Hello, everyone.
My journey to this moment has been a long one, and although I will try to be brief, I would like to share a little of my story in the hope that some of you might be able to offer advice based on your own experiences.
I was first diagnosed with prostate cancer four years ago. For some time, active surveillance seemed to be a reasonable approach, but unfortunately, the cancer has now progressed to the point where treatment has become necessary.
The options presented to me were a radical prostatectomy, brachytherapy, or external beam radiation therapy (EBRT). To be perfectly candid, none of these options was particularly appealing. Nevertheless, I had more or less resigned myself to brachytherapy, largely because I understood there was a reasonable possibility of preserving my sexual function and continuing to enjoy a fulfilling sex life afterward.
Then, rather unexpectedly, I learned about MR-Linac treatment through a friend in the United States who had undergone the procedure himself. His experience was extremely positive, and the more I learned about this technology, the more interested I became.
I should mention that I am an American who has lived in Japan for more than three decades. You may wonder why I am posting on a UK prostate cancer forum. The answer is quite simple: of all the places I have turned to for information and support, this community has consistently offered some of the most honest, thoughtful, compassionate, and genuinely helpful responses I have encountered. That is why I have returned, and why I am hoping to benefit once again from your collective experience.
When I discussed MR-Linac with my urologist, who would otherwise have performed my prostatectomy or brachytherapy, he was very enthusiastic about the possibility and encouraged me to pursue it.
My most recent biopsy revealed a Gleason score of 4+3=7, with cancer detected in 7 of 12 biopsy cores. According to the examinations performed thus far, there is no evidence that the cancer has spread beyond the prostate.
Next week, I have my first consultation at a hospital equipped with an MR-Linac machine. As I understand it, there are only two such machines in Japan, and unfortunately, neither is particularly convenient for me to reach. Nevertheless, if this treatment offers a promising combination of effectiveness and reduced side effects, I am more than willing to make the journey.
My principal concern at the moment is the length of time between deciding to pursue this treatment and actually beginning it. It has already been approximately five weeks since I received my biopsy results, and I have had to wait more than a month simply to secure this initial consultation. Naturally, I am anxious to know how much longer the process might take.
For those of you who have undergone MR-Linac treatment, I would be enormously grateful if you could share your experiences, particularly regarding the following questions:
How long did you wait? Once you and your medical team agreed that MR-Linac was the appropriate treatment, how much time elapsed before your first treatment session?
Were additional examinations necessary? Did you undergo another MRI, additional PSA blood tests, or other examinations before treatment could begin?
How many treatment sessions did you have? I understand that some MR-Linac treatment protocols involve five sessions. Was that your experience, and over what period were they administered?
How did your PSA respond? How long did it take before you began seeing a meaningful reduction in your PSA level? I understand that the decline can be gradual, but I would be interested in hearing about your personal experience.
And perhaps most importantly, what side effects did you experience? I am particularly interested in urinary, bowel, and sexual side effects, both during treatment and in the months afterward. Were they temporary, or have any persisted?
I realize, of course, that everyone's circumstances are different and that no two patients will necessarily respond to treatment in the same way. Nevertheless, hearing directly from people who have been through this experience would be invaluable to me, especially as I prepare for my consultation next week.
I am trying to approach this next chapter with optimism, but I would be less than truthful if I said I wasn't also apprehensive. Having lived with this diagnosis for four years, I am now eager to move forward with treatment while giving myself the best possible chance of preserving my quality of life.
Thank you in advance to anyone who takes the time to respond. I have always appreciated the kindness and generosity of this community, and I look forward to hearing about your experiences.
(Note: I am 72 years old.)