Post Proton Beam Therapy Update

Wow, has it really been that long since my last post? I have to admit that the eight weeks of getting up at 5.30am left me with no energy at the end of the day to sit at my computer and blog. Most of my tiredness was due to rising early and a very busy work life, but I have the feeling that some was attributable to the treatment itself. Someone mentioned to me that babies need a lot of sleep because (healthy) cells are multiplying so fast as they grow – and in like fashion my body has been putting a lot of energy into repairing, restoring and renewing the healthy cells affected by the radiation. I don’t know if this is scientifically true, but it ws a helpful and sustaining thought.

I have to say that the treatment visits rapidly became routine. Park the car, grab an orange juice, take the elevator, greet fellow patients, get changed into the ubiquitous hospital gown and wait to be called in. The Gantry 2 Technicians (Allisha, Chris, Georgene, John and Phil) at the Francis H Burr Proton Treatment Center were outstanding in their professionalism, warmth and humor. It was truly a pleasure to be greeted each morning with such positivity and care. The experience of getting ‘zapped’ was easy, quick and completely painless.  I have to admit that I frequently felt as if I was in the medical bay on Starship Enterprise being instantly healed by people pointing ‘remotes’.

As I neared the end of treatment I did notice a slightly elevated discomfort with urination, but not anything that could be in any way described as painful. In the month since I finished treatment this discomfort has almost completely disappeared. I am still somewhat fatigued – but a lot of this probably due to maintaining a very active work schedule throughout and post treatment. Nothing that a good vacation wouldn’t cure. Anyone want to fund a month in Hawaii???

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Starting Proton Therapy Treatment

In physics, the proton (Greek πρῶτον / proton “first”) is a subatomic particle with an electric charge of one positive fundamental unit (1.60217653(14)×10−19 C), a diameter of about 1.65×10−15 m^[1], and a mass of 938.272309(28) MeV/c2 (1.007276466(13) u, 1.6726×10−27 kg), or about 1836 times the mass of an electron. (full Wikipedia Entry)

What I know about proton physics would ‘fit on the head of a pin’ (to quote an olde English expression) but the definition above leads me to surmise that many billion protons would fit there.

I began my Proton Therapy treatments last Thursday at the Francis H. Burr Proton Therapy Center at Mass General Hospital. After entering the building at ground level I took the elevator down to treatment level. ( I hear that most if not all proton treatment facilities are ‘buried’ partly to shield radiation and partly because of the tremendous weight of the equipment.) A short wait ended in an invitation to visit the changing room, remove clothing below the waist and put on a hospital gown. I was then guided through a secure door and into what at first appeared to be a labyrinth of corridors with thick, shielding walls. After several turns I entered the treatment room and was greeted by a very relaxed and friendly  group of technicians. The treatment room reminded me of a cluttered version of the sick bay on StarTrek’s (The Next Generation) Enterprise. Sci Fi had become reality. Lying down on the narrow treatment ‘table’ I was assisted to the correct position by the technicians who used lasers and the small tatoos on my sides and lower belly to line me up correctly. An X-ray and UltraSound were used to confirm my position. The technicians then took shelter in a shielded control room.

I kept very still, listened to various buzzes and whirrs from the gantry, and tried to sense whether I could feel a stream of particles (about 1836 times the mass of an electron) bombarding my prostate. In spite of the fact that I credit myself with being a relatively sensitive guy I could feel nothing!

After about two minutes the friendly technicians returned, helped me off the table and wished me “have a nice day”. Quite surreal! I returned to the changing room, got dressed and left the building.

Since then I have had two more treatments – all mirroring the first except that the proton beam is directed from alternating sides of my torso. So far I have experienced no worrying side effects.

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Proton Bob

I really want to encourage men choosing Proton Beam Therapy for Prostate Cancer to become members of the Brotherhood of the Balloon. I joined just a couple of months ago and have found the information and stories presented in the monthly members newsletters to be incredibly helpful and extremely ‘level-headed’. It is so encouraging to hear about men who received this treatment more than ten years ago and whose quality of life remains truly dynamic.

Even if Proton Beam Therapy is just one of the options you are considering I urge you to read Bob Marckini’s “You Can Beat Prostate Cancer”

Reading about the rapidly increasing popularity of Proton Beam Therapy in recent Brotherhood of the Balloon newsletters reinforces just how lucky I have been in a) living so close to Mass General Hospital where one of the five US Proton Beam Centers is located, b) having to spend less than 2 months on the waiting list, and c) having doctors who discovered my cancer early enough to create a high probability of successful treatment.

So here’s an interesting question. My treatment is due to start on September 4th. At my treatment planning session I asked my radiation oncologist Dr Shipley about ‘the balloon’ – and, to my surprise he said, “We’re not using it anymore at MGH.” (Just as I was getting myself used to the idea:-) Does anyone else have information about this?? And how can I qualify for full membership in BOB if there’s no balloon?

Answers to the above gratefully accepted in ‘Comments’.

(Thank you Bob for your kind words about this blog)

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Proton Beam Therapy Treatment Planning

Just back from my “treatment planning” aka an hour long session with my radiation oncologist Dr Shipley at MGH.

I breezed in expecting some questions, some restatement of the potential side effects of proton beam therapy, and a quick whiz through the CAT scan machine. I was not disappointed. I did indeed receive these – and much much more!

It turns out that the preparation for the CAT Scan involves a couple of “procedures”. One being the insertion of a gold seed at the base of the prostate. This is achieved by the injection of a) novocaine and b) the seed itself with a three inch long probe through the perineum. (If you don’t know what the perineum is – look it up!.) The second “proceedure” was the insertion of a dye into the bladder by way of a catheter. All I can say is that males are not really built for these kind of insertions! After that, the tattoo needle marking my lower belly in a couple of places after the CAT scan was a walk in the park.

Walking to the park-ing lot afterwards I felt proud of myself – even if a little invaded. I am assured that the hardest part of my treatment is now behind me. Could that be a pun?

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Proton Beam Therapy

Checking around on the net I am amazed and grateful for all the leg work already done by men with prostate cancer. Their stories and research, not to mention their time and effort in making them public has made it relatively easy for me to decide upon my course of treatment.  My doctors having given the same chance of a complete recovery from either a radical prostatectomy or from external beam radiation, my decision essentially came down to the likely difference in side effects from either option.

Another big part of my decision: physical pain scares me! As I’ve said before on this blog – I’m a complete wimp! The idea of being cathetered, cut open, sewn up, – albeit under anesthetic is distinctly unappealing to say the least. Not to mention the subsequent urine bags, pads and de-cathetering that are the accompaniment to a radical prostatectomy. The shudders I experienced in contemplating this treatment – albeit by the most caring and skilled of surgeons – were enough to turn me towards radiation therapy.

After reading dozens of stories and looking at the many available statistics concerning treatment side effects it rapidly became clear that  Proton Beam Therapy was not only the least invasive but also potentially the least damaging to surrounding tissue and to subsequent “quality of life”. For me the specter of incontinence was the most frightening issue, and from my reading of available information it seems that PBT is the therapy which carries least long term risk in this regard.

I was also swayed by the stories of the many men living hundreds of miles from a Proton Therapy Center who put their lives ‘on hold’ so they could move to one of the six locations in the US for the eight week duration of the treatment. The stories were overwhelmingly positive and included follow up reports of  cancer-free lives after treatment of up to ten years and counting. Again I have to count my blessings that I live only 18 miles from a center.

I have been in touch with Dr Shipley and am scheduled for a CT planning session (on 23rd July) in preparation for Proton Beam Therapy which will begin at the beginning of September.

My treatment will be at the Francis H Burr Proton Therapy Center at Mass General Hospital in Boston.

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