Good evening to the MNCC community!
Monday Night Cancer Club is a Daily Kos group for anyone who has cancer, has a loved one with cancer, or who has questions, issues, or information to share about cancer, including clinicians, researchers, or others who have a special interest and can help to educate our readers. We have many different members who fit all these categories, sometimes more than one at a time. Please share if you can, or just listen; there is plenty to learn just from reading our extensive catalogue of past diaries and postings. All are welcome to use this group as a resource. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to cover physical, spiritual, emotional and cognitive aspects. While most diaries focus on a specific topic or area relevant to cancer, each diary is also an Open Thread for sharing concerns, announcements, and information. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Here are the commitments for monthly diaries as it stands right now — please volunteer! We don’t have any takers at this point. We would greatly appreciate your input!
July —
August —
September —
October —
As most of you may know, Monday Night Cancer Club has moved to a monthly cadence. Because of this, it is important to reinforce the sharing and community aspects of our group. If you click on the group tag, you will notice that the move to a monthly post doesn’t mean that there are only posts on the first Monday of each month. Entries are still posted to MNCC whenever they are shared or relevant.
My first MNCC diary four years ago discussed the concept of active surveillance and the US Preventive Services Task Force’s decision to recommend against using the PSA test for prostate cancer screening. My take at the time was somewhat heated, as I opposed this recommendation. While I understood that, statistically, the test might have caused more harm than good in the aggregate, due primarily to aggressive treatments of a cancer that might never kill you, the recommendation from a authoritative body might also have caused men to avoid the test altogether, preventing some men with aggressive cancers from being diagnosed and treated. I believed this would rob men of a useful tool in discussing the test with their doctors and deciding whether a course of treatment was indicated or not.
Well, times have changed, and in a relatively short period of time. In April of this year, the members of the task force have now approved of using the PSA test to screen for prostate cancer, if someone has discussed the test with their doctor and understand the limitations. This is exactly what I was arguing for four years ago. I view this as positive progress, and hope that men with a history of prostate cancer in their family or who are concerned for other reasons have these discussions with their doctors and ask to have the PSA test. What do you think?
As for myself, I have enjoyed five years of active surveillance since my cancer was diagnosed. I made sure to have my quarterly PSA test and periodic biopsies to ensure that the cancer was small, contained, and non-aggressive. In these five years, my PSA tests stayed within a small range from the low 3’s to low 4’s. My biopsies were uniformly unthreatening. I was quite happy that I had chosen the course I had, since I was able to avoid any side effects of treatment. Well, in keeping with the theme of the diary, times have changed. My PSA test elevated in March to 6.2. Ack. Because the test can be impacted by many different things (my urologist: “Were you constipated when you took it?”) I repeated the test in May and while it dropped a bit, it was still elevated at 5.4. To keep this in perspective, men with larger and more aggressive cancers can have readings in the teens and twenties.
I’m having another biopsy on Friday in order to give my doctors a read on what is exactly going on, but basically I’m facing treatment now. That was the bet I made with active surveillance...any evidence that the cancer had changed for the worse meant I had to treat. I’m an accountant, not a big risk taker by nature. I am leaning toward one of two types of radiation, either a somewhat traditional approach of daily treatments over 3-4 weeks, or the equivalent of cyberknife, a more targeted approach, requiring fewer treatments over the same period. I still don’t want to have surgery due to the complications of nerve damage possible and the resulting incontinence and impotence. I also am not considering brachytherapy, the implantation of radioactive seeds. As my radiologist and I discussed, why leave the seeds in your body after they have done their job when external radiation accomplishes the same thing? Both of the radiation options I am considering have a cure rate of 92% according to my doctors. There have been real advances in the last 5 years in the efficacy of radiation treatments.
Speaking of which, here is a survey of men indicating the proportion of men who regretted the treatment choice they made. The article is from an online support group that I subscribe to. There is a non-trivial number of men who wished they had chosen another path, due to both the consequences of treatment, or because of increased anxiety about their cancer. Follow the link for more detailed information on the survey. In the end, I just want to strongly advocate for men to make fully informed choices when it comes to this peculiar cancer.
As always, I’m just telling my particular story, but this space is for anyone to share or discuss your own experiences, be it yours or the experiences of your loved ones. Please feel free to treat this as an open thread. We are all in this together, and we’re all here for different reasons. Love to all.