I have been checking my PSA every year for over 15 years. The level had always been between 4.5 - 8. Often times I attributed it to travel or heavy exercise activity when it was closer to 8.
2008 was an extremely stressful year for me and I had a shingles outbreak in October 2008. My PSA went to 13.6. I attributed it to a urinary infection, stress and travel but in retrospect I should have had a biopsy then. By March 2009, my stress level abated a bit, and my PSA went down to 7.7, but then it started to go up again slowly. October 2010 it reached 13.6, February 2011 12.8 and then June 2011 it jumped to 15.6. My doctor referred me to my urologist who told me to get a biopsy saying that it was 'his obligation' to inform me about this. His tone was stern enough that though I had had an unpleasant biopsy experience in 1998 (which had proved negative for cancer), I complied with the encouragement of my wife to get a biopsy done.
July 2011: I had my biopsy and the result was a big shock for us: adenocarcinoma with a Gleason= 4+3=7, clinical stage T1c. Only 7 samples had been taken as I felt almost like fainting during the biopsy and the urologist decided to stop and not get all 12 planned samples. Then proceeded with bone scan, cat scan etc, all were clear, except for some arthritis in the back and a small kidney cyst.
Because of the Gleason which is considered moderately aggressive and because I wanted a drastic solution I opted for radical prostatectomy. Also I am in good health overall with no other major coexisting medical problems and I wanted to nip this in the bud. Though I met with a top open surgery radical prostatectomy doctor, I decided to proceed with another top surgery radical prostatectomy doctor, specializing in the robotic procedure because I was concerned of potential excessive bleeding, especially being that I am no spring chicken.
September 2011: I had the robotic prostatectomy procedure. Stayed 2 nights in hospital, more as an extra precaution. I could have stayed just 1 night. The catheter was removed after a week and I felt relieved and did not have any major problems with incontinence. The shock came when the surgical pathology report said my Gleason was actually a 9=4+5(obviously more aggressive than had been in my biopsy report of Gleason 7)and the stage reported as T3B which is also more advanced than had been on my biopsy report. The good news was that there appeared to be no metastasis and no lymph node involvement and also negative surgical margins. The bad news was that one of the seminal vesicles was involved.
November 2011: My first post-op PSA was 6 weeks after my prostatectomy and came at 1.0 which while it may sound good for a man with a prostate, is not a desirable result for one whose prostate had been removed. My wife took this pretty hard. Two weeks later (ie. 2 months postop) the PSA was 0.93, still not great since it should have been undetectable. Met with surgeon who recommended to start on hormone therapy and do radiation in a month or two. Also met with medical oncologist, radiation specialist who recommended also hormone therapy and a 39 dose of radiation. Need to follow up with a dietician as well for an 'integral' approach.
I decided to just try hormone therapy and got my first dose of a 1-month injection. Will keep you posted.
My big concern as of November 2011 was that I still had detectable PSA two months after prostatectomy and that my Gleason had been 9 based on pathology report. So my wife and I decided to take as 'aggressive' action as available. After I started my monthly Firmagon hormone therapy injections, my PSA went to undetectable.
February 2012 I chose to do 37 session of radiation therapy of my prostate bed in the hopes that if there was any remaining cancer cells (floaters) post-surgery, they would be destroyed, thus achieving local control. Also, based on the studies I have read, radiation is more effective if one weakens the cancer cells with hormone therapy prior/during radiation period. It was tough to decide to do radiation as I was concerned about side effects, especially at my age. Thankfully, though certainly not pleasant, I was ok. Hot flashes from the hormone therapy, fatigue and general sense of depression, high frequency of urination at night.
April 2012 I had my 6th and 'last' Firmagon injection so now I am on vacation from it. My oncologist suggested for me to stop the hormone injections and I happily obliged as my PSA has been 0 since December 2011 and now I will be in active surveillance mode and will monitor my PSA every 3 months. Good wishes to everyone and I will be more than happy to write to anyone who I can help on this journey!
The hot flashes finally subsided a few months after I stopped the Firmagon hormone injections. Monitoring the PSA results every 2-3 months:
July 2012: PSA < 0.01
October 2012: PSA = 0.02
December 2012: PSA = 0.06
March 2013: PSA = 0.044
I am feeling alright overall, hopeful to keep things where they are... I keep moving, walk every day and twice a week I take a stretch class. Have been having some issues with high blood pressure and I am taking medication to keep it under control. Doctor said to keep salt intake low.
I have been checking my PSA regularly:
May 2013: PSA=0.2
June 2013: PSA=0.23
November 2013: PSA=0.45
January 2014: PSA=0.78
I am concerned with the rising trend, especially in light of the fact that I had a prostatectomy (2011), radiation & 6 month-hormone (2012). Spoke to my oncologist who recommended getting back on hormone therapy which I plan to start in February. I feel good overall physically, exercising every week doing yoga and some swimming. Emotionally it is discouraging to have to go back on the hormone treatment because I dread the hot flashes I had gotten beginning of 2012. My wife is very supportive and that helps.
PSA is 0. I am on Firmagon (hormone treatment) now, have hot flashes and tired. Thinking of taking a break from the treatment the way I did before. Turned 80, big milestone. Have some issues with high blood pressure and skipped heart beat, wondering if it's from Firmagon side effect but don't know for sure. Cardiologist put me on Bystolic which is a beta blocker, seems to help a bit. Not as active as before but keeping positive.
June 2015: In September 2014 had finished the second set of Firmagon injections after having taken a hiatus or break from them. September 2014 - mid June 2015 no treatment.
PSA stayed at 0 until February 2015 when it started showing up =0.08
May 2015 PSA = 1.7
June 2015 PSA = 8
It has been 9 months without any treatment but now looking to maybe go back again on hormone therapy or something else. Figuring things out but a bit tough to decide.
After resuming monthly Firmagon following intermittent pause from treatment, my PSA is kept under check at close to 0.
There appear to be some metastatic lesions in my bones. I have lots of hot flashes and I find that I need more naps. Keeping active with light exercises and short walks.
January 2017: My PSA has been steady at 0 and checking it monthly. Still on monthly Firmagon. Hot flashes and fatigue and I have slowed down a bit.
My PSA still 0, continuing on my monthly hormone treatment. Last year had colon surgery (independent of prostate cancer diagnosis) and that was a tough point in road. Last week and now still grappling with bronchitis. I feel weaker and my appetite and taste buds are diminished. My wife is taking care of me and I am staying at home, hoping I will go out once I feel better after this.
After my prostatectomy (7 years ago), radiation therapy (6.5 years ago), hormone treatment with Firmagon (5 + years), my PSA has gone from 0 to 0.07 to 0.15 this past year so far. I did bone scan and CT scan, there have been some metastatic lesions that I have been watching for the last 3 years. I am concerned about the PSA and of course the metastatic presence. I am keeping active at a slow pace and I keep hopeful. My wife is very supportive.
I started Zytiga pills almost 3 months ago because PSA started inching up. Still on monthly Firmagon injection and feeling fatigue and hot flashes. The prednisone taken in conjunction with Zytiga seems to be easing the side effects. PSA is 0.36. Doing light exercise and short walks.
Still on Zytiga and regular hormone Firmagon injections, keeping my PSA under 0.2. Also taking prednisone which is supposed to alleviate some side effects of Zytiga. Had targeted radiation on T12 spot on spine August 2019 and experienced fatigue and fogginess of mind. Keeping active at a slow level and moving forward.
September 2020: Still on monthly Firmagon hormone injection and daily Zytiga pills (coupled with Prednisone), tired in morning, but more energy in the afternoon, appetite is low to moderate, doing very light exercise every day, keeping PSA < 0.06 for the past 8 months ... keeping positive
It has been 10 years since my diagnosis. Over the years, after prostatectomy, prostate bed radiation, stereotactic local radiation on a spine spot, hormone treatment (Firmagon & Zytiga), my PSA is 0.1. I wish it was undetectable but it inched a bit from undetectable to 0.1. I am a bit fatigued but I keep positive.
In the last year my PSA has inched up a bit from undetectable to 0.47 (January 2022) to 0.79 ( March 2022) to 0.59 (April 2022) so I am watchful. I am taking 1 Orgovyx pill a day instead of monthly Firmagon injections. I skipped Zytiga treatment November and December of 2021 because I had some cardiac stents put in and I needed a bit of a break from the fatigue. I am taking Zytiga again, and now I am taking it in the middle of the night which I find more palatable because it ensures it's on an empty stomach and at the same time, I sleep through the main part of the fatigue. I am taking also prednisone which is prescribed for alleviating side effects of Zytiga. I am slower in my walking and sometimes a little unsteady but I do my best to keep moving gently every day. Sending you all good wishes !
February 2023: I have stopped treatment lately as I had some heart issues, pacemaker implanted. My PSA has inched up again. My scan shows some metastatic spots and doctor recommended some targeted stereotactic radiation on spine but I am holding off as not keen on side effects per the past experience. I have slowed down but I make efforts to keep my mobility, with the help of a walker. I will be 89 this year. Wishing courage to all !
February 2024: I have more limited mobility and am using wheelchair now to go out, also have lost some weight. PSA is 89 after having reached as high as 122. Have had 3 Pluvicto sessions of 6 sessions treatment, a radioactive targeted option which while not curative, may help slow the cancer progression. Fatigue and nausea after treatment. My taste buds are not good anymore and eating less. Drinking Ensure and Boost in addition to small meals. My wife is super supportive which helps.
Jonathan's e-mail address is: annamitchell72 AT hotmail.com (replace "AT" with "@")
