71 years old in Canada. I was just diagnosed Gleason 8 (10 cores out of12 pos. with 5- Grade group 1, 3 -GG4 and 2 -GG3). Mostly on the left side and shallow. CT was normal, no enlarged lymph nodes or any other problems. Bone scan to come in 2 days.
My PSA was initially 16 (5 years after my last PSA which was normal). I had a retest 20 days later and it was 21 but I had gone to a different lab for the second test so, that could be reason for the difference.
I am very fit and active. I have been a regular runner for the past 22 years and currently run 22-26 miles/week. Mainly outside all seasons but now using the treadmill when the temp drops below -12 C. BMI is 20. No other health issues ever.
After a lot of reading my preference would be hormone treatment with radiation (EBRT or IMRT if avail). Does anyone have any radiation treatment experience with similar symptoms to mine?
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Wicker12
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Welcome to this outstanding forum. There are some knowledgeable and exciting guys here. I don’t refer to me, I’m also a learning boy. But we have kind of similar bio. Also GS 8 (but much higher PSA), runner since youth, BMI 19.5.
So I recommend to wait for the bone scan. Then I would go for a PSMA-PET/CT scan, that’s the most precise on the market by now. If you have no mets and PC is still local, radiation plus ADT might be the right treatment. But wait for guys like Tall_Allen & Co to respond.
Whatever treatment, keep on running and add weight lifting. I think these are two important factors on top of medical treatments. You might consider a whole food plant based diet for overall health as well.
Th anks for the reply. I look forward to hearing from the others. I asked my urologist about the PSMA /Pet and it is available in my province but hard to get . Apparently you have to apply to the govt. It seems that getting on ADT soon would be beneficial as it would . at least, stop progression while I'm waiting. On the diet, I had been intermittent fasting for the past year and fast 19 hrs/day so my glucose level in the blood gets very low. I was doing that well before my diagnosis. Taking suppliments , as well as vitamins, Lycopene, Soy isoflavone, Saw Palmetto, D3, A B6/12. I also got into Wim Hof breathing and cold therapy about 4 months ago. Just for health benefits . I don't think the cancer xares too much about all ot that, though.
I agree with what’s been said previously. Wait for the bone scan results before deciding on treatment direction and if at all possible get the PSMA scan. They aren’t that easy to get in the States either. Our insurance companies can be rather reluctant to approve them.
The one thing I will add is get a medical oncologist (MO) if you can. Urologists are typically who first diagnoses the PCa but then you should be transferred to a MO. You need someone whose specialty is cancer in charge of your care. Urologists are certainly knowledgeable of PCa but not to the degree of a MO.
If your bone scan is negative, a PSMA PET/CT will give further assurance that it has not metastasized. If both are negative, brachy boost therapy with 1 year of ADT is the tried-and-true therapy. There are other, more experimental forms of radiation, but I don't know what is available in Canada.
Most will say if the cancer is encapsulated to the prostate, get a prostatectomy. I have no experience with that. Keep in mind, once your prostate is exposed to radiation, it can never be removed. ADT would definitely be a start. Talk it over with your doctor. Are you seeing an oncologist or urologist? Hopefully you are in BC, from what I’ve read there are some great facilities in that province.
Started with a urologist but I will be seeing a Radiologist/oncologist with Brachy expertise in March. No, I am in New Brunswick, not BC but there are 2 oncology centres nearby and most facilities are available
I agree a PSMA/PET scan would be advantageous. My original treatment path was ADT, brachytherapy and then radiation. I’m glad you have centres near you. Please keep us posted on your next steps.
You have a high risk PC, request a PSMA PET/CT to determine if the cancer has extended in the pelvis and/or there are distant mets. If the cancer is confined to the prostate, radiation plus bachy boost and ADT should be discussed.
You need to consider that bone scans and CT scans have a very low detection rate when compared with a PSMA PET/CTs. A PSMA PET/CT study will help to guide therapy, even to make the plan of the radiotherapy if the cancer have extended in the pelvis.
Thanks Tango. I hope that I can get on ADT soon so, at least, it can stop the advancement. They do PSMA/PET in my province but I have to request it through the Govt. I would pay for the scan myself if it is not too high. What about mpMRI?
A mpMRI will give info about the prostate and surrounding tissue in the pelvis but it will not give you info about distant mets.If I were in your situation now instead of 21 years ago, I would not have any treatment without a PSMA PET/CT.
The info available indicates that a large % of initial treatment plans are changed after a PSMA PET/CT.
Wicker, we're in the USA rather than Canada, but we were told that our insurance company would not approve a PSMA scan ordered by our urologist, that we needed a oncologist to get approval (which came through). Please get an MO as well as your RO. Also strongly recommend that your oncologist be a specialist in prostate cancer (not a generalist), at a cancer 'center of excellence'. You want the best.
I do believe the tracking chemical they use is expensive. I believe ours had to be specially delivered, and we were told very firmly that if we had to cancel, be sure to do it by X pm the preceding day, because once they get it, it's useless if not used. My husband was told the retail cost of the entire thing was something like $14k. We paid $1250 copay.
At Kaiser, where it was covered for high risk.......as it is also covered by Medicare.... the bill showed approx $5k for the scan procedure and approx $6k for the radiotracer, in my case Pylarify......idiots tried to bill me a copay of $600 for durable medical equipment ??? Had to appeal...incredible incompetence !!
Hello Wicker ! I was #4 ,T-4 ,Gleason 4+4=8 ,non op , so I did imrt w/ Lupron and another adt that halted t production from the adrenal gland . I did much alt med my first two years . Mainly high dose 50 gram vitamin c ivs bi- weekly .. Then i went clear after imrt . I did an orchiectomy and dropped the lupron and I dropped the other pills 8 months ago . I was just 53 , now 61 . If you are running that much at 77 you are very strong . May you put that pc back in its hole where it belongs . The best we can hope for is a long term remission .Treatments can tear us down plenty .Just get through it ! Stay strong and good luck! We have many fine Canucks here . Welcome to the club! Pc knows no borders . Take care . Scott
Thanks much, Lulu. I'd been doing a few general health things since before my diagnosis. Intermittent fasting (I wanted to take off 10 or 12 lbs but I liked the benefits and ended up losing 30 lbs. BMI 23 to 20) I fast 19 hrs/day and during the last hour I do my 6.5 km run. The blood has no glucose after 18 hrs (they say) so you are burning fat so it's a bit like Keto. Also doing cold showers daily, breathing exercises (Wim Hof method...look him up!) and sauna twice/week. I thought I was destined to live to my 90s until that dreaded PSA result.
Hey wicker ! 30 lbs? Good job! I like the cold and sauna . That’s Basic good medicine for us all . I feel that we all should walk to our own drummer in this fight to survive . I’m 61 and after 8 yrs of this ,90 or even 80 maybe even 70 ain’t even in the cards for me anymore . QOL should trump the quantity of years left .. You do you . Keep rolling ! Scott
Hi, Yes Gleason the same, 22 PSA . After Zolodex injection for 2 years and 42 radiation treatments. Currently applying Testosterone gel nightly and Prolia six months injection. Now living reasonable lifestyle. Caught early enough you will be right. Positive attitude helps. Now 75 years old.
this doesn’t sound good to me, stage 4 in 2016. That quick of rise in PSA is I indicator of cancer growth, Did they do a Ct with contrast ? Bone scan will tell a lot more. Don’t be afraid to push the doctors or to get a good oncologist. My Ct in 15 didn’t show anything but the Ct with contrast in 16 looked like a Christmas tree all lite up. I did chemo 6 rounds and then on to Xtandi December of 16. Still kicking
Your age, PSA, and biopsies sound much like mine - 70, 16, and of 12 biopsies 5-G8, 4-G7/4+3, and 3-G7/3+4. After clean bone scan, abdomen CT, and PSMA, I was given the choice of RP, IMRT, or IMPT and recommendation of 24 months of ADT. I was not a candidate for brachytherapy due to large (and extended) prostate, not a candidate for hypofractionated radiation due to existing urinary issues and I chose IMPT (pencil beam proton radiation) and agreed to 24 months of Orgovyx and apalutamide.
From my understanding, any G8 biopsy suggests 24 months of ADT. In my case, I started Orogvyx in July 2022, apalutamide Sept 2022 and just finished 38 proton treatments at the end of January 2023. Current PSA is undetectable and I begin closely watching my PSA for the rest of my life.
I started out great with exercise but not enough and already notice muscle loss and fatigue. In your case, keep up the exercise regardless of anything else you do if possible.
We have similar profiles. I do a variety of exercises, usually over an hour each day. I think it is a good idea to start ADT as you decide next steps. I chose EBRT and I was able to continue a vigorous exercise program throughout treatment. My swim times have declined about 20% but there were no major side effects. Without prostate removal there may be concern about recurrence but I was told some percentage of those with removal ended up with salvage radiation anyway. Best wishes.
My husband's situation was similar in 2016. Gleason 8. But his PSA was 105. Cancer was outside of the prostate and his cancer was aggresive. He had 44 radiation treatments after a CT and a bone scan. Also immediately started with hormone therapy with Lupron. Bicalutimide worked for three years. Switched to Enzalutamide for couple years then that failed...PSA started rising. Switched to Apalutimide which did nothing. PSA continued to rise. Oncologist is suggesting radiation infusions as bone Mets have increased and cancer is more aggressive now. Right now he is doing spot radiation for pain control for his ribs and upper spine. As you can see by everyone in this forum, the treatment success varies for everyone. Just as their cancer itself varies. He is 76 and has recently been diagnosed with Parkinsons. He is diabetic and has a history of heart disease w/ by pass and lung surgery. So he has many other issues that make treatment more challenging! Even with those issues, the cancer was controlled for many years. It sounds like you are very health conscious and that will be a tremendous help in your success. Best of luck. Remember, new treatments are becoming available all the time.
With a Gleason 8, (is it 4+4 or 5+3, 3+5?), I would forget preferences and listen to your pro. Enter into a discussion about micro-metastasis and the possibilities of metastasis disease. Your bone scan will help to clarify and existing metastatic lesions..... however, discuss micro-metastasis.
You're one of many members who started off saying how fit they are/were. It only goes to show us that "being fit don't mean a shit" when it comes to those M.F. bastards dancing the Tarantella in your blood stream.............BTW Greetings Wicker from Wicket.....
I guess I was just a surprised at that. But, on the other hand, if I didn't try to stay fit I might have died of a heart attack long before my PSA was detected so....there's that, lol. I'm trying to stay positive as everything I hear says that PCa is very treatable. I know I will be in for some lifestyle changing side effects but, considering the alternative, I think I can handle them. Best wishes to you.
I had a similar diagnosis, Gleason 9 for 6 cores out of 13, PSA of 7.5, no apparent metastasis. I started ADT almost immediately, which lasted for 13 months. IMRT for 25 sessions, followed by LDBrachy. The treatment side effects are no fun, and some are still lingering over 2 years after initial diagnosis, but my PSA has stayed under .1 so far. You can expect your running to become more difficult, along with any other physical activities you engage in, but keep doing as much as you can. You can learn what the other treatment side effects will be if you haven't already by doing a simple internet search, and they are real. Your radiation oncologist should also give you a tutorial. Good luck.....I hope your PC is confined to your prostate, and you can choose the treatment options you prefer. BTW, I felt like I was also very fit and active (jogging, bicycling, long walks, weight lifting, relatively healthy diet) before being diagnosed with PC, similar to a lot of others on this website, so it's not uncommon to get this lovely surprise despite living a healthy lifestyle. 🦊
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