Well here I am into my third week of External Beam Radiation Therapy, feeling better than I have for some time and in a very positive space, so I think it is now time to tell my story.
My journey commenced in January of this year (2015) when my PSA result was slightly elevated. My G.P. scheduled a follow up test in March which indicated a further increase, so off to the Urologist I went. In July, armed with the results of a CT scan, an MRI and a Biopsy I sat in front of the Urologist for the second time ready for the news that I had suspected – I had Prostate Cancer.
Having presented with none of the symptoms related to prostate and urinary issues, I realise now, how import a regular PSA is. Thanks to the recommendation of my G.P, my Prostate journey may well have been much worse.
So with a PSA of 6 and a Gleason score of 7 (3+4) and no symptoms, my urologist advised that some action was necessary and the watch & wait approach was not an option for me. Being an urologist, he was leaning towards a radical prostatectomy, as that is what he does and what believes in. I was fully informed of the possible side effects and left his rooms leaning towards this approach. He also referred me to a radiologist/oncologist who agreed that some intervention was definitely recommended and she then went into great detail as to what was involved with radiation therapy, both internal and external. With regards to internal (seeds) she was not ready to commit as she felt the cancer cells were close to the capsule and wanted to refer my results to a colleague. Now the ball was well and truly in my court as it was now up to me to decide which of the two options I should choose, surgery or radiation.
I might add at this point, and thanks to whoever suggested it within your stories, I recorded both of my consultations which proved to be invaluable. The urologist had never been asked before, however did agree with some reluctance. The radiologist/oncologist said "sure, go ahead, I have been asked many times" Similarly, from your stories, I decided to get a second opinion from one of the best in the prostate field who played a major role in assisting me in making my final decision.
One of the best I ended up seeing or the 'superstar' that I called him with much respect and a little humour asked what was important to me. As a participant in two and sometimes three choirs, the use of the pelvic floor muscles are vital in the art of singing and the possibility of incontinence however slim was very significant in my decision as to which treatment regime I would embark upon. My 'superstar' friend explained, that in his opinion the older you are the greater the risk of side effects, including incontinence after surgery. In fact he would seriously recommend against surgery for patients 70 and over. Being 68 I was now considering removing the radical prostatectomy from my list of treatment options.
Prof 'superstar' was recommending 8 weeks of radiation therapy and based on my numbers indicated a 98% cure rate. When I enquired about internal seed implants, he has happy to include this as a treatment option, however based on his experience of hundreds of similar cases he would not undertake seeds alone as he was now seeing a pattern develop of a low recurrence rate with seeds alone. Were I to decide on this approach he would also undertake 5 weeks of external beam radiation. To cut a long story short and after two telephone conversations with his radiotherapy team to discuss my case and possible options, I left his rooms with an appointment in three weeks to undertake the mapping of the prostate in preparation for the actual seed implants.
I was now relieved that the decision had been made, however I was now faced with two significant issues. The first was the distance that I would be required to travel daily for the radiation – a five hour round trip, and the upward spiral of costs being incurred through Prof 'superstar' and his team all of which were charging well above the scheduled fees. I felt really comfortable with my radiologist/oncologist and had no hesitation in contacting her with my news and sharing the two issues I had concerns with. She was just amazing, and within two days all issues were resolved and treatment scheduled to start early October. Yeh !! It Turned out that my radiologist/oncologist new Prof S well and had in fact worked with him on some previous cases. She was happy to call him and ask if he would be happy for her to take over the radiation therapy (a three hour round trip from my home) and have him undertake the seed implants. The result was a panel discussion with a number of specialists on my specific case, the outcome being no seed implants, but external radiation for eight weeks. Prof S would undertake the placement of the gold fiducial markers and the protective gel, and my radiologist/oncologist would undertake the radiation treatments within the public system with no cost to me. I was now very happy with the outcome and was now keen to get on with it. More later on my preparation for the eight weeks of radiation.
It is almost 12 months since I completed my external beam radiation treatment and in another week I will see my oncologist for my third follow-up visit, my previous visit being six months ago.
As mentioned in the first chapter of my journey, I had an eight week waiting period from the time I had made my decision on which type of treatment I would follow to the actual starting date of the treatment. Throughout my research, following my diagnosis I was discovering that there was a possibility that during my treatment there may well be some side effects, some mild, some not so pleasant and some may even be ongoing. My GP and oncologist actually re-enforced this as did many of the stories within YANA, so I decided to look at ways to minimise these and possibly even avoid them. I arranged appointments with a nutritionist/herbalist and an acupuncture/Chinese herbalist. The nutritionist started me on a course of herbs to strengthen my immune system and my acupuncture practitioner was confident that with both acupuncture and Chinese herbs he could make my experience throughout the eight weeks a more positive one, with the herbs being the more important of the two. I embarked on a weekly acupuncture treatment in addition to my daily dose of Chinese herbs up to and throughout the radiation. I did continue a lesser dose of herbs after the completion of the treatment plus my weekly acupuncture.
To my great relief, I came through the eight week treatment regime with only two side effects worthy of mention, both of which were mild.
The side effect that would probably be the most debilitating was the fatigue and would start to kick in after the third week. Based on this information I decided to take advantage of subsidised accommodation within the hospital complex and only a three minute walk from the cancer treatment centre which would eliminate the three hour round trip daily I was faced with for the eight weeks. The cancer treatment centre was most accommodating and arranged for my treatment time to the first cab off the ranks each day with the exception of the first treatment each week which was the last time slot, giving be almost three days at home each week. I was aware that regular exercise can reduce the fatigue considerably so throughout my radiotherapy routine I walked daily for a minimum of an hour. My daily routine consisted of an hour of exercise, an hour of meditation, lots of reading, catching up on movies and spending time with friends who would visit and take me out for lunch. As I have done with many situations throughout my life, I turned the eight week treatment regime into an adventure and the time passed very quickly. The fatigue was mild to say the least and not as debilitating as I had been warned and had expected.
The only other side effect worthy of mention was the urgency to urinate which started about three weeks into the treatment and continued for around three weeks to a month after competition – the solution: to ensure a toilet was always within easy reach.
I have now had my most recent result and am pleased to share with you a PSA of 0.64 and a possible further reduction into the following months. Six monthly PSA tests for the next five years with no further visits to my oncologist, unless I deem it necessary.
So what is next. I will continue to improve on my diet, continue with exercise and regular mediation and enjoy a healthier lifestyle as I move forward. My intention is to die with prostate cancer and not as a result of it.
Maxwell's e-mail address is: robintheheath AT gmail.com (replace "AT" with "@")