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Newly diagnosed with PC, 50 years old and weighing my options.

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Posted 1/15/2017 9:26 PM (GMT 0)
i've been lurking here for awhile learning as much as I can. There is so much information to digest at times I just have to shut the prostate issue off before my head explodes!
Due to my PSA level doubling after biopsy and a genetic test my Doctor is urging me to get treatment of some form, So the active surveillance isn't working as that was my 1st choice.
I have a small tumor in 2 cores (0nly 2% of second core) and a Gleason score of 8 (see signature for stats).
I'm single, sexually active, and not really keen on a radical prosectomy or radiation due to the side effects. However, that's alll my insurance will cover.
Im not opposed to mortgaging the house for one of the newer treatments like HIFU or the focal laser ablation. They sound very appealing to me...almost to good to be true.
I'd like to hear real world opinions to help me find my way.
Posted 1/15/2017 10:07 PM (GMT 0)
"If it seems too good to be true, it probably is". Focal therapy of any sort appears promising but remains investigational.
Posted 1/15/2017 10:36 PM (GMT 0)
If you're a Gleason 8 that's considered high risk and Active Surveillance wouldn't be appropriate. I'm also not an expert on focal treatment, but I'm not sure if that's indicated for high risk diagnoses. I'll let other guys that might understand these treatments better to comment on that.

But if I'm reading your post correctly, your main concern is about SEs. I think the best thing you can do is meet with doctors that specialize in each treatment to learn more about them. In addition to surgery, the best radiation options would be considered low-dose (seeds) or high-dose brachytherapy, as well an external radiation treatment known as SBRT. In general, most would say that radiation is better than surgery on the ED front.

Your profile says you have an HMO so I'm not sure how much more difficult that might make your options. I'm also in Southern California and there are some excellent radiation experts at UCLA if that's feasible for you.

Good luck--you're at the hard part trying to get figure out how to move forward. I hope we can help.
Posted 1/15/2017 11:21 PM (GMT 0)
Vmost, welcome to our little corner of the world. Sorry for your diagnosis. I also am not that familiar with HIFUNor focal ablation. But what I do know, is that Gleason 8 isn't something you want to mess with. Not saying to rush into anything, that would be a mistake , just saying if you were diagnosed with G8 in October, I'd get real educated on your options, and start moving towards the action phase soon.
There is no treatment other than AS which is free of potential side effects, for a G8. With your PSA still below 10, I'd focus on the best chance for cure as top priority if it was me.

Did your MRI show possible escape from the capsule? something that might guide your treatment choice.
Posted 1/16/2017 12:02 AM (GMT 0)
Welcome to our club that none of us chose. With a G8, even with only one positive core, you're going to have to do something. The very first thing I'd suggest to you is that you should have your slides sent for second opinion to Dr. Epstein at Johns Hopkins. You really need to know what, exactly, you're dealing with.

And, as our good friend Pratoman says, you really need to know if it's still in the capsule or not. That makes a big difference in what you do.

Has your doc put you on HT?
Posted 1/16/2017 12:17 AM (GMT 0)
I know Gary Onik is running a clinical trial of focal ablation for high risk guys - it is very experimental - no data whatsoever. There are several things to consider in pursuing such a course of treatment:

/pcnrv.blogspot.com/2016/12/focal-ablation-unresolved-issues.html
/pcnrv.blogspot.com/2017/01/what-should-focal-therapy-be-compared.html

I definitely hear you about wanting to maintain sexual function. I had the same priority when I chose my treatment. The best record of preserving sexual function is from HDR brachy and SBRT as monotherapies. about 75-80% of patients retain erectile function after treatment, and the numbers are even better in younger men. I retained mine, thank God! It does usually eliminate ejaculate at orgasm. Their use in high-risk patients is considered experimental. Here's some info about them:

/pcnrv.blogspot.com/2016/08/sbrt-for-high-risk-prostate-cancer.html
/pcnrv.blogspot.com/2016/08/hdr-brachy-boost-and-monotherapy-for.html

The good news is that you are in Southern California and you have the most experienced practitioners at your doorstep - Chris King for SBRT and Jeff Demanes for HDR brachy, both at UCLA. The bad news is that you belong to an HMO that probably won't pay for it. Of the two, the SBRT would be about half the cost of the HDR brachy (which requires 2 hospital stays).
Posted 1/16/2017 4:42 AM (GMT 0)
Im not sure...but to my knowledge the only way you know if your cancer has escaped is with post surgical pathology...scans at this date are not definitive...pathological examination of prostate is...If that is not correct information...someone will let you know on this forum...hopefully the person who presented the "maybe" info if they are not sure themselves or will correct me with definitive evidence that: postop pathological is not the only definitive evidence of actual{operative word actual} EPE... Scans can help greatly with a personal decsion to do this or that...but they are not definitive...Good luck in your medical journey... Ps I had 70% odds from clinical evidence that my cancer had escaped...it did not and actually was "fairly clear of the prostae edge and capsule...natures last firewall of escape...arguablly...
Posted 1/16/2017 4:56 AM (GMT 0)
Bolo is right, scans are not definitive. However, my understanding is that a 3T MRI will give you about 90% accuracy regarding epe.
Posted 1/16/2017 5:40 AM (GMT 0)
EPE is virtually non-existant with a true Gleason 6, as are metastases.

The U of Chicago/Northwestern study said...
seven[patients](0.28% of entire pGS6 cohort of 2502]) with GS6 and pT3a were identified after re-review, all focal EPE. Among the re-examined cohort, no cases of GS6 with pT3b were observed.

Extraprostatic Extension Is Extremely Rare for Contemporary Gleason Score 6 Prostate Cancer

Sorry, I can't think of anyone offhand in Calgary. I only know good specialists in Toronto or Vancouver. Perhaps others may know.
Posted 1/16/2017 7:58 AM (GMT 0)
Thanks for the advice, I'm learning as fast as I can. The acronyms are a little confusing at first. I will need to print out that a list of acronyms. I'm not doing too bad considering I didn't know what a prostate's function was a few months ago! Embarrassing but true. All I knew is where it was...
I had no idea that this affected so many men. It's not like there is prostate awareness week with ribbons everywhere. Maybe there should be?
To answer a few questions. I'm still considering the second opinion on the Gleason score with Dr Epstein and wii probably do so. However my urologist had a genetic test done on the core and he said it's very accurate. If anything my Gleason score may have been on the conservative side... I'm in the midst of gathering all my medical data so that I can have it with me when I consul with other doctors. My Urologist also suggested that I seek out other opinions on treatment. Even as far as suggesting that I pay out of pocket if needed. He is very honest with his opinions which makes me feel comfortable. He even suggested that if I wanted the best surgeons I would probably need to go to USC or UC Irvine as he doesn't specialize in solely in prostatectomies....
....I will switch to a PPO in May unless I'm able to find a treatment I'm comfortable with sooner.
I left my medical folder at work so I can't answer the all of the questions. All I can remember from the MRI was something about evidence of hi-grade cancer that was contained within the prostate with no evidence found in surrounding areas. The bone scan was also clear.
I refused the HT for now as I feel it would be dentrimental to my overall health.
Thank you for taking the time to comment and express your opinions. Friends and family are helpful but you really need to be a member of the club to understand how difficult this is.
Posted 1/16/2017 11:59 AM (GMT 0)
Hi.

A couple of small points here, if I may.

1) A "high grade G8 tumor" is not a good thing to have. We usually write that as G8(4+4) or G8(3+5). either one is pretty nasty. G4 cancer cells can move about your body and colonize distant sites if they escape the capsule, and they are constantly working on doing exactly that. G5's are the worst you can get as they can just slide (they change shape and move like an amoeba) into a blood or lymph vessel and they are outta there.

2) There is a dotted line at a PSA reading of 10 and another at 20. The stats are not with you at PSA 10 and much less so at PSA 20.

3) All treatments come with side effects, even no treatment comes with side effects. The more obvious side effects of watchful waiting/active surveillance/doing nothing are emotional stress, moving on to stage 4 and/or dying. Some treatment side effects are immediate (as with surgery), others don't show up for years (as with radiation). Your choice is to pick the treatment(s) that you decide give you the most bang for the buck. No matter what you choose there will be side effects to deal with.

Side note here: while ADT is not fun, it does have the potential to stop the progression of this disease and buy you time IF your "high grade" cancer is responsive to the Luprolides. If it isn't, then you will move into more serious treatments, but at least you will know. Luprolides are available in 1, 3 and 6 months doses.

Yeah, is kinda sucks that we haven;t got together a week or a month or some other small increment of time to concentrate social attention to this cancer as we have with say, breast cancer or some other serious diseases. sad
Posted 1/16/2017 1:27 PM (GMT 0)
Vmost - We do have Movember - the Men's Health Awareness Month. Many guys sport new facial hair during the month to start "the conversation" with others and to remind them that their health is not self-managing.
Posted 1/16/2017 4:31 PM (GMT 0)
I can't see a downside to the second opinion from Epstein. All of the treatment decisions are complex to manage and the second opinion is probably the only that's easy and straightforward. I'd really encourage you to check that box.

HT is not to be taken lightly, but in the vast majority of guys it stops the PCa in its tracks. That buys you time while you figure everything else out. Also, if you select radiation as a primary treatment, HT is typically recommended. But when you say you're sexually active there's close to a 100% chance that you won't be on HT. It doesn't cause ED, but it completely shuts down your libido and you have the same interest in girls that you had when you were 10. (But it does come back when HT is finished...)
Posted 1/16/2017 5:51 PM (GMT 0)
There is a list of common abbreviations in a sticky on top of the list of forum discussions. Between that and the other sticky for the newly diagnosed, you should be a bit clearer on all this.
Posted 1/16/2017 6:40 PM (GMT 0)
Vmost66, I'll try to answer the one question you asked where I have some experience.

I don't know what your psa was before the biopsy, but I can tell you that a biopsy can cause your psa to spike. One of my biopsies doubled my psa, and another one tripled it! And, that spike and some discomfort lasted for four months in one instance and six months in the other.

So, while you know that you have a decision to make for treatment, you perhaps should not worry too much about your psa rise at this time.
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