It was eight years ago today that I learned that I had prostate cancer. I had no idea then what would transpire in the days and weeks ahead, and I certainly had no idea that I’d still be dealing with it—and writing about it—eight years later.
You’ve heard me say multiple times that, once you introduce the word cancer into your vocabulary, it never goes away, even if the disease does. There will always be that little cloud called “fear of recurrence” that will follow you around for the rest of your days.
You’ve also seen me throw around the phrase cancer-free with each successive undetectable post-surgery PSA test. It’s hard not to. With each undetectable test result over time, you become more confident that you have this beat. You get lulled into a sense of routine and PSA tests become less scary. But because cancer is so insidious, there’s a danger in using words like cancer-free and cured.
My first indication of biochemical recurrence 54 months after surgery was an utterly unexpected slap upside the head. “Not so fast, fool!”
Ever since then, I’ve become a big fan of NED—No Evidence of Disease—as a better descriptor of how successful a treatment option has been because it accounts for that little recurrence cloud. Saying cancer-free or cure implies a finality. You’re done. It’s behind you. A decade later, you may find out that no, in fact, you’re not done with cancer.
Some may say that’s a rather dismal outlook on things and that we need to be optimistic. Perhaps. I prefer to be more realistic, obviously as a result of my own recurrence experience. And, just because I had recurrence, it doesn’t mean that others will as well. You may live the rest of your days with no evidence of disease and, if you do, more power to you.
There is good news. It’s eight years later and I’m still here, still pretty much fully functioning, and still writing.
After eight years, I’ve learned:
- Be optimistic but understand that, with cancer, there are no guarantees.
- Research, research, and research some more, but step away and take time for your mental health.
- We may think that we’re fighting a battle, but the reality is that the cancer is in control and we’re simply reacting to the next treatment or test result.
My next PSA test will be on 6 December 2018 if all goes to plan. Will it remain stable at 0.11 ng/ml, or will it return to an upward movement? Stay tuned.
Work life and my travels over the last three months or so have been so busy that I haven’t thought, read, or researched about prostate cancer much at all. It’s been a pleasant break. But the one thing that has been lingering in the back of my mind is the trial of 68Ga-PSMA-11 PET/CT Molecular Imaging for Prostate Cancer Salvage Radiotherapy Planning [PSMA-SRT] at the University of California Los Angeles (UCLA).
I’m not sure that I would want to enroll in the full-blown trial itself, but I would like to learn whether or not I could get the scan outside of the trial, even if it’s at my own expense. I’d really like to know that we’re zapping where the cancer is located instead of blindly, based on statistics, if I do choose salvage radiation therapy. It’s something I’ll discuss with the urologist on 18 December 2018.
Dan's Journey through Prostate Cancer 
Great update today Dan. I find myself agreeing with every point you have made. “No Evidence of Disease” is a phrase I will use in future because it allows for that nagging doubt which you identify and which I can relate to. Like you, I am very enthusiastic about the PSMA approaches and it is a very elegant approach in that it can combine both diagnostics and therapeutics. The approach seems to be still in in the trial mode although Germany and Australia appear to be at the forefront in using the various PSMA ligands. I read recently that the large Swiss company Novartis has bought out a company that has expertise in that area and I hope that their size, reach and resources will bring products to market soon. I am a little surprised at your reluctance to join in the trial you refer to. What is there to lose?
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Hi Charles,
Thanks. My reluctance to participate in the trial stems more from my reluctance to start salvage radiation therapy. Even though the risks of long-term side effects from SRT are small, they are real and could have a varying degree of impact on daily quality of life. The other factor is that, depending on which study you look at, there’s a 40%-70% chance that there will be NED 5-6 years after completing SRT. So I’m not sure that I want to add additional side effects on top of the ones that I already have from surgery if there’s such a low success rate, especially given my exceptionally long PSA doubling time.
The study’s eligibility requirements state that “Planned SRT for recurrence” is one of the inclusion criteria. I’m not quite ready to make that call yet.
My December PSA test results will give another data point on which I can move in one direction or another when it comes to the next step.
Thanks again!
Dan
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Hi Dan,
I didn’t realise that the study required you to undertake SRT. Now I understand your reluctance.
best regards
Charles
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Hi Dan, I also recently passed the eight year milestone. Having been told several times that I would not make it this far it was a nice outcome. The next waypoint is ten years and then we will see where we go.
You sound calmer and it is good to hear that you had a break (sort of) from the cancer treadmill. I know a man who had prostate cancer surgery some thirty years ago. He will soon turn ninety. He urges me to keep believing in a successful result. Staying positive, whilst hard sometimes, does help. Hoping for good news for you soon. Cheers, Phil
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Hi Phil. Congrats on your 8-year milestone! What do doctors know, right??
I am calmer about this whole thing right now, and that’s a good thing. Earlier this year, this was eating me up, so stepping off the treadmill was necessary.
One of the things that I’ve come to terms with is that I can *live* with cancer while still keeping an eye on it. Kind of liberating.
All the best to you!
Dan
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I think you’re lessons learned are dead on.
Not to be a Debbie Downer, but you may not be able to get the scan on your own money. At least with the drugs you often have to be in a trial or insurance approved. If you can, I say go for it
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Thanks, Jim. You’re not being a Debbie Downer. It’s something that I recognize and we won’t know the answer until we ask the question.
I hope that you’re doing as well as you can under your current circumstances.
Dan
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My spirits are still good thanks in large part to my wife and how competent the hospital staff comes across. Still no real change, just hoping for minimal nerve damage.
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That’s good that you’re keeping up your spirits, and I’ll be hoping that any damage is minimal and you can get out of there soon. (No matter how caring the staff can be, it’s still a hospital and not always a pleasant place to be!)
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Dan, good luck on the 6th. Glad you seem to have it very much together in your head.
I started ADT in August, and SRT in September, tomorrow starts my last week of SRT. I was told by my RO, Zelefsky, at MSKCC, that based on my pathology, and the low velocity of PSA rise, he feels my chance of success is high, like 80%. I pray he is right. I mention this because my pathology is same as yours. You also had a longer time to PSA rise, mine started rising at 2 years, and I was 3 years an 8 months out of surgery when I started salvage treatment with a PSA of .08. So you have that in your favor.
Here’s hoping your PSA remains stable.
Ken
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Hi Dan!
Thanks for this forum which I have been following for over a year now.
2 years after surgery my PSA rose to .1, then doubled to .2 six mos. later— so I had recurrence of prostate cancer. My RO told me that I should undergo radiation soon because my chances for a cure would half if my PSA rose to .4. Apparently your PSA took longer to rise and at a much slower rate—that’s good!
I had an Axumin (nuclear isotope) scan which is suppose to be state of the art and it found cancer (1x.5 cm) in my fossa and 2 lymph glands. This discovery convinced me to go ahead w radiation ASAP. I was wondering if this Axumin scan, approved and paid for by Medicare, was similar to the imaging scan being developed at UCLA?
I also wanted to give you a heads up in case you do start RT. There is a “temporary spacer” that many RO’s inject between the prostate bed/fossa and the rectum to prevent the rectum from being burned during radiation. This is a good thing. However, medicare only covers the cost ($4-6k) for primary care patients, NOT for recurrent cancer patients. I have formally petitioned Medicare to reconsider this unfair policy since recurrent patients, tho they no longer have a prostate gland, still need to protect their rectum. Indeed, the fossa is even closer to the rectum than the prostate was. I hope this unfair policy changes soon.
Take care,
Wayne Forte
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Yikes, I wish I had known about the spacer before I did radiation and hormone therapy last winter. I also didn’t know that medicare considered recurrent cancer patients “throwaways”! I am not on medicare as my primary since my wife still works, but still, I hope it doesn’t come back a third time!
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Hi – I guess that I like saying that my cancer is in remission. Mine came creeping back maybe around 4 years 2 months after the initial surgery. The first thought was instrument error due to new equipment. But no, so I ended up doing the old salvage radiation and hormone therapy all through the holiday season last winter. I am in pretty good shape, but I did take a nap almost every day.
More to the point is that I literally have some thoughts about it now almost every day and get a bit more tense before I go in for another PSA. I think that until it came back I really didn’t think about it too much other than the lead up weeks before the next PSA test. But once it came back and then went into remission again or is non-detectible, it really is more up front in my consciousness. I definitely have a “glass is half-full” attitude, but the options for a third time around are not all that pretty!
I’ll keep my fingers crossed for you and you do the same for me! It may not help but is definitely better than nothing!
Clark
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Hi Dan, have read through your blog and its been really informative in many ways including medical and personal perspectives. One of the key themes is that of the underlying uncertainty and that it can be a roller coaster of a ride. I would also say its supportive and gives hope to the PC community out there. I’m having my own Robotic RP on the 7th Dec in the UK, so your blog has been really useful.
Many thanks
Mike
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