Greetings gents. They are, of course, offering me a choice between radical prostatectomy and radical radiation + hormone therapy. I am aware of all of the likely and possible side effects of both treatments. I would love to hear from someone my age and health level - I am extremely fit - about what life is like after either of these treatments. I am particularly worried that when my testosterone is lowered from the current level of 700 to almost nothing (if I choose the radiation option) this will seriously reduce my quality of life. I am a very active, energetic and driven person, and don't want to lose that. My second major concern is about the possibility of urinary incontinence (both treatments) and/or rectal problems (radiation). A realistic account of what that's like for someone in my age group would be appreciated. Good luck to everyone else in this community.
healthy and fit 55 year old with adva... - Advanced Prostate...
healthy and fit 55 year old with advanced local PC
HU1001,
Sorry for the crummy news. Kudos for doing your homework.
It would help if you added more details to your profile. Psa. gleason score, results of any scans etc…
Thanks for the sympathetic reply, and here are my stats: G7 (4+3) on the left lobe, possibly spread to the seminal vesicle, G6 on the right lobe. Have had MRI and biopsy + CT and bone scans (all showing no metastasis for now). Original PSA 25. Later tests: 18, 19 and 20. Let me know if I should add more details, and thanks again.
Sorry to hear your situation. I have 4+3 Gleason score PSA 4.3 with recurring prostate cancer in my right seminal vessel. Several top US surgeons recommended not having surgery due to previous radiation that caused scar tissue. That leaves me withthe only choice to start hormone reduction soon, praying it will slow my cancer from expanding to other areas. My study indicates one can still have recurring cancer after radical surgery, so why would I go through that if it could be performed in my case. So in that way, I’m glad I could not have the radical surgery due to my proton radiation targeted therapy 8 years ago. Like you, I am very active, but a little older at 71.
Discussing hormone therapy with my wife and MDs, I come to the realization that hormone therapy can add many years to life and hopefully during those years, LU177, will become more plentiful in the USA, and can be given to early diagnosed patients while presently only available where their cancer has expanded from the prostate to other areas.
National expert MDs explained that they would not want to radiate my seminal vesicle as that location butts right up against the bladder and rectum. While the targeted radiation would hit the exact area, the resulting radiation “waves” would be like a rock thrown in water hitting a certain area, but causing waves that go through the water. Those other radiation waves would hit the close bladder an rectum creating other serious issues, thereby not recommending targeted radiation. Like you, I am in the same boat and hate to loose my manhood, but if it will slow & reduce my cancer before it expands from my seminal vesticule, I am all for it. I also understand that Xtandi given along with Lupron is shown to be more effective in reducing the PSA & cancer size in our situation. Best wishes to yo. Keep the faith.
Will Of The Wisp
Very interesting and thanks for sharing. I walked down your road: RP first, then IMRT (VMAT) - 2020 to two spots and then 2022 to prostate and pelvic bed. Dx in 11/2017 with PSA of 2.222 I’m now here, almost five years later, under ADT (Lupron only) with testosterone of less than 0.1 and PSA undetectable. Have some SE, but exercise daily (running, weight lifting, gym), follow a strictly vegan diet without sugar, oil and alcohol and enjoy every day of my life. Never complain.
Keep on fighting - seems that we’ve had good doctors and support from HIM.
Thanks - especially for the additional info about the vesicle - and good luck to you going forward.
When it comes to side effects, they happen, in various degrees, to all of us. You are stuck between a rock and several potential hard places
The keyword there is “potential”.
The good and bad news is you get to pick the side effects you may have to live with. Think about your personal worst case.
I would say though your concern about hormone therapy in conjunction with radiation should be tempered by the fact that it is not, at this point, forever.
They are trying to cure you.
So a temporary period of hormone therapy to get you to a cure will not be a life long decision if they are successful. You will feel tired but your exercise routine would mitigate many of the side effects, particularly weight bearing/resistance exercises,
Good luck with it all and I hope they get it all whatever you choose.
Thanks for the reply. Excellent point (about it possibly not being forever). In fact that seems the likeliest scenario, according to my urologist. Can I expect my testosterone to bounce back completely, or would there likely be some residual damage to my system in that regard?
Most guys have their T come back because the length of time on hormone therapy is small.
Got it, thanks.
One advantage to Orgovyx is that testosterone recovery is much quicker. Another advantage is that it is a daily pill rather than a depot injection.
Good to know, thanks.
My T was 700 before RP, radiation, 18 months of Lupron and 12 of those, I was on Zytiga/prednisone. T 18 months after ADT is 250.
Thanks for that info. Were there physical or mental/emotional changes while on ADT? And how about at T 250: any difference, subjectively, from when you were T 700?
Yes. Body composition change and increase in body fat. COVID didn't help since the gyms were either shut down or we were afraid to use them. Passed me off but I figured I could get through 18 months of anything. I am in Tijuana getting dendritic cell therapy. Similar to Provenge which is approved in the US but patients can't have it unless all else fails.
Is that 1 months after stopping ADT ? Thanks in advance , Farlow
No , I'm 18 months out and your strength and stamina will ramp up.
Hello HU1001. If I were in your shoes I would opt to kill the host. Take that sucker out if that is an option. Yes, there are some down sides but that is true with all treatments. The one huge advantage to killing the host is that going forward PSA expression won't be coming from a wounded prostate so it is easier to evaluate. Good luck on your fight. A Good attitude will carry the day!
Thanks for the reply. Related to my question below about ejaculation: prior to my initial PSA I was sexually active. I stopped being so shortly afterwards, and as you can see from my stats the PSA subsequently dropped. Is there a known connection between ejaculation and PSA increase. Would it be like irritating the wound?
That would be a question for the urologist. I had nerve sparing prostate removal and from my sample size of one, any ejaculation will be dry. But with nerve sparing, you still have the sensation. I admit, with ADT the libido goes to hell but we are in the fight for our lives. As far as energy level, it will drop for sure but a very fit dude can march on.
I don't recall off hand the exact timing but ejaculation, bike riding, within 48 hours of test (maybe 72hrs?) might for some affect PSA reading.
I had seminal vesicle invasion in my pathology report. This is pure speculation on my part but I believe that my reduced ejaculate size was a result of the svi. I had noticed it being smaller for a few years but had no knowledge of PCa at that time. I thought it was just part of getting older. Check in with your urologist for clarification.
What is SVI? Thanks
Seminal Vesicle Invasion = cancer
ncbi.nlm.nih.gov/pmc/articl...
Hi addicted: I had read your post yesterday and was going to respond but it disappeared! As I mentioned to another respondent, in retrospect I should have kept age out of it. The key issue is fitness level: most fellow sufferers I see in videos etc. are less than fit (as are most men even of my own age). Your resting heart rate is out of this world: I used to be proud of my 49 bps! Side question: have you had any sports related arrhythmia? I had some (probably the result of competitive swimming in college), just after my PCa diagnosis (how's that for rotten luck: I was starting to feel like Job in the bible), but have since discovered that it was likely being caused by too much fish oil (yes, that's a thing, believe it or not). Whatever it was, that issue at least is now well under control.
HU1001 wrote --- " ... in retrospect I should have kept age out of it ... "
IMO, you were right mentioning your age since severity of diagnosis WITH AGE and OVERALL HEALTH are important factors when determining treatment path. Many decide on ADT in hopes of the return to being a STUD MAN where at my age I had no issue with castration and the knowledge that drugs are not entering my body and Testosterone Replacement was always an option. Besides, the loss of the 10 pound BALLS made my bicycle ride more comfortable and hill climbing easier. 😀👍👍
Never into SPORTS as a youth but have a Heart Murmur from infancy showing no effects when exercising BC (Before Cancer) at 180bpm putting power to the pedals or ChiWalking during Marathons at a 9:00/mile pace (that's a step cadence of 220+/minute.
Lots of helpful info has been given and much to digest so go over all the data and likely in the end it can be a *flip of the coin* between some good choices. JUST MAKE SURE that the choice made has a PLAN B that can easily be applied if things don't work out.
GOOD LUCK 👍👍and keep us informed.
Thanks, and I hope you at least had those impressive balls bronzed.
Diagnosed at about your age. I too am very active. I go to the gym 6-7 days a week and watch my diet carefully. I am on Tri-mix for erections. On a drug for depression caused by meds. I retired shortly after diagnosis as I was going to retire this year so I was financially prepared. My life is pretty damn good. 6 years in June 2022
Thanks for the reply, and glad you are doing so well. Did you go for radiation + hormones, or prostatectomy? And what meds are causing the depression? Continued hormone suppressors? All the best with it.
My dad died from this so I had it removed immediately and good thing I did. I am BRCA2 positive so it spread like wildfire. Depression is from hormone suppression and was in the middle of a suicide attempt when friends came to stop me. Meds stopped that nonsense and I am living a great life
Thanks to all three of you for the useful and encouraging responses. Another, slightly embarrassing question: what is the word on ejaculation prior to treatment (after which I guess there will be no more of that)? Would it potentially damage the organ, or rather help it by encouraging blood flow, or none of the above?
If your prostate comes out ejaculations end, but orgasms do not.
Good to know, thanks.
Yup. But the feeling is the same. Anyway for me it is, or was. laughing.
Hello, I was diagnosed at age 53. Coming up on my five year anniversary next month. I too was very fit spent a lot of time in the gym lifting and I would say I was pretty close to my peak fitness wise when I was diagnosed. I started Lupron injections every six months and have been on them since. I received radiation to the prostate and the pelvic bed area for the Lymph node involvement. I had a brachy therapy treatment to the prostate.I was on the Zytiga for about a year, I did not get much benefit out of that so I am no longer on it.
I have managed to maintain pretty well over the last five years. I continue to go to the gym almost as regular as I used to. I have lost a lot of strength. I try not to worry too much about it and do my best to maintain my stamina and my physique. The physique has added a bit of body fat over the last five years. My stamina seems to be up and down depending upon what treatment I’m going through. If I stay steady working on my stamina I do OK but if I take a week off I definitely see the changes .
When I was first diagnosed my working out and physical conditioning was a very high priority for me. I felt all the hard work I put in was being robbed from me by this disease. Over the course of the last five years I have excepted my body is going to be what it’s going to be. I continue to work out but my biggest concern is staying alive and everything else is secondary.
Thanks for the reply. Once every six months seems like a good deal for the hormone injections: my father was recently diagnosed with stage IV and he had a choice between monthly and every three months. Has the hormonal suppression affected you mentally/emotionally, or only physically? Like you, I feel like I am at my physical prime right now, but would find sacrificing that easier to swallow if I knew that I would remain mentally sharp and motivated. As you say, at the end of the day it's staying alive that matters most: I just want to go into this next stage of my life with my eyes open, and plan accordingly.
In my case it’s very hard to say whether the hormonal suppression is the cause of the depression that I experience or if it’s just the daily reminder of the burden that you’re carrying inside you. I did find that my memory had started to fail me somewhat after the first couple years in which I chose to take an early retirement. My mind seems to be pretty good when I keep myself busy. It’s the downtimes when my mind begins to wander and constantly reminds me of the situation that I’m in.I do know that keeping yourself fit through this is definitely going to help you battle all the side effects that you will experience. Nearly every treatment I have been through have been very minimal problems with side effects.
Hi HU1001, i was 55 in 2013 when my psa rose above 4 biopsy showed 3+3, i opted to have my prostate taken out (open surgery with an extremely experienced surgeon), No more hard erections. Surgery found my cancer had escaped in 2 lobes and perineural invasion. 3 months later psa started becoming detectable and did 37 treatments of radiation on prostate bed.RO recommended lupron for i forget how long, but it would have temporary. (Added edit) I did not do the temp lupron which i regret now.
Another edit: I got a free kegel app which i used often right after surgery and that definitely helped with controling urine retention.
I would say i had zero side effects except a very minor need to find a bathroom for #2 fairly quickly but i can put the need to the side if forced to. 18 months later psa started rising from undetectable. Now on darolutamide and lupron till they fail, they will fail! The lupron was kicking my energy and lots of muscle/joint pain. Less than 30 days ago started doing SARMs Osterine and Carderine and no more pain or tiredness, except still painful back pain especially in am from the lupron shot.
Im in the process of going to Orgavix (Oral ADT).
I believe in a recent post it mentioned chemo, radiation and temporary lupron would be your best chance for killing this beast before it spreads to far.
Radiation + advanced ADT ( Lupron + Erleada) for 25 months here. I was 50 at diagnosis and while not super fit not a couch potato either. I worked out from 1.5-2 hrs a day during treatment and did a good job maintaining my tone and weight. No real side effects other than some fatigue which a lot of coffee fixed. As far as the radiation goes, MRI linac SBRT, no side effects so far. 3 months after stopping the ADT my T is back to low normal.
Just did some more reading about SBRT (uclahealth.org/radonc/prost... and I am seeing only upside here. Is there any reason not to choose this therapy over the other options?
It was the best choice for me personally, one made after much research and meetings with several different doctors. I can’t say it’s the best option overall though because that decision depends upon each man’s personal preference. I had a biopsy this past June, 2 years post treatment, and there was no evidence of active disease remaining. Time will tell ultimately whether I chose wisely.
Wow, that is encouraging, and thanks. What were your prostate stats prior to this treatment? Similar to mine (see previous post)? And am I right that with SBRT the course of radiation is shorter than with other options?
I was 57 when I was successfully treated 12 years ago. But I had low-risk PCa. I've had no lasting side effects, other than reduction in semen at orgasm.
I don't understand your post -- perhaps you can explain (there's nothing in your profile). If you have advanced local PCa, that means that they found cancer in your pelvic lymph nodes too. That could have been diagnosed with a CT or a PSMA PET scan. That usually takes prostatectomy off the table. At any rate, surgery has poorer outcomes than radiation for that diagnosis.
Judging by your comments, you have not yet met with a radiation oncologist.Permanent incontinence occurs in about 20% of men who have surgery but in very few men who have radiation. The urinary issue that sometimes occurs in men who have radiation is actually the opposite - urinary retention (frequency, urgency, hesitancy). It is usually brief. Rectal side effects, if they occur, are also transient.
Erectile dysfunction occurs in about 65% of men who have nerve-sparing surgery, and about 35% of men who have radiation. With surgery, it is rare to have erectile function at the baseline level, even if there is recovery. Other frequent sexual side effects of surgery are climacturia, and size loss.
If you have cancer in your lymph nodes, your doctor can perform a pelvic lymph node dissection, but the odds of detecting all cancerous lymph nodes is low.
Thanks for the detailed response, and sorry if my post was confusing - I am new to this. I thought 'advanced local prostate cancer' was the term for my condition: no detected metastasis, but G7 (4+3) in left lobe, and possible spread to the seminal vesical, G6 in my right. What would be the correct term for my condition? I am encouraged by everything you have said. An oncologist at Navarra, Spain, told me flatly that my prostate would be completely non-functional even if I chose radiation. In my case they are recommending 'radical' radiation treatment, where the aim is to kill all of the cancer cells outright. Is that what you received, or something more selective? Finally, why would anybody opt for surgery? From what you are saying, I see no upside compared to radiation.
That is a more favorable diagnosis than locally advanced! Because of the seminal vesicle invasion (Stage T3b), that is called "high risk." I would highly recommend a PSMA PET scan, if you can get one, to completely rule out distant metastases. Because of the seminal vesicle invasion, it is a good idea to treat all the pelvic lymph nodes. The recent POP-RT trial showed that cure rates are excellent - 95% with no evidence of disease after 5 years:
prostatecancer.news/2021/08...
Unless every core in your biopsy had cancer, you will have a functional prostate after radiation. Radiation kills cancer cells, but leaves most of the healthy cells intact or replaced. The prostate makes semen - most guys find that their semen output is reduced after radiation. If you want to have more children, you should bank your semen.
You can see for yourself the odds of surgery being curative for you:
mskcc.org/nomograms/prostat...
Here are some questions to ask yourself:
prostatecancer.news/2017/12...
I received a kind of radiation therapy called "stereotactic body radiation therapy (SBRT)." It treats the entire prostate (called "radical") but does not destroy it. SBRT is given in only 5 treatments. They usually place 3 gold "fiducials" in the prostate (they are the size of rice grains) to guide the X-ray beams during the therapy. SBRT is being used experimentally for high risk patients like yourself:
ncbi.nlm.nih.gov/pmc/articl...
More commonly, the treatment is given in about 20 sessions (it used to be 44). Because of the seminal vesicle invasion, you will require about 2 years of hormone therapy along with it.
Can't tell you how grateful I am for this world class information. Will act on all of it going forward.
I just checked out that amazing tool for calculating my odds of (a) 15 year survival, and (b) complete not recurrence after 5 and 10 years for RP (the Sloan Kettering link above). Is there a similar tool for calculating my odds of (a) and (b) for RT + ADT? If not, what are they, roughly, to the best of your knowledge? My stats again: T3b G7 (4+3) 75% cancerous, 2.5 cm tumor with capsule breach and possible SVI, no detected Mets. Thanks in advance.
No similar tool for RT. The longest-running clinical trial for RT is for brachy-boost therapy. The 10, 15, 20, and 25-year disease-free survival rates were 75%, 73%, 73% and 73%, respectively.
auajournals.org/article/S00...
But unlike RP, where the success rates haven't changed, RT has gotten a lot better since that trial was started in 1984.
Thanks. I notice the abstract does not specify the severity and aggressiveness of the PCa involved. Or was that somehow implicit in the abstract? And does 'hormone naive' mean only that no ADT was applied before the treatment, or does it rule out ADT post-RT as well?
That trial began before current risk categories.
"Hormone-naive" only means they didn't start ADT until the trial began.
Got it, thanks.
The trial also began before PSA screening, so probably most men were advanced and symptomatic.
Interesting. What about rectal exams? Were they at least standard back then?
Yes
p.s. According to this site 'advanced local' is indeed what I have. The key point is that the cancer has breached the capsule of the prostate itself (and possibly spread to the vesicle: which does not count as metastasis, apparently): macmillan.org.uk/cancer-inf....
That is not the definition used by NCCN - which is what dictates the terminology in the US and almost every other country. Stage T3B puts you in the NCCN risk group called "very high risk" (see Guide 3 on p. 38). The localized risk groups are low risk, intermediate risk, and high risk (with 2 subgroups in each of those):
nccn.org/patients/guideline...
"Locally advanced" is used for patients who have been diagnosed with cancer in their pelvic lymph nodes (Stage N1). It avoids confusion if you just say you are stage 3b.
Again, thanks. I am in Portugal, and all I got were the two traditional options + the Macmillan link. Navarra (Iberia's Johns Hopkins, so I've been told) went only as far as to offer brachy radiation as an option, and gave me a simple 'no' when I asked about anything more cutting edge or experimental that I might try. You have given me a whole new level of hope. Thank you
I’m 52, in otherwise great health and share your concerns. I was diagnosed in May and I’ve been on ADT since then. I’m now also on darolutamide and just finished chemo cycle 2/6. I’ll be getting radiation in the Fall. Surgery was not an option for me because of how it already had escaped the prostate. However, because of my Gleason score (9), I was looking at ADT plus radiation anyway even if I could have surgery. So, I felt better about doing just the ADT and radiation.
I get Eligard (leuprolide) injection every 3 months. The biggest thing for me is the lack of libido. I can still get erections but have zero interest in doing anything with it. Yes, it’s a bummer but it’s not as horrible as I anticipated. Staying active is key. I walk 5-7 miles a day and lift weights several times a week. Other than the libido issues and some weight gain, I’ve not had many of the other issues people usually have.
I strongly suggest getting second opinions from a different urologist as well as a radiation oncologist. Also, get your biopsy slides re-read. My second opinions were so, so helpful as I worked on developing a plan that I was comfortable with.
Another thing that helped me was getting on a low dose (50 mg) of Zoloft daily. I was completely overwhelmed at first and it has made a huge difference with how I feel. (If you go on ADT, it can also help with the hot flashes.)
I know this is a super difficult decision. I found that my doctors were really poor with dealing with a younger guy who wanted to know about the quality of life issues associated with ADT. As I told one urologist “I’d be thinking about this very differently if I were 70…”.
Please DM me if you’d like to chat individually.
I would request a PSMA PET/CT. It will show if there are distant metastases or if the lymph nodes in the pelvis are affected.
Distant metastases (M1 disease) are bone mets, visceral mets and lymph nodes mets above the bifurcation of the iliac arteries.
Lymph nodes METs along the internal iliac artery are considered N1 disease and if treated correctly the cancer could be cured using radiation to the prostate, lymph nodes and ADT for about 2 years.
Bone scan and CT scan are much less sensitive to detect these lesions than the PSMA PET/CTs.
The PET/CT will also help to plan radiotherapy treatment.
originalText
Had RP at 49. See bio. Incontinence and ED. Was locally advanced but not in SV or LNs. I think in uk locally advanced is used if any extrusion. I would have had some form of RT if I did it again. I had in my mind Just Cut It Out. But RT has similar success for recurrence and better outcomes re incontinence and ED. Given SV involvement, RT may be a better option too? Good luck.
FYII was dx 10+ years ago with Gleason 9 and Mets in a few bones (2 vertebrae, big one in left acetabulum and maybe 1-2 ribs). Had “experimental” removal of prostate which likely did not result in a benefit. ADT has eliminated my sex drive and shrunk my penis. But- despite a lack of interest in sex I am still able to get a reasonably hard erection. On very rare occasions, when I have a BIG belly laugh or a BIG cough, I might leak less than a teaspoon of urine, but I am usually able to “catch” it in time and hold back the leak. Also- on rare occasions, when my bladder is VERY full and so wake up and rise into a seated position to get out of bed, the “need” to urinate can be uncomfortable and I have to get to the bathroom kinda quickly to relieve the discomfort. But- more than 99%of my life, these issues do NOT arise and when they do they are not a big deal. I have never had to change my underwear and can’t remember the last time I had that uncomfortable feeling when awakening and sitting up.
Of course- your surgeon is of great importance. If you decide on surgery, Find someone with a LOT of experience AND an excellent reputation. Good luck with whatever choice you make. I have no regrets about getting my “experimental” surgery as the side effects are insignificant and I chose to be as aggressive e as possible with my treatment.
Thanks for posting your update. It gives me more hope as well with my Gleason 9 and lymph / bone met. They are going to wait and see what the ADT/chemo does before deciding on radiation other than to the prostate.
Based on your description, according to the American Cancer Society site, your staging could be T3b, possibly in SV and maybe some nearby tissue and PSA of 20+. That would increase odds of needing salvage radiation after removal at some point down the road which increases risk of compounding side effects from both treatments. Push for the PSMA scan for sure to get a more precise diagnosis. EBRT tends to zap a larger margin than surgery alone which can delay recurrence. The SpaceOar can help protect the bowels. Confirm how long the ADT would be short term (3-6 mos) often doesn't see the full force of SE with a faster rebounding time. Long term (18-36) often brings the full force, but it will help qute a bit if you keep up your routines. Keep gathering info until you have enough to be comfortable with your decision.
I was 56 at dx. I was active, got more active and have stayed active. I was PSA 156 Gleason 7 (3+4) suspected LN involvement from CT. I had 44 treatments radiation. 80gy. I rode my bike to 41 of 44 treatments and most hormone injections and additonal miles afterward. I am currently off ADT after taking it for 2 years. I monitor my PSA every 3 months. No side effects from either T returned to normal after 3 months. Physical changes have reversed. I have no way of knowing what the future holds, time will tell. I live one day at a time. Remember we are all different so my experience won't likely be yours. Good luck.
I suggest you research HIFU -- High Intensity Focused Ultrasound. That was the treatment option I chose. I was Gleason 8; one side of prostate only; 5 of 12 cores positive. My PSA was lower than yours though; only 2.7. I had to pay out of pocket in 2016; there was no insurance or medicare coverage. That may have changed. I had full-gland as opposed to focal ablation. I was a good candidate having had TURP surgery prior to my PC diagnosis; TURP is favorable and might be required for HIFU. No incontinence. No erectile dysfunction. Doing fine 6 years later. If you PM me I can provide the name of the experienced California HIFU surgeon that treated me. You have time. Carefully research your options. Talk to the specialists. You'll get through this.
Thanks for the fresh angle. So I take it you did not have to do hormone therapy along with the ultrasound? And how did it effect semen output?
I already had retrograde ejaculation from the TURP surgery 10 years prior. No more semen at all after HIFU. At 66 at the time of surgery not a sacrifice for me. Oh, I did have one 6 month Eligard (ADT) shot prior to choosing HIFU, when I was still on the path to getting radiation. It shrank the prostate a bit so it was appropriate for HIFU too. No more ADT injections after that.
No one can tell you if your testosterone will return or not, fully or partially. However, your fitness and high baseline will assist greatly.
You may want to put disease eradication ahead of your testosterone unless you prefer rolling the dice with the former. If this is successful you have a great chance at both a disease and testosterone suppression-free life long term.
If you opt out of aggressive treatment and it doesn’t work you are likely to eventually be on ADT for the rest of your (presumably) long life, which you definitely don’t want if you can help it.
I was not as young as you at diagnosis chronologically (63) but biologically I was probably the same or younger than you as an athlete myself, so I sort of ignored your ‘someone in my age group’ imperative.
I trust you understand, especially since ‘extremely fit’ men with this disease are uncommon at any age.
By the way, RP is not for you unless you REALLY want to roll the dice with your erectile function, that you can trust me on.
Great luck to you!
Thanks for the advice. Re. the age issue: absolutely, and in retrospect I should have left age out of it. In most of the videos I see the patient is, not surprisingly, in less than optimal shape overall, and that's the factor I wanted to eliminate while making my decision. I think this is an issue that the medical establishment could focus on more when proposing therapeutic options.
Sorry to hear your bad news. There is no magic bullet. Otherwise, we all would have taken it. It does take time to find a counselor, and surround yourself with good friends. Peer support other men in the same boat. Take your expectations and cut them in half. Then do it again. You in a life-changing moment take some time to look at all the options. Check out Cryotherapy there are a lot of new treatments, insurance wouldn't pay for cryotherapy a few years ago. They are now. The options are for you to decide, your right life will change. It depends on how you look I am 66 years old and went through 4 years of stuff, It is better now. Because whatever happens, I am going to enjoy the day, I cannot stop, a flood, hurricane, or how my body has not lived up to my expectations. We are human, and Spirit beings the human part is full of flaws. Enjoy the day and then the next one. I can only live one at a time. Breathe and let yourself feel your pain. This is a moment you will never forget, make it memorable for you. Take care, my friend. I am a moderator of a Peer support group which sounds like you are ready for. Reach out if you need to talk.
Thanks for the sage advice. I have endured other knocks and had long ago realized that life can be good under almost any circumstance (and I'm not even sure about the 'almost', but don't want to presume, as there is some terrible suffering out there...). Will just have to look at this new situation in the same light, and turn bad luck into good fortune.
I encourage you to take advantage of Google to find probabilities of side effect s for the different treatments. I would say surgery is less risky re side effects for younger men like you...... just so you can overcome incontinence after surgery, and men of younger age apparently do the best in that department. I would say don't hang your hat on any one man's experiences, or even this small group's replies, though all well-meaning of course. One of the members here, TA, has what I think is called a blog site at which you can find his numerous research-based articles on almost any question that might come to your mind.
Being older and for other reasons, I am definitely heavily leaning toward radiation......but very aware of the risks of that combined with ADT....and there are radiation side effects that may show up only a number of years after the treatment....I don't belive late-occurring SEs are a real issue with surgery.
IMHO, study, study, study...and in the end, you'll probably still feel it is a crapshoot !! Good news...with your 4+3, you have a VERY high probabilty of at least 15 years without PCa mortality !! Check our Memorial Sloan's pre-surgery probabiity nomogram for PCa...based on 1000s of memorial sloan patients !! For most men, studies seem to show radiation +/- ADT has approx the same results as surgery.. Finally, at least early after radiation, the stats seem to show fewer incontinence problems with RT.......as I said, RT SEs sometimes become a problem only many years after treatment. Not exactly reassuring?
Thanks for the advice, and the encouraging stats. That is good news indeed.
Conventional RP surgery is the most invasive and has the most severe potential side effects, namely incontinence and erectile dysfunction. Yeah there may be treatments for those but strictly speaking of side effects, RP surgery has the most risks and is the least appropriate for young men in my opinion.
thanks for pitching in.
Most younger men do not have long-term incontinence, but some do. I'm not sure of ED comparisons long-term for radiation and RP. Both have other real SEs that may ocur less frequently but nevertheless are very disheartening. I'm a salesman for neither treatment!! As I said, it would be advisable, IMHO of course , for anyone to search for studies that compare the SEs and give probabilities for both short and long-term problems! A REALLY serious SE is stricture....for some men, life-changing.
I am not a direct peer, HU1001, but I can provide a data point and some recommendations. I was diagnosed at 49 (now 54) with 4+5 (9) with light localized lymph node involvement but with multiple distant bone metastases, including spine, skull, hip, and femur. My prognosis was poor - best “modern” survival statistics (these stats always lag) for my age and high risk status is about 30% 5-year survival. Unfortunately, this has tracked with my peer group here on HU. They are sorely missed.
I have had chemo, targeted bone radiation treatment, and immunotherapy (Provenge); my prostate is intact but not functional. I am on androgen-focused therapy forever. While I think my life is miraculous, you can perhaps understand that I don’t typically participate in traditional quality-of-life (QoL) discussions.
I like being respectful for others’ hopes and approaches in this battle (including my own), but as you already understand you are in the “young” club for this, I will be blunt: Survive first, everything else is pride. My recommendation (exhortation?) is to be very aggressive with: 1. Ruling out distant metastases and 2. Understanding your genetic risks.
Only once these are understood (as well as they can be) to inform survival treatment should you then spend any thought on traditional QoL. Your situation sounds promising on many fronts. But until you have your full data set in front of you, consider minimizing expectations- good or bad.
Good luck. - Joe M.
My husband had the Space Oar minimal procedure done before his radiation to protect his rectum. No problems.
Absolutely, thanks for sharing, and best of luck going forward.
I usually don’t post. I Researched and found this wonderful site. So many smart people. Even my husbands Urologist is impressed with my questions I share with her from this place. She is a Uro/oncologist. She did the space oar, with versed, no general anesthesia like the radiation Dr would only do. My husband did fine even with Parkinsons. Ehhh, now Lupron is kinda hard on him because he can’t exercise like you can. Just had his third 6 month shot. Hopefully only one more to go. So far beating it. Best!
So many replies. Age is so relevant when dealing with this disease so do keep it in mind. I was diagnosed at 56 with a much high Gleason score but found that finding younger men facing the same disease very helpful. My one bit of advice would be get yourself to the very best GU Medonc you can find. If you provide your location I would be happy to help. Second would be send your biopsy tissue to John Hopkins/Epstin for a second opinion.
Thank you - I am in Portugal, but my insurance here gives me access to JH at a big discount. I have already consulted with CUN (University of Navarra - supposedly the JH of Iberia), but they had nothing to offer except brachy as an additional option. It might be difficult for me to access my original biopsy samples, given the sluggishness of the bureaucracy here. Also, they seem to be very old school in doctor-patient relations: patients are to be seen but not heard. Apart from that they've been great, as far as I can tell, including all of the various technicians. I really wouldn't want to go through the biopsy experience again, and am glad I went into not really knowing what I was in for. Had 6 samples on the left (75% positive - that's where the 2.5 cm tumor is), 8 on the right (10% positive). I could sent them the video from my original MRI. Will have to think about it some more.
After a second review send an email to Jonathan Epstein at hopkinsmedicine.org and ask him to request the tissue sample. I think the cost for the second opinion is something like $200us... I do have a good friend in Melbourne that was diagnosed at 43 and had to make a similar choice maybe it would be good for you to chat with him. Find an interesting interview on Urotoday with Dr Morgan and Cameron Upton.Best of luck on your cancer journey.
How old are you now, if I may ask?
61 years...After reviewing more of your comments I think you will find Tall Allen's the most useful. Issues around age are relevant to all younger guys. Get plenty of sleep and continue to be active throughout your treatments. Finding mental support along with a great GU medical oncologist will serve you well.
Cancer or testosterone, not much of a choice IMHO. Everyone's experience is different but you should reduce the chance of the cancer further metastasizing if you get the treatments. I had prostate removal + Lupron + Erleada and the only unpleasant symptom I have experienced is some additional fatigue for which my oncologist prescribed Provigil and that works pretty well.
Get on the program ASAP.
Hi, and sorry to see you here. Your Dx / age is almost identical to mine in 2015; and have been a competitive athlete much of my life. Baseline T was 800+ at Dx, and 0 during ADT. See my profile. Happy to share experiences so far if helpful in private messages.
Just read your profile: quite a trip you've been on, and sorry to hear the insurers are being difficult. Glad to see that your T is now exceeding earlier expectations, and that the PSA doubling situation is improving. Question: I notice from your profile picture that you are a cyclist. I have done a fair amount of cycling myself, and my brother was telling me that riding a bike, like ejaculating, can cause PSA to spike. Have there ever been connections made between cycling and PC? (I believe there have between cycling and testicle cancer.) Sorry if I'm now going beyond what you're comfortable with on the public thread, and feel free to reply in private.
No worries about giving details here. These strings get long and wordy, so just trying to keep this one manageable for others 🙂.
No medical professional or resource I’ve ever consulted correlates cycling to PSA levels, except for incidental BPH and infections (not PCa related). Not even my Uro surgeon who is a dedicated roadie. Could certainly be some spike if you still have a prostate but doubt it would be significant at your current PSA ; and we on this forum test PSA so often I believe any affect is smoothed over longer term analytics anyway. If you’re in doubt, maybe get a few PSA labs long after or before you take your rides? Was told to test at approximately same time of day and at same lab for consistency.
I’ve trained and competed in road, MTB, DH, CX/Gravel, and winter fat biking for over 30 years; was VERY skeptical all that didn’t contribute to the PCa when diagnosed. Still ride almost daily in season since RRP, however; and doesn’t seem to affect PSA measurements or treatments since (good or bad). Can’t imagine the hit to overall fitness, energy, concentration, and weight gain I would take during ADT if I wasn’t biking; my recommendation is to keep peddling! I was able to comfortably ride centuries at 9 weeks after RRP, and regularly during IMRT (43 fractions over 8.5 wks).
FWIW, I concur entirely with Paul/Mateo Beach’s observations in this thread. Same logic I followed and no regrets. Since I’ve now had many treatments you’re looking at, except early Chemo, but not necessarily in traditional succession or order for SOC, happy to share specific SE’s I had/have and you might expect with each given your age, health and fitness. I believe these things dramatically affect QOL before, during and after treating, and you can absolutely use them to your advantage to mitigate severity.
Will add my view HUman. Diagnosis at 57 and superfit, competing at masters national and worlds level road cycling and XC skiing, lifelong runner and mediocre triathlete. Sex very important to me but staying alive more so.I chose RARP surgery over radiation as initial treatment. Approximately same cure rates and similar adverse effects risks. But two compelling advantages for the surgery (besides just knowing that it was gone).
1) you get more information from the pathology, like extra capsular extension, positive or negative margins, seminal vesicles invasion and nearby lymph nodes analyzed for spread. Helps to plan appropriately.
2) either can fail to cure and BCR can occur later at about the same ballpark rates. (20% ish). If you had RP as primary you can then do pelvic and prostate bed salvage radiation , SRT. However if you had radiation first, very few would undertake a prostatectomy of a previously irradiated prostate.
If you choose not do do surgery first, I would encourage you to go to an excellent radiation oncologist for external beam IMRT (X-ray) or brachytherapy. Not Proton Beam ( good for some cancers but not so for prostate. The Bragg peak energy distribution advantage of protons does not work well in the deep and complex structures of the prostate. I have seen too many stories of treatment failures here with advanced prostate cancer. Though the proton beam centers certainly try hard to sell it.
And I would not go for second tier treatments like HIFU, cryotherapy, etc.
The newest linac (IMRT) systems for precise targeting and delivery are so much better now than precious radiation systems. I am much more confident that they maximize effective delivery and minimize collateral damage to organs at risk nearby. Still I would favor surgery again first, as I did 17 years ago. Paul
First, congratulations - 17 more years sounds good to me, and may you enjoy at least another 20. Second, thanks for all of that useful information.
One more thing: if you decide on surgery, don’t have it done by your local urologist who may have done your biopsy, though he or she will likely want to. Not unless they meet the following description, that they work at a hospital center that owns their own Da Vinci robotic surgery system and that is his main focus, doing multiple cases on multiple days each week. And has accumulated at least several hundred cases of prostatectomy. It is a highly technical skill to perfect. And ask to be their first case of the day. Fresh and sharp!
Got it again, and thanks again.
Thanks also for the username inspiration.
I'm a little older, but I'm fit, workout, and sexually active. My score was G7 on the left apex. Ultimately I chose focal HDR Brachytherapy. My second choice would have been SBRT, or Proton RT. Radiation was my choice, because I want to continue an active lifestyle without the debilitating side effects of surgery. Complications and side effects are far less likely from radiation therapy. RP surgery will almost certainly to leave you impotent, and with some level of incontinence, from what I found from a deep dive into the data and conferring with knowledgeable MD's. Whatever you decide, if you want to minimize your chances of altering your lifestyle, you need to go to the very best specialist you can find in the field of therapy you choose. Someone at a major medical facility that has done hundreds if not thousands of the procedure, and is recognized as one of the top specialists in that field.
Thanks for all of that. What made you prefer brachy to SBRT? Did you also do ADT? And where do I go online to find top specialists in the field?
I ultimately decided on the focal HDR Brachytherapy, because I only had one lesion that was confirmed by biopsy, multi-parametric MRI, and PSMA Pet Scan, and the probability of less complications from the procedure compared to other options.
Wow that is very helpful - thanks.
One consideration is that radiation first and salvage prosectomy is more difficult than prosectomy followed by salvage radiation. I did the same tests that you mentioned and was thought that the cancer was confined to the prostate. Did a PSMA test which was a clinical trial at the time and they found that it had gone outside the prostate. Prognosis changed to doing hormone therapy which was more SOC at the time. As far as incontienece they say make sure and do your Kegels. They tell you that after the procedure. I think it do well for all if you start doing them prior to procedure. It will be one of those exercises that you will become part of your daily routine. You sound like you have a active life style and keep fit. That is a plus with hormone therapy because I feel that exercise helps negate some of the side effect. Also being fit I think if you are thinking of doing a a prosecotomy you will recover faster . I did lose muscle mass and my bone density has changed with the hormones. Keep positive and dont look back.
Diagnosed at 70, 2 yrs ago. G 9 stage 4 (pelvic node) PSA 48. At that time no symptoms, other than getting up at night 1 or 2 times. Got 7 sessions of SBRT and ADT, which after 6 months I absolutely refused. Side effects ? You name it I had it. It almost killed me. I went from 128 lbs down to 114. My chest and arm muscles disappeared. I am serious. Before I was fairly fit, slim, lots of walking and playing tennis. Between that and my BP med, my resting heart rate was as low as 39. Felt totally normal. Erection, sex, worked great. I put together my own therapy plan, which included THC, WFPB and supplements. Since stopping ADT my PSA has been in the 0.04 to 0.01 range. The post ADT and radiation picture is as follows : some interest in sex has returned with occasional erections, however my ejaculation is retrograde, and the orgasm is split half and half. First half almost as before, the second can be quite unpleasant, and almost makes me not want it. I am very gradually recovering my energy level, which is not helped by frequent getting up at night. As one of side effects, my eyesight has deteriorated substantially, so much so that I needed large increases in my prescription, twice within a year. More and more there are scientific opinions that say ADT is too dangerous. Someone in another group asked : would your doctor take a med that has 39 pages of side effects ?
Thanks for sharing: more useful angles here. And good luck to you too.
I'm a little late to this conversation, and a few years older than you, but was in great physical condition when diagnosed. You need to be aware that there may also be long term side effects to radiation treatments in addition to the ADT considerable side effects. I had 13 months of ADT and 25 SBRT sessions immediately followed by LDR brachytherapy about 15 months ago. Despite exercising regularly (jogging, bicycling, walking), and weight training, I gained 20 pounds and lost a lot of strength because of the ADT. No libido, reduced metabolism, surprising weakness, low energy, memory loss, and hot flashes which luckily lessened with time, though some of this was probably partly radiation driven. A few days after the brachytherapy procedure I felt like I had been run over by a truck. The good news is my testosterone bounced back to 570 4 months after stopping ADT (it's been 6 months now). The bad news is some of the ADT side effects haven't diminished yet, though I am feeling stronger and have more energy. But because of the radiation I now am experiencing considerable discomfort during bladder and bowel movements, which seems to be getting worse, along with increased urgency to urinate or defecate. And pre-ejaculate fluid is non-existent, probably because my prostate and surroundings was damaged by the radiation.
I can't comment on RP since I didn't go that direction, but you should be aware that the alternative isn't all sunshine and rainbows. You have a very difficult decision to make, and I wish you the best on making it. There are possible uncomfortable repercussions to whatever you decide, unfortunately, and probably no "right" decision, since no one knows exactly how their situation will play out in advance. The best approach is to not get prostate cancer in the first place, but that isn't usually a choice.
Hi and welcome. I was diagnosed in 2019 aged 59 as cT3bNxMx with a PSA of 87.I had seminal vesicle invasion. I was considered as being at very high risk of recurrence after primary treatment. My urologist offered to perform a prostatectomy but said that I would still have cancer after the op and would still need radiation and ADT.
I declined his kind offer and went to see a radiation oncologist.
I had 39 sessions of external beam radiation including the pelvic lymph nodes.
Also I had 3 years of ADT, which was standard of care at the time in Ireland.
Last Friday I had my first 6 monthly telephone consultation with my RO after completing my 3 years of ADT (in May).
He stated his pleasant surprise that my PSA remains undetectable. I’m cock a hoop at the possibility of a durable remission! following an unfavourable initial diagnosis.
3 years of ADT was no cake walk, I experienced most of the potential side effects to some extent. I wasn’t fit to begin with and I have heart disease among a host of other ailments. I do walk for about 20 mins each day, doesn’t sound much but that’s what I am able to do and grateful for it.
I learned early on that there’s no free ride with cancer, my life would change whether I liked it or not and I could choose to be grateful for all that I have and can do after a period of real mourning and grief for the future life that I thought that I would have that cancer and its treatment would alter considerably.
Cancer has a reality that is uncaring of my expectations, hopes, dreams for the future.
It’ll probably kill me if I pussyfoot around it.
I held my own pity party, no invites were sent out; I cried and grieved my losses and picked myself up and ploughed my way through my treatment to a new life.
I’m actually happier now than I have ever been. Go figure!
It sure beats the alternative.
My cousin who was diagnosed around the same time as me has unfortunately experienced a recurrence.
I live for today, I’m not promised anything more.
I wish you the very best for your treatment and future life.
Hugh
Hey human! I’m 52; was diagnosed at 46. You can read my profile for details. We need more details to provide more targets advice (Mets, Gleason; ..) unfortunately Testosterone needs to go away to keep the dragon in the cave. The side effects are significant but the main one is not dying. Send me a PM if you want to chat
You are tough warrior, just read your bio. Keep on fighting - you are amazing. And good luck!
Hello my husband had his prostate removed almost a year ago and needed radiation and is on hormone therapy now. He was only 45 years old when he was initially diagnosed last year and is super healthy. No symptoms or issues at all. Just a shocking blood test result from his check up and that road opened up for us. Right now the hormone therapy is making him so depressed and anxious and he has no one to talk about it that really understands. Anyone here that has been through this or is going through it and I can set you up.
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