in 70%. The last was 4+5 in 5%. There is obviously a problem. My urologist has indicated that a decision would have to be made between radiation and surgery.

I feel quite ignorant in the whole situation, but I am searching for a surgeon with this thought in mind. It is prostrate cancer. If the prostate is removed, the original source of the cancer will be gone. If it has already spread, further treatment will be needed, but at least the original source would be gone. Although I have just started a search for a surgeon, my top prospect at this time is C. Gilberto Brito in Scottsdale AZ.

In reading your responses to Compiler, there were a number of abbreviations used. Since I am new at this please limit the abbreviations since I don't know what they mean.

In my search for information on this topic I ran across a technique called ProPep which can be used in surgery. It is a sensor that helps the surgeon locate the nerves in the prostate area that hopefully helps to avoid the side effects of incontinence and ED. Any information regarding that?

When the original report on the biopsy indicated the worst being 3+4=7 in 10% I was somewhat concerned, but dealt with it optimistically. The new report on that biopsy showing the 4+3=7 in 70% and the 4+5=9 in 5% is now honestly hitting home pretty hard. I'm sure you all know that feeling.

I'll be interested in hearing your responses.

Roy
Posted 11/12/2016 5:37 PM (GMT 0)
Hi Roy:

Glad you joined. These guys are extremely helpful. A number of the folks here are also crackerjack researchers and might offer some additional opinions (even reading material).

Here are a few of the most basic abbreviations. I see you know about ED (all those commercials). :

tx = treatment

dx = diagnosis

HT = Hormone therapy, also known as:

ADT = androgen deprivation therapy

T = Testosterone

PC = prostate cancer


After surgery and/or radiation fails (or, sometimes, sooner depending on the doctor's opinion), a patient is placed on hormone therapy. Typically, they are given two drugs (sometimes one, sometimes three). The purpose of the drugs is to lower your T (see above) to "castrate levels" (below 50, often to single digits). The T feeds the cancer. The idea is to starve the cancer cells and kill them. Generally speaking, your PC consists of cells that are hormone sensitive and those that are not. The more hormone sensitive cells you have, the better the results as those are the cells that die. Eventually, that tx. fails as the cells adapt and the non-sensitive cells take over. But, this can take a long time, from 18 months to 20 years!

Anyway, that's enough for now. Your immediate concern is what to do next. So, keep reading!



You are now a member of a HUGE group... that nobody wants to join.

Mel

Post Edited (compiler) : 11/12/2016 10:46:26 AM (GMT-7)

Posted 11/12/2016 6:14 PM (GMT 0)
Welcome, Roy. The concern we all have with your situation is the G9, and that is a heck of a transition from low-intermediate risk to high risk in one step. One treatment that might serve you well is what is called "triple play", which consists of brachytherapy (radiation seed implants) that kill the 'home base' cancer, and then external radiation if the little buggers have escaped the gland, concurrent with that is HT, which knocks out any stray cells that made it out.

Generally, the consensus of this group is that only rarely does G9 respond well to surgery, since the likelyhood that it's already metastatic but maybe invisible, is pretty high. And, honestly, at your age is when most surgeons start backing away anyway. One of the highly respected surgeons supposedly said that he'd only operate on a man in his 70's if he brought both parents to the consultation!

Anyway, it's a lot to absorb. We'd certainly encourage you to talk to the radiation experts about your case. It's all about getting the most and best information you can.
Posted 11/12/2016 8:09 PM (GMT 0)
Roy-

That was an unwelcome surprise, but I hope our welcome to you will provide some comfort. BTW - there are two "stickies" in the front of this forum that explains the terminology and the abbreviations.

Before you can consider any curative therapy, you have to make at least some attempt to see if it has already metastasized. The first way of doing that is with a bone scan and CT. If it has already metastasized, it is not curable, but it can be managed for a very long time nevertheless. That is the only kind of imaging you need to begin with (there may be others later after you decide on a course of treatment).

I doubt that any of us, when first diagnosed, didn't have the initial inclination to "just cut it out." I know I did, and I hear that from patients all the time. However, as you learn more about your disease - and a GS 9 is its own disease - you may decide that to "just cut it out" may not be your best approach. In fact, I have come to believe that for a high risk patient it is never the best approach.

The reason is because radiation can reach places outside of the prostate capsule that surgery cannot get to. GS 9 is particularly invasive and sends out undetectable micrometastases very easily. If you get surgery first with a plan to have radiation immediately afterwards (called adjuvant radiation), you risk spreading the cancer still further by giving the cancer many months more to spread, and possibly even through inoculation with surgical instruments. The side effects are worse than with either therapy alone. Radiation, on the other hand, treats an area outside of the prostate and incontinence is seldom a side effect of it. Potency preservation is significantly better with radiation too. Side effects of radiation are attributable to inflammation and its after-effects.

The cure rates are dramatically different. A recent study looking at how curative three different therapies were to men diagnosed with GS 9 or 10. The therapies they looked at were:

(1) surgery ± adjuvant/salvage radiation
(2) external beam radiation therapy only (EBRT)
(3) external beam radiation with a brachytherapy boost to the prostate (EBRT+BT)

After 10 years, among the men whose therapy started with surgery, 39% had distant metastases detected. This compared to 33% among men who had EBRT only, and just 10% among those who had EBRT+BT. This, even though the men who chose surgery were diagnosed with a less advanced disease (lower PSA and lower stage).

Here's an article about the study:
For very high-risk patients, EBRT + BT is superior to surgery or EBRT only

If you are in Michigan, you are fortunate to have the most experienced high dose rate brachytherapist in the country, Alvaro Martinez, in Detroit. I recommend you arrange to meet with him ASAP.
Posted 11/12/2016 8:38 PM (GMT 0)
TA:

Quick query: You said
"This, even though the men who chose surgery were diagnosed with a less advanced disease (lower PSA and lower stage)"

I gather when you say "lower stage" you are not talking about G-score, since all the participants were G9/G10?

Mel
Posted 11/12/2016 8:49 PM (GMT 0)
Clinical stage refers to where the cancer has been detected so far by palpation, ultrasound, or any other imaging (but not by biopsy). A clinical stage of T1 or T2 means it seems to be contained within the prostate. T3 means it outside the capsule. T4 means that it is in nearby organs.

Gleason score refers to the grade, where higher grade is worse.
Posted 11/12/2016 9:31 PM (GMT 0)

Tall Allen said...
you may decide that to "just cut it out" may not be your best approach. In fact, I have come to believe that for a high risk patient it is never the best approach.

.

Hello Roy and welcome. Sorry you have to be here and especially sorry for the G9 news. Allen's phrase above summarizes what many of us were trying to say in Mel's original thread...Allen (as usual) just said it better, in more depth and with data to prove the point. I hope you pay close attention to this; I'm sure Mel with tell you that Allen is undoubtedly our most knowledgeable poster...

Jim
Posted 11/12/2016 9:39 PM (GMT 0)
Here is a retrospective study I came across--

www.europeanurology.com/article/S0302-2838(16)30398-0/abstract/clinical-outcomes-for-patients-with-gleason-score-9-10-prostate-adenocarcinoma-treated-with-radiotherapy-or-radical-prostatectomy-a-multi-institutional-comparative-analysis

Bobby Mac
Posted 11/13/2016 6:49 AM (GMT 0)
"If the prostate is removed, the original source of the cancer will be gone." and? radiation will do the same thing. you might have a shot at a cure. one shot. and I really think you should be thinking about a combination therapy like some of us have had with great success.

ed
Posted 11/13/2016 2:57 PM (GMT 0)
As was pointed out, if you have surgery the source of the cancer is gone, but you just as easily could have said "if you have brachytherapy the source of the cancer is gone." Either one should wipe out the cancer, although I can certainly understand the appeal of removing the offending organ.

But to the extent that cancer is outside the prostate, which unfortunately is often the case with us G9s, you'll need to do radiation anyway after surgery. Personally, I didn't want to do that since I didn't want to have surgery AND radiation SEs.

The last thing I'd point is out at 73 you would be considered on the older side for surgery.

Surgery certainly could work for you. It's also your personal preference and I've found that we all naturally lean toward certain treatments and I don't think that should be dismissed. But trying to give you some additional perspective from another Gleason 9.
Posted 11/13/2016 9:39 PM (GMT 0)
First if all, my sincere thanks to all who responded to my post.

In sorting through the information you provided I see that the issue is much more complicated than my limited knowledge had led me to believe. My original naive thought was to either "cut the sucker out", or just zap it with radiation and it would be taken care of. WRONG. All of you seem to think that surgery is not the best approach and have offered numerous item of information that is difficult for me to fully understand.

One part of Allen's post jumps out at me. He mentions external beam radiation with a brachytherapy, and indicates a fairly good success rate. My question would be this. To get the best advice before going any further would it be beneficial if I contacted Prostate Oncology Specialists, Inc. in Marina Del Rey? I need a good starting point to whatever process is best for me in motion. The name Dr. Lam popped up in Mel's original post on my behalf.

If that is not the correct first step, what do you recommend?

Roy
Posted 11/13/2016 10:34 PM (GMT 0)
In most cases you wouldn't need a medical oncologist at this stage since you're still going for a cure--rather you'd talk to a good RO that would be doing the actual treatment. But I personally feel that Prostate Oncology Specialists is a bit different due to their specific focus on prostate cancer (which is not the case with most medical oncologists) and the fact that they have a very holistic approach.

I had the IMRT/brachy combo (along with HT--which is typically recommended for high risk cases) and Dr Lam was the "quarterback" for my team, which was extremely helpful to me. The actual radiation was done at UCLA and while I could have pursued that on my own, the coordination role of Dr Lam (who was also administering my HT) was very valuable. Having him on my team not only diminished my stress level--it diminished my wife's stress level--and I felt that for high risk guys this could certainly be worth it.

BTW, for most PC guys you are correct: you cut out the prostate or you zap it with radiation. But your re-classification from G7 to G9 is the game changer.
Posted 11/13/2016 11:02 PM (GMT 0)
I don't completely share Michael_T's opinion about P.O.S. (one of very few things on which we differ.) I have met Scholz and Lam several times (I haven't yet met Turner), and find them to be warm, caring, knowledgeable and thoughtful. And having been in marketing for most of my business career, I admire the way Scholz has marketed his business. Part of that has been his PCRI conferences, where he brings in specialists from various therapies to help give patients some understanding of those specialties. That may leave the patient with the (false) impression that he himself knows all the details.

That said, they are prostate medical oncologists, not generalists, as one might assume. MOs are absolutely vital when one is living with prostate cancer as a managed disease rather than a curable one, as Mel is. They have no particular knowledge of surgery or radiation therapy (in fact, they have a distinct bias against surgery and some kinds of radiation). That will not stop them (or anyone else) from having an opinion, however. I think there are many great medical oncologists, often attached to major teaching hospitals, who don't market themselves much, but have made huge advances in prostate cancer therapy.

I am a big proponent of the patient taking charge, and not relegating that responsibility to doctors. We are all ultimately responsible for our own health, and must live with the consequences of our decisions. So what I advocate is learning more about your options from specialists, and making your own mind up based on that. Once decided, that specialist becomes your quarterback. If you choose to go with, Alvaro Martinez, for example, he can and should decide (based on his own formidable experience) how much and which ADT you should be taking. He will arrange for imaging, fiducial placement, diagnostics and tracking. He knows more about side effects you may suffer due to his therapy, and he knows what to expect from it. I think putting anyone else in the mix at this point will cause confusion rather than clarity.
Posted 11/13/2016 11:03 PM (GMT 0)
Hi Roy:

Check out their web-site. Then give them a call. One thing I found: they are unbelievably patient friendly. You call them and you get a call back relatively quickly. Ditto with email. The support staff in the office are super, very much superior to any other medico outfits I've done business with.

Don't wait too long. This will take time because they will send you a plethora of forms (welcome to the wonderful world of major form filling!). You'll have to fill them out and send them in.

They may be able to arrange an initial telephone consultation. But, frankly, as I recall you are not that far away (are you?). A person-to-person consultation makes more sense to me, although their telephone consultations are surprisingly informative and thorough. I would try for Dr. Lam, but Scholz is excellent for a person-to-person consult (I was not thrilled with him as a telephone consult -- Dr. Lam was great in every consultation).

Also, I have not met Dr. Turner, but I have personally met folks who did use him and they were extremely pleased.


Mel
Posted 11/13/2016 11:15 PM (GMT 0)
Tall Allen:

I am not sure that you are disagreeing that much. If I understand what you are saying:

Get as much knowledge as you can That means to read a lot, get input from assorted specialists, and then make a decision on tx. Once you decide on a tx., then the person treating you is the one you will rely on to call the shots. If I choose radiation with Dr. King, for example, then the ball is in his court during that time. If, later on, I choose tx. X with Dr. Y, then THAT doctor calls the shots.

Nevertheless, between txs. it would seem that a MO like Dr. Lam could be the QB. That seems to be the case with me.

In my case, I also found the collective wisdom on HW to be extremely helpful. Admittedly, I had to sort through posts for awhile, sifting through the good information and eliminating those who every time have a particular ax to grind. That comes with any support group, I imagine.

I guess Michael can speak for himself, but I don't think you are in disagreement with him either. \Michael -- I assume that when you went through radiation, the RO called the shots.

Maybe we are splitting hairs here.

Mel
Posted 11/14/2016 12:13 AM (GMT 0)
Roy -- check out this article which helped me in the beginning. can't tell you how grateful I am that my uro steered me away from surgery!

www.phoenix5.org/articles/Fortune96Grove.html
Posted 11/14/2016 12:51 AM (GMT 0)
F8:

What an interesting article. I read it all (lengthy article).

I did not know that HDR with external radiation was available in 1995.

In fact, when I researched my own situation upon dx. 7 years ago, it still seemed like the HDR was non-mainstream. That appears to have changed now.

Mel
Posted 11/14/2016 2:03 AM (GMT 0)
Mel,

You have to understand that you are in a very different situation from Roy, and choices that are right for you are almost certainly not right for Roy. When you wrote "Nevertheless, between txs. it would seem that a MO like Dr. Lam could be the QB," you can see how you are misconstruing your situations. For Roy, there is no "between treatments." Roy is going for a cure - an option, unfortunately not available to you. Unlike you, his dealing with the specialist will be "one and done" with any luck. Putting other doctors into that will needlessly complicate treatment. I've heard doctors say to patients "either Dr X is your doctor or I am," and they are quite right to say that. This is not just about egos (although it is about that too), it's about relying on the expertise of an expert. Dr. Lam knows less about radiation oncology than I do and I know much less about it than a radiation oncologist with years of experience in actually treating patients. He also knows less about surgery than any surgeon who has actually performed RPs. Why would anyone ask him to insert himself in the middle?
Posted 11/14/2016 2:03 AM (GMT 0)
Hi Roy, I also welcome you here. Sorry you have to be here, especially with the upgrade. A lot of info has been pushed your way and you have choices to make on your journey, who to consult with and treatment path. I wish you luck on your journey.

PS: I am in the medical oncologist quarterback side of things. Like Michael T, I use Dr Lam to ferret out my treatment thoughts and go forward with his help. No offense to TA, I think he is very knowledgeable and he always provides backup to his advice, but on this one I think it is personal preference on who a patient chooses to seek guidance from.

Take care and keep us posted. -JR
Posted 11/14/2016 2:25 AM (GMT 0)
Mel -- interesting and you can see the bias for surgery and against radiation was even stronger back then. Grove ended up beating prostate cancer (he died earlier this year).

ed
Posted 11/14/2016 3:08 AM (GMT 0)
Not sure about any bias, F6.

Radiation was a major tx. But I don't remember HDR/Ext Beam combo.

Radiation was major enough for me to seek out the advice of a surgeon AND an RO. HDR never was discussed.

Perhaps the latter had not arrived yet, hence I was surprised that it even existed in 1995.

But, it may be my own failing as a "researcher" at the time.

Mel
Posted 11/14/2016 3:15 AM (GMT 0)
TA:

Roy is at the gathering information stage. Being a G9, it would seem that part of the gathering information would be a discussion with a MO.

If Roy was a G3+4 or G4+3, there would be no need to see a MO.

Gathering information from top people is a GOOD THING.

I am not convinced that going for a cure precludes such a consultation.

Mel
Posted 11/14/2016 3:19 AM (GMT 0)
compiler -- maybe you "just wanted it out" cool

here's what Grove said in the article

"He told me that in my case "surgery would have a reasonably good chance of getting rid of the tumor." He gave me the impression that the other treatments would have a lower probability of curing me."

surgery has always been the gold standard for PC but I believe that's changing, and for good reason. Grove did his own research and concluded that his best shot at a cure was a combination treatment, and he was right.

ed
Posted 11/14/2016 3:24 AM (GMT 0)
compiler -- whats the deal with HDR? LDR was widely used. did you have a problem with LDR? I was convinced that between IGRT and BT the cancer had to be out of the capsule to survive. thanks to my uro who was against surgery in my case.

ed
Posted 11/14/2016 4:47 AM (GMT 0)
Mel-

I believe that the best way to approach treatment is to take things one step at a time. It also helps to do it that way to diminish anxiety - deal with what is, rather than the numerous outcomes that may or may not occur down the line. When I was gathering information about primary therapies, I never gathered information on, say, chemotherapy or second-line hormonals. There is certainly more than enough information that a newly diagnosed man must know without burdening himself with information that's irrelevant to his case.

At this point, everything an MO is expert on is completely irrelevant to him. Rather than going on a very confusing wild goose chase after irrelevant information, he is better off staying focussed on the information he needs to know. The pieces of the puzzle he needs right now are in the hands of primary treatment specialists - urologic surgeons and radiation oncologists. He has more than enough burden with all that.

It doesn't matter if he is high risk or low risk, the specialist he needs are those who offer primary curative treatment. Remember that to a hammer, everything looks like a nail. Medical oncologists are no exception to that rule.
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