Asymptomatic at diagnosis following kidney stone and required PSA (11.%) during followup

Grade group 5, Gleason 4+5 involving 95% of total tissue 12.12.18; Staged T3, N1, MO following 3Tesla MRI scan

Surgery deemed not viable as cancer was external to capsule

Started Lupron 12/31/18, Zytiga 2/18, and IMRT 3/14/18 (45 sessions for a total of 81 GY)

Hot flushes, and overheating following exercise. Severe muscle cramps and tendon soreness after moderate exercise, so I reduced weights and exercise to 3x per week.No urinary or bowel problems following radiation, though nocturia persists along with urgency for both bladder and bowel.

Lupron injections IM every three months with labs; Oncologist visits every 6 months; Zytiga 1000 mg. daily with 5 mg. Prednisone

PSA consistently <.1 since beginning Zytiga

Dr. took me off Zytiga and Prednisone yesterday, after 2 years, but will continue Lupron for one more year. He considers me in remission, which practically means cancer cells are hypernating. I will continue labs every three months and course of treatment will be adjusted as indicated by PSA velocity.

Aside for muscle cramps, I've been feeling well except for the following seemingly unrelated health conditions in the last year:

*Afib requiring hospitalization for 4 days. Problem resolved

*5 mos. after afib event, pleurisy. Resolved in one week with Tylenol for symptom relief.

*Epiretinal membrane (occurs in 10% of adults over 65) requiring surgery. Condition exacerbated cataract, which also required surgery.

*Passed a small kidney stone

Coupled with Covid lockdown, 2020 wasn't a good year healthwise. Still grateful.

As with most, my life runs on a 3 month cycle. I give less thought to PSA until labs approach.

Couldn't pin doctor down on course of treatment or prognosis. In fact, I've gotten more useful information on possibilities and probabilities from clinical trials, journal articles, and particularly this site.

Family health history and genetic testing was done 5/19. Family history of cancer is sporadic and not suggestive of familial or hereditary link. The 14 panel Amber testing identified one genetic mutation of uncertain significance in BRCA 2 gene.The conclusion is that a germ line mutation with a causal or probable link to prostate cancer is not present. BRCA 2 mutations suggest the possible efficacy of PDL1 checkpoint inhibitors. Genetic testing of cancer cells may be done at a later time.

Genetic test should read "Ambrose."

Feruary 24,2021

Discontinued Zytiga and prednisone, but will continue Lupron for one year. Last two Lupron shots were subcutaneous rather than intramuscular. Both resulted in muscle and joint pain more severe and of longer duration than shots over the last two years. Not sure of the reason.

Had a singular episode of afib about two weeks ago. Now wearing heart monitor. There is no apparent connection to cancer or related medications.

A bone scan reveals loss of bone density (-6.5% spine; -11.2% hips), but still in normal range after two years of Lupron. The last two rounds of shots given at regular 3-month intervals have res in more severe muscle pain/cramping. The location varies from week to week, sometimes in upper hamstrings and lower flutes, and sometimes in scapul. Tylenol relieves symptoms. Curiously, I even developed a severe cramp in left jaw muscle, with noticeable swelling and palpable muscle tightening. Cramps have persisted over the 3-month course of each shot for nearly half the shot interval, unlike the first year of shots, when cramps lasted only about two weeks. They do effect my ability/willingness to exercise. Still, Lupron beats the alternative.

Had symptoms of radiation proctitis and radiation cystitis. The former was a hemorrhoid; the latter required a flush after which there was no gross hemAthena.

Had symptoms of radiation proctitis and radiation cystitis. The former was a hemorrhoid; the latter required a flush after which there was no gross hemAthena.

Zytiga & prednisone were discontinued last spring after two years. Lupron shots at three month intervals were given while also taking Zytiga. Lupron sho contin for about three years, and were discontinued after my last shot inOctober, 2021. My labs in Januar, 2022 showed undetectable PSA. No further treatment is planned for now, though labs will continue at three month intervals. I am, independent of my oncologist, investigating radio ligand therapy at the University of Minnesota, where they have just begun PSMA scanning. Lutetium177 PSMA 617 treatment has not yet begun, but is expected within the next year. My investigation is only to consider alternatives as I'm not yet mCRPC.

Zytiga & prednisone were discontinued last spring after two years. Lupron shots at three month intervals were given while also taking Zytiga. Lupron sho contin for about three years, and were discontinued after my last shot inOctober, 2021. My labs in Januar, 2022 showed undetectable PSA. No further treatment is planned for now, though labs will continue at three month intervals. I am, independent of my oncologist, investigating radio ligand therapy at the University of Minnesota, where they have just begun PSMA scanning. Lutetium177 PSMA 617 treatment has not yet begun, but is expected within the next year. My investigation is only to consider alternatives as I'm not yet mCRPC.

December 18, 2022 marked four years since diagnosis. I had overlapping Lupron and Zytiga, 3years of the former and 2 years of the latter. Shortly after these started, I had 45 days of EBRT. Since treatment began, I've been <.1. Studies show that 50% of men like me at stage IV and Gleason 9 have shown biochemical resistance between years 4 and 5. I test again in June, and count my blessings for feeling fine.

57 months after diagnosis and 3 years after culmination of treatment ( combined androgen blockade with 45 days radiation) I remain <.1 PSA, but have had a second incident of gross hematuria. A urine FISH test will be done to check for evidence of secondary bladder cancer, and cystoscopy if indicated. Otherwise, feeling well.

Test PSA again in January. Had negative FISH test following incident of gross hematuria in October. 1-3% of PCa patients radiated develop sec bladder cancer. Radiation cystitis is more common. A second smaller inci of gross hematuria occurred in November. A urine cytology test was done, and was negative. Radiation cystitis and/or sec bladder cancer can occur years after radiation treatment is completed.

Having had 9 weeks of IMRT for a total of 81GY, radiat cystitis was not unexpected. A gross hematuria event occurred at about 26 months after end of radiation therapy. I was scoped. No bladder cancer was found. At 58,59,and 60 months post treatment, minor bleeding was present in urine. Scoping was attempted, but strictures prevented co of procedure. A urothrotemy and dilation are scheduled to check again for bladder cancer. Strictures are a known effect of high dose radiation, and though very infrequent, so too bladder cancer. Today's labs were <.1 PSA, a level held from start of treatment to month 60.

Strictures prevented cystoscopy so Optilume balloon dilation was done 1/24. Scoping of bladder will be done after urethra heals. Secondary bladder cancer from radiation is reported 1-3% of cases. Strictures are not uncommon after high dose radiation, in my case 9 weeks at 81 gy total. High dose radiation is shown to extend life expectancy over < 70 gy, according to some studies.

My oncologist recommended 6 month lab intervals. I insisted on 3 months to stay on top of PSA. Other than knowing I have a hibernating cancer, I feel fine, enjoy life and have no significant impairment of li quality. I see my oncologist again in 3 months, at the beginning of the 7th year since diagnosis.

Touchdown's e-mail address is: g_hays AT comcast.net (replace "AT" with "@")