Hi everyone, like a lot of you here, the initial diagnosis comes as a shock to say the least. Gleason of 8, stage 4a. Other than high blood pressure controlled with meds, have been healthy through my 69 years. My biggest concern of course is whether pumping my body full of weird drugs and then getting high beams of radiation is worth all this. Cancer has apparently migrated to nearby lymph nodes which is why I am ploughing ahead. My biggest concerns are the side effects of the drugs and the radiation. Can anyone who is in good health aside from the cancer of course share the degree of side effects and how they alter your life. I'm trying to stay physically active to keep them at bay as best I can. Also what about the long term impact of radiation. Read that it is likely to cause other issues like incontinence and bladder cancer down the road. Thanks all.
Just disagnosed: Hi everyone, like a... - Advanced Prostate...
Just disagnosed
Hi dieselbeagle
you are now a member of the club nobody wants to be in ... but you are in it.
Here is a little general advice - for whatever it might be worth.
1 there is a tremendous amount of info about a lot of different medications/procedures - which is great but can be overwhelming to understand and choose from.
2 listen to what your med care team has to say - as much as you can understand.
3 ask questions as much as possible
4 take notes and do some research on what your med team suggests
5 do not hesitate to get a second opinion
6 bring someone with you to your Dr visits - for hand holding and for help taking notes and asking questions
7 from what I understand about our disease, rarely have I heard about the necessity of rushing into a choice of treatment
8 stay informed - as much as possible ( number 1 )
9 try to fine a support group and stay connected here
10 here is the hardest - try not to stress. Look around and stay engaged with the good, positive, joyful parts of life - especially partners, family, friends
Best wishes
you are held in thought and the hearts of many on here
PJD
thanks pjd, words to live by. I am following a lot of that including getting a second opinion (albeit from another doctor in the health system), doing research and trying not to get overwhelmed. since it is stage 4, it does not seem like I have a lot of options about whether or not to rush into things or at least get going on addressing the situation
Excellent response by PJD.
I was G9 with 3 local lymph mets (Oligometastatic). There is a decent chance of a Cure with this Dx if you go through the SOC. (BTW, on the right side of this forum page, there is a pinned post - PCa Abbreveation list)
I am now almost 3 years since my Dx. I saw 9 Dr's while putting my team together - Uro-MO-RO. I started ADT Lupron, Abi and Prednisone. Then had 9 weeks of Radiation - 44 sessions. This all sounds daunting and you will feel like crap at times. Those 9 weeks flew by, yes there was some very short term wearing of a drip pad when the beams were directed next to the bladder, that came to an end. ADT wasn't fun, I made sure to work out and keep active to reduce the effects as much as I could. During the treatments, we had 3 big vacations for a few months traveling Europe. I am now done with all treatments and feel great. I am told I have a better than 60% chance of being cured.
It's all been totally worth it.
Keep reading all the info on this group, at times it can get depressing as folks pass away. When I look into their Dx, for the most part, their situation was far worse than what I have and I feel very fortunate as a result. It sounds like your Dx is about the same as mine.
Thanks, very helpful. Drip pad does not sound pleasant. While there is a lot of great info here, the abbreviations were confusing so thanks for pointing me to the post.
Drip pad was maybe 3 weeks, one of those really thin ones, not a diaper. I had a short period where bladder control was a bit difficult, when I needed to go I had to go! Unfortunately, you're going to used to all of this very quickly, the sooner you can laugh about some of it the better.
AND before you drive anywhere, take a pee first. I was heading to LOWES one fine day and didn’t make it on time. Leaked heavily into my shorts in the parking lot. I just thought to myself “who gives a damn” and did my shopping in LOWES with a big wet patch on my shorts and headed home 💦.
May I also suggest that you fill out your profile area. Having all of the info about your Dx helps people to respond better to your situation.
All the best!
Three years in, from Stage IVb. Triplet therapy. Doing really well so far except for some fatigue. Did not have radiation or surgery, because it was "too late".
I can’t speak to all of this but I am on ADT and Erleada blocker. Red blood cell count decreased and I get hot flashes mostly at night. For me, neither is a reason to ignore this first line treatment. Fatigue is minor and keeping busy really has helped. I had targeted radiation since I had a lesion on my spine. Zero side effects. I was slow to recover from the radical prostectomy but okay now (didn’t know it spread already.) Maybe get an online second opinion from Stanford or Dana Farber? Chemo is the toughest choice but I don’t they would hit you with that yet. Good luck brother!
thanks MelodyCat...did you seek out second opinion from Stanford or Dana Farber? I did see Stanford offers a second opinion for like $700.
I did Dana Farber which was $2,400. You would want to have whatever tests/scans done before going ahead. You can ask three personalized questions and can follow up on those within in a set period of time. They didn’t come up with anything amazing and pretty much agreed with what was being done which wasn’t a surprise because I have a good team. It is unlikely to be covered by insurance. Maybe Stanford is a better deal? I don’t know. Maybe it would be a good separate post.
Yep sorry you had a cause to find us but glad you did.
The more your here the more everyone is going to want to know more particulars lol.
Your psa at diagnosis, the scans did not indicate any bone tumors? just the lymph node?
And aside from radiation and to where, what other treatments you will be having? Of course I assume Lupron/Eligard but what else.
Not to be a pest but a lot of people here to rub shoulders with and share our lot so just sayin if you can put in more details great.
Cheers
PSA was 5.2 and then went to 5.8 a few weeks later so not astronomical. Doc wanted to do a biopsy but I wanted an MRI first which was the first indication. Biopsy and then CAT scan followed. Oncologist recommended Casodex first which I am on now and then Lupron next week followed by Zytiga for 2 years with Prednisone. Scheduled to start 20 sessions of radiaton in April. Cancer only in prostate and nearby lymph nodes thankfully.
Greetings. 7.5 years since diagnosis here G8/9 with seminal vesicle spread. 39 EBRT’s and Zoladex implant for 96 weeks. Very minor side effects. He is, and always was fit. Rugby front row, 5-10 km day walker, strong guy. The cancer was a shock but he ignored symptoms for too long. Now NED (remission) and we are having a fabulous life. Be your own advocate. Question every advice. Seek out info from all sources. He is 78 and as our Oncologist says, “you could get hit by a truck this arvo”…. cease worrying. 💜
hi dieselbeagle …. In addition to everything above, there is a great group of guys and gals here all in the same boat figuratively speaking. We’re basically sharing the same journey, some ahead …. some coming up from behind. Sometimes you might just want some company. , some socialization with peers. Maybe talk about your QOL ( quality of life ) activities , talk about things you might need to say to unload. Talk about issues that are bugging you ( like frequent pee’ing at night and fixes etc. ) , someone here is has probably dealt with the same issues. Helpful hints, workarounds etc … we are loaded with an active , ever expanding, knowledge - experience base. We’ll “ get it “ because we’re all just like you. This may become more of a “ thing “ the longer your treatments exist. If you feel the “ need “ …it’s all good. There is more to our journey than just technical treatments and dry medical talk.
We try to preface most of our “ quality of life “ posts with a QOL in the title , for those more interested in the medical ( not social ) side, and want to skip the QOL stuff. Welcome brother .
❤️❤️❤️
Based on the limited info provided I don't think you have much choice but to treat it. The side effects of hormone therapy can be a little rough but I was the same age as you at diagnoses and I didn’t find them a big deal. I eventually got used to the hot flashes and night sweats and they became less frequent with time. Exercise, both cardio and resistance, is really important. I keep a fan in my room during the summer with the remote on my night table. I sleep with just a sheet over me. Keep a close eye on your BP. I had to add an extra drug. Radiation can cause a secondary cancer but it's more of an issue for young people. It seems to take several years before something shows up, if ever. Have a long talk with your radiation oncologist. He can probably put your mind at ease by giving you some statistics on the issue. Mine did but I don’t remember and, in any event it, didn’t deter me. You are starting down a road none of us wanted to be on but we are all here for you. You can look at my bio if you want more info but keep in mind my experience probably won’t be yours. Having said that, I’m not going to tell you your life will be exactly like it was. It probably won’t but you are too young to throw in the towel. I had a couple of tough years but I’m doing okay now. I don’t have any regrets about pursuing treatment. If I hadn’t, I might not be here now. If you get good doctors they will take care of you and watch you like a hawk afterwards. Good luck!
DX August 2023.Gleason 9.Grade 4.Metastases widely in bones and lymph nodes. Started adt hormone therapy(Firmagon) in first appointment with urologist.Sent to oncologist .Mouth operation in general anesthesia.Then started chemotherapy (Docetaxel x 6) and darolutamide(Nubeqa).So "triplet therapy" No radiation.No surgery for prostate.Without those medications I would be dead now.
I my opinion you should start adt hormone therapy asap Orgovyx(oral) is new generation adt drug. And consider chemotherapy.
You can manage the side effects.Walk/hike alot/exercise. Avoid eat read meat,fat and sugar.Drink a lot of water!
Trust "official" treatments but ask a lot ,study a lot about your treatments.
Drugs CAN keep you alive and give you hope.
I am alive,thanks to good drugs, and living good life. For now...
pjd65d has given you a great post and I agree with every word. The more you know and understand about the pros and cons of each therapy, the more informed your discussions with doctors will be and the better your decisions will be.
And please have someone with you to take notes because you will forget most of what you are told AND write down questions you want ask
Hi, It is a shock to us all. I was G9 T2 diagnosed Feb 23. Localized no mets. 25 radiation treatments then HDR Brachy. Hormone therapy pamorelin castration shots last one in May to keep the testosterone low secure and stop spread. They consider me cured and told me i will likely die of something else. PSA test tomorrow but up until now not measureable 0.1< Feeling fine and going in a runner and still am. Ok no testosterone has me running slower from 10k 43 min to 50min but who cares. Many write about key is excercise which i agree with. weight training mixed in more to my training but i run about 60km per week. anyways one day at a time and be thankful for every day...some of the treatment evasive but one day at a time you get through it..i had a choice of having prostate removed or above treatment. I chose radiation/brachy route due to less invasive and having removal would have left higher chance of permanent incontinence and impotence. so i said no thanks to that....the power of now Eckart Tolle,,
No one can predict your side effects. That's pretty basic. What would you rather have: side effects from treatment or cancer?
Almost 5 years on with Erleada and Lupron, my main side effects are fatigue and brain fog. Not great. I wish every day that I didn't have to take those medications but there you have it. OTOH, my cancer is extremely well-managed: no tumors on scans for 3 consecutive years.
Get a good doctor, one who listens to you and speaks to you in a language you can understand. Trust the science. Look forward, never backward. The cancer is here, it isn't curable, and you have to focus on the future. Fear never helped anyone so lose it; information defeats fear every time.
Best of luck.
thanks, words to live by
4.5 years after choosing RP and have been on Erleada and Lupron, usual listed side effects but overall stable and working full time. Its a tough diagnosis but certainly livable with decent qol for a lot of people
It seems experiences among we PCa patients vary a lot. I had PSA of 52, and was classed as Gleason bad 7, after biopsy. Treatment options abound - even more now than at time of my own diagnosis in 2018.
I chose RP after considering other choices. Post op pathology confirmed again Gleason bad 7 and a stage of 4b. And my treatment ultimately included pelvic radiation and 4 full years of ADT. My high PSA was one driver of that, as all considerations were that I was high risk.
Some minor incontinence for a few weeks after RP that was mostly insignificant. The applicable term used by my doc was “stress leakage” as this was noticed mainly lifting and strenuous activities.
I had no side effects from ADT other than some minor bone mass loss. Similarly, nil issues with radiation.
Your treatment options are probably wide open. Take your time and carefully discuss with your docs.
Greetings dieselbeagle,
Important sexual guidelines:
Sexual intercourse with a consenting live adult human is limited to a minimum of 4 times in a 24 hour period and with a maximum of 32 times per week. There is a limit to a maximum of 4 partners per tryst or a minimum of 2. Anything goes during the sexual encounters except for injuries to your partner(s). Photographs are not permitted.
So as they say in French "bon appétit".
BTW Would you please update your bio. You may be able to glean info from your posts above and use that as your bio. Your information is voluntary but it will help you and help us too. Thank you and keep posting.
Good Luck, Good Health and Good Humor.
j-o-h-n
The side effects of Cancer progression far outweigh the side effects of the medications and treatments. You just have to focus on making the best choices and educate yourself so you can get ahead if it and live on like I have. You're in the "Shock and Awe" stage.
It will always be worth preserving the gift of life especially if it's a good one. Get on the train.
The bad news is that you haven't been healthy, even though you think you have.
The good news is that prostate cancer is caused by high insulin levels; and high insulin levels can be fixed.
What do you typically eat and drink in a week?
I have not heard anything about the insulin levels causing prostate cancer and not sure that is the case here. I became a vegetarian about 6 years ago, eat salads, tofu , plant milk instead of dairy milk though I do sometimes indulge in cheese. Also mostly whole grains (oatmeal, whole wheat bread). I discovered natto a few years ago and while a lot of people hate it, I actually like it and it is a bonus that it is good for you. Do I sometimes indulge in things like chips, yeah, but try not to overdo it. Also have dramatically reduced my drinking so do have a few glasses of wine or a few beers a couple of days a week but mostly drinking N/A beer.
Many of us gave been thier abd we need to listen to our oncologist abd his suggestions I was diagnosed in 2019 stage 4 Gleason 9
Chemo, radio therapy, presently on ADT
There is a connection to our fitness and how we manage our disease I was a competitive bodybuilder and I believe strongly if I stopped training and intensely I would be much worse off slowed me a bit I get fatigue much faster but I stop when I need to and keep going
Be of good courage my brother you are stronger than you think
Keep up the positivity
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