Photons on the Prostate - Three Things I Wish I'd Known

Full Disclosure

Despite what you read in this blog, I believe the choice to undergo hypofractionated radiotherapy as my treatment option for malignant adenocarcinoma of the prostate gland (prostate cancer) was the right choice.

After the ordeal of a prostate cancer diagnosis, gruelling radiotherapy, and years of dealing with lingering side effects, you would think I am done with reading up on issues around prostate gland health.

Now, I am glad to say it was caught early. I believe I received as good care and support as could be given by advisory and medical teams, and I am convinced that I chose the best medical outcome for my situation.

3 Hidden Problems With Radiation Treatment for Prostate Cancer
© The Prostate Clinic

Unsolicited Advice and Misinformation

In the same vein, I am usually offered tips, hints, and advice about prostate health; mostly information shared on social media, none peer-reviewed by experts in either urology or oncology to prove their efficacy. The impressions are mostly anecdotal.

My father, for instance, has mostly been swindled or scammed by snake oil salesmen offering miracle potions to treat his prostate problems that medical science has been at pains to prove he ever had. We are left humouring him when it might be prudent to sternly upbraid him. He is educated and had a high-profile professional life; he should know better.

The Prostate Clinic Revelations

Recently, I have been following The Prostate Clinic, a YouTube channel hosted by Dr Charles Chabert, a urologist in Queensland, Australia, and it has taken a few days to properly digest what he had to say.

In July 2024, I met with consultants in surgery and radiotherapy for prostate cancer. Later, I spoke to a support worker at Prostate Cancer UK who opined I should opt for Active Surveillance or Watchful Waiting over the active treatment suggested at diagnosis. Even after reading up on extensive material and sharing my journey in a series of blogs, I had to manage my consumption of information to avoid being overwhelmed into stasis.

The Question of Sufficient Information

The question then becomes: how much more information, detail, reports, studies, and research should one access before knowing without any shadow of doubt you are making the right decision, all things being equal?

You are told so much going into treatment but not nearly enough about the aftermath, it would seem.

Three Hidden Problems

The Australian urologist addressed the aftereffects of radiotherapy on the prostate that could leave you concerned about several things, of which sexual dysfunction has been a recent blog topic. He called them “3 Hidden Problems With Radiation Treatment for Prostate Cancer”, suggesting why we should not opt for radiotherapy.

When the prostate gland is irradiated, it could damage the surrounding tissue connected to the bowel (radiation proctitis, very graphic, the pictures can cause distress) and bladder (radiation cystitis) systems. Irradiating the prostate gland shrinks, scars, and can make it fibrotic, leading to two other consequences: limited salvage options or progressively reduced sexual function.

Complications and Salvage Treatments

Complications might arise if there is a local recurrence of cancer, making salvage activity quite difficult. This portends more impactful consequences for the patient and radical alternatives for bowel movements. Salvage treatments are better managed post-surgery than post-radiotherapy, where options are severely limited.

The state of the prostate gland after irradiation means that sexual function will increasingly diminish. This touches on erectile dysfunction and reduced ejaculatory performance. These are weighty matters that make you wonder if you had known all this before you commenced treatment, whether you would have made that choice.

Managing Side Effects

Again, the issue with choosing any treatment comes down to how you perceive you can manage the side effects. For surgery, they are immediate, whilst for radiotherapy they are progressive.

The possible loss of total sexual function, because the consultant surgeon had already indicated my prostate was too enlarged to guarantee the salvage of any nerves, immediately made that option a non-starter. I was not going to wait and see what a malignancy was going to do in my body through Active Surveillance; it would never have been an option for me.

My Choice

Choosing radical radiotherapy was the most comfortable choice in my circumstances. Though having an additional prayer point before I had my prostate gland zapped might have made this discovery less of a surprise and caused less concern.

Ultimately, I believe I did the right thing and will make the best of the good fortune I have to enjoy life and write better stories, with cancer behind me. I thank God.

Check your Prostate Cancer risk in 30 seconds.

Blog - Men's things XXXI: Can Intimacy Be Reclaimed After Prostate Cancer?

Blog – Photons on the Prostate - A year from starting radiotherapy

Blog - A prostate cancer diagnosis, one year on

Blog - Men's things - Prostate Cancer blogs

A Google NotebookLM AI Audio Overview Discussion of this blog

Men's things XXVII: The inconvenience of incontinence

We Need a Screening Programme

At any opportunity, especially when I encounter black men, I bring up men's things and prostate cancer. However, what has surprised me is that many of my white colleagues have had some exposure to this matter, usually through older members of their families: their fathers or fathers-in-law.

This might make people think prostate cancer is a middle-aged affliction in black men and a geriatric condition in white men. We should be careful not to delude ourselves into thinking this is the case. It affects all men, and whilst there are extenuating factors relating to race, age, and family history of cancer, we all need checkups, early ones too, to ensure that abnormalities, when found, are promptly dealt with.

This points to the need for widespread screening for prostate cancer, rather than leaving it to individuals to demand it themselves.

Some Aftereffects of Prostate Cancer

From my experience, almost 18 months after a prostate cancer diagnosis and 13 months after radiotherapy, I have come quite a long way, and I am grateful for that. The issues I still deal with are nighttime insomnia, some fatigue (though not to the point of being debilitating), occasional incontinence (more with the bladder than the bowel), and a lack of any sexual drive, which may also present as erectile dysfunction.

Inconvenient as incontinence might be, I manage it quite well: my Radar key for disabled toilets, my Just Can't Wait card to request the use of a toilet elsewhere, and I wear incontinence underwear, or I line my underwear with incontinence pads. These all save you the greater embarrassment of publicly visible mishaps, and better that than pushing up a gravestone in some nondescript cemetery.

Making the Best of It

Still on incontinence: the bladder aspect is usually that sudden and pressing urge, where you are never able to get to a toilet soon enough before wetting yourself. When it comes to the bowels, it is a feeling somewhere between the urge and constipation. Having already had a movement, it doesn't feel empty, and yet you can't make it happen. That presents some discomfort and anxiety whilst you hope it clears up soon.

With a basic consultation at a regular pharmacy, you can get medication to combat issues with erectile dysfunction. Ultimately, you work with or around the problems for the best outcomes in experience and wellbeing. Choosing not to be defined by either manliness or manhood can also be the key to contentment and happiness.

The walnut-sized prostate gland can be life-threatening if enlarged and cancerous, but once treated and kept under medical observation, the inconvenience should not take away from the joy of living.

AI Postscript

As I have AI to review my blogs for grammar, spelling, and contextual checking, I was quite impressed with this summary of the blog: The key was asking: "Would Akin still recognise this as his own thought, just expressed more clearly?" If the answer was no, I didn't restructure it. Your voice is situated in the precise intersection of being black, male, professionally engaged, medically informed, personally affected, and committed to demystifying this subject for others.

References

Blog - Photons on the Prostate - A year from starting radiotherapy

Blog - A prostate cancer diagnosis, one year on

Blog - Photons on the Prostate - XVIV - I Just Can't Wait

Blog - Men's things XXVI: Let's avoid the stigma of prostate cancer

Blog - Men's things - Prostate Cancer blogs

Men's things - XXIV - A presentation

Sharing my prostate cancer story

Within the last fortnight, I attended a gathering of black men in Manchester and Liverpool, where I was invited to tell my story about my experience with prostate cancer.

The story on its own could be compelling, as I do have friends and acquaintances, even strangers asking for advice and direction about how to navigate these issues, that I term, "Men’s things".

However, in such a semi-formal setting under the auspices of a registered charity, I felt it should not be a typical story-telling setting, but one where whoever listened learnt something and could act on it.

What the prostate gland does

To that end, I created slides with some images, because in all previous presentations I have attended on the topic of prostate cancer, the issue of the function of the prostate gland as a muscular switch between urination and ejaculation was not clear. For instance, I learnt this long after I had commenced radiotherapy treatment for prostate cancer.

Secondly, I had only found one image that gave a close-up view of how an enlarged prostate gland can present symptoms of difficulty or discomfort with the ease of urination. That visual image alone seemed to get men thinking about having checks on their prostate health.

Courtesy of NHS Overview of Benign Prostate Enlargement

Your active participation in your health, matters

On this perspective, I wove a story around my curiosity about some unusual blood test results outside normal ranges, through insistence to my GP for tests, the referral for further investigation, leading to a cancer diagnosis, then the treatment of prostate cancer, and the post-treatment side effects.

Beyond that is the need for black men to participate in surveys, especially when invited for bowel cancer screening, why men’s things should be more widely and openly discussed, and how early detection saves lives.

What I hoped men would take away from my presentation was that, “All prostate issues are not indicative of cancer, but every prostate enlargement should be investigated for cause and possible treatment.”

My presentation slides

Blog - Men's things - Prostate Cancer blogs

Blog - Photons on the Prostate - XIII

References

MedScape: International Prostate Symptom Score (IPSS) Calculator

Prostate Cancer UK: Risk Checker