First time posting here. I had a radical prostatectomy on 1/28/22. It was partial nerve sparing. My Gleason score was 7 (4+3). I was very fit going into surgery and recovery has mostly been going well. The only issue I have is that I still have ED. My erections are at about 50% with no aids. I've been doing injections for the past couple of months. I don't love them, but they work and I get a full erection. I've been told that there is still potential for the nerves to heal and regain function. A little background, I was on testosterone replacement therapy before I started this journey and, of course, stopped as soon as I got my diagnosis in late 2021. My testosterone is back up to 340 and hasn't budged for the past few months. I'm ok with that as it is low, but still within the normal range.
My recent PSA test was .27. It has been slowly climbing for the past 9 months. The doctor has recommended me for ADT and radiation, probably a 6 month course. The reading I've done has shown that men who have a test level of less than 400 going into ADT have a tougher time recovering their natural testosterone production post ADT.
There are a host of physical complications from low testosterone levels that I'm concerned about. Everything from bone loss, impotence, and depression to heart disease and diabetes (both of which run in my family).
I'm questioning if whether the loss of my quality of life and the risk of future complications from other conditions that might result from treatment are worth it. Is there another approach that I'm not aware of that doesn't involve ADT? Also, I had a consultation with Dr. Mulhall at Sloan Kettering and he said that the treatment would basically make me impotent forever and that I would have to explore other more invasive options post radiation and ADT.
I'm being treated at Sloan Kettering, and generally I've received good care. But I'm frustrated with the attitude of kill the cancer at all costs and the rest of your life be damned.
If anyone has any insights I'd appreciate any input. Any alternative strategies, treatments, any questions I should ask the radiation oncologist. I'm all ears. Thanks in advance.
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NYCHiker
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Unfortunately, the damage to your erectile function might have recovered without salvage radiation, but will probably get worse with it. The ADT will make it hard to do penile rehab. Mulhall is the expert on this. I guess your only recourse is trimix or penile implants.
hi NYCHiker. I don’t have any medical knowledge but I offer the following.
If you do no treatment, how long is it before the cancer will destroy the quality of life anyway? If the answer is 5 years and your over 80, it’s a probably a risk worth taking. Once over 80, end of life from something is sadly pretty close. If your 55, then hopefully end of life is 30 years away. Preserving life in a form as good as you can get is worth giving up on some things.
erections are really important to sexually actively gay men. (When diagnosed, I wept and wept) The grief we feel from a loss of sexual function is awful. However, life is about more than that. And, as you deal with the grief, you get stronger as you explore life (including sex) with a new approach.
You are so fortunate to have access to Mulhall and his team. My urologist calls him a genius.
Your post really resonated for me. The topic of ADT has been bouncing around in my head for most of this year. So, apologies in advance for a lengthy reply.
I was diagnosed Nov 1, a year ago, at age 53. We may have passed each other in the hallways of MSK-- a couple of weeks after your surgery I had my first Lupron shot there (or as I now refer to it f***ing Lupron). I too was a Gleason 4+3, Stage 3a, Perineural invasion, 6/12 cores positive, intermediate unfavorable. I talked to surgeons and RO's. I couldn't stomach the sound of surgery or the recovery so I opted for a tri-modal of HDR bracky (in May), 6 fractions SBRT (in June) all bookended by 6 months of ADT (2 x 3-month shots) along with daily Cialis low dose and other prostate shrinking meds. I got through the radiation fine, but the ADT still haunts me. I don't mean to add to your stress or dissuade you from any particular course of action, but I definitely feel like I got more that I bargained for in the 6 months of treatment despite a ton of reading, talking and asking question about it.
I too was on testosterone replacement previous to this diagnosis. My "normal" was somewhere around 200 -- felt fatigued and low libido. With Androgel, low 400's and felt pretty darn good. First f'ing Lupron shot was in February along with 30 days of Casodex, I felt alright for a couple of months. Tried to push through some exercise to fight the fatigue. Libido was ok for a bit. I got my second shot right around when the radiation started (mid-May) and what followed was a pretty tough period of life. I don't know how much to attribute to the hormone deficit vs the short-term side effects of the radiation, but found myself in bed most of the day. Ended up taking 2 mo. off of work not just from the fatigue but the mental and emotional impacts of the disease and the ADT. I was in a dark, lonely place. Brain fog, bad. Night sweats & horrible sleep. Gained 20 pounds. Depression like I've never known. Anxiety over the top. I'm not a stranger to some seasonal depression and mild anxiety in regular times, but this was next-level shit. I would suggest to anyone even slightly prone to mental health issues to have a plan in place well in advance -- for me, therapy, meditation, Xanax, two antidepressants, 2 months of FMLA and wonderfully supportive friends, I got through it (thank God for all of them!). MSK has a psychiatric group, check them out -- asap as it takes a while to get an appointment. Christian Nelson I saw a couple of times (he sees a lot of men with prostate cancer, Mullhall even mentions him in his book). They also have nurse practitioners who can help with meds.
I had my T checked at the end of the "6 months", it was 9. ☹ In fairness, also an undetectable PSA. The question no one could answer for me pre-treatment is now abundantly clear (for me, personally anyway). The difference between low-T and castration-level is noticeable, significant and yes, lingering.
I am now 6 months past my 2nd shot and I am feeling pretty good. Brain is functioning well again. Mood has stabilized. I went through a period of anger after all of this which is starting to pass. Energy is back. Libido - meh. Last T check I had it was still at 25, I'll check again in a few weeks and can let you know. My bet is still way below 250. I have had a couple of spontaneous nighttime erections (woohoo!!) But no real desire to do anything with them. I try to masturbate at least once a week to keep it all going. It's like exercise, but there are certainly worse forms of exercise. I am fortunate that I have not had any significant ED but understand it's likely to challenge me in the future as late-term side effects. This was a conscious choice for me to choose initial radiation over prostatectomy, but the cruel irony is that I have the physical functioning but it is of no interest and brings little to no pleasure. Conversely the one saving grace of low libido is that you don't really miss it (the sex) -- unlike the incredibly anxious period when I was contemplating the short- and long-term effects of it, likely similar to what you're pondering now.
All of that said, I don't think I would make a different choice on my initial treatment. I thought I was prepared for it -- I was under prepared – that’s water under the bridge. The fear I have a tough time even acknowledging is the fear around having a conversation with my doc similar to the one you just had. For me, surgery is now out, I've had all the radiation they will give me- it would likely be back to ADT and hope for the best for a while. I honestly can't say I would sign up for that - starting another, indefinite course of ADT. I'm trying not to think about that choice until if and when I have to.
I 100% share the frustration with the "kill the cancer at all costs" attitude. While Cancer COE's like MSK have a wonderful portfolio of services, they are disjointed from my experience. I got referrals but way past when I needed them given the appointment lead times. The RO either didn't know or didn't appreciate how severe the impact of ADT might be. I don't think they listen when we describe the impact our side effects. They gave me shit about asking to sign an FMLA form because "people can work and have radiation at the same time". Incidentally, hit up your PCP or mental health professional for help if you need to take leave, I wish I knew this. I guess I do want the RO focused on zapping the cancer and not filling out paperwork or what's going on between my ears, but I can't help but feel this shit didn't exacerbate my issues and may have impacted the overall outcome. Herein lies the source of some of my anger. Be your own advocate and seek to have help in place before you ever need it.
I don't envy the choice you have in front of you. If you go forward with the ADT, it may not be pleasant, but you'll get through it. Have a plan, ask for help, talk to others that have been through it. This shit is tough and I don't think the medical world gets how tough it can be, especially for gay men. Thank God for resources like Malecares, Tall_Allen and Darryl! I hope this perspective was helpful. Feel free to reach out to talk or compare notes as you move forward.
Wow, so much to unpack here. First of all thank you to everyone who responded. It's really appreciated. To clarify, I'm 59 and as mentioned, feeling pretty good except for the ED. I am already using trimix for my penile injections. Again, don't love them, but they work. Mulhall warned me that I will have zero libido during ADT and that I had to do the injections nonetheless. In his words, "I don't care if you sit there reading the New York Times with an erection, but you have to do the injections!". As my surgical oncologist said, Mulhall's philosophy is use it or lose it.
TechGuy67, I'll be seeing Dr. McBride for my radiation consultation next week. I wonder if that's who you worked with. I really thank you for your frank description of what you went through. I am prone to anxiety, so I'm in the same boat as you. I'll make sure to have my xanax prescription ready. I'm not looking forward to it.
But again, what I'm concerned about is not only the long term future of my erections, but my long term general health. Since testosterone is part of a man's general health, there are other considerations that low testosterone will affect like heart disease, diabetes, osteoporosis, etc. I know that a 6 month course will probably not affect those things. But for someone with my low testosterone numbers going into treatment I'm worried about the long term consequences of my testosterone levels never coming back. Has there been any research to using something like HCG to jump start testosterone production after treatment? I haven't found anything. I'm not talking about TRT or elevated levels of test, just something that will help the body produce a normal amount of testosterone. Seems like it's a bit of luck of the draw. If you're lucky enough to go into treatment and recover normal levels afterwards, good for you. If you're not lucky to have normal levels, too bad, so sad for you.
Also, does anyone have any information on the new drug Relugolix for ADT instead of Lupron? My neighbor sent me an article about it and apparently the risk of cardiac events is reduced by half and the return to normal levels of testosterone is faster.
And TechGuy67, I've found treatment at MSK to be a bit disjointed as well. Nobody throughout my treatment ever mentioned the Integrative Medicine department to me. A friend recommended I check to see if they have one and they do. I've been working with someone there who has already gotten me started on tweaking my diet, exercise and supplements. She's also got me set up with their acupuncture department. I feel like she's the first person who's given me some agency during this whole process. When I mentioned that I was consulting this department to my surgical oncologist at my last appointment, he kind of brushed it off. I get that the main focus is to get rid of the cancer, but I'd appreciate more of an approach as seeing me as a whole person. Not just some cancer cells that need to be destroyed. I will say that Mulhall did recommend Christian Nelson to me as well. I'm seeing him in early December.
Anyways, thank you again for the input. Really appreciate everyone's point of view. This helps this all feel a little less overwhelming.
keep you chin up it gets better! I was 53 when I was diagnosed and went thru brachytherapy and 5 days external radiation and 18 months of adt. Saw Dr Zelesfki and it was rough initially. My thought was no matter how I felt I wasn’t going to cut the lupron short so if it came back I would second guess myself. It’s important to JO at least 2 or 3 times a week no matter how not in the mood you will be. Just finished my last visit and numbers are good test level bounced back I think
In the 3-400 and my wet dreams are back though they are dry. October was my last shot. I still ejaculate clear to cloudy semantic though not as much and feels great. Some erection at night but I use Edex and works great. Btw I was a Gleason 4-3 and very lit bit of 4-4 Relationship has gone well but now not so sure. You will be ok!
I worked with Dr. Shasha. I've also heard good things about Zelefsky.
I wish I had tried the Integrative Medicine department. Sounds like you're on the right track there. Had thought about trying acupuncture for the hot flashes -- curious how that works for you.
I also thought about but didn't pursue, whether or not the 1 month shots would wear off quicker, or if a 4 month course would be ok or an alternate medicine. perhaps those are question you could ask? I will say my A1C stayed good. My last physical a couple of months ago, my PCP was happy with labs and whatnot. My understanding was a lot of those uglier side effect came from long-term use. Other than some extra weight and muscle loss it doesn't seem to have impacted me too much so far.
Sorry for your situation with residual disease after RARP, NYC! I am similar as a Gleason 7 with residual disease. Did your docs perform a Genomic test on your cancer cells? My understanding is that if your genomic score puts you in a 'low risk' category, ADT may not offer any additional benefit beyond radiation alone for survival and tumor spread.
Thanks Thomkin. I wasn't sure if the doctor had performed a genomic test, so I contacted the office to check and they told me they had not done it. I have a consultation with them next week to discuss the test. Thank you for bringing this to my attention.
my feeling is that getting rid of the cancer has to come first however im 70 years old . if i was younger that would probably be a much bigger concern. im not saying that sex is not important at 70 but cancer is my first concern.
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