I've learned a lot first hand about prostate cancer. Here's what we all should know.
Misconceptions abound. No treatment may be needed beyond active surveillance. And surgery is not necessary.
Back in October of 2021, I wrote that I’d been diagnosed with prostate cancer after a biopsy the month before, noting that I was going to be fine.
I took the opportunity to underscore why everyone with a prostate should get regular PSA blood test screening, beginning at 40 if you’re Black or have prostate cancer in your family, and, for everyone else, beginning at 45, as recommended by the Prostate Cancer Foundation. I discussed how early detection offered me a range of options for this often slow-growing cancer:
Fortunately, it’s localized, and it’s been detected early — so early that I don’t require treatment right now beyond what is called active surveillance, which means monitoring how fast, or how slowly, it grows. If and when I do require further treatment there are options and it is curable.
After consulting with more prostate cancer specialists, however, and after doing a lot of research over the past several months, I actually decided to move on to further treatment. This month I had a minimally-invasive, well-established radiation procedure for lower risk prostate cancer, low-dose rate (LDR) brachytherapy, which has excellent outcomes and few long-term adverse effects.
I’ll explain more about that and why, in my case, it was wise to pursue further treatment.
But first, there are two things I’ve learned which I’d like to share because they challenge misconceptions and point to the lack of education about rapid advancement in research and treatments. I believe fears and misconceptions about treatment have prevented people from getting PSA screening — a simple blood test — or from urging doctors to give them a PSA test if they aren’t including it in routine blood work.
1) In 2022, active surveillance is a standard of care for low risk prostate cancer, and there is often no need to seek any further treatment.
In the past, the medical community deemed that any prostate cancer detected after a biopsy be treated with either surgery or radiation. Even just a few years ago, active surveillance — monitoring indolent, low-grade cancer with further PSA tests, and, if needed, further biopsies over the years — was considered novel. Today it is common practice. One study showed that 55% of those on active surveillance have gone for 20 years without further treatment.
2) In 2022, surgery to remove the prostate — radical prostatectomy — is almost always unnecessary, and is simply a choice.
In years past, radiation options were limited, particularly for more advanced prostate cancer. And it was also believed by many that a prostatectomy was the only way to fully eradicate prostate cancer. But long-term studies now show that radiation therapy has equal or better outcomes. Yet a radical prostatectomy, which also removes surrounding areas, including the seminal vesicles, has greater short-term side effects, and can have greater long term side effects.
It comes down to priorities and quality of life considerations. I don’t want to get sidetracked into this discussion, but I’m linking here to a well-sourced piece by a long-time patient advocate who believes gay men in particular should never have a prostatectomy (except in rare cases). I believe the same may apply to many heterosexual men and transgender women when it comes to quality of life, sexual function and other issues important to them. It’s worth a read by everyone.
My own journey
For me, surgery was something I ruled out fairly quickly after consultations and research. Active surveillance was my first choice.
In my case, however, most of the cancer was slow-growing but a small portion was a bit faster growing. Not to get too technical, but prostate cancer with a Gleason score of 6 (the lowest score) is considered indolent and low risk. Almost all such cases are now monitored by active surveillance. If and when it progresses, people get treatment. But some will never require any further treatment.
A Gleason 7 score is considered intermediate risk, and is broken down into favorable intermediate risk and unfavorable intermediate risk, based on several factors. I fell into the Gleason 7 favorable intermediate risk category. Active surveillance is appropriate for some cases of favorable intermediate risk, and it appeared I was one of them.
But after consulting with more specialists (including getting second opinions on everything, including pathology), the consensus, reflecting my own reading and my discussions with patients and advocates, was that in my case active surveillance wouldn’t be feasible for long, and it would likely only be a matter of months. Even if it went longer, I’d eventually need treatment for sure, so why not do it now?
So, four days into the new year, I took the subway to Memorial Sloan Kettering Cancer Center in New York, a preeminent cancer research and treatment center, where I underwent LDR brachytherapy — which a lot of people know as radioactive seed implants — a minimally invasive out-patient procedure with a success rate of well over 90%.
A candidate for seed implants does have to meet certain criteria in addition to having cancer that is lower risk, localized to the prostate and showing no evidence of spreading elsewhere. It’s not often an option if the prostate is too large, for example, and may not be optimal if an individual has pre-existing problems with urinary function, including retention.
Seed implants have a long history, going back decades, and with studies showing great outcomes and few long-term side effects. The procedure is safe— the radiation is low-dose, does no harm to others, and wears off in a matter of months—and has become much more technologically advanced and refined.
That being said, there is ironically less LDR brachytherapy being done today for prostate cancer. That’s largely because so many more people with lower risk cancer are now on active surveillance, which is a good thing, but also partly because there are now more radiotherapy treatment options to choose from, which is also a good thing.
The not-so-good thing is that some doctors and hospitals aren’t offering seed implants or even raising the treatment option because it requires great skill by experienced practitioners and is reimbursed poorly by insurance companies and is administered in just one procedure (thus less to bill), even as it is actually more cost-effective than other treatments.
So, patients have to be proactive and ask about it — and patients should always get second opinions from doctors about any and all prostate cancer treatments being considered while making decisions. It’s also important to connect with patient advocates and with prostate cancer survivors. I was lucky that so many survivors reached out to me to share their experiences after I discussed my diagnosis on my radio program and here in this newsletter. There are online forums to connect with people who’ve battled prostate cancer or are experiencing it, like HealthUnlocked, where people can ask a lot of questions and share information.
A menu of options
I can’t stress how easy and painless the procedure was, especially as I understandably had a fair amount of anxiety beforehand. I went to the hospital in the late morning and I was prepped and put under general anesthesia. My radiation oncologist, with a team of doctors and nurses, inserted the seeds via needles into my prostate, all guided by ultrasound and a mobile CT scanner. Images are run through a computer program to help guide them in placing each seed in the most optimal places. I had 67 seeds implanted around the small tumor in my prostate.
By mid-afternoon I was up and around, and, after an MRI to confirm seed placement, left the hospital by 4:30 p.m. with my husband. There was no bandage or blood, as there was no cutting or surgery, and, again, no pain.
The major short-term side effect is urinary frequency — for some people, it can even be once per hour, and a few times per night — as the prostate, the urethra and bladder are inflamed. Medication is prescribed to mitigate this, and the effects dissipate in weeks to months. For some this effect is minimal while for others it’s more acute. As with any radiation treatment there are other possible long-term side effects, but I’ve been impressed with the outcomes I’ve seen.
I had other very good options for radiotherapy that are minimally- or non-invasive and have equally excellent outcomes, and it really becomes a matter of choice. Another form of internal radiation therapy, for example, is high-dose rate (HDR) brachytherapy, which, rather than implanting radioactive seeds, involves putting high-dose radioactive sources inside the prostate for a few minutes only, and then removing them. It requires two sessions or more.
There’s also stereotactic body radiotherapy (SBRT), sometimes called CyberKnife, which has condensed exterior beam radiation from nine weeks of daily sessions to five sessions which are a few minutes each. It’s amazing how it targets the prostate precisely and largely spares other organs, allowing for higher doses in a short time. One advantage is that there’s no anesthesia.
For me, however, the one-and-done aspect of LDR brachytherapy was appealing. Others might make a different choice.
Demystifying prostate cancer treatment
I was lucky I caught this early and that, like most prostate cancer, it wasn’t aggressive. In my research and by connecting with people in online forums, however, I’ve learned that even for people with more advanced prostate cancer or for the very small percentage who have an aggressive kind of prostate cancer, there are now very good options regarding radiotherapy, including SBRT in combination with LDR brachytherapy or HDR brachytherapy, and/or in combination with short-term or longer-term androgen-deprivation therapy, otherwise called hormone therapy.
Obviously this has been an education for me, the kind that most people don’t get unless suddenly faced with a cancer diagnosis. That’s truly unfortunate for a couple of reasons.
By keeping information on treatments out of sight and out of mind — whether on the part of each of us because we don’t want to think about cancer, or on the part of a media that doesn’t do its job, or both — I believe less people get screened for cancer because of the fear of what they may find out.
If prostate cancer treatment is demystified, and the ease and low-invasiveness of treatment for cancer that is detected early is explained, more people might feel comfortable screening and realize they have a responsibility to do it.
The second reason is that if people know what the prostate cancer treatment options are, and know the advancements and the relative ease and success rates of many of them, the “C” word will perhaps be less terrifying to hear when there’s a prostate cancer diagnosis.
When I was told by my urologist on the phone about the results of my biopsy I was completely crushed. Two hours later, in his office as he explained how early it was detected, that it was likely confined to the prostate (confirmed later by scans) and went over possible treatments, I felt almost 100 percent better.
If I’d known some of that information before I was diagnosed, the moment itself might not have been as traumatic. So I’m hoping by writing about my experience I can help others not only to understand why screening is important, but to know that, if diagnosed, they have great options for a positive outcome.
This is the second part of my journey discussing prostate cancer, following up on the piece I wrote in which I discussed my diagnosis. You can read that here.
The third part, describing on my progress months after treat, is here.