Im a very active 61 - had zero symptoms - no peeing in the night etc and 15 PSA was only flagged while doing pre op for a hip replacement in January.
Next PSA was 17 in March so in for biopsy - 8 positive biopsy samples of 48 taken but only one of concern with Gleason of 8. PET scan indicated borderline positive in localized lymph node .
Told strongly radiation plus hormone was the way to go. I'm 5 days one week into 45 sessions of radiation (have the gold pins and tattoos ) but the Eligard is killing me - - got 6 month shot one month ago -hot flushes, no energy , cant concentrate but the ED is the worst .
Id recently just got healthy again after 3 yrs of surgery to knees and hip and already had some ED. I lost many years of intimacy in my 40s due to ill health (UC) and now I feel my quality of life is crap again, Im struggling mentally to deal with it . Cialis (20Mg) does nothing .
I cant face 2 yrs or more of this (told by doc) and concerned about my side effects becoming permanent . I just got a private PSA ( not prescribed ) and it was down to 0.2 (yea) . Going to get a second opinion but want to get off the hormone treatment /Eligard asap. Next shot due May 2024.
Need ammunition to question a dismissive doc . Quality of life way more important than extension - worry about that when im 80.
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moon1878
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I am sorry you are suffering. I understand where you are coming from. I would encourage talking to a mental health specialist that specializes in cancer patients. This helped me a lot. Regarding the ED inquire about Trimix injections not as scary as it sounds and works well for me. Please see my bio and feel to reachout to me.
There is no ammunition. The doctor is telling you how to maximize your chances at a cure. If you cannot take his advice, it's your decision. You understand the risk and make whatever decision you want.
hi, sorry to hear about your side effects with the eligard. Based on everything I have seen, Eligard has the most side effects and I think the 6 month injections probably are worse than the 1 month or 3 month injections. Not sure why but it may have something to do with how the drug is released over the 6 month period. I know everyone is different, but my husband has been taking monthly Firmagon injections and has not had really severe side effects. The antagonist hormone treatments seem to have less side effects based on everything I have read, so perhaps you can ask your MO to switch after six months.
I get it! I feel that way almost every day! It sucks, bad! I was diagnosed in June of 2022 with advanced in prostate bed and spine. I’m 63, in good shape, very active life style. I’ve been on quarterly Lupron about 15 months now. Zytiga started about a year ago I think.
I go to the gym and cycle and workout. That’s a must if you’re not doing it. It does help. I take calcium, vitamin D, C and B1. Even with that I suffer bad hot flashes, bone pain, fatigue, mental fog, but neuropathy is the worst of all. I’ve read a lot about having the boys taken out. Still deliberating.
Honestly, I’ll think of quitting and just living out what time I can but, if I quit, I’ll suffer a much more advanced spread to spine and other bones causing pain and or failure. Then there are the organs. It’s not a pretty picture if you quit man.
In those times, what keeps me going is my faith, (don’t know if you’re a Christ follower or not, it’s your choice of course). I get strength, peace and hope from God. I also draw strength and determination from my family. I take it one day at a time.
In addition, read and study all the options. This site is a great resource. Continue that. I suffer from depression and a bad attitude at times but, walk outside in sunshine when it’s out, get in Gods word, spend time with loved ones and it will help you much along this path that we are on together.
Try switching to Ogrovyx. Side effects are less and its very good at knocking down your Testosterones. Exercise every day, power through. It worked for me anyway.
Before you quit, with all negative consequences, try to switch to one month or three months injections and start daily exercise. Start slow and short and increase over time. Meditation, gymnastics, weight lifting and jogging/walking - all of these for. It really helps over time. And pay attention to your diet - the more plant based the better. You will benefit from improvements , but nothing comes overnight. It’s a process, a worthwhile process.
I did 18 months of Lupron plus EBRT and Brachy at 64. Repeat what Nusch said about exercise - gotta do it. I also took a 20 mg dose of Viagra every night to try and keep the plumbing and morning erections going. It was difficult - libido in the toilet. But at my age I wanted to give it my best at a cure.
And yea - worth discussing options regarding ADT. FYI - it took about 4 months after stopping ADT for my testosterone, and somewhat normal erections to reoccur. Could be better, but given the circumstances, I'll take it.
I’ll come right out and say it; without hormone i.e. androgen deprivation therapy in addition to the radiation, you may not get to 80, so you wouldn’t have to worry about any life extending options. Prostate cancer kills, some people more slowly than others.
Some people are lucky in that they get 1 chance to rid themselves of the cancer, fewer still get another chance.
I count myself as very lucky; I went through 39 sessions of external beam radiation including the pelvic lymph nodes plus 3 years of androgen deprivation therapy and for 1 of those years I had to experience complete androgen blockade i.e. Casodex pills daily in addition to Zoladex injections every 12 weeks.
Like you I experienced hell on earth from the side effects of no testosterone. I stuck with it because I wanted to live and take the chance that this one chance could possibly lead to a cure or reasonably durable remission. I finished my therapy last May and have maintained my PSA at undetectable levels since 2020 following completion of the radiation.
As others have said, there are different forms of hormone therapy, all achieve the goal of low testosterone levels. You could discuss these options with your oncologist.
Likewise getting assistance with your mental health could enable you to come to terms with the issues you’re experiencing now or at least help you to chart a way forward.
I recommend that you write down the pros and cons of continuing with treatment and the pros and cons of stopping treatment and discuss these with a therapist with experience of helping cancer patients before you make a decision.
Indeed after you get some help, it’s probable that your lists may change and that’s what you could bring to the attention of your oncology team for discussion.
Whatever you decide, make sure that you are making an informed decision. Dying from prostate cancer whether in the medium term from stopping treatment now or, later with treatment are two very different scenarios.
So long as you’ve informed yourself while choice can be exercised, which is now and probably only now, you will have looked after yourself as best as you can.
Sometimes life is just shit and then you get cancer and you find the treatment is shit. Sometimes the doctor is too, please don’t treat your self like shit, you can control that.
Your life, you are an adult, make informed choices and decisions, I wish the very best for you.
From a study I recently read, sticking it out for 12 months will give you 80-90% of the benefit of going 24 months or longer......this is why the Docs advise 24 months or more.....nevertheless, compared to zero ADT, the 12 months gives a big bang for the cost ...of QOL lost.
You have had tough sledding with your other medical problems and treatments. However, on the plus side,overall the younger you are, the more likely that you will overcome the ADT SEs once you terminate ADT.....though might take longer, eg 12 months, than you would like.
Have you had a DEXA scan? If not , suggest you ask for one. ADT impacts bone density, so you want to have a good baseline measurement of your bone density......at 61, you are probably still good on that score, but why not assure yourself !!
Like you, I found the mental challenges of this disease as difficult as the physical. You will experience all the stages of mourning. When I got to anger, I decided to put it to use. I now work as a Patient Advocate for the SW Oncology Group and have worked and presented at National gatherings and with international advisory panels relative to both general cancer research and Prostate Cancer as a Patient Advocate. No one can give you back the life you had, but like life after the death of a loved one, you can build a different life. Figure out what is important for you, work with a therapist, do the resistance training, and then decide what you can do to make this new phase of life ......yours. You are alive, science has enabled a better alternative to what others had to experience just a few years ago. Embrace the time to do more in your life.
Just joined, just got the news. Gleason 8 how do I decide between surgery and radiation? The hormone therapy sounds brutal. If I do surgery can I avoid hormone therapy. Any radiations procedures where I can avoid hormone therapy. Thanks for you help
OK let’s start from the top. Hormone therapy is different for many. You most often only hear the negative and how bad it is. I am almost 80 and now I go to the gym every day to do weights and walk about 5 to 6 miles everyday. Started that 4 months prior to radiation. Hormone only side effect is VERY minor hot flash for 30 seconds or so. I also watch my diet and lost 12 lbs. There are many like me out there.
Sounds like the journey is just starting. Go on UTube and search prostrate cancer dr Schultz inri. You will find that radiation and surgery are equally effective. My buddy choose surgery at Mayo thinking he would be Ok. He just finished up his salvage radiation and is now on hormone therapy for a year. So surgery does not guarantee no radiation or no hormone treatment.
Also look for Malcare videos on line. They are produced by this site. Really good too.
Post here often when you have questions. Great group and some amazing knowledge.
Hope this helps you get started. It can be scary but knowledge is power. Start assembling your team - urologist, radiation oncologist and medical oncologist.
Weight training at least 3X per week, all major muscle groups.
Switch to high-dose transdermal estradiol. Keeps T low but adds back E. Much more tolerable array of SEs.
Get on antidepressants. Get a DNA test first to determine which drugs will be effective for you.
Quit early. I didn't know about the estradiol option and wasn't able to get on antidepressants at the time, so I simply quit after 12 (of 24) months. I took a chance, and it may end up killing me, but I simply couldn't stand the combination of fatigue, hot flashes, loss of sexuality, brain fog, and pounding depression, which had rendered me praying to die in my sleep or in a car accident.
I found that duloxetine works great for depression. I was on it before dx with Pca in 2013 and have never stopped using it for 21 years! I also use estradiol patches for ADT. I’m Gleason nine but still here after 10 years.
The PSA is down exactly because of the Eligard! All of us have had those issues and most have worked through them with treatments from doctors.To be blunt the goal is cure but stopping treatments is the opposite.
Hi, Moon. Your doc has to toe the line based on statistics and standard-of-care. However, this does not take away the power of decision from you, and I read you loud and clear.
You have time before your next shot. Take the time to educate yourself, make yourself feel less helpless, and to inform your next decisions. For example, although I understand it is controversial, intermittent ADT is still discussed (never an option for me). Maybe you can find some middle ground in all of this crap. These may serve as starting points:
Aside from the obvious mental trauma ADT can inflict, I think a legitimate concern is your orthopedic history and the established fact that ADT is no friend to our joints and bones. If you have not yet, get a DEXA scan (very simple, see, e.g.: my.clevelandclinic.org/heal... ) to get a baseline of your bone health now.
Those 19 years you're talking about will end quicker than you can say "Holy shit I'm 80"..........
Note: I wish to offer my apologies if I offended anyone regarding my so-called humor about "race" or "misogyny". To me, humor is boundless and since we entered this word crying, I thought it would be a good idea to exit laughing.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 12/18/2023 6:41 PM EST
I'm guessing you cant do anything now until May 2024. The HT is in your body to do it's intended work and I doubt you can do a thing about it. From my understanding the effects of HT linger on for many months after you stop it anyway.
Maybe re-post your query in April next year for any updated responses, although many are good at present, but as mentioned you are locked into your treatment plan now and can't change for another 5 months anyway.
yep understand that so taking the chance to do some research to have some better questions to ask later . Also see if my symptoms ease off and also what happens to my PSA levels . In the meantime Im committed to the RT (6 down , 39 to go) . Also going to get a 2nd opinion in the UK in Feb when visiting. Luckily I'll be staying close to one of the best cancer centers in the country.
Positive Thinking and Physical Exercise seem to be the 2 ingredients I am constantly seeing on this forum that can be a huge help in trying to cope with ADT. My turn is coming next month and like you I'm going to try and continue my travels and enjoy being alive, as hard as that may be to do. I think you may find as time goes on you will adjust to the ADT and find ways around the SE's - again I'm not speaking from experience but rather from what many others are saying that have been on ADT for years.
It has been shown to accurately predict which patients will benefit from ADT (34% of patients), versus 66% of patients who will have no benefit from ADT.
The Artera AI program uses your own digitized biopsy slides, and the AI was trained on over 1 million biopsy slides. Very cool stuff!
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A reason to have both ?
My turn for advice
UNDISCLOSED SIDE EFFECTS OF HDR BRACHY THERAPY.?
Should you have hormone therapy along with radiation?
Recurrent Prostate Cancer??
