Thirteen Years

Halloween threw an evil trick at me just ahead of my 13th anniversary of being diagnosed: My PSA nearly doubled, jumping from 0.11 ng/mL to 0.21 ng/mL in just under six months (9 May 2023 – 31 October 2023).

Needless to say, that was not the result I was expecting. I was hoping the salvage radiation and androgen deprivation therapy from the summer of 2022 would have helped put this crap behind me or at least do a better job of controlling it.

What does it mean?

I’m trying hard not to get ahead of myself, but the answer seems pretty obvious: the cancer survived the zapping and is thriving. For me, the fact that it essentially doubled in six months is the biggest concern. If my PSA drifted back up to 0.13 ng/mL, even I would say that I was getting ahead of myself, but it doubling is something else—something more conclusive.

Another factor making me think this is the “real deal” is how rapidly my PSA shot up in the months before the SRT. It went from 0.22 ng/mL on 14 October 2021 to 0.36 ng/mL six months later on 18 April 2022.

From my lay person perspective, this is significant because it means that the window on curative options is closing (closed?) and, going forward, we’ll be more focused on management options that try to slow the inevitable growth of the cancer.

It’s not all doom-and-gloom, though. There are plenty of prostate cancer patients who have been on systemic treatments (hormone therapy) for a decade or longer, keeping their cancer in check. The problem is the side effects of the treatment can substantially impact quality of life, and there’s the chance that the cancer becomes resistant to the hormone therapy, much in the same way that bacteria become resistant to antibiotics.

I have an appointment next week on 9 November with my primary care physician, and with the urologist on 14 December, and it will be interesting to hear each of their perspectives. I emailed the radiation oncologist and get his take, too, while also asking for a refund.

What’s Next?

Again, from my limited knowledge and perspective gained by dealing with this for thirteen years, I suspect the doctors will tell me:

  • To re-test the PSA in one to three months to confirm the upward trend and doubling time.
  • If it continues to increase, perhaps schedule another PSMA PET scan to see if we can locate where it’s at or how far it’s spread, if at all.
  • If we can locate it and it’s a single lesion or two, perhaps another round of radiation may be in order to target those specific lesions.
  • If we can’t locate it, I suspect systemic approaches will be used. This would most likely mean extended hormone therapy. It could possibly mean chemotherapy, but I suspect that would be delayed until later.
  • Or it could be a combination of any or all of the above options.

All of those options come with potentially significant impacts on quality of life.

Final Thoughts

This was a crappy end to an equally crappy month.

On Friday, 13 October (lucky day), I found myself in the Emergency Room with symptoms indicating a cardiac event might be happening. Fortunately, there was no sign of heart attack or stroke. The symptoms puzzled the ER doctor, so he prescribed that I wear a Zio patch continuous heart rhythm monitor for two weeks to see if it catches any irregularities. That comes off on Monday, 6 November and will be sent off for analysis.

The kicker, though, was that I had scheduled an 18-day bucket list trip to New Zealand departing the following Monday, 16 October. I still had some minor symptoms on Saturday morning, so I decided the best and safest course of action was to cancel the trip. (Thankfully, I booked a mostly refundable ticket, and had travel insurance for the remainder.) Disappointing, to say the least.

Perhaps it was meant to be, because an expensive plumbing issue arose at my house that would have needed to have been addressed while I was away.

And now, to put the icing on my October crap cake, my PSA doubles. Ugh.

I won’t lie. When I saw the results online, the news hit hard. I was hoping that it would have continued its downward trend, but I also knew that it could go up, too. I just wasn’t expecting it to go up that much so soon. I would have been happy if the salvage radiation had my PSA hanging out at 0.11 ng/mL for the next decade or so. But I guess that’s not meant to be.

To be transparent, I did question for a moment whether holding off on SRT as long as I did was the wrong decision, but I quickly cast that thought aside. I made that decision with the information I had at the time, and with a desire to avoid treatment side effects for as long as I could. Whether it was right or wrong, no one can say. I’m here now and will have to deal with the present facts. No amount of second-guessing will ever change that, so it’s not worth the effort or energy to do so.

What I’m regretting more at the moment, is cancelling the trip to New Zealand. If a PSA test in December or January shows continued increases in my PSA, I’m guessing that we’d start hormone therapy at the very least. Traveling great distances for a long period while on hormone therapy may not make for the best experience. We’ll see. (Aside from the fatigue and heightened emotions, I seem to have tolerated the Eligard fairly well compared to many.)

Lastly, I’m going to have to do more research on what my options will be and what the current treatment protocols are for someone in my situation.

My summer and early autumn hiatus away from posting on this blog—a refreshing break from cancer—appears to be ending as I start what is likely the next chapter in this story. Stay tuned for more.

Header image: Imperial Beach Pier at sunrise; Imperial Beach, California

16 thoughts on “Thirteen Years

  1. Rick's avatar Rick

    I’m sorry to hear that.

    I’ve heard from the Prostate cancer research institute (in Culver City) that has a very informative channel on YouTube, that with regard to your heart issue,,,,they suggest satin drugs wether you need them or not while receiving treatment for prostate cancer. Positive reports (help) with regards to ones heart and prostate cancer.

    I think this was discussed in the day one and day two—-active surveillance advanced treatment question and answer videos—-from about a month ago. They are long though..

    Blessings,

    Rick

    Liked by 1 person

  2. Ken G.'s avatar Ken G.

    Well Dan, all I can think of to say, is , that sucks. I’ve been following your story closely as you may recall, and had high hopes that you were done.

    FWIW, from all that I’ve read, doubling time at these low levels don’t mean much. Also, I think most urologists, once you get past the surgery point, aren’t as up to date as Oncologists, so I’m guessing your Rad Onc meeting will be more productive. Just a wild guess, he’ll want a PSMA PET Scan. And you’ll probably want to meet with a good Medical Oncologist. there’s always the possibility that this was a fluke and a retest will show a better result.Hoping that for you.

    I’m thankful that you cast aside temptations to second guess. That would be totally unproductive and also unfair to yourself.

    Good luck

    Ken

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  3. jamesvancouverisland's avatar jamesvancouverisland

    Keep the faith , there are many options available . you may have a location that needs to be zapped (?) , but remember overall your numbers are very low despite the shock of it being up. I had salvage radiation about a year ago ( 22 sessions no Chemo or ADT) . This is after the surgery too ! I fluctuate between 0.14 and 0.11 right now . I feel good and hike with the dogs everyday. At 60 I feel fortunate. Have it in the family. Im playing the waiting game too … but in the meantime , I enjoy every moment of life , travel , the wife, the dogs and friends . You will live a long long time …. thanks for sharing your story my friend. James – Vancouver Island , BC , Canada

    Like

    1. Thanks, James. Yeah, I’d be happy if my PSA was bouncing around in the same range as yours. I’d say the radiation did the trick and life goes on. This is just a different twist that will take a little time to confirm and address. All the best to you and the rest of the guys in Vancouver!

      Like

  4. Abhishek's avatar Abhishek

    Are you taking Abiraterone (or ask Oncologist about it)? It was in news in the UK. They have been prescribing it in India as well (my Dad taking it since around 3 yrs). I think its one of those medicines that need to be taken indefinitely.

    Uk news:

    https://www.bbc.co.uk/news/health-67065504.amp

    I hope retest shows low readings , but could be better to start this medicine if Oncologist agrees.

    Like

    1. Hi Abhishek,

      Thanks for the link. No, I’m not on any treatments at the moment. I suspect that, if the next PSA shows another increase, we’ll have that discussion. I believe Abiraterone is pretty common here, too.

      Like

  5. Louise & Ron's avatar Louise & Ron

    Hi Dan, from Ron’s wife. Ron’s treatment has always been at MSK and he is in a similar place as you. He had a radical prostatectomy 5 years ago and his numbers started to creep 9 months after surgery. They advised to wait longer before he started Salvage radiation. They did the PET scan and could not located the cancer. About a year and-1/2 after surgery he started Salvage radiation 40 treatments to the prostate bed. His numbers went down for about a 18 months. Then the PSA began to rise again. Right now it’s been staying steady at .14. MSK Radiation oncologist and the oncologist are watching him with no treatment. It’s scary to have this lurking in the back of your mind. But Ron lives his life and feels blessed as a five year survivor of Prostate Cancer. Keep the faith Dan and our prayers are with you.

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    1. Thanks Louise! I appreciate it much.

      I’m glad that Ron has been able to just monitor his status for now without additional treatment, but is ready to move forward if he needs to.

      Wishing you all the best!

      Dan

      Like

  6. Jeff Greig's avatar Jeff Greig

    Hey Dan,

    Really sorry to hear this news of an uptick in your PSA and so soon after your radiation last year. I am sure that this is a hard pill to swallow, and certainly very stressful. A double whammy too when you layer on the cardiac issue.

    As you suggested, decision regret is not productive, and your decision to delay SBRT initially was an informed decision that made sense to you at the time based on all the info you had. And if anyone does his homework well, it certainly is you! And you will continue to research, keep yourself informed, and tackle this with all the vigour and determination that you have always demonstrated through your journey, even when you were down.

    You are an inspiration to us all. Take care, and we’re thinking of you up here in Canada.

    Jeff

    Like

    1. Thanks, Jeff! It will be interesting to see what the next PSA test brings because one data point doesn’t make a trend.

      I hope that you and the guys in Vancouver are doing well. Please give them my regards.

      Dan

      Like

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