Pc treatment?: I have pc Gleason... - Prostate Cancer N...

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Pc treatment?

Jordache profile image
62 Replies

I have pc Gleason 7 pyrad 5 still located in prostate and I’m 53. Most surgeons say removal but they will sway toward surgery however dr. Says can have a ablation but not focal. Any inputs are welcome. Btw psa is 8.7 and I’m am a bit overwhelmed.

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Jordache
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Magnus1964 profile image
Magnus1964

If you can kick this beast completely with surgery, do it. Have you been assured that all cancer is contained within the prostate?

Jordache profile image
Jordache in reply to Magnus1964

Based on the mri ct and biopsy they say yes, but does one really know? The incontinence is very concerning and the loss of erections, and what role it will play in my very active relationship is a bit troublesome.

Magnus1964 profile image
Magnus1964 in reply to Jordache

If you can avoid the long battle the surgery is the way to go.

Tall_Allen profile image
Tall_Allen

Is that GS 3+4 or GS 4+3. And how much do you have? Did you get a second opinion from Epstein? The answers to those questions will guide you to different options.

Here's some basic info:

nccn.org/patients/guideline...

In a recent trial of whole-gland TULSA-PRO (a kind of ultrasound ablation guided by an MRI), a third of the treated men had a recurrence within 5 years. Stick to either radiation or surgery.

Urologists always recommend surgery - it's what they do. To hear other opinions, you have to take the initiative and seek them out. If you answer the above questions and tell me where you live, I may be able to point you in the right direction. Also, are you able to choose your own doctor?

Jordache profile image
Jordache in reply to Tall_Allen

4 were 3+4. 2 were 4+3. The 4 +3 was 70% and 60%

Tall_Allen profile image
Tall_Allen in reply to Jordache

OK. That puts you in a category called "unfavorable intermediate risk." What that means is that you have many curative options, but they all require treatment intensification.

(1) For surgery, the likelihood of its being curative is roughly 50%. Use can see what the odds are exactly by filling out this nomogram:

mskcc.org/nomograms/prostat...

(2) Brachy boost therapy has the best odds of curing you, around 92%

brachyjournal.com/article/S...

(3) SBRT can also be used, with perhaps fewer urinary side effects than brachy boost therapy. It has odds of curing you of around 85%:

redjournal.org/article/S036...

Brachy boost and SBRT are not available everywhere, and you may have to travel. What is your nearest large city?

maley2711 profile image
maley2711 in reply to Tall_Allen

TA -

Not argumentively, but sincerely, do you believe comparing the results from those 3 different sources , with very different patient numbers, would reflect what would be found in a randomized study?? Whatever your answer, thanks much for providing everyone with those sources!! If they are reasonably good as illustrative of what a randomized study would show, seems it would be a poor decision to choose surgery?

" Knowing what you have" from surgery would not outweigh the dramatically better results from the radiation options? Wonder if surgery plus any needed salvage radiation would compare more favorably to the initial radiation option, which has no equally effective salvage option? Thanks for all for your insight!!!

Tall_Allen profile image
Tall_Allen in reply to maley2711

I very much agree that only a randomized trial is definitive, and I think there is one in Sweden, but it takes many years and it is a very hard to recruit population. Database analyses are worse than useless because most patients get surgery, and those that don't, are excluded from surgery because they were felt to be too progressed or otherwise poor candidates. Also while surgery is available everywhere, brachy boost isn't and may be of unknown quality in community practice. So it is important to only compare these therapies as practiced at top institutions.

The surgery nomogram is from MSK and reflects the experience of over 10,000 men.

Brachy boost has similar success rates in high-risk men (only 13% had distant metastases with 10 years of follow-up). In the following study, among 1,809 men at 12 top institutions, it was far better than surgery or external beam alone. This was true even though the selection bias favored surgery (patients who get surgery are younger and less progressed) and 43% had salvage/adjuvant radiation too:

prostatecancer.news/2018/03...

Surgery+salvage radiation was compared to BBT, but not in a randomized trial:

prostatecancer.news/2018/11...

IMO, a high risk patient should never go into surgery knowing salvage radiation will follow because the side effects of salvage radiation are much worse than primary radiation.

For favorable risk men, surgery and any kind of radiation have equal oncological outcomes (although they differ in QOL outcomes). It is with unfavorable risk men that BBT really has more impressive outcomes.

maley2711 profile image
maley2711 in reply to Tall_Allen

Thanks TA for the additional studies ! So, in your initial post, one study showed SBRT at I think 85% vs 92% for BBT. Reasonable decision to go with just SBRT ? I assume you are also saying that for favorable risk ( G 3+4) EBRt 20 sessions or SBRT 5 sessions have similar results as surgery, and would all these be at least matching the 85% number for higher risk cases? On Inspire.com, one fella keeps posting something from a n MD video re 50% recurrence (at 10 years I rhink) no matter the treatment??? Before that, I had seen numbers of 30-40%? The numbers from your studies seem to be so much higher?? It appears that Providence Hospital here in Oregon just installed, or at least planned to ahve installed, aViewray SBRT equipment in 2020. I haven't called to check......would you volunteer to be one of the first group of men to access that treatment shortly after it becomes available?? Or does successful use of such equipmentt require long learning curve as supposedly is true with robotic and other medical treatments ?? If advised /decide to have treatment, availability of local Viewray would be very tempting!!

Tall_Allen profile image
Tall_Allen in reply to maley2711

Given that it's not a randomized trial, I doubt that 85% vs 92% is a significant difference. For favorable intermediate risk, the non-recurrence rates are excellent:

prostatecancer.news/2018/10...

I have no idea what the guy on Inspire is talking about.

I like the new Viewray linacs. Amar Kishan at UCLA is running a randomized trial comparing it to a VMAT linac on toxicity. IMO I doubt there will be much of a difference in toxicity -- it is already so low. And you raise a good point about learning curves - I wouldn't want to be the first patient. It has the advantage that no invasive fiducial placement is required. It has the disadvantage that it is slow compared to VMAT - I hear it takes about 45 minutes per session (similar to CyberKnife).

maley2711 profile image
maley2711 in reply to Tall_Allen

Hmmmm....... local med school oHSU and/or Kaiser may have VMAT....but do you expect results similar to SBRT when VMAT is used......20-25 session I assume? I believe you chose SBRT for your 4+3? Was 20-25 session VMAT an option for you?

Tall_Allen profile image
Tall_Allen in reply to maley2711

I had SBRT on VMAT (Truebeam with RapidArc).. I had a choice of SBRT or IMRT (44 sessions) on the same linac. I was GS6.

maley2711 profile image
maley2711 in reply to Tall_Allen

Thanks for clarification TA! Well, does SBRT mean just 5-6 sessions....didn't know SBRT 5 sessions done with VMAT equipment..I need to review the different equipment options vs the treatment modalities possible with the different equipment. Unless you correct me, I'l then assume 5 session VMAT SBRT is an option.....why wouldn't anyone prefer that to same efficacy 5 session SBRT done during longer sessions with Cyberknife?

Tall_Allen profile image
Tall_Allen in reply to maley2711

No, there's more to SBRT than extreme hypofractionation (5 sessions). In order to make 5 sessions non-toxic, it requires INTRA-fractional tracking. IMRT is a much lower dose per fraction (1.8 Gy vs 8 Gy) so a little miss here and there doesn't matter much - it all evens out in the end. They only do INTER-fractional tracking, at the beginning of each session. Also margins and dose constraints are much tighter with SBRT.

My RO, who invented CyberKnife SBRT for prostate cancer, was also the first to do SBRT on VMAT for prostate cancer. He likes the speed, but mostly likes that he gets better dose homogeneity with VMAT. It's a fine point that probably makes no discernable difference.

Patients don't get to choose their linac. If your RO has CK, that's what you get. The RO is much more important than the linac he uses.

maley2711 profile image
maley2711 in reply to Tall_Allen

Thank you TA.....reaffirmed what I thought I remembered...so the real-time MRI of Viewray is the ultimate intra-fractional! Did you choose SBRT for the reduced sessions....or hope of better long-term efficacy. or other? with your G6, maybe high volume caused you to skip AS?

Tall_Allen profile image
Tall_Allen in reply to maley2711

Yes it was high volume, but also not as good long-term data as we have now. Because any therapy could cure me, I wanted one that maximized my chances of maintaining erectile function. Both SBRT and HDR brachy monotherapy had great numbers (they are radiobiologically identical). SBRT was just a lot easier (no anesthesia) and cheaper, so I went with that. I'm sure I wouldve been fine with either one.

maley2711 profile image
maley2711 in reply to Tall_Allen

Thank you Allen. It seems you have devoted incredible time to both this forum and the infolink blog you author?

Tall_Allen profile image
Tall_Allen in reply to maley2711

Mike Scott curates the Infolink blog and I publish there as well on radiation topics. I have my own blog too where I write about anything I want.

maley2711 profile image
maley2711 in reply to Tall_Allen

that could be interesting....how can I access?

Tall_Allen profile image
Tall_Allen in reply to maley2711

prostatecancer.news

maley2711 profile image
maley2711 in reply to Tall_Allen

Also, this is a younger guy. Those comparisons would still apply??

Tall_Allen profile image
Tall_Allen in reply to maley2711

Why does age matter?

maley2711 profile image
maley2711 in reply to Tall_Allen

I thought I have read in various articles about different outcomes for men at different ages.....or just that younger men deal with SEs better than older(72) men? Older men seem to choose radiation more often?

Channelhomec profile image
Channelhomec in reply to Jordache

If you take it out you will know exactly what your facing

Tall_Allen profile image
Tall_Allen in reply to Channelhomec

Why would you care, if you are cured? Even with whole-mount pathology, you have to wait for subsequent PSA tests. That's true whatever kind of therapy one chooses.

Channelhomec profile image
Channelhomec in reply to Tall_Allen

Dont quit understand your comment I know lots of times a biopsy will show one glesson score and after surgery its higher grad of cancer

Tall_Allen profile image
Tall_Allen in reply to Channelhomec

So what? If you are cured (PSA remains undetectable), the change in Gleason score doesn't matter. And if you are not cured (PSA is rising or persistent), the change in Gleason score doesn't matter either- PSA dictates adjuvant ADT or salvage LN treatment. With primary radiation, one similarly monitors PSA to tell you if further investigation/treatment is required.

The only time Gleason score change matters to a treatment decision is if you are downgraded to a GS 6. In that case you can decide against salvage RT. But if you had primary radiation for a GS 6, you are probably cured because radiation killed the cancer in the prostate bed that surgery missed.

Channelhomec profile image
Channelhomec in reply to Tall_Allen

Ok thanks

Jordache profile image
Jordache in reply to Tall_Allen

I’m here in NYC

Tall_Allen profile image
Tall_Allen in reply to Jordache

That makes it easy. Schedule an appointment with Michael Zelefsky at Memorial Sloan Kettering. They do both SBRT and Brachy boost therapy.

Jordache profile image
Jordache in reply to Tall_Allen

Btw have an appointment with Zelefsky next month. Fingers crossed. Thanks

Jordache profile image
Jordache in reply to Jordache

While waiting for Zelefski what is you take on cyber knife? Radiation vs radio treatment?

Jordache profile image
Jordache

How was your recovery?

Justfor_ profile image
Justfor_ in reply to Jordache

Decision pro surgery or radiation has to do with the type of person you are:

a) If you wouldn't buy something very expensive until you had saved the money for it, go with surgery.

b) If you would rather get a loan for this, being optimistic regarding the pay-back, go with radiation.

maley2711 profile image
maley2711 in reply to Justfor_

Huh???

Justfor_ profile image
Justfor_ in reply to maley2711

With surgery one gets the info and the side effects on the spot. Radiation pushes both of them into the distant future. Does it make more sense now?

maley2711 profile image
maley2711 in reply to Justfor_

Yes, all things being equal, but..... If the info TA provided is true for high risk intermediate, then the much better 10 yr results for BBT or SBRT woud seem to be more than offsetting ...for us older men especially? Also, just having the prostate examined is not at all definitive .....tells us little/nothing about lymph node condition, or circulating tumor cells.....and if salvage radiation , negatives of both treatments. Just that is the way seems to me. For younger men, from those testifying here and other reading, it seems they deal better with surgery side effects, and then do avoid the increased risk from secondary cancers after primary radiotherapy...and I get the psychology of removing it from your body!! Evidently if you choose a treatment for favorable risk PCa, the results from surgery or radiation are more similar

leach234 profile image
leach234

At 53 surgery is your best option. Find a surgeon who has done thousands of surgeries. It takes 250-500 surgeries just to get proficient on the robot.

I was a Gleason 8 but contained to the prostate. pT2 with focal margin post surgery. PSA 5.2 before surgery. 2.5 years out PSA <0.02. No ED and no incontinence.

The surgeon makes all the difference if contained to the prostate. Find a world class surgeon. Do your research. I was patient #1742! Now 2.5 years out it’s like it never happened!

CHPA profile image
CHPA

Jordache, It is a terrible thing to have to contend with, especially at this time of year, especially during a pandemic. It was bad enough for me 18 months ago at 57, would have been worse at 53. But it is what it is and take comfort in the fact that you have one of the most beatable forms of cancer. I was Gleason 8, PSA 8 otherwise about the same as you.

Honestly, I didn't put a ton of thought into this. I plan to have another 30+ years to live and the farther I could get the cancer from my body the sooner, the better. I would have felt the same if I was Gleason 7 which ultimately I was. I had two friends who had been through this. One is in his late 70's and 20 years post surgery. He has a great life. The other was an MD in his 50's who had gone through the procedure a year prior. He was my coach in a way.

Surgery wasn't so bad. Obviously you want a rock star surgeon who does nothing but cancer surgery. If he hasn't done a couple thousand procedures find a better doc. My guy is department chair at a university medical center and very active in the American Urological Association. No one wants to go to the hospital but I' a curious sort and found the whole process pretty fascinating. Wish I wasn't the subject of course but still fascinating. I approached the whole diagnostic process and prep for surgery like any major project complete with a tab divided notebook and online folder. I read up on the AUA website and the Prostate Cancer Foundation website. I asked the surgeon good questions by the same token I would never try to second guess him. I enjoy our ongoing relationship.

The surgery was fine. I took the recovery slow and treated that month of my life as a time to heal. You will read stories about incontenance but don't let that drive your decision. I used pull ups for a month or so, thin pads up to about the three month point and past that things sort of tidied up as the doc said. 16 months out i'm fine. From a ED perspective and again you will read lots of things, if the surgeon is good and if they do nerve sparing surgery, things should for the most part get back to normal, or normal enough. Again 16 months out I'm getting there and seeing improvement all the time.

In my calculus the first priority was to live a normal life span. the second priority was to live with as close a quality of life as I had prior to cancer. The third and lesser priority was to get through the procedure as easily as I could.

No regrets.

CHPA profile image
CHPA

Respectfully I disagree about your conclusion on where to get treatment. My surgeon is department chair as a state university medical center in the mid atlantic. He has a dozen or so urologists in the department, is a professor, and he does the prostate and bladder cancer surgery. He has done over 2500 of them over his career and leads the education program in the mid Atlantic American Urological Association. All that gave me confidence in his capabilities but his personal reputation sold me. I talked with prior patients who loved him. His direct staff loved him. People in surrounding departments love him. And once I met him, I agreed. He talked to me at a level appropriate to me. He was responsive to personal emails.

We had a good conversation about how long it takes to become proficient at Robot Assisted Prostatectomy and he told me of studies which show a surgeons complication rate levels off after about 500 surgeries which interestingly is about how many landings it takes for a Navy pilot to become really good.

So I would say yes, you really want someone you can work with, but in my mind, that is less important than someone with the highest chance of fixing you and that comes from a guy who is ultra specialized and a leader in the field.

CHPA profile image
CHPA

A bit of mutual reinforcement is a great thing!

ODave profile image
ODave

I turned 56 this month, diagnosed with 7 (3+4) high volume and Pirads 5 tumor also at 55. I chose SBRT. The Uro and surgeons said surgery should have been my choice because of age, it may come back to haunt me but I chose what I felt was best for me.

Jordache profile image
Jordache in reply to ODave

Hopefully you will be fine and possibly different treatments later on if needed. I’m thinking the same as you. Did you do it already?

ODave profile image
ODave in reply to Jordache

I did I finished in late September, it’s a tough choice lots of info to soak in. The thing is if this was an appendix the treatment is only one option, with PCa there are a ton of options and that’s the tough part.

Tall_Allen profile image
Tall_Allen in reply to Jordache

Salvage treatment side effects are always worse than if you had done the job right in the first place.

Bethpage profile image
Bethpage

Not advocating surgery, and I don't know where you live, but after reading all of the comments, will tell you that Dr. Vipul Patel in Celebration, FL, has done over 14K laparoscopic robotic surgeries. He did my husband's simple in 2014 (age 71) and a salvage in 2017 (age 74). Recovery was fast and entirely without complications both surgeries. Patel did a surgery on a 49-year-old from ATL on 12/9 at 6:00 a.m. Patient was discharged and back in his hotel room before 6:00 p.m. He's doing very well. Patel's technique as regards in/out and incisions has improved immeasurably since 2017. I am not a fan of Patel for reasons having nothing to do with surgery, but he is an incredible surgeon.

Jordache profile image
Jordache in reply to Bethpage

Wow thanks. I’m in NYC so I’ll fined a local dr. Just want a Dr who doesn’t forget their patients when they call and is not so difficult to reach.

Bethpage profile image
Bethpage

You're located where there is a plethora of superior choices. There is another one of these same day in/out surgeries going on Monday with an entirely different well-known surgeon. Apparently that's becoming more common because of COVID. (?)

maley2711 profile image
maley2711

Do you have studies that disprove what TA has provided???

maley2711 profile image
maley2711

TA has provided links to studies showing significantly better outcomes using SBRT or brachy boost protocol....for unfavorable risk cancer. You advise surgery instead...so I assume you base that advice on supporting studies???? Or, is it just that your surgery has been successful?

maley2711 profile image
maley2711

Sorry that not curative!! Yes, G9 evidently a differnt animal...assume it is the 5 part that is the problem!!! Now you've got me interested in studies of treatment outcomes for G9-10...for many men, I undrstand gland treatment is skipped..straight to ADT and chemo? I'm trembling in my boots re the inevitable upcoming biopsy....steady PSA of 7.5 for last 2 years, but MRI pIRADS 5? Hope the steady PSA more informative than the PIRADS number!!!

Best of luck in your battle!! There for the ......

cybertreated2019 profile image
cybertreated2019

My profile shows my numbers for favorable intermediate PC confined to the gland. I spent months reading everything I could. Met with two urologists, two RO and one Med Onc. Exhausting crap but the story may change with secondary biopsy and MRI reads so it must be part of your work. I had the greatest level of confidence and trust in the Cyberknife Rad Onc who had 7 years with SBRT and many prior years of experience with Brachy. He was the only one who offered to let me talk with other patients. Quality of Life weighed heavily on me in my choice at 62, very fit and sexually active. The treatment is not a non event but it is very tolerable. I agree with TA, who offers very good references for treatment comparisons, that SBRT is a curative option, just like RP. The door may be closed to surgery but I don’t care. The next step, if there is one, just won’t be surgery. My SE were and continue to be minimal. No degradation of sexual function or urinary issues. Some lingering bowel urgency that is improving with a good diet and probiotic. Take your time. Get the best imaging and second reviews of everything. Good advice above on these. Keep asking questions and run when they criticize other options.

maley2711 profile image
maley2711

wishing you the best!!!!!!!!!!!!!!!!!!!!!!!!!

nycrunner profile image
nycrunner

HiI met many US residents and others from UK, Canada, Netherlands, Australia at the 3D Urology Clinic, Xiangtan.

The results he achieves are impressive.

No radiotherapy or surgery but he injects Chinese medicine directly into the tumor in your prostate.

Worth checking out particularly given your age.

Look up testimonials on YouTube.

Jmr11820 profile image
Jmr11820

I had a 4+3, Pirads 4, and opted for surgery. You might request a decipher test on your biopsy tissue to help further assess the risk of your disease. It’s pretty well validated at this point and insurance should cover the cost.

Tire2222 profile image
Tire2222

I was 4+3 on biopsy. 51 years old. I consulted with 2 surgeons and two ROs. RO wanted to do 4-6 months hormones and IMRT. I did not want to take hormones and that ultimately pushed me to the surgery. Upon final pathology my Gleason was downgraded to a 3+4. I was also concerned about long term side effects from radiation. I’m talking 20-25 years from treatment. I survived soft tissue sarcoma at 30 and have dealt with a secondary skin cancer from that radiation treatment. I know that may have nothing to do with prostate radiation but it affected my decision. In the end every man has to make his own decision. Best wishes

Murk profile image
Murk

I had robotic surgery to remove at age 64 in mid August this year. GS score was 5+5 with 7.8 PSA. Operation very clean and biopsy indicated no spread. Incontinence over in a week and now just short of 4 months full erections. Feels like I never had any issues. One of the best Doc's at Hopkins who has done thousands.

Bad news is like Tall_Allen mentioned, Doc admitted I have 50/50 chance of it recurring.

I'm curious what your doctor told you about ablation. I and others I know had Tulsa-Pro for a 4+3 and so far things are ok but it doesn't have the track record as the other procedures. Some doctors lump it in the category of "pretreatments." Also, there is some evidence, though scant, that ultrasound may have an abscopal effect; i.e., a stimulation of natural immunological systems. "

But it might just be bullshit, who knows. Anyway, I had it done and I hope it works.

JuliesHusband profile image
JuliesHusband

I'm weighing in on taking a long look at radiation vs surgery. I have issues with being sliced up in the first place and the fact I would have about nil chance for sexual function with surgery.

I was diagnosed at age 73 with Gleason 7 (3+4) with perineural involvement, tumor on the left neurovascular bundle (no chance of nerve sparing surgery). I decided on IMRT with the Varian TrueBeam and ADT.

The radiation takes into account all the issues that might be turned up with surgery without the knife. Just like surgery patients I will need to monitor PSA every three months for about 5 years and then go to the normal annual check.

Two months after 28 sessions IMRT and 6 months hormone treatment I was again fully functional. I did keep sexually active while on hormone treatment to maintain healthy erectile tissue.

I saw a note from one poster that he would avoid hormone treatment. I wouldn't avoid it for short term as it just gives men the same menopausal symptoms women deal with. Rough, but doable.

Jordache profile image
Jordache in reply to JuliesHusband

Well that’s good, God willing you will remain fine. I’m getting my brachytherapy on February 24, Than I will do 5 days of external radiation and Dr Zelefski at msk believes that no hormones are needed as it is still in the prostate. I will monitor it closely for the rest of my life. My partner and I have been together 20 years and will definitely hope to remain active. Just got over covid and I’m ready for battle. This forum has opened my mind to all the different modalities and I appreciate all the input.

Cetma profile image
Cetma

Get the Rp surgery, a bird in the hand is worth two in the bush, u will then know exactly what u have, the surgery is not bad these days, get a guy who base done several and u will be ok, not worth playing around o see what happens with Gleason 7 underway , u will be ok just get it done, cetma

Jordache profile image
Jordache in reply to Cetma

Thanks and I did consider that but went with brachytherapy. It went well now the 5 days ebrt, this month and Done. Btw hormone therapy for 18 months added. Dr. Said it was early and all should be fine, God willing. He felt very positive.

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