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Posted 2/21/2018 3:09 PM (GMT 0)
Hey, Brothers. As recommended, I now have the second opinion from JH, below. Some pretty serious numbers, including a bit of G7 in one spot (not picked up by the local path). I reckon there will be no AS for me, and I should start meeting with radiologists? I know there is a strong feeling for Mt. Sinai here, though my general MD says they should be avoided. She also favors surgery over radiation. Oy veh. Can I bother the gang for thoughts? Sincere thanks.

INTERPRETATION AND DIAGNOSIS: (jeb) 02/02/2018 @ 09:41 am

GU PATHOLOGY CONSULTATION SERVICE
JONATHAN I. EPSTEIN, M.D., DIRECTOR
ANDRES MATOSO, M.D.
TAMARA LOTAN, M.D.

PROSTATE:

A. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1) INVOLVING
10% OF ONE (1) CORE.

B. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1) INVOLVING
10% OF ONE (1) CORE.

E. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+4=7 (GRADE GROUP 2) INVOLVING
80% OF A SMALL CORE. (LESS THAN OR EQUAL TO 5% GLEASON PATTERN 4).

F. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1)
DISCONTINUOUSLY INVOLVING 30% OF ONE (1) CORE.

H. SMALL FOCUS OF PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE
GROUP 1), INVOLVING LESS THAN 5% OF ONE (1) CORE.

J. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1)
DISCONTINUOUSLY INVOLVING 80% OF ONE (1) CORE.

K. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1)
DISCONTINUOUSLY INVOLVING 30% OF ONE (1) CORE.

L. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1) INVOLVING
50% OF THE TOTAL FRAGMENTED SPECIMEN. PERINEURAL INVASION IDENTIFIED IN
THIS CASE.
Posted 2/21/2018 3:30 PM (GMT 0)
As much as I hate to say it.....8 of 12 cores is treatment land. Docs can be found that'll watch it it.....but you'd be going against the main. (the reason I hate to say it is because it's just so darn close...it's just that it's everywhere....and the 4's don't help)

When consulting with doctors....consult with an AS doc as well. Good luck with your decision.

btw....that's curable land. Stick with the best.

(I guess Rudy Giuliani didn't get the "avoid Mt. Saini" memo)

Post Edited (island time) : 2/21/2018 8:41:17 AM (GMT-7)

Posted 2/21/2018 3:50 PM (GMT 0)
You probably want to think about treatment but you have time to do a lot of thinking before you pull the trigger. Your Gleason 7 core was right on the borderline between G6 and G7 with less than or equal to 5% Gleason type 4 cells noted. If the pathologist had convinced himself it was certainly less than 5% he probably would have called it also G6(3+3). It's an added impetus to act but the eight positive cores was probably already enough.

Any of the main treatment options will probably cure you. You should talk to lots of doctors from different disciplines, looking for the one with the best story about side effects. For Gleason 6 disease there is little difference in terms of disease control but treatments do differ in rates of occurrence of side effects. If you go with surgery be sure to look for a surgeon who has done lots of procedures and if you are considering radiation make sure you talk to someone who offers hypofractionalized therapy (SBRT, etc.).
Posted 2/21/2018 4:03 PM (GMT 0)
Look at MSKCC, they have a great RO - Michael Zelefsky - that TA or others can recommend. The best in the business! yeah Radiation may be a better option with less long term SE! There are numerous forms of radiation treatment all with very good results.
Posted 2/21/2018 4:10 PM (GMT 0)
With your second opinion in, I think you move to the stage where you start to evaluate options. Talk to most experienced surgeon that you can find and set up appts with ROs that use different kinds of radiation, such as SBRT and brachytherapy. If you're inclined, I don't think it hurts to talk to an experienced AS program to cover all your bases.

Even with your G7 diagnosis, you do have the luxury of time to make a considered decision. Sorry I can't recommend specific doctors to talk to, but I'm pretty sure others here can. Good luck to you!
Posted 2/21/2018 4:29 PM (GMT 0)
Sounds like you will need to treat your cancer. You are fortunate to have MSKCC close at hand. My brother, also age 60, had surgery for his PC in October at Sloan. He considered both surgery and radiation, and he was able to speak to specialists in both areas prior to making his decision. He had a successful treatment and felt he had excellent care at MSKCC.

Take advantage of the resources at Sloan. Good luck.
Posted 2/21/2018 4:40 PM (GMT 0)
IMO the significant result from this biopsy is not so much the single grade 4 secondary finding, but the relatively HIGH NUMBER of positive cores, with several showing up as 30, 50's and 80% as well. I would say it is quite likely that there are pervasive tumors throughout your prostate in addition to those which happened to have been sampled by the needle.

I'm going to go out on a limb here and remind you that if the prostate is removed surgically, then the entire gland and surrounding tissues will be entirely evaluated by both the surgeon and pathologists. As a result, you will know exactly what's going on in there. Also, as you are a fairly young man, you should also consider that surgery will leave open the greatest number of options down the road in the event that further treatment becomes necessary.

Hopefully by your age you have undergone some sort of surgery before and the word does not scare you. While many here lean towards radiation, keep in mind that RT is targeted based on external scans, which may not show the entire picture. And once an area has been radiated, the future treatment options are limited to what are to me weird sounding procedures with names like HIFU, cryosurgery and HF ablation.

There are possible side effects to every form of treatment.
Posted 2/21/2018 4:55 PM (GMT 0)

Somebody said...
And once an area has been radiated, the future treatment options are limited to what are to me weird sounding procedures with names like HIFU, cryosurgery and HF ablation

There actually are salvage options to failed radiation beyond those methods. But keep in mind that with your diagnosis, the chances of you needing salvage treatment are quite low. I still think the best thing you can do at this point is seek out as many medical opinions from specialists as you can.
Posted 2/21/2018 7:28 PM (GMT 0)
I disagree that AS is off the table for you. Klotz is currently accepting patients with up to 10% of their cores with GS3+4. Plus the one core had only ≤5% pattern 4. But I think that with your substantantial cancer volume, you would probably not be able to stay very long on AS. I faced a similar dilemma and decided to go for treatment (SBRT). But I don't know, knowing what we know since 2010, whether I wouldn't have gone on AS even if it were only for a year or two.

(PDA- under the new ISUP rules, biopsy cores with ≤5% of a higher grade are used as the second number in the biopsy Gleason score. On a postprostatectomy path report, it is described as a tertiary pattern).

You should be only taking advice from experts in particular therapies. (I am always amazed how little most doctors know outside their own specialty). It is surgeons and radiation oncologists (not radiologists) who you want to meet with, and you are lucky to be in NY where there are so many good ones. You have plenty of time.
Posted 2/22/2018 10:36 AM (GMT 0)
Sincere thanks to all. Restores my faith in the Internet (but that's another topic!).

I'm sure I'm not the first to ask this, but I'm puzzled by the practice of meeting with numerous docs to hear about their specialties. Of all the variables in treatment (length of treatment, certainty of cure, pain during treatment, etc.) my decision point is going to be risk of side effects. Is there not a general agreement about which modality has the lowest risk of side effects? Is this something that every PC patient must research himself by reading journal articles and meeting doctors?
Posted 2/22/2018 11:44 AM (GMT 0)
Scot, with every treatment there is a risk of side effects. And everyone has a different experience with side effects. There are no guarantees. Many here have no ability to get an erection after surgery. Others have no issues or very minor issues in that department. With radiation (all types) some have little to no long term side effects others have side effects that are immediate, or show up some years down the road.
The general consensus here is that radiation has fewer, or less chance of, side effects. But some, actually many (I'm one) surgery patients, have little to none. (I believe there is a slight bias toward radiation here at HW)
Whatever you decide, and only YOU have the ability to decide what's right for YOU, make sure you seek out the best practitioner in that treatment mode that you can find.

Also, I agree with Roblee in everything he said. Yes, there are treatments available after failed primary radiation. But it's not that simple. You can have Salvage surgery for example. But it's a complicated procedure that requires a specialist in Salvage surgery, like Dr Eastham at MSKCC, to do. And even with that, the chance of bad side effects is much higher than with primary surgery.

Full disclosure: I'm a surgery guy. (But that doesn't mean I'm saying surgery is or isn't the right option for you.)

One more aside...for the life of me, I can't imagine why your PCP would recommend avoiding Mt Sinai. Dr Tewari, who runs the robotic/urology program there is one of the most respected surgeons in PC land that you'll find. Yup, I had my surgery with him, and my experience was stellar. So don't take my word for it...ask Tall Allen.

Good luck in your decision
Posted 2/22/2018 2:01 PM (GMT 0)
Scott - The reason we recommend you meet with numerous docs to discuss each of their specialties is that these treatments are highly technical and specialized, and many docs (IMHO, only the best) specialize in only one sub-specialty of PCa treatment. For example, I am a radiation patient. My RO is a specialist in CyberKnife SBRT, but she also has the capabilities to deliver IGRT and Tomotherapy. She knows the most and all the latest about SBRT; and is less current about the others. Another RO I met with specializes in IMRT. He, as of last year, still felt that SBRT was "kind of experimental" and would not recommend it. My uro, whose large practice group operates their own radiation center and surgical center, told me that "we haven't seen a brachytherapy treatment (radioactive seeds) in ten years" . . . but just an hour outside the city we have one of the pre-eminent brachytherapy centers in the country. My own opinion is that these docs are (or should be) spending all of their professional education time to learn more about their specific specialties, at the expense of learning about other treatments. They want to be the best at what they actually do, and they don't waste their valuable time learning about treatment modalities that they cannot deliver. I don't see anything negative about this, other than the fact that some patients can be hustled into treatment plans that they may later regret just because the first doc who offered a cure happened to offer the next-best treatment.

We need to do our own research. We need to understand our options. We need to understand their efficacy and their side effects profiles. Only then can we make the best decision for ourselves.

P.S. I do think you are on the right track in basing a large part of your decision on the side effects of the various applicable treatments. With your pathology, most of the mainstream primary treatments have about the same cure rates. Given that, the side effects become important. This is especially true given your age. You will have a long time to live with the side effects, so choose carefully.
Posted 2/22/2018 2:35 PM (GMT 0)
Hi Scott:

Staying on AS is possible but I guess if it was me I would be actively looking for treatment at this point. The good news is that you still have plenty of time and plenty of options. First of all I would pretty much discount the thoughts of your PCP. Prostate cancer treatments are very specialized and it's highly unlikely that your PCP has the experience to guide you. In fact, my experience with some very good PCP's over the past ten years is that my knowledge base usually far exceeds theirs and I'm a baby compared to someone like Tall Allen.

With your stats, most any of the mainline treatments is likely to cure you and, because you seem to have no other known issues, then all of these treatments should be available to you. As for salvage options, that's pretty much a red herring in my opinion. There are options for salvage treatments after either a failed surgery or a failed radiation treatment so that's a wash -- just as you should not look for any particular treatment to provide a cure advantage.

So I'll oversimplify a bit. If it's important to you to have definite and immediate knowledge of your pathology and/or if your psyche is far into the "get it out" mode then surgery might be a good choice. However, if you are concerned about onerous side effects like incontinence or ED then one of the radiation options will generally provide a better result. Of course SE's vary by patient and there are no guarantees; but if you are data driven then just know that you have a better chance of avoiding these SE's with a radiation treatment.

What's next for you should be to consult with some experts in surgery, SBRT, HDR Brachy and LDR Brachy. Then you will likely be educated enough to make a confident choice.

Good luck.

Jim
Posted 2/22/2018 3:15 PM (GMT 0)
Don't forget IMRT, either hypofractionated or conventional. I recently had 44 sessions of IMRT with the only issue being some fatigue. SBRT and HDRBT were not options for me logistically. My uro did not like LDRBT..too many urinary strictures in his experience.
Posted 2/22/2018 3:18 PM (GMT 0)
I agree that GP's are not specialists. (though it can take a *really* honest conversation for some to admit that).

Secondary treatment is too easily dismissed. Obviously you want to go with what has the best chance of cure for primary treatment. But the chance for cure for lower grade guys like yourself are the same for radiation or surgery. Secondary treatment preference is very much a legitmate part of the decision making process.

There's also nothing wrong with *not* meeting with a bunch of doctors and just going and having it fixed. Just because people say you should doesn't mean it's something that is right for you. Alot of poeple don't research this like most here have....and they've been cured, are fine for the rest of their lives...and never look back.


In my mind Scot...the one thing that is non-negotiable...and is as important if not more so than the type of treatment...is who does it...going to the best doctor....in the best hospital....available to you.

good luck

and I agree....AS isn't for you. I"ll just say it. lol too much volume ....good luck
Posted 2/22/2018 4:09 PM (GMT 0)

scottaleh said...
...but I'm puzzled by the practice of meeting with numerous docs to hear about their specialties. Of all the variables in treatment (length of treatment, certainty of cure, pain during treatment, etc.) my decision point is going to be risk of side effects. Is there not a general agreement about which modality has the lowest risk of side effects? Is this something that every PC patient must research himself by reading journal articles and meeting doctors?



Please do recognize that although it may not feel the same as buying a new car, each clinician you visit to discuss treatments is "selling" their particular brand of services. I'm not saying that's necessarily good or bad...but buyers should be sure that they are "aware." Just to take that one step further, there have been some incredible "scare tactics" that some men have shared here that would make your head spin to hear...but a good salesperson knows when to apply pressure, or when to play the "I'm your savior" card.

Post Edited (NKinney) : 2/22/2018 9:15:15 AM (GMT-7)

Posted 2/22/2018 4:14 PM (GMT 0)

Tudpock18 said...
just know that you have a better chance of avoiding these SE's with a radiation treatment.

What this means is that radiation has different side effects from surgery.
Posted 2/22/2018 4:53 PM (GMT 0)

scottaleh said...
.....Is there not a general agreement about which modality has the lowest risk of side effects? Is this something that every PC patient must research himself by reading journal articles and meeting doctors?

Sorry Scott....there are just too many individual variables to have some easy reference guide. A lot of research, and some faith, will be required on you part. I suggest taking the past 7 posts to heart. Good luck!
Posted 2/22/2018 5:21 PM (GMT 0)
So aside from what others have said, I'm wondering if someone should have pointed out one of the last lines in your report:
PERINEURAL INVASION

when discussing treatment options. That term means that there can be a higher chance that the cells have traveled outside the prostate. I'd think it is worth asking about that specifically, when talking to your doctors. If some cells have escaped, then surgery ain't gonna get them. Yes, you can get salvage radiation after that to try to get them, but the time between surgery and that salvage radiation is time those cells have now had to migrate further. Whereas, radiation as a first treatment might have a better chance of catching it all.
Just my .02. If I'm wrong / out of line with the above thoughts, then please someone correct me!
Posted 2/22/2018 5:59 PM (GMT 0)

gibson00 said...


....radiation as a first treatment might have a better chance of catching it all.
Just my .02. If I'm wrong / out of line with the above thoughts, then please someone correct me!

I don't believe you're 'out of line', gibson, but there is no way to tell if primary radiation has a better chance of catching it all, and radiation's long term effects concern me, as I prepare for my 39 sessions of IMGT, SRT.

Pathologists seem to include 'perineural invasion' in most of their reports, to the point of it not telling us much.

Now you have my 2 cents. smilewinkgrin
Posted 2/22/2018 6:09 PM (GMT 0)
Scott-

Your question about comparative side effects has been answered (although many doctors may not like the answers because it conflicts with the myths they have spouted to patients for years). The only way to convincingly get around the problem that patient characteristics affect the outcomes is to conduct a trial where patients are randomly assigned to one therapy or another and track efficacy and side effects over time. This is what was done in the ProtecT study a couple of years ago. Like all clinical trials, it isn't everything we could have wanted, but their analysis of relative side effects of active surveillance, surgery and EBRT are useful. You can read about it here:

/pcnrv.blogspot.com/2016/09/patient-reported-outcomes-from-protect.html
Posted 2/23/2018 9:30 AM (GMT 0)
We have similar numbers and age. What I know/experienced int he last 7 months is what I refer to as the learning phase of my disease. There are conflicting opinions, sometimes even studies that disagree, and the emotions that may cloud one's judgment.

My advice is to take your time and study the options in depth. Because I stayed the learning path, I changed my mind about which treatment is best for me. I was heading down the surgery path and reasonably comfortable with it when I then learned about HDR-BT. I am not suggesting anything for you other than learn, learn and then learn some more. The right next step will emerge and be clear for you if you do that.

Denis
Posted 2/23/2018 11:37 AM (GMT 0)
Good Morning Scott - Yes you do have to be your own advocate in this fight against PCA if nothing else for your own piece of mind. You are a person that want's to do the best you can otherwise you would not be here seeking suggestions and advice and experiences from others. With that being said I'll just offer maybe one more idea instead of looking at many different doctors maybe find a good team at a well known hospital or cancer center then you will have everybody on board. I did this at the Mayo Clinic and I know from other guys stories that they have done this at other places too. Just another thot? Wishing you the best in your journey fighting this beast get your best weapons and the best battle plan in place and you will be fine

Larry
Posted 2/23/2018 11:17 PM (GMT 0)
Scott, I would say that with those results, you probably are on the treat sooner instead of later path. As far as treatment choice goes...and why talk to all these different specialists...well, you've already encountered one of the classics:

A Urologist tells you that surgery is the way to go because you can't do salvage surgery after radiation. Well, consider this: A Urologist, by definition, is a surgeon. So, they recommend surgery. If you were interested in a Honda automobile, would you ask a Subaru dealer what he thought? Also, the second part is true--to a point. The message is, "you have no salvage choices if you do radiation first". Which is not true. The subtext also is, "If you do radiation, you WILL need salvage treatment", which is also far from the truth.

The fact is, with your numbers, cure is in your vocabulary, and cure with primary treatment of pretty much any of the standard modes (surgery, Brachytherapy (either LD or HD), SBRT, or External beam.) The choice is yours. What can you manage schedule wise, what side effect profiles work for you, what is available to you where you live?

Why worry about the possibility of needing salvage, when you've got a 90%+ chance of cure with primary treatment?
Posted 2/25/2018 10:10 PM (GMT 0)
As TA said, AS could still be available in your case with right practitioner.
Being actively monitored under experienced doc won’t jeopardize your future definitive treatment when it becomes necessary to treat. This is best possible option with no Risk of SE. Any year without SE (while in AS) should count as double blessings; your PCa is under control and you are free of SE.
Radiation as choice of definitive treatment in regards to SE, gives better chance of avoiding SE like incontinece and impotence and if you suffer any SE, they are lesser compared to RP surgery, you won’t experience them right away and their progression is slow.
From my experience on this forum. I can say it is very much pro surgery forum.
I was also 7 (4+3) with way more percentage of 4 (55/45)then in your case and AS doc did not want to accept my into program which I wanted to be in even against medical advice.
After surgery it was downgraded to 3+4 with 60/40.
Lucky... ????? Yes, maybe....
SE bad, bad, bad.....

MK
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