10 years of prior PSA testing, 1st test showed PSA 1.2 at age 43 (father had prostate cancer). slacked off for 2 years while travelling, test showed PSA had gone from 1.9 in 2012 to 4.3 in 2014. (more than doubled). No symptoms or night time bathroom visits.
Begged for DRE, my Dr was reluctant! resulted in noticeable lump being found. (A prior DRE 2 years before had also shown a lump but for some reason that DR sent me for a sigmoidoscopy, which showed a healthy colon).
Biopsy showed 4+3 Gleason Grade, stage T2b
Talked with Surgeons and Radiologist. 1st decision was surgery as I was fit and healthy. 1 day prior to surgery MRI revealed lump might extend outside of prostate and could involve seminal duct (resolution of MRI makes it hard to be 100% sure).
I opted for radiation as chances seemed high I might end up in radiation anyway after surgery if seminal duct was revealed by surgery to be involved (no point in doing both surgery and radiation!)
Later research led me to Anderson Associates cancer treatment center video of Dr. Roach. His statistical evidence really impressed on me the gains that had been made in radiation and the better outcomes for man's best friend ;-) when compared to surgery and nerve damage.
Had 4 months of Zoladex prior to radiation, fatigue and hot flashes but not enough to stop me surfing!
Gold seeds implanted to guide radiation (ouch). Daily radiation treatment was fine few side effects beyond fatigue and increased night time peeing, 3-4 times.
I did a fair amount of swimming and hiking, watched my diet using myfitnesspal, kept near recommended vitamin and nutrient balance, took calcium+Vit D, also probiotics.
Finished 2 months of treatment 78gy total dose.
It's now 45 days after treatment and I feel pretty good, no more side effects than before! Insisted on bone density test, revealed I had ostopenia (-1.7) most likely due to hormone treatment, wish I had had a test prior to treatment!
After 9 months total of Zoladex I am thinking of quitting and not doing the last 3 months Zoladex my Dr recommended due to bone loss, and it seems most do not continue for much more than 2 months after radiation anyway.
After radiation sex has been a bit painful in 1st week but now is ok. "it" still works 100% but I of course still feel the loss of libido and desire, the darn thing has a mind of its own though.
Just started an increased fitness and resistance training regime to help my bones. I think exercise and hiking really reduced my side effects of fatigue and helped my mental state.
2016, Feb 29th ! one year and 2 months after end of Hormone treatment.
I did the full year of Hormone treatment even though I had concerns about bone loss, Dr thought as I was 5ft 7" and have always been under 150 Ibs or less perhaps my Osteopenia has always been there?
It seems to me my penis did shrink a bit, scare tissue damage from radiation I guess? but works fine!
Side affects from the radiation and hormone treatment have been better than expected. Libido is returning as Testosterone returns to normal range. I had a slight uptick in PSA 1 year and 2 months after end of radiation treatment to 0.15 ug/l (lowest it ever went was 0.019 ug/l which was just prior to radiation treatment) as the testosterone returned to near normal range, lets hope is keeps under control as the months pass.
Life is mostly normal and my regime of fitness and resistance training has me in better shape than before this all started, I am positive this has helped with side affects of all kinds and also helped improve my mental state. (I have always been an optimist).
In last 3 months or so I find I need to be careful with high fiber foods like museli and irritants like coffee as I have very occasional bright red blood spots in tissue after taking a dump, I am almost certain the fiber is to blame. Must still need healing internally. Online this seems like an expected side affect from radiation in some people. All other bodily functions are normal.
I am happy to be through the battle and happy that I was proactive about my health and had my PSA; and the DRE tests, and have hopefully saved myself from my fathers fate.
I would 100% take the same treatment again and I am relieved not to have had surgery with its side affects.
PSA being tested every 6 months, PSA had a jump to 1.0 at 17 months. (0.019 12 months prior)
hopefully as this is at the 17 month from end of treatment it is a benign pop, one article I read indicated the 18 month benign jump as a good indicator and those that "did not" see small a pop at 18 months had a higher failure rate at 5yr point. Another article on this site pointed out a reading of 0.07 is technically still "undetectable".
Anyway I feel good, still very active, paddle boarding, highly recommended as a easy, gentle full on work out with low body impact and good muscle building all over! also swim and surf.
I have continued to take Theracumin as it stops my pain from rotator cuff injuries completely.
I also have started taking pomi-T, UK double blind study showed dramatic benefits for lowering PSA, don't like tablets so I break them open and sprinkle on my fruit, nut, yogurt breaky, along with vitamin+K2, be sure to take K2 with D.
PSA has seen a slow rise from after radiation treatment of 0.09 to today at 1.7, really hope it goes no higher! 2.0 seems to be the threshold that BC cancer uses to start thinking about recurrence... had an MRI 2 days ago, should help show any obvious changes in Prostate.
Feel great, healthy, lots of exercise (surfing), always trying to remember I am statistically more likely to die from something other than cancer...
PSA continued to slowly climb to 3.5. I sought information.
Oncologist seemed unconcerned and reminded me if it has come back hormone treatment is the primary care as a salvage option after radiation treatment.
Hmm I got proactive, managed to get into a pet scan trial using 18F-DCFPyL tracer. It showed a only small tumor inside the prostate at the top. No other cancer to be seen.
Found a 2nd trial in BC Canada for "focal" HDR Brachytherapy. They insert several needles with radiation pellets attached and leave them in a specific spot for up to 10 seconds! (HDR = high dose radiation), even though I had already had external beam 4 years ago this treatment is unlikely to cause more radiation damage to other organs as it is very "focal". I had two treatments about a month apart 8 months ago. I am happy to report very light side effects and my PSA has dropped from 3.5 to 1.3.
HDR treatment has been used in BC for whole prostate treatment, I was the 1st guinea-pig in BC/Canada to have highly focal HDR to the just a small tumor In the prostate. The combination of the new pet scan imaging and this focal HDR is for me a huge breakthrough and should the cancer return it is possible to just hit it again!
If you think you may need salvage treatment I highly recommend getting a 18F-DCFPyL PET/CT, then look at treatment options fully informed!
Jan 7th 2019 ( 5 years after initial EBRT treatment)
Just under 2 years since my focal HDR treatment (they treated just the tumour site).
PSA has risen from 1.3 to 2.2 (16 mth doubling)
What to do.. As its still localised (mri, bone scan, cat) Salvage surgery has been offered although urinary function and ED are almost certain. Potentially curative was the term surgeon used)
Hormone treatment also a good option with less side affects than surgery.
I am leaning towards any treatment that leaves my body with best quality of life.
Perhaps for now "watch and wait", along with a stricter diet (no dairy, no eggs, low sugar, low salt, very low meat, continue healthy diet + Theracumin, vit D+K, green tea, vit b12, exercise and good sex life which does equal a positive mental outlook), plus add a shopping list of other treatments (berberine, metformin or Barberry Bark, statin, button mushroom powder).
Very impressed with many reports of lifestyle and diet keeping PSA down after cancer has reoccured (ie http://www.yananow.org/display_story.php?id=99)
Long-term plan, don't panic! keep cancer PSA under 10, if over start ADT? hope for new treatments to become available that offer less damage to quality of life.
PSA went to 3.5 in 2018, opted for psma pet scan, it showed local re occurring cancer, the size of a pea, and in seminal duct.s
Had high dose HDR radiatio, needles inserted via ultrasound guided & mri overlay. the radiatis only left in place for seconds amd then withdrawn from body.
no ADT or other treatment since.
since late 2018, stayed on vegan plus fish, low sugar, low saturated fat, low carb diet.
Continued with 2hrs a week of resistance training and activie lifestyle.
PSA rising slowly (18mth douy), now at 5.8 (dec 2021).
considering Alternative supps & re purposed drugs to delay or prevent need for ADT.
Since 2021 I have doubled down on exercise , resistance training 4hrs a week, taken Dukoral vaccine, added corriander, cardamon & cinamon to my diet breakfast & supper. Looking back on my data points (3 mth PSA tests)I noticed in the winter months my PSA always dropped? Which is when i am most consistant with resistance training, so I increased it from 2 hrs to 4hrs, kept a good vegatarian diet, no carbs, no sugars low saturated fats ( no bloody seed oils!). Result was clear Aug 2021 to Oct 2022 my PSA over the 14 months went down ! Thats a teally interesting event considering it had been doubling every 12- 18 mths in past years. Was it the Dukoral or the resistance training? I would say both snd a that the hardest thing about prostate cancer is not reading and understanding the various risk factors but actually making the changes and staying on course. I hope to stay of ADT or other for as long as my PSA stays stable.
From Aug 2021 to Aug 2022 my PSA took a holiday and I enjoyed an entire year where it was stable at PSA of 6.0 or so, now Nov 2023 my PSA has gone up to 12.1, a big number! The doubling time is 22 months from psa 3.2 to psa 12.1, so thats not crazy bad..right?
I am looking at treatment before it climbs higher.
Really need another PSMA PET to see if tumor has grown, spread. Its important to treat the actual cancer, and not simply guess and treat the PSA result. lots of patients can have high or low psa and have very different tumour growth/spread.
Probaly darolutamide + docetaxel + androgen deprivation therapy?
Planning to buy a bigger sailboat and have an adventure.. hopfully thats going to fit in somehow with treatment..
On the good side I have gained muscle mass, dropped back to my 25 year old body, super fit and still surfing! Do make sure to do resistantce traning, it is so beneficial.
Data is very interesting, looking at my initial psa in 2014 at psa 4.5 gleason 4+3 and considering its now 2023, treatment with EBRT and HDR therapy, and then reocurrence, the total over all doubling time of my cancer is 60 months 2014 to 2023. So is it reasonable to consider that with treatment it will be somewhat the same? Gleason score appears to be something that does not radically change, treatment keeps improving, my health and diet keep improving, perhaps if I repeated a 60 month overall doubling time then I estimate at 80 yrs old I would have a PSA 90 and still alive... seems do able to me, keep positive, and remember its a long journey not a short one for most of us.. live well and prosper.