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decisions/decisions

930911 profile image
31 Replies

I was diagnosed w PC about 6 months ago with a routine annual visit to my physician. A PSA test came back with an elevated PSA of 5.2

Since then I've visited with a Urologist and had an MRI that showed cancer in the prostate & then a biopsy that resulted in Gleason 7, 4+3. I also had a full body bone scan & chest x-rays showing no cancer beyond the prostate.

These numbers are all new for me & now I find myself in a situation of having to choose my poison on which treatment to go forward with. Urologist had recommended surgery, but put me in touch with a surgeon & a radiation MD. I initially thought that surgery to be the only best option, but after meeting with radiation MD & reading & researching, it seams radiation might be a good choice.

Any advice/experiences with either is appreciated.

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930911 profile image
930911
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31 Replies
Burk profile image
Burk

Hi, and welcome to the club! Your diagnosis is nearly identical to mine. I was diagnosed 05/20 GL7 N0M0 11 of 12 cores - high risk. My URO wanted to do surgery. But after hearing the possible SEs of RP (28% chance of permanent incontinence and 100% chance of ED - no nerve sparing) I chose to seek a second opinion. I am so glad that I did.

After consulting with an RO I learned that RT has about the same OS as RP. I elected for 60gy of RT in 20 fractions + 24 mo adt. I just came off adt this month. T has not yet recovered but my psa nadir is <.1. God alone knows what the future holds but I have no regrets of the treatment choice that I made.

With the limited information that you provided I would think you would do well to consider RT. I am amazed how many men on this forum have had RP only to have a recurrence. RP alone does nothing to treat the possibility of micro mets (cancer cells that have escaped the capsule but remain undetectable). RT gives you the option of treating a broader area.

cesces profile image
cesces in reply to Burk

I believe currently, sbrt radiation treatment is generally preferable to imrt radiation treatment.

Tall_Allen profile image
Tall_Allen

These questions to ask yourself may help:

prostatecancer.news/2017/12...

Also, this article:

prostatecancer.news/2018/10...

cesces profile image
cesces

Sbrt radiation is probably the best choice

EaNa profile image
EaNa

Been there myself, not so long ago. I made the decision you're about to make based on what is known about the side effects from each. I opted for the RALP but now, only 2 years after, my PSA has risen to 0.2 and now I'm facing further therapy, probably a combination of ADT and radiation. Each case is different of course and I'm trying not to repent about choosing the RALP first. I was seen by a team of specialists that were consulting with each other and as such recommended the RALP but the weird thing is that when I asked the surgeon what he would do if it were him he said he would try to avoid surgery and recommended his radiation oncologist colleague for a combination of external and internal radiation. I wish I had listened to him but I had convinced myself that the RALP would be the best option initially based on what I perceived to have the least detrimental side effects (for me) but more importantly on the incorrect notion that radiation as a first option had less backup options if it failed. So if that is one of your concerns I would suggest researching that much more than I did. My decision was also influenced by my desire to minimize damage to other organs.

I also went with the RALP because I wanted to "get it over with", rather than face months of other therapy, but it's like the mechanic in the shop says, "pay me now or pay me later, either way you have to pay." :D

It almost seems like it's really a toss of a coin, if luck is on your side it doesn't matter which option you choose, if you're not so lucky you get to sample both (or more).

EaNa profile image
EaNa

I would also like to comment on your statement of "showing no cancer beyond the prostate." I also had all the scans before surgery and there was nothing there other than in the prostate but the post surgery biopsy showed margins at the mouth of the bladder which raised my staging from a T2 to a T3. My Gleason was also 7 (4+3).

1Ubspaine profile image
1Ubspaine

I too had an almost exact diagnosis to your own. My journey in decision making was not easy as I seemed to be punched around by each new Dr. Visit or study.

My personal decision was made after visiting with 2 urologists(both advocating surgery, that is what they do and get paid for). Then 2 different RO, an old school one suggesting 40 treatments and a wonderful RO at UTSouthwestern in Dallas, Dr. Garant.

If you are able to get to a teaching University hospital I strongly recommend it.

I had 5 Radiation treatments(not 40, that is for benefit of RO), 6 months of ADT, which is a pain in the butt, but now, 7 months after completion of final ADT I am good with my decision and have no SE.

Alturia profile image
Alturia

I was initially staged T2cN0M0 and the recommendation was for radiation + 6 months of ADT. And the nomogram predicated that if I had surgery there was a high probability that I would need radiation and ADT anyway. All the scans indicated that the cancer was entirely within the prostate. So I elected to have the surgery because I had a long history of BPH and difficulty urinating. The 2 ROs that I consulted warned me that the difficulty in urinating could get worse after radiation. I had a RALP and removal of 26 lymph nodes. Good thing I did because it was discovered that there was seminal vesicle involvement, some extension beyond the capsule and a small positive margin. Turns out I was T3cN1M0. I am now on ADT+abiraterone for at least 24 months and am starting full pelvic radiation. My MO acknowledged that if I had gone with radiation then he would have under treated me.

Cyclingrealtor profile image
Cyclingrealtor in reply to Alturia

I have almost the same pathology as you. 4 + 3, EPE, SVI , PNI , tertiary 5 at the bladder neck and 36 lymph nodes clear.. 8 months after RP I had recurrence in a deep operator on flip mode M36 lymph nodes clear.. 8 months after RP I had reoccurrence in a deep operator lymph node. I am on lupron and have had 33 rounds of EBRT. No abiraterone - but that is something that I need to inquire about. Who is your healthcare through? I have Kaiser.

Alturia profile image
Alturia in reply to Cyclingrealtor

My MO and RO are with Rhode Island Hospital which is affiliated with Dana Farber. I think the abiraterone and prednisone became the standard of care for our stage in the last year or so.

Cyclingrealtor profile image
Cyclingrealtor in reply to Alturia

I have seen that with SEVERAL guy but Kaiser is NOT known to be proactive in their care.

Thanksfor your feedback! 🙏🏼

Bruins11 profile image
Bruins11

I was in your shoes 4 years ago, chose RP and have been cancer free ever since. My only regret is that I did not do my due diligence when it came to RT. I have friends who chose RT and have had very good outcomes . I’ve been dealing with mild stress incontinence since my operation and it’s had a negative impact on my quality of life . Also,ED is a given part of the RP equation , so thoroughly check your options my friend before you pull the trigger. Good luck , I’m sure you’ll be fine.

aceace12 profile image
aceace12

Seems to me your doctors should have mentioned active surrvallience

dentaltwin profile image
dentaltwin in reply to aceace12

My understanding is that AS for Gleason 7 is quite selective, and for G 4+3 is pretty doubtful. Of course, that G 4+3 is critical--and no one has suggested repeat biopsy by Jonathan Epstein at Johns Hopkins yet--so I will.

Scout4answers profile image
Scout4answers

active survalience spares you any side effects and a good QOL also gives you plenty of time to make an informed decision.

See my profile for my journey

NYC_talker profile image
NYC_talker

I was diagnosed last year with 3+4=7 (favorable intermediate), and chose LDR brachytherapy -- radiation seed implants -- and one year later, I'm doing great. PSA down from 5.74 to .92 and all side effects in the distant past (and I really didn't have much on that front, no urinary issues at all).

I was advised against active surveillance (which I initially wanted to do) by the docs I consulted, as 3+4 is borderline (most on AS are Gleason 6) and it depends on the amount of pattern 4, and mine was too high. I doubt with 4+3 that you'll be advised to do AS, but certainly ask about it.

I did look at all options, and my urologist was very even-handed. Immediately knew surgery wasn't right for me and the studies showed equal outcomes with RT, and so glad I made that decision.

Then it was just a matter of which RT treatment to do. Because I was favorable intermediate, with a small prostate, no urinary issues, cancer confined to one side of prostate, no ECE, I was a good candidate for LDR brachy (as monotherapy, with no ADT). Not everyone is, and for you it might be HDR brachy or SBRT or both, and possibly ADT. Just depends on further details about your particular case, and your own preference. You have time, read up on all of it and ask more questions.

jjpeabody profile image
jjpeabody

Did you have a PSMA PET Scan. I had similar situation, I assume it's too early to determine a doubling time. I had RP with recurrence less than 2 years in surgical bed (micro cells missed apparently re surgery despite post RP PSA 0.009). I recently had SRT which has been surprisingly mild but will probably have lite incontinence re RP for life. To do again I would choose radiation + hormone therapy, RP recurrence stretched out the process for 4 years finalizing with SRT. ADT apparently did a good job shrinking cancer while waiting for SRT to where it did not show on MRI and PSA was less than 0.01, how long that might postpone things I don't know. If you need second opinion you might try televisit with Dr. Howard Sandler, Cedars-Sinai, great person. Good luck

fourputt profile image
fourputt

I had almost the exact same diagnosis in 2012. I made my choice to have surgery because it could be followed up with radiation later if needed. NOTE: This thinking could be very flawed and out dated now for all know. I did in fact have BCR 6 years after surgery and was treated with salvage radiation therapy which has lasted four years . You're doing the right thing to read and research....best of luck to you !

Teacherdude72 profile image
Teacherdude72

Simple answer: The choice you make will be the right one for you. NEVER, after a few years, second guess your choice. Both have their side effects but side effects vary for each of us and no one gets them all.

cancerfox profile image
cancerfox

"Pay me now or pay me later, either way you have to pay" from EaNa's reply is so true. I was Gleason 9 localized to prostate so I opted for ADT + IMRT + LDR Brachytherapy in 2021, and it was one lousy, miserable year. Plus I still have lingering bowel, bladder, and other issues from the radiation and ADT treatments. There's no free lunch with this delightful disease, "pick your poison" is definitely an apt description for deciding which treatment route to choose. Unfortunately, the alternative (doing nothing) would result in an even worse and more unpleasant outcome. The key is to stay physically active and positive. Good luck to you on your decision, 930911. 😐

Piano777 profile image
Piano777

Look into NanoKnife IRE focal ablation.

I was Gleason 7 (4+3) with PSA of 5.76. Post procedure I was PSA 1.21 and MRI scan clear at 6 months.

Clinical trial for Nanoknife: clinicaltrials.gov/ct2/show...

NanoKnife is not new but doing trial to get approved to specifically say it is for prostate cancer.

Article on IRE focal ablationphillipstricker.com.au/pros...

Article on focal ablation of all types: cancernetwork.com/view/prim...

930911 profile image
930911 in reply to Piano777

Piano777

This looks interesting, did you have this procedure done? If so where? I'm in Massachusetts, am going to research more..

Stellabell profile image
Stellabell

Early stages yet, I'm sure you will get a lot of replies. I was facing similar choices, went with radiation. My advice: try to find an option, that does not include a long stretch of ADT.

Piano777 profile image
Piano777

I did have the procedure done in Chicago area as part of clinical trial. Surgery center outpatient procedure. No side effects and MRI clean 3 months post procedure. Doesn't preclude any future treatments.

2 places in NY are part of clinical trial. Sloan Kettering and Northwell Health.

See clinicaltrials.gov/ct2/show...

Not sure this forum allows DM. If it does I can send my contact info

RP surgery is the most invasive. I suggest reading Dr Scholz' "Invasion of the Prostate Snatchers" book. You can also see his videos on YouTube.

My comment would be that the ADT knocks you around. I had 6 months ADT (Zoladex) pre radiation and then one injection afterwards, in January this year.

Still suffering from side effects, fatigue, loss of strength, loss of muscle mass despite regular exercise, loss of body hair, sore nipples.

The thing about radiation if PC recurs after RP is that generally you wouldn't need ADT according to the people I know have undergone it. And anecdotally anyway, there seems to be a fairly good chance of PC recurrence after RP.



MrFireworks profile image
MrFireworks

I'm about set on IMRT + HDR brachytherapy, excellent outcomes per the studies I've seen. Trying to decide whether to add ADT, or preferably something less destructive (e.g. fewer cardiovascular "events". The problem being, less damage to my body accompanies less damage to the perhaps -present cancer cells outside my prostate.

frankie08033 profile image
frankie08033

Hello 930911,

1st off, are you a Porsche person since your user name is 911930?

I have a 1979 911sc is why I ask.

Did you decide on a treatment? I'm in the same position with this decision.

RALP or RT.

Both Drs. say either way is good, but man is it hard to pull the trigger. Good to read all the replys and get as much info as possible.

Good luck with your treatment.

frankie08033

930911 profile image
930911 in reply to frankie08033

hey Frankie, only a Porsche guy would recognize that, yes 76 911S. Where are you located?

I’m still evaluating, got sidetracked looking at & trying to get evaluated for NanoKnife procedure, but am told I don’t meet the requirements. A bit of a setback so back to where I was. I’m meeting with a Radiation Oncologist from MSK in NY for a second opinion. I’m leaning in the direction direction.

Regards

frankie08033 profile image
frankie08033 in reply to 930911

Love those mid year 911s from the 70s. I’m in Richmond, VA.

Going to Penn Med in Philly next week for RALP. Finally made the decision for RP. Was on the fence until today. Finally went with my gut after much research and feel good about the decision. Very hard decision to make!

I’ll post after Surgery next week with an update. May be a while before I can get in and out of the 911. Will go for a nice ride this weekend. Best of luck with your treatment.

930911 profile image
930911 in reply to frankie08033

Enjoy the drive this weekend & best of luck next week.

BTW, my son’s name is Frank as was my father as well.

Godspeed

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