My Prostate Cancer Journey...

Midpack

Give me a museum and I'll fill it. (Picasso) Give me a forum ...
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I hesitate to start another thread, but I sorta hijacked the BPH thread, so I thought I'd quit doing that.

In short, I have intermediate risk prostate cancer. While that's better than high risk, it appears I won't be able to avoid some sort of treatment. Unfortunately there is no obvious choice - all the options including doing nothing, come with tradeoffs regarding cure rates, recurrence, side effects, etc. I am leaning toward brachytherapy (seed radiation) or HIFU, the side effects of prostatectomy or EBRT (radiation) are daunting to me from a quality of life perspective.

The PIVOT study (table below) and the ProtecT study don't show nearly as much benefit from even the most aggressive treatments versus doing nothing in terms of life expectancy - that's puzzling. That gives me pause given the side effects of treatment.

In the end, it's just a problem I need to research thoroughly, and pick a course of action. It is what it is...

Details (optional): 70 yo. Finally went to a local PCP recommended urologist this year (RP surgeon). He recommended a series of tests. He described WW, AS, RP, EBRT & briefly focal treatment - but left it up to me. I chose AS and have another appt in 6 months. But I would expect I may have to pursue treatment sooner or later.

Unfortunately there is no central source to quantify the risk/reward of every treatment option. The patient has to defer to the doctor, or piece it all together themselves. The outcome of any given procedure hinges on the skill & experience of the doctor performing the procedure - but that information isn't readily available either. I have researched PCRI.org, Sloan Kettering, Mayo Clinic, Cleveland Clinic, Johns Hopkins and various other sources.

Quality of life is a very high priority to me, so RP and EBRT are not appealing so far. It appears brachytherapy or HIFU may be better options - but hard to be sure. Just making up numbers here (as I don't know what to use) - but l'd rather have 10 more years, than 15 years with urinary incontinence, ED, rectal damage, etc.

I have found PCRI to be an excellent resource, along with CancerBetter and several others.

My 10+ year PSA history shows a very slow progression, last result 4.88.
Free PSA 12%
MRI - Prostate volume: 45 cm3. One lesion 6x6x9mm left mid gland, posteromedial peripheral zone, focal low T2 lesion, PI-RADS 4
Fusion Biopsy -
Region of Interest from MRI: Gleason 3+4=7, 20%, grade 2, tumor 30% overall
Random 10 cores
LAL & LML Gleason 3+3
LBL & LMM Gleason 3+4, 30%, grade 2, tumor 5% of overall
LBM Gleason 3+4, 40%, grade 2, tumor 50% of overall
Right all 5 clear
Whole Body Bone Scan - Negative
Oncotype DX GPS (genetic testing)- 48% chance of metastasis, 14% chance of death within 10 years if treated. My Dad lived to 96 yo with no cancer of any kind, so evidently it comes from my Mom's side even though she never had cancer of any kind either and lived to 93 yo.

PIVOT Survival Rates upon initial diagnosis of intermediate PC4 yrs8 yrs12 yrs16 yrs
Radical prostatectomy98%96%95%92%
Watchful waiting98%94%90%86%
 
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After 12 years of active surveillance at 73 I think I will beat the odds of life expectancy. In all these 12 years only 1 spot went from a nothing burger to medium risk. Ok, my lifestyle, no meat for 30 years not much dairy, plant based cheese get tastier every year. Daily walks, lots to do around the ponderosa. I had a HoLEP procedure performed to reduce my prostate and take a load of my kidneys, it may also help my PC. My PSA has been under 4.0 for almost 10 years.

Some will say cut it out rather than change their lifestyle, do the research.
 
My husband was diagnosed at 48 and by 52 needed treatment. He chose the radiation seeds to be implanted and it made him impotent but he was having issues at 48 which is why he went to the urologist in the first place.

It also gave him some urinary issues. When he had to pee he needed to find a bathroom within 10 minutes or he would have an accident. We are now divorced but I see him occasionally because of still being in my stepson’s life and at 65 he’s considered cured because he’s had no reoccurrence.
 
As I mentioned in the other thread, this could be an issue for me in the future.
My fiance and I are active and the thought of being impotent would really bother me as of now at 64 y.o.
With an 86% chance of survival with doing nothing, that takes you to age 86. Perhaps that is the way to go.
 
My father had prostate cancer in the mid 1990s and opted for brachytherapy inserted beads with hormone therapy. He did fine and as far as I know had few if any side effects. He chose that treatment due to the fewer side effects. He is now 83 and fine. Other health issues are now predominant...mainly due to age and genetic factors. I tell this story to give you one piece of data regarding long term outcomes of the type of therapy you are contemplating.
 
With an 86% chance of survival with doing nothing, that takes you to age 86. Perhaps that is the way to go.
Doing nothing may give him a 86 chance of surviving which sounds pretty good to me. But that doesn't mean he won't have problems for years which could be mild to pretty bad. Just saying, doing nothing has it's risks/issues too!
 
I'm on active surveillance. Doc says a low percentage risk that prostate cancer will kill me in 10 years. So I do nothing other than checkups. I'm 81. Of course that means they expect something else will kill me.
 
I just made a significant donation to pcri.org - what I have learned from their YouTube videos, and a one on one phone consult today has been most appreciated. I've chosen a PC cancer center, and asked for a referral from my general urologist, and will move forward with my options.
 
^^^^
I've seen a number of their videos since I have two friends with PC and I'm probably at high risk too. I feel I'm pretty well informed and a lot of that goes to Alex and Dr Scholz @ pcri.org for the well made videos on the PC.
 
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I might have mentioned this in another thread but a good friend of ours got PC at the same time as my husband and chose to do homeopathy which was really nothing. He was 13 years older than my husband. He died 2 years ago at 75 but it was an awful decline.

He was impotent for 5 years and had many urinary problems eventually leading to permanent catheter. His mind also started to have difficulties and don’t know if he had cancer in his brain. He wouldn’t go to the doctor. One night he had a stroke and went to the hospital. They did tests and said the cancer was everywhere. He was dead in a day.
 
Midpack

Not one to give advice on what to do, but the latest Peter Attia podcast has some stuff in prostate cancer with a guy called Ted Sheaffer.


Supposedly one of the best prostate surgeons in the country. He’s the one that did Ben Stillers prostatectomy with no side effects either urinary or sexual. The skill of the surgeon is paramount here, and I’m sure some luck.

Maybe a chat with him?


 
Midpack, thank you for sharing and wish you good fortune.
I am 67 and have prostate enlargement with PSA results ranging 3.9-4.3.

Presently following active surveillance stopping short of recommended biopsy for now.
Lately my visits to the bathroom have increased.

I am curious to know if you are struggling with discomfort, pain, extra trips to bathroom, etc.?
 
So far, I've not had to deal with this issue (BPH, yes, but no cancer at this point.) I'm not sure what I would do and have no advice.

I've seen friends die of PC and it's not a good way to go. I think THAT issue would inform my choice as much as the serious side effects of treatment.

If loss-of-time on Earth were the only issue, then I'd be tempted to ignore PC so YMMV.
 
Midpack,

To me, the survival rates make no sense at all. Obviously they are looking at all ages. A "normal" 70yo does not have those rates. So, I guess I would look at quality of life, for the various options, which appears to be exactly what you are doing.

Good luck, and I will say a prayer.
 
Midpack, thank you for sharing and wish you good fortune.
I am 67 and have prostate enlargement with PSA results ranging 3.9-4.3.

Presently following active surveillance stopping short of recommended biopsy for now.
Lately my visits to the bathroom have increased.

I am curious to know if you are struggling with discomfort, pain, extra trips to bathroom, etc.?
I have no discomfort or pain at all, no restrictions in activity thankfully. If not for annual physicals and PSA follow up, I’d have no clue anything might be amiss.

However, extra trips to bathroom have very gradually (years) increased. I almost never had to get up at night, now I do have to visit the bathroom once most nights. From what I’ve read that’s not at all uncommon as we age, and it could just be BPH or simple prostate enlargement, not PC as you probably know.

Update: While I was surprised and upset on learning my genetic odds yesterday (I wrote post #1 while my head was still spinning somewhat), as the day progressed I calmed down considerably. Now my engineer brain is just problem solving, planning how to proceed. I’m ready to face this issue, and accept the consequences of my choices knowing there’s no “right answer.” At least it’s good to know PC is a relatively slow growing cancer, there are worse Dx I could be faced with. Thanks.

DW was teary when she heard the genetic odds as well. However, she’s calmed down considerably as well. She’s a keeper!
 
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I was diagnosed in late 2022 with a Gleason 9 tumor but thankfully no spread. As a healthy 61 year old this came as a bucket of cold water.
2023 was spent getting 44 sessions of radiation with Hormone Deprivation Therapy to go along with it.
This year I am getting back to normal and thankfully all my numbers look good and hopefully have eliminated the beast.
I was treated at Dartmouth Hitchcock and was very happy with the team there.
Stay on top of your PSA fellas! Early detection is key.
 
Gleason 4+3. Brachytherapy 5/23/24 no ADT (hormone treatment).
No ADT was an incredible relief for me. Quality of life was/is important to me.
PSA testing in Sept to verify results. PSA can make an upward bounce after seeds.
Bowel and bladder issues back to about 80% normal. Never were too bad.
Satisfied so far. Anxiously awaiting Sept PSA.
Amount of info to digest is overwhelming!
 
Peter Attia did a recent interview with a prostrate specialist. Some interesting thinking regarding hormone suppression.

I guess I'm too lazy to watch, but does he also suggest that treatment with female hormones is not efficacious? Both friends I lost to PC were taking these hormones and they seemed to w*rk - for a while. Thanks.
 
Back in 2013, DH had Gleason 5+5. But only in 1 of 13 biopsies- the other 12 being negative. His PSA was 4.6. Tests showed cancer had not spread beyond the prostate. He had 2 years of a shot every 6 months of hormone therapy. At the end of the 2 years he had radiation therapy 4 days a week for about 5 weeks. Since then, follow up PSA tests at first every 6 months, now only once a year. Reoccurence is determined to have occurred once PSA exceeds 2.0. DH's PSA has bounced around between .4 and .8 during the 10 year period. The hormone therapy was tough, extreme fatigue, night sweats, weight gain. He has ED and some urination frequency. He is now 77.
 
I guess I'm too lazy to watch, but does he also suggest that treatment with female hormones is not efficacious? Both friends I lost to PC were taking these hormones and they seemed to w*rk - for a while. Thanks.
I don’t recall the guest mentioning giving female hormones to men. I think he did mention that we all naturally have some of both in us.
 
Back in 2013, DH had Gleason 5+5. But only in 1 of 13 biopsies- the other 12 being negative. His PSA was 4.6. Tests showed cancer had not spread beyond the prostate. He had 2 years of a shot every 6 months of hormone therapy. At the end of the 2 years he had radiation therapy 4 days a week for about 5 weeks. Since then, follow up PSA tests at first every 6 months, now only once a year. Reoccurence is determined to have occurred once PSA exceeds 2.0. DH's PSA has bounced around between .4 and .8 during the 10 year period. The hormone therapy was tough, extreme fatigue, night sweats, weight gain. He has ED and some urination frequency. He is now 77.
So glad the treatment has been effective for your DH. I live in fear of PC. I have lost too many friends to this disease. My PCP in Hawaii wants to cease PSA testing (because of my age) but my PCP here on the mainland just ordered one. I guess I'll go with the test and hope everything is okay. Not sure what I would do if it shows an issue (which is why Hawaii PCP wants to cease the test. He says a high PSA would mean he would "have to DO something.") I guess it's a "guy thing" to deal with so I'll deal with it whatever happens.
 
Back in 2013, DH had Gleason 5+5. But only in 1 of 13 biopsies- the other 12 being negative. His PSA was 4.6. Tests showed cancer had not spread beyond the prostate. He had 2 years of a shot every 6 months of hormone therapy. At the end of the 2 years he had radiation therapy 4 days a week for about 5 weeks. Since then, follow up PSA tests at first every 6 months, now only once a year. Reoccurence is determined to have occurred once PSA exceeds 2.0. DH's PSA has bounced around between .4 and .8 during the 10 year period. The hormone therapy was tough, extreme fatigue, night sweats, weight gain. He has ED and some urination frequency. He is now 77.
The one thing I gained from the Attia and Sheaffer podcast was that we should do everything possible to avoid the hormone therapy. Awful side effects
 
Though there are much closer options, I made an appointment at Duke University Cancer Center for early Sept. I hope I’ll be a candidate for focal therapy like brachytherapy/seed radiation with a lower probability of side effects, but I’ll see what the team recommends after they’ve reviewed my history and test results. If I have to go with surgery or EBRT, the outcome will depend entirely on the skill and experience of the doctor, that’s why I’m willing to travel to a center of excellence versus best available local doctor(s). The variation in statistics I’ve seen for an average surgeon versus an elite PCa surgeon are staggering re: success, recurrence, incidence of side effects, etc.
 
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