Thinking surgery...

[Orgazmo]

Hi Guys,

Just found this group, & glad to know you are there.

I am 68, considering RP in September, based on biopsy results of April 19, ordered due to PSA rate of rise (.7 in 2015, then .8, .9, 2.1, 2.5, 3.5, 4.1 in 2021). Since biopsy, I have met with my urologist and a robotic surgeon, and liked both a great deal.

Follows:

1 - biopsy summary

2 - my situation

3 - questions. Your experience & advice appreciated!

___

1/ Biopsy summary

“We did find intermediate grade prostate cancer on the biopsies. The volume of cancer was low-moderate, so along with the normal PSA, we have good reason to think this is a very early detected prostate cancer. So early, the PSA is technically normal for your age still. The trigger for the biopsy was the rate of rise over time.

For a man your age, we almost always recommend surgery or radiation but of course, the man always has the final word on that. The reason is, this intermediate grade cancer can be aggressive but it takes many years for the cancer to be lethal. For you, there is a 99% chance that you will be alive in 10 years if you have surgery.

Your Prostate Cancer Risk Group: Intermediate

Pre-Treatment PSA: 4.1

Your Estimated Prostate Size: 17cc

Your PSA Density (corrects PSA for size of the prostate): 0.24

Gleason Grade (from most recent prostate biopsy pathology report):

Primary Gleason Grade: 3

Secondary Gleason Grade: 4

Biopsy Gleason Sum: 7

1997 Clinical Tumor Stage: T2a

Your Prostate Biopsy Pathology Summarized Information:

Number of Positive Biopsy Cores : 4

Number of Negative Biopsy Cores: 10

Biopsy Prostate zones and amount (mm length or % involvement) of cancer identified in each location:

Right Apex: OK Left Apex: OK

Right Mid: 5mm Left Mid: 5mm

Right Base: OK Left Base: 5mm

From Memorial Sloan Kettering Cancer Center Nomograms:

- Probability of cancer-specific survival after radical prostatectomy: This number shows, as a percentage, your probability of surviving prostate cancer for 10 years following radical prostatectomy. This probability means that for every 100 patients like you, 99 will survive prostate cancer and 1 will have died from prostate cancer

10 yrs: 99%

15 yrs: 99%

- Progression-free probability after radical prostatectomy:

This number shows, as a percentage, the probability that your serum PSA level will remain undetectable (less than 0.05 ng/mL) at 5 years and that prostate cancer will not progress or recur after radical prostatectomy. This probability means that for every 100 patients like you, 88 will remain disease-free 5 years after surgery and 12 will have a progression of disease within 5 years.

5 years: 88%

10 years: 80%

Extent of Disease Probability

Organ-confined disease: 65 %

This number shows, as a percentage, the probability that the cancer will be found to be confined to the prostate gland when the prostate is removed. Men diagnosed with this clinically localized, 'organ-confined' disease have a number of treatment options available.

What this result means

A low probability of organ-confined disease does not necessarily mean that surgery cannot cure the cancer. About 50% of patients who do not have organ-confined cancer have long-term freedom from recurrence following surgery. The probability of having organ-confined prostate cancer is not equal to the probability that surgery will provide long-term freedom from recurrence, because the cancer does not have to be organ-confined to be successfully treated with surgery.

Extracapsular extension: 33%

This number shows, as a percentage, the probability of 'extracapsular extension,' meaning the probability that the cancer extends through the capsule of the prostate into the surrounding tissue.

Lymph node involvement: 3%

This number shows, as a percentage, the probability that prostate cancer has spread to the pelvic lymph nodes.

Seminal vesicle invasion:2%

This number shows, as a percentage, the probability of 'seminal vesicle invasion,' which occurs when prostate cancer has spread into the seminal vesicles - glands attached to the prostate that help to produce semen. This number shows the probability that the cancer has spread to one or both seminal vesicles.

___

2/ My situation

About 20 years ago, I began having urinary problems — mainly frequent urgency with about 5 seconds warning, and rising to pee about once an hour at night. QoL plummeted. Eventually diagnosed as BPH (benign prostatic hyperplasia). Flomax was useless and made me dizzy. I had laser surgery in 2008, outpatient, catheterized a few days, no problem.

Improvement was significant but not dramatic. Tamsulosin helped some. Prior to surgery, urologist neglected to discuss high likelihood of retrograde ejaculation (semen squirts into bladder, is pissed out later). No more cum was disappointing (ok, shocking), but partners were understanding. So i’ve had 13 years to get used to no cum, limited erections, diminishing libido.

Some crucial changes happened 2-3 years ago. Frustrated with near-constant “gotta go - NOW” situation, I was referred to a new urologist, who suggested a different diagnosis — overactive bladder — and prescribed trospium.

It changed my life, literally overnight. One pill a day, and I can plan for my next piss. Now I go for hours without even thinking about having to pee. Hold it 15 or 20 minutes? No problem. Now I get up at night to pee once, or not at all. I LIKE my urologist. QoL skyrocketed.

He is also the one concerned about my steadily rising PSA. Recommended biopsy. Now recommending active treatment.

Two other key elements affect my consideration.

- i’ve been partnered for 20 years, and rowdy sex has been elusive for quite a while. No big deal: he’s my guy, laughter & affection abound, he’s the one I want to curl up with when the day is done. All good. Quite unexpectedly, we got to know a hot man half our age, who has now been living with us 3 years. He sounds impossible — handsome, smart, funny, excellent cook, does heavy lifting — and horny. Older chunky guys turn him on. But he is also totally mellow and understanding. It does wonders for the ego, at 68, to be drying off from the shower & have a guy, 34, spring instant boner when he sees me naked. Without searching or planning for such an arrangement, we’ve stumbled into a life that leaves all of us happy, encouraging, no issues. I don’t take that for granted. I have lucked out to he locked down in this pandemic with these 2 amazing men. As I’m facing treatment & associated further ED challenges, I have new “motivation” to want to hang on to (or reclaim) some sexual energies. So I want to pursue the choices that will give me the optimum balance between cancer-freedom and (eventual) sexual enjoyment.

- We maintain a non-habitational presence in the San Francisco Bay Area, are there a few weeks a year for medical care & stuff, but spend most of our lives in Mexico. More about that below.

___

3/ Questions

— I want this cancer gone. And I want to make smart, informed decisions. If I understand correctly, scar tissue from my prostate laser surgery 13 years ago likely complicates radiation treatments, so surgery is preferred, yes?

— RP will likely be scheduled in late September. This appeals for several reasons: pandemic management progress (I am fully vaccinated), time to get more exercise, work on Kegels, generally improve health, learn more about all this. Suggestions?

— My docs tell me that after my robot-assisted surgery in Oakland, outpatient, I will likely have pain, discomfort, catheter up to 2 weeks. No heavy lifting, but I should be good to go by a month afterward. Does this ring true? One of my concerns — though I will be able to arrange local lodging for 6 weeks or so, some assistance from friends occasionally — mostly I will be on my own during recovery. The friend I’ll be staying with is 70, immuno-compromised (transplant), and my presence ideally should be to aid her rather than the reverse. Can I drive/shop/cook post-surgery? Am I missing anything? Do I need to rethink this?

___

I’ve spent several hours now reading through postings here. My feelings are all over the map: touched, encouraged, alarmed, confused. Thanks in advance for support, for information & suggestions & hope. I’m glad to have found you guys. — Gary

[Tall_Allen]

Hi Gary,

Thanks for the detailed description of your diagnosis and treatment history, and congratulations on the thruple! Does he have a similarly-minded friend in LA?

1) Let me state my (very informed) prejudice right off the bat - I do not think any gay man should have a prostatectomy. I belong to a gay prostate cancer support group in LA, and I have yet to run into a man who, hearing about the experience of the guys who have had SBRT, wish they hadn't explored more. Most have been left with some kind of ED (not to mention serious size loss, climacturia, and loss of cum), while we SBRT guys have no ED, no size loss, and some (unlike me!) have not lost their ability to cum.

2) First, cure rates and toxicity. For your "favorable intermediate-risk" PC, all therapies have about the same cure rates. As you know from the nomogram, your odds of a cure with surgery 5 years down the road is 88%, and 80% at 10 years. For convenience, let me average them to 85% at about 7 years (you'll see why in a second). For similar risk men with SBRT, thee 7-year biochemical recurrence-free survival is 91%., 85% for IMRT,, and about 90% for HDR brachytherapy monotherapy. (LDR brachytherapy is ruled out by your prior TURP). For SBRT and HDR brachy, Sexual, urinary and rectal toxicity are extremely low, and much lower than the risk with surgery.:

prostatecancer.news/2018/10...

auajournals.org/doi/10.1016...

In fact, there was a randomized comparison done (in the UK) where favorable risk patients were randomly assigned to surgery, EBRT or active surveillance. Oncological results were the same, but patient-reported outcomes were very different:

prostatecancer.news/2020/02...

3) Prior laser TURP. It increases the risk of urinary side effects with both surgery and radiation, but the 13 years of healing has allowed enough time that that hopefully will not be much of a problem. Because your real problem is bladder spasms, I would be much more worried about surgery (because of the nerve damage) than radiation.

4) Doctors. It is troubling to me that you have only talked to urologists so far. To a hammer, everything looks like a nail, and furthermore, surgeons often have the "hot dog" mentality - they think that a scalpel fixes everything and they brag that their results are much better than average (then, who gets the worse-than-average results?). Fortunately, in the Bay Area, you have access to some of the best radiation oncologists in the US at UCSF. I strongly recommend you talk to Alexander Gottschalk about SBRT and Joe Hsu about HDR brachy.

5) Take your time. Prostate cancer is a very slow-moving disease at this stage, and you have plenty of time to meet with expert practitioners and make an informed decision. The "just cut it out" stage is the first one that we have all been through. As the initial panic subsides, you will be ready to consider your options more clearly.

6) Questions to ask: Here are some questions to ask as you meet with various doctors and to ask yourself. Adapt freely:

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

I will also PM you with some info I can't share publicly.

[Blackpatch in reply to Tall_Allen]

I’m curious to understand why you don’t think ANY gay men should have RP - I’m notgay and have in any case had RRP so it’s a matter of curiosity rather than personal relevance.

Thank you...

[Tall_Allen in reply to Blackpatch]

If you're not gay, it's not something I wish to discuss with you. This is a site for gay men, not a place to assuage your curiosity.

[Blackpatch in reply to Tall_Allen]

Clearly I don’t pay enough attention to the detail in the Healthunlocked e-mails I receive - it’s only since receiving your rather rude reply that I checked and understood this is indeed a gay men- specific site; i don’t know why I received this daily e-mail rather than the usual APC one.

That said, I strongly suggest you put some of your not inconsiderable talent into writing more tactful replies in future.

[Orgazmo in reply to Tall_Allen]

Many thanks, Tall_Allen! You have given me much to think about. And research. I will try to keep in touch.

[EdinBmore]

For whatever it's worth: I agree with TA; particularly re RP and gay men. Given what I've read and the men I've talked with, I would suggest you explore all options. Also, suggest a chat with a medical oncologist. Take your time. Read. Learn as much as you can.

I chose EBRT (IMRT) and bracyboost with ADT (not sure I'd do the ADT again...for me, a disaster.

This is a great site for information and support.

EdinBaltimore

[jctaylor]

Hello Gary,

To reply to the questions at the end of your post... I had RP at age 68 two years ago. I was over night in the hospital and had a catheter for a week after surgery. I was up and about the day after I got home. The pain was quite manageable but with dealing with the catheter and some post surgery weaknesses I was very glad to have my husband near by to at least offer moral support. After the first week I probably could have been fine on my own. I don’t remember when I took my first solo trip to the grocery store, it may have been two weeks. Personally, I wouldn’t have been comfortable going into a situation where I was a caregiver immediately after surgery. This was my experience anyway. Feel free to PM me if you want to talk privately.

Good luck and congratulations on the living arrangements, many of us are envious!

[nacinla]

Hi,Sounds like you are in command of your situation, which is a good thing. I want to second what Tall Allen said. I was diagnosed in LA in early 2014. My first urologist (more on him later) said he recommended surgery (but he also gave me the name of a radiologist to talk to, which I didn't). I talked to a (straight) high school buddy and he had had no issues with his surgery. I saw another urologist at UCLA who said, first thing, "Either surgery or radiation will be EQUALLY effective for you." But even UCLA's own questionnaire to help you decide was biased toward surgery. Then I found out about the LA Gay Men's Prostate Cancer Group — and Allen. He helped me with my research, showing the study results that were relevant to my situation (PSA before treatment 5.3, Gleason 3+4, Intermediate risk, T1). Long story short, I had been about two weeks from surgery and then opted for SBRT. (One factor was I could not risk having urinary incontinence because I traveled for work, teaching software, and I could not piss my pants in front of a bunch of strangers. Minor, I know, but it was a factor. Also, penile shrinkage was a non-starter.) I had five high-dose treatments over about 10 days. I continued working throughout the treatment and going to the gym. I did have some pain on bowel movements that went away literally overnight after a while and I had three episodes of bleeding, which was a bit frightening, but I am on blood thinners. That's gone away as well. Here's my take: TAKE YOUR TIME and make the best informed decision for you. You have access to some of the best health care at UCSF. Do not be pressured by surgeons. When I told the second one I saw, at UCLA, that I had opted for SBRT he huffed, "What are you going to do when it fails?" I said, "I'm not planning on it failing." And that initial urologist/surgeon who did my biopsy and recommended surgery at his facility? I saw him on a late-night TV commercial a year or so ago hawking HiFu — at his facility — so I gather he's now leaning on his patients to do that to pay for that expensive equipment. Finally — and this is purely anecdotal — look at the threads on here and see who's reporting issues with their treatment. We had one guy in the LA group die after SBRT, but his circumstances were unusual, and at least two guys who had surgery who had no issues at all (apparently; at least they report being off urinary pads). Otherwise, what I see is a lot of guys who've had surgery dealing with aftereffects and rising PSAs. Again, that's my anecdotal observation; everyone makes the best decision they can. I spoke with a friend of a friend in Texas and it was clear he had already made up his mind about surgery because he said, "I just want it out." Me? I watched my PSA go down over the past seven years. Advisory: You have to be patient about it. My latest PSA, taken this past Thursday, was <0.1, which is where it's been for the past two years. I have no idea what the future holds. But for now, I'm not peeing in my pants and I wake up with stiffies. And that's a start.

PS: When you interview those robotic surgeons with their promises of "nerve-sparing surgery," ask them if they'll stop the surgery if they suspect cancer has escaped the prostate. Answer: They won't. It's all or nothing, baby.

[Orgazmo in reply to nacinla]

Hey Nick! Thanks so much for this detailed and encouraging reply. You guys in the group have been so helpful; I’m hoping to join you via zoom in June. Meantime, I’ve slowed everything waaay down — cancelled the surgery, scheduling consults & 2nd opinion, reading everything I can. Friend of 40 years in Chicago who is extremely anal (not that kind!) & had SBRT about the time you did documented every detail about his diagnosis, thoughts, treatment, & status, and has sent me his journals, spreadsheets, charts. Very helpful! I had not realized how reassuring it would be to hear from guys who’ve Been There, who get it & are happy to share their journey, who don’t have an agenda or financial incentive to push for a particular solution. And it is certainly a relief to take a step back, realize I can afford to slow down and educate myself, then wisely pursue the course best for me. Again, I appreciate you, Tall_Allen, & others who have been so kind to smooth my way. Thank you, thank you.

[nacinla]

Glad to be of help. Keep us posted!

[Dropout_Guy]

Hi Gary. I have to agree with Tall_Allen. I had my prostatectomy August 2020. Even though I did my research, I was basically convinced by the powers that be that I should have the operation asap. I had no symptoms and regret not waiting longer. Now I have continence issues, though that is improving. I also have severe erectile dysfunction. As you can imagine, I feel like I've gone off a cliff. There is no real support from the urologist which I'm not sure is to do with the pandemic or not. Either way it is bad form. I guess I was just a piece of meat that needed to be seen to. If I had come across this forum before my operation I would certainly have had second thoughts.Take your time deciding what to do. Do as much research as you can. As was said above, prostate cancer is fairly slow growing so you have time. Best regards. Denis

[Vayshe]

Hey,

First, I want to echo the advice of others to really take your time in consulting others and researching a treatment that seems to balance the factors you really care about.

Have you had a multiparametric MRI (with & without contrast), also called mpMRI of your prostate? That may provide some additional information about possibility of cancer outside the capsule vs contained, which to my mind also influences the surgery vs radiation question.

I was diagnosed with similar disease last fall at age 51: Gleason 3+4, PSA 6.5 falling to 4.2 pretreatment, 7 positive biopsy cores all on the right side. mpMPRI showed what looked like cancer located in two closely placed nodescompletley within the capsule that aligned with the biopsy results. Even mpMRI is not great at imaging prostate cancer, so we take that with a grain of salt. I consulted with local folks, but also radiology at Memorial Sloan Kettering in NYC (I'm in NJ), Univ of Pa, and Mayo Clinic.

After some consultation and support group participation, I decided I personally wanted to take a higher risk for recurrence balanced by very reduced quality of life impacts from focal therapy. From your post it seems like you may already be familiar with this modality and maybe aren't a candidate?

I consulted with two laser treatment clinics in Palm Springs and southern FL and also the focal treatment program at the Mayo Clinic in Minnesota. In the end I opted for a cryoablation focal treatment due to the two regions needing treatment and better continuous "coverage" with cryo vs laser. Nicely as well, the cryo method was covered by my insurance, where laser would not have been.

I had the procedure on last Wednesday and am feeling very well. Catheter came out on Friday morning after 48 hours in place and we flew back home on Saturday. I mowed our lawn on Monday with our walk-behind mower. The side effect I'm having now is a moderate change to my urgency and frequency of urination, which I assume will subside after swelling goes down.

I don't know if your research or others will agree, but my analysis was that the higher the certainty the cancer is "out and gone," tends to also come with higher likelihood of impacts to qualify of life. For me, I was willing to balance those with focal treatment, knowing I might have to then have another treatment later one, hopefully never.

Hope you find options that work for you!