So I am a 72 (soon to be 73) White male. I was diagnosed with prostate cancer about 18-20 months ago. I have had three biopsies. The first two were transrectal approach and the last one was peritoneal approach. No issues with either approach. They are painless as they give you a drug to put you under for about 15 minutes or so. All three done as outpatient in urology surgicenter. My first two biopsies each had about 15 or so core samples. All samples on the first two came back as 3+3=6 Gleason score. My last biopsy had a single core that came back as 4+3=7. Since the 4 is on the left side of the equation it is indicative of a more aggressive type of cancer. I am scheduled for a PSMA Pet Scan next week at my request. That is a procedure where they will inject a small amount of radioactive substance with a tracer that specifically targets Prostate cancer and can show where the cancer has spread if it has. I asked for that because I have quite a bit of pain in both hips, shoulders and spine....most likely that pain is from arthritic changes in the joints but hey....if it has spread then it might change the conversation with regards to treatment strategies. I still have not decided what course of treatment (if any at all). I may very well do nothing as at 72 years old there is a good chance I will live 10 years or more if I do nothing. In 10 years at 82 I am probably good with that. All treatments have side affects....its just a matter of what degree as different people respond to the same or similar treatments if different ways. I will update this after my PSMA Pet Scan next week. Good luck and long lives to all.
72 year old: So I am a 72 (soon to be... - Advanced Prostate...
72 year old
Getting treatment is always a personal decision. The doctors lay out options. If PCa runs in your family, or you have a great wife, like me, I opted for aggressive treatment and am currently likely to have a long runway of non-treatment after IMRT and ADT + Abiraterone.
My doctors interpreted my interest in aggressive treatment as going for a cure.
If your cancer spreads, the side effects of doing nothing will be more unpleasant than the side effects of treatments that slow or prevent cancer spreading.
Well, there is no guarantee that you will be in misery from non treatment. Yes thats a risk but you can read many post where people opted for no treatment and died with no serious side affects. Just as there are some who opted for treatments surgery, hormone therapy, radiation with no side affects. I have never expected that I would live into my late 80s or 90s and don't really think I want to. I have had a great life and while I am not trying to rush death I do not fear death at all.
if I were in your shoes I’d take two immediate steps:
1. Get yourself a medical oncologist who specializes in prostate cancer at an NCI Comprehensive Cancer Center.
2. Have your biopsies reread at Johns Hopkins pathology lab. Also have ample sent for genetic testing while they are still viable.
I happen to live in Nashville TN....it is a hub for healthcare. HCA (Hospital of America) has the Sarah Cannon Cancer Institute here in Nashville. They work with specialist from all over the world. Also Vanderbilt University Medical Center is here and they have a very robust Cancer Facility. I do plan to meet with an oncologist just to learn what is cutting edge and get additional information. To my knowledge no family members have had prostate cancer.....perhaps they did but died of something else. My maternal grandfather died in his late 30's....my paternal grandfather died in his late 50's. My father died at 78. I can't find anyone in my family history that lived to be 90. I do have probably a little better vantage point than many as I worked in the Radiology field for about 18 years and then still worked in Healthcare but more on the IT side until I retired back in 2018. Of course most of the techniques used today are much more refined (with regards to radiation therapy especially) Many of the other things didn't even exist back when I worked...especially the PSMA-Pet Scans. We had CT, MRI and Ultrasound back then but they were way more primitive than what is available today.
I’d opt for Vanderbilt.
I agree with Papal 1 -- Have a 2nd Opinion of your pathology results for the reason below .
My 1st Biopsy came back negative after an MRI showing T2 PI- RADS 5 . The negative result was obviously in conflict with this MRI result , although a very small percentage of Biopsys can be negative . Thereby not being satisfied I had a 2nd Biopsy , all Transperineal MRI Fusion Biopsy , this one came back with 6 cores Gleason 3 + 3 = 6 .
My next move was a 2nd opinion of the G6 pathology report -- This 2nd opinion came back , all 6 cores were uprated to Gleason 3 +4 = 7 .
Finally , have your slides sent for a Decipher genetic test.
Good luck. DO NOT SIT AND WAIT . You have numerous options for treatment .
I have had three biopsies. The first two all came back as 3+3=6 and the last one came back with a single core showing 4+3=7. I guess I could have another biopsy but it seems like I am just trying to get the results I want from the biopsy rather than accepting the ones I already have. I can send my specimens off for a second reading but will I change my opinion if the second opinion comes back as 3+3=6 instead of 4+3=7. Probably not as in the back of my mind I would wonder which was actually correct. That said I am not much of a worrier...I pretty much take what life hands me.
Me? I chose treatment. It is what is keeping me alive.
Albeit while 1 in 10 are reported to have side effects, I have them all in spades!
So why do I choose treatment? Because I am not the only one that is affected by my decisions. If I were the only one, I would choose the same as you = none, park my butt in the woods and let nature take its course.
In my decision equation, I have no choice but to do treatment and I have no qualms about doing so. I am but a few years ahead of you and have learned over these many decades, friends and family are most important, #1 on my list. Your list may be different.
We all walk in our own shoes. Godspeed in your journey!
Yes each of us have our own paths with regards to actions. I did not see your age etc in your bio and you said you are a few years ahead of me but I am not sure if you mean in terms of age or in terms of how long you have been on treatment. Yes family is a top priority on my list. I have a great wife and three awesome daughters. My children are out on their own so if I were 10 years younger, still working a job and had children that were still dependent on me I very likely would make different choices but I am making my choices now based on my current life position. It sounds from your post that your are having a lot of side effects. That is one of the things I really don't want to expose my children to. I want to have the highest quality of life I can have now . I am the personality that if I have five more years with little to no side affects from treatment then so be it. People here say well the side effects of doing nothing are worse...intense pain from bone cancer and worse. Well we are all going to die of some cause sometime in the future and we have no way of knowing what form that death might take. My stepmother had a stroke and died of pneumonia after spending nine years in a nursing home unable to feed, bath or even speak. From my position it was a miserable way to spend all those years. So while I haven't made my final decisions yet (I have a PSMA Pet Scan next week to check for spread). I am leaning towards brachytherapy with no hormone therapy if that turns out to be an option for me....otherwise I may very well just roll the dice and see what happens since even the treatments are no guarantees....make the odds better....perhaps but at what cost. When the time comes I hope I pass peacefully in my sleep .... hopefully God will bless me with that regardless of when that is. In the meantime I will enjoy the quality of life I have as it could end at any moment. Wishing you the best and hopefully the worst is behind you.
75yo..., so, but a few years ahead..., biopsy 2021, delayed several years due to covid stuffs..., Me? Depends on what you mean by quality of life. Me? If I can get up, see the sun and breath, then I have some quality of life. Me? I don't care if kids are out of home, they still get a vote, and for me, I took a vote, which was overwhelmingly, yes to treatment. You are free to do as you please. Your posting suggested that you might like a few other opinions, so I gave you the shortest version of mine, your long reply suggests that you would like a long reply. Me? I know that I can choose whatever I want (as do you) but for me, I do not do this in a vacuum. I do it with my family and friends. Even when they know that I'd rather have nature take its course, they ask and vote for me to do the therapy. Everyone will react differently to the treatments, as well as to the cancer if they let it grow. It is not without pain. How much? Depends. I am very lucky as it is not in my endocrine system, only a few mets (cells that have moved/metastasized) to my bones in a few spots. 2 annual PSMA tests (glow in the dark) showed nothing glowing in the dark, which means that I am good to go, and treatment is working. For some, sadly, treatment stops working, at which point there are many options. I had four sets of grandparents, none of my grandfathers had any of these treatments available to them let alone options. I do. So, I take council from my family and friends (100% for treatment) and follow the protocol. And occasionally, I post here.
By posting your question here, it appears as if you want a vote here. I suggested that you might take a "poll" amongst your family and friends. Unless I am reading you wrong, your long reply suggests that you don't care what they think and that they have no input into your decision which means that you are dead set on no treatment; no treatment = no side-effects = better quality of life (albeit, much shorter). Me? My equation is different. I took a poll (small, over 100). It was unanimous for treatment. I was thinking that maybe your poll was 1. Whatever it is, it is your choice not mine. I have no interest in arguing your choice with you. From your long reply I take it that you are used to being in charge and making your own decisions on your own. Make it! Do it! For that, there is no need for you to post here. Forgive me if I misread you. My reply post was intended to give you something to think about. In keeping with that I will end with this:
Short version of 'The Serenity Prayer':
God grant me the
serenity to accept the things I cannot change;
courage to change the things I can; and
wisdom to know the difference.
Most people think that the nouns are the important thing. That the prayer is for God to somehow grant/give serenity, courage and wisdom. I have a different view on it. I think that the verbs are the important thing. Through your lifetime:
You will find many things that you cannot change, you must 'learn' to accept those things. When you do, you will find serenity;
You will find that there are things that you can change, even if it takes time and more effort than seems necessary. When you do that, you will find courage;
AND
after practicing those first two you will have found wisdom. You will know which is which.
Moving forward, my life will be different than yours. I don't know who will have more pain, you or me. I am told that you will in the end, but that's what hospice is for. I am told that I will live much longer and NOT die of prostate cancer. It will be a different life than I had before. Before = Hercules! Now = Barney Fife! (I am told that most young'uns don't know who Barney Fife is. I don't have a modern analogy yet, so I ask them to 'google it'.) I am used to doing for others. Now I will need help. Do I have the courage to accept that? I pray that I do. Sounds as though your journey will be different. Me? I only hope that I have given you something to think about (not something to argue about). If not, then ignore my wanderings. Godspeed in your journey!
Short definition of Godspeed = a wish for success given to a person on parting.
To: Dadyrabbit (soon to be 73 years old),
I love this:
Be what you is and not what you aint,
cause if you aint what you is,
you is what you aint.
Good Luck, Good Health and Good Humor.
j-o-h-n
I is what I aint? (I got lost, but it was FUN!)
And I ain't what I is........(I'm always lost)...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2024 8:48 PM DST
Don't worry! I'll come look for you! (Where's my cane? the one with the red tip? Joke, not really blind. Just living with 2 detached retinas! But still willing to look!) Take care!
Detached retinas? I was going to research it but if I do.....I would end up thinking I had it (them)......That's why I never look up the word "pregnancy".....Keep on Keeping on.....
Good Luck, Good Health and Good Humor.
j-o-h-n
Stop! Stop! I am laughing too hard! (And thank you for that!)
I just wanted to say the best of luck with your treatment. My dad was diagnosed at 55, he had aggressive cancer and lived 10 very good years before he got his first symptoms in january this year. He didn't have any side effects other than hot flushes from the hormones. He went through chemo and didn't get sick at all, he lived his active life as before. He was in good shape though. So there is hope that it doesn't have to be as bad as people think, but of course everybodys different 🫶
Glad to hear your dad didn't have many issues. 55 is way too young to have to deal with this crap....my brother-in-law had prostate cancer in his 50's as well, opted for surgery....his wife (my sister) said it played havoc with their sex life for about two years but other than that (and the catheter) he has been fine. He and I are a year apart. If I was in my 50's I would probably make different choices. Thanks for the post.
I have read a lot now since my surprise PSA level almost 2 months ago. it was 35, repeat 3 wks later was 33, with a free PSA of only 7%. Waiting on an mpMRI before I go to biopsy. At 69, I'm sort of with you on this. I mean the quality of life balance coupled with life expectancy. You did a nice job explaining this above. I really appreciate that.
I suppose more of us could benefit from reading Atul Gawande's book, "Being Mortal."
atulgawande.com/book/being-...
I think if a friend asked for recommendations when they are confronting PCa I'd first recommend "Guide to Surviving Prostate Cancer" which many on this forum have mentioned. But I'd add "Being Mortal" as the companion book.
I feel I was lucky to find this forum and I'll keep posting as my diagnosis progresses. This is the epitome of the 'Reluctant Brotherhood' for me. Lots of positive vibes, and blatant honesty about dealing with this disease.
Thank you for your post. We have some common life experiences .... except you appear to be a bit more athletic than me LOL. I too enjoy woodworking, worked in health care (I worked in Radiology) also I enjoy computers...have assembled all of my computers myself. I worked in Healthcare IT for the last 15 years of my job. In respiratory care you were exposed to way more patients with immediate health issues that I likely did working in Radiology, although I have worked with quite a few...I think a lot of those experiences helped shape how I feel going forward after this diagnosis. Funny thing .... working in that field I had a mental list of diagnostic procedures and treatments I declared I never wanted to have and dang it I have had most of them from myelograms to quadruple bypass surgery....go figure. Prostate cancer was never on the list but maybe it should have been LOL. By the way, I am sure you are aware but prostate biopsies should not be painful.....make sure when you have it they give you propofol before the procedure and you won't feel a thing. I have heard some places do them under local.....no effing way!! Now that would be painful I think. Good luck to you and hope you do well with your upcoming procedure.
A suggestion: Make sure that the imaging center where you are going to have the PSMA-pet is "in-network," if you are Medicare Advantage. My Medicare Advantage allows me to go out-of-network. My doc said: "go here." I had even asked him, "that's a two hour drive, can I go to an imaging place closer to me?" He said: "I really like the way this place does things."
So, I did. BIG MISTAKE, instead of a $250 co-pay, now I am billed $2,995.
I will contest the bill, most likely in NH small claims court because the 2022 Surprise Medical Bill act requires that an entity give me a form that makes it clear that they are not in net-work and they should make it clear that I may have to pay more. Had they told me that they were not in network, I would have gone to the local place which is in network.
The place where I had my biopsy was in-network, so I had mistakenly assumed that the imaging center would be too--a $2,700 mistake.
Consider taking celecoxib for the arthritis (I'd be very, very surprised if you had multiple mets). I'm Gleason 8 w/ a PSA of 54 and a TIIIa, all pointing towards distant mets, and yet, on PSMA-pet, there are none. Interestingly there was a lot that I incidentally had done to make the environment difficult for mets to come into existance--and celecoxib was one.
There's a fair amount of research, celecoxib does not cure CaP but it does slow it down, see:
The impact of celecoxib on outcomes in advanced prostate cancer patients undergoing androgen deprivation therapy
Note: I did many hours of reading before choosing celecoxib as my NSAID. My take is that it's the safest NSAID and has a better safety profile than Ibuprofen on Naprosyn, especially safer for gastric issues, kidney and cardia issues. Prior cardiac issues or other medical conditions may make any NSAID inappropriate for you, always check with your Practitioner (of course).
See: ncbi.nlm.nih.gov/pmc/articl...
I too, agree with Papa 1’s post below.
Incidentally I also have been taking rosuvastatin and metformin ER, both are known to be anti-metastatic.
I'll place odds that your scan will come back with no distant mets.
Thanks for your reply. Thankfully I am on original Medicare. Having worked in healthcare for a long time I had some insight to Medicare Advantage. While a bit cheaper I decided it was not worth it as my wife and I like to travel and I did not want issues with Advantage plans since I could avoid most if not all with regular Medicare. Thanks for the heads up about celecoxib....I will check into that. I also don't anticipate any mets in my case but thought it best to check before deciding on any treatment plan since it could change my thoughts/approaches regarding treatment. Hope you are doing well and Hang in There friend.
I went with ADT (Lupron/Zytiga) and it was fine. I am "on vacation" right now hopefully permanently as I've also had 2 rounds of radiation (prostate & pelvic region). Some side effects but no pain.
Thanks for your reply. This is exactly what I want to hear.....actual experiences that patients have had with various treatment options. I know everyone is different and some might have bad experiences while others are just fine...its just nice to know what people actually experience and not what my doctors tell me they experience. Thanks again.
From Dr. Sperling
FDG pet scan not the best for prostate cancer ?
How is PSMA PET scan being used in your experience?
Can PSMA-PET scan be used off label?
