A proton therapy beam reveals a landscape with a car driving down a road into the distance.

Proton Beam Therapy: A Survivor’s Story

Proton beam therapy is a hot discussion topic in this community and when I received an interesting note from Vickie about her partner’s proton experience, I knew I wanted to dig in and find out more.

What is proton beam therapy?

In very simple terms proton therapy is a type of radiation therapy that uses targeted beams of high-energy particles. It’s used to combat various forms of cancer particularly in children where cancer is located close to vital organs. The claims made for it are that it’s less likely to damage other organs and produces fewer side effects.

At first glance, it looks like a no-brainer, what could be better than a treatment that whacks the cancer and leaves the healthy organs intact?

Unfortunately, it’s not that simple and the jury is out as to how effective proton therapy is at combatting prostate cancer.

Treatment options work different in the UK

Current studies from the US offer encouraging news about proton therapy and treatment side effects. Studies show that patients who use proton therapy report less severe side effects than those treated with traditional radiation therapy.1

However, in the US it’s not widely available, may not be covered by insurance, and comes with a hefty price tag. So, is it all about the money? Well, not necessarily.

In the UK following various randomized comparison studies the National Health Service maintains there is ‘little evidence of significantly improved treatment benefits, such as better cancer control and reduced side effects, than compared to conventional treatment.’ They concluded ‘there is not sufficient evidence to support a proposal for the routine commissioning of this treatment for the indication.'2

No two men have the same diagnosis

This is where I want to bring in Vickie and her partner’s proton story. First up, she has some wise words on prostate cancer diagnosis.

‘No two men will have the same diagnosis as so much depends on how the diagnosis was done and how it was graded and staged. No two men will have the same underlying health issues and no two men will have the same outlook on how they wish to proceed or what they expect for quality of life.’ These will all have a bearing on the various treatment options and decisions.

Vickie is a firm believer in doing your homework: ‘Some men will just do what their doctor says and not research what other options might be available. We are all held captive by our insurance and health care system unless we are brave enough to think outside the box.’

During initial consultations, no mention was made of proton therapy but the couple ‘put in the hours and did the research’.

Reflections after proton beam therapy

A year ago, her partner embarked on 44 trips to the ‘proton gantry.’ The treatment appears successful, and she claims he has suffered no erectile dysfunction, no diapers, and no leaks. She freely admits they had to make sacrifices. It involved a five-hour drive to the hospital and came at a significant financial cost.

She asks the question: ‘Was it easy? No. Would we do it again and make the same choice? Yes.’ She says today their life as a couple is ‘richer and better than ever’.

Do your homework ahead of time

Interestingly on their final trip back from the hospital, she read her partner’s discharge paperwork which included a note from their very first appointment. It speaks volumes: ‘This patient is well versed in his disease diagnosis and fully understands various treatment options and can articulate well-researched ideology. He is an excellent candidate for Proton treatment’.

In the end, you may well follow your doctor’s advice as to your course of treatment, which may mean not opting for proton therapy. But don’t be blinkered, if Vickie’s story tells us anything it is to do your homework.

Cancer can make you feel your life is sliding out of control. Jump in the driver’s seat, grab the wheel, find out the treatment options and start heading down the road to recovery.

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