Prostate Cancer: 1-year later

I was treated for prostate cancer 1 year ago. I was diagnosed the day of my oldest child’s high school graduation. The doctor told me I had cancer, drew a picture of a penis, and listed a few options. My brain seized up as he rattled on about a balloon-assisted erection. He asked if I had any questions. I said, “No. I have to go to my daughter’s graduation.” And I left.

This year, a few friends have asked for my advice after they were diagnosed with prostate cancer. They say my advice has been helpful. So, I figured I’d write it up, in case it might help anyone else.

This post discusses prostate cancer that has not metastasized beyond the prostate. That is a different issue with different options.

If you read on, buckle up. The prostate gland surrounds the urethra and is a key part of the male sexual reproductive system. So, candid talk about prostate cancer treatment is a talk about urination, erections, and ejaculation. Whatever treatment modality you pick, you’re going to be cured of your cancer. If it’s still confined to your prostate, you caught it early. Medical science will take care of the cancer. The thing you need to be concerned about is how the various treatment modalities will affect your ability to pee and have sex.

Here are my three take-home messages, which I will explain below: (1) prostate removal is the worst option, (2) if you do have it removed, insist on nerve-sparring robotic surgery, and (3) the best option is low-level brachytherapy. But, other men will disagree. Hear what they have to say. I hope they will comment below. If a particularly good spokesperson emerges for one of the other treatment modalities, I’ll happily provide space on this blog for that counterargument. You need to weigh your options. Unless you have a high Gleason score (which rates the aggressiveness of the cancer), your doctor likely has told you that you have time to make a researched decision.

Some of the more common options are:

OPTION 1 – ACTIVE SURVEILLANCE

The prostate gland is a cancer magnet. It attracts cancer too easily, but it also tends to hold the cancer for quite a while before it spreads to the rest of the body. Therefore, depending on the aggressiveness of the cancer and the age of the man, it might make sense to just watch things for a while. An advantage of this strategy, of course, is that you don’ t have to worry about treatment side effects. The disadvantage, of course, is that the cancer will continue to spread.

My cancer was pervasive (present in 8 of 12 biopsy samples), but not terribly aggressive (a Gleason score of 6). Because I was just 47, I figured it likely would present a big problem too early in my life, if I didn’t treat it. If I had been significantly older, I probably wouldn’t have treated it, reasoning that something else would kill me first. By the way, I took 3 months after diagnosis to make my treatment decision.

OPTION 2 – PROSTATE REMOVAL

One way to remove prostate cancer is to remove the entire prostate. I’ve talked with lots of men who wish they wouldn’t have allowed a doctor to remove their prostate. (And, to present a fair picture, I’ll say that I also talk with men who do not regret their decision to have their prostate removed. But, I haven’t talked with any men who regret brachytherapy. Maybe that’s just an anomaly of my sample size.). The men who regret the decision to remove the prostate say they did not do adequate research and that, after later comparing notes with men who have undergone radiation therapy, they would not have their prostate removed if they could do it over. Men who have their prostate removed seem to have more problems peeing and having sex than men who treat their cancer with radiation.

Those stories are a big reason I am writing this. Men: think twice before you have your prostate removed. And—the one bit of emphatic advice I will give you—don’t even think about having your prostate removed by a doctor who doesn’t use the newest nerve-sparing robotic techniques and equipment. Doctors who still just rip it out are harming their patients and should be tarred, feathered, and banned from practicing medicine.

The nerve-sparing robotic techniques and equipment achieve better results, but my opinion is that prostate removal is not necessary in many, many cases and that prostate removal causes the most severe side effects. Incontinence and an inability to achieve a functional erection seem to be a bigger problem with surgical patients than radiation patients. And, FYI, even with a perfect outcome with prostate removal, you will no longer ejaculate. You’ll climax, but it will be dry. (I include these NSFW details, because I had talked with a few doctors before a cancer patient shared this bit of WTF info with me). Even with that, some men have told me that sex still feels just as good. Others have said it is a much different sport. Again, you should seek out some men who’ve gone this route, and ask them.

OPTION 3 – EXTERNAL-BEAM RADIATION

Other than removing the prostate, the cancer can be eradicated by irradiating the prostate. That is accomplished by an external source of radiation or an implanted internal source. The biggest problem with external-beam radiation is that innocent tissue (i.e., hip bone, bladder, colon) also gets irradiated. Though proton-beam radiation might cause less collateral damage to surrounding tissue than photon-beam radiation (because the proton beam travels shorter distances and doesn’t irradiate as much innocent tissue beyond the prostate), the beam still irradiates everything on its way to the prostate. Also, external-beam radiation treatments take weeks of hospital visits to perform.

I especially hope that one of the Proton beam “balloon brothers” will take me up on my offer to advocate that treatment modality. They are extremely passionate advocates for that modality, and I have not directly heard any negative stories. My decision against proton beam was based on the idea that (1) internal radiation would cover the entire prostate just as well and (2) less innocent tissue would be affected. That was more than enough reason for me. But, I liked the added bonus that my treatment took 1 day, instead of several weeks.

OPTION 4 – BRACHYTHERAPY

In brachytherapy, tiny radioactive seeds, or rods, are inserted into the prostate via needles in the perineum. In low-dose brachytherapy (like I got), the seeds stay in forever (111 seeds inserted with 23 needles, in my case). The radioactivity of the seeds decreases over time. In high-dose brachytherapy, the seeds irradiate a part of the prostate more quickly. Then, the seeds are removed, and other seeds are placed in another part of the prostate. This modality typically involves 3 surgical procedures. I don’t think the outcomes are better with high-dose treatment. I just think it involves 3 difficult, but medically-lucrative, procedures.

In the literature and in my conversations, incontinence is extremely rare with brachytherapy. I never had an issue with that, but for the first 3 months after surgery, I had a rough time peeing much at all. So, my bladder was full most of the time, and I had to pee dozens of times every day and night. Fun! Flomax improved things. And, now, I don’t have any problems, if I take Flomax once a day. But, if I forget to take it, I’m back to the full-bladder fun and games. It’s not bad at all, but I don’t like to take medicine. Now that I’m one-year post procedure, the urologist will get more involved, and will see if this can be addressed without meds. I’ll keep you posted. (Mark your calendars; something to look forward to!). (2 1/2 years later: nope. Still on Flomax).

Sexual function seems to be superior with brachytherapy. Nerves remain intact, and important surrounding tissue remains healthy.

The medical profession really needs to step up and do some serious research and report findings on the sexual function effects of the different procedures. Because, again, that’s the ballgame. All the procedures will cure the cancer. The issue is what else they will do the patient.

The dearth of information makes it appear like the medical profession is more worried about offending fellow practitioners than adequately informing patients. That being the case, the professionals and organizations that profit from each treatment modality are free to claim what they want with no official to toss a flag. And, because the profession throws all the data together and won’t say that some options are worse than others, the literature paints an unreasonably grim picture for patients and does not help point them to superior procedures.

If the profession would more directly research and report findings, my limited research, conversations and experience suggest that true information might go something like this. If you have your prostate removed, you run a higher risk that you’ll end up wearing a diaper or pad and having crummy sex. If you have it removed without sparing the nerves, crummy sex is your best hope. If you treat your prostate with radiation, given the modern techniques of minimizing damage to innocent tissue, you’ll probably be okay. If you treat with brachytherapy, chances are, you’ll be fine.

Ask your doctor about a cancer panel, where different specialists review your case and offer opinions. Then, one-by-one, the specialists will share their advice and opinions.

Before my panel, I had been considering proton-beam radiation in Houston. My panel’s recommendation was removal, mainly because I’m young, and they suggested I definitively have the prostate removed, to prevent future problems. But, contrary to my previous determination, and contrary to the panel’s majority recommendation, I really hit it off with the radiation oncologist (Dr. Jeff Lee at Intermountain Medical Center in Salt Lake City, Utah). After hearing his reasoning (and that of the other specialists), I went with the low-dose brachytherapy.

One-year post procedure, I’d say that my experience with prostate cancer wasn’t a very big deal. The 3 months of running from bathroom to bathroom was a drag. (That’s much longer than the typical brachytherapy patient). But, 3 months isn’t really very long. The procedure itself was easy and not very painful. And right now—other than taking the Flomax everyday—nothing has changed for me. (I’m relatively young for a prostate cancer patient. That helps.).

Cancer is a huge, devastating deal for lots of people. By no means do I intend to minimize cancer or the journey of those who have battled it so courageously. I respect them immensely. And the toll that cancer takes is simply horrific. But, to add to the strong stories of cancer victims and survivors, I do think it is important for people who are diagnosed with prostate cancer to hear a prostate cancer survivor honestly say that it really wasn’t a big deal. It was stressful on my family, and it took up a lot of our time and attention. But, added to the very real litany of warnings and possible bad outcomes, I wish I would have read someone say that it was a walk in the park. Because it was for me, and that too is a possible outcome.

 

Our discussion

  1. DSM said

    Steve, as usual you’re candid. Your honesty is what people need. Good for you. And we’re so grateful for the present outcome!

  2. Darron Collins said

    Hello Steve,

    Just read this tonight. I was very glad to read of your recovery for you and your family. Hope to get to see you sometime. I still follow you and from time to time. Come visit me in DFW sometime.

    All the best,
    Darron

  3. Stella said

    The internet is amazing. I started out looking for the PBS documentary schedule for my local station and found instead the Design Mom blog of Gabrielle Blair. One of her prior blogs caught my attention…Family Pride 2/27/09. She indicated your blog and so I arrived here. I wanted to comment as an RN, how much your openness with your experience will be helpful to your readers. I plan to follow your blog. Keep up the good work. Thank you. Stella

  4. manipalhospital said

    These days people go for robotic surgery for safe and clear there problems….Robotic Assisted Surgery is a treatment procedure covered under the surgical oncology specialty, one of the specialties in oncology. Robotic cancer surgery in India has gained impulse due to the growing need for the application of advanced treatment techniques in the cancer field for the achievement of fast, precise, and error-free treatment results and health betterment of patients.

Post a Comment

This is just a formality to keep robots and trolls from spoiling our fun. I never share email addresses. Both your name and email are required to publish a reply. Thanks for understanding.

Posted in Uncategorized
  • Twitter