Today, I start a new series here at BOOL that I call Get Real Conversations. On a regular basis I’ll be chatting with ordinary, real people who have experienced health and lifestyle challenges to give you a personal perspective of what it’s like to confront an issue and deal with it. These documented conversations are meant to provide one person’s viewpoint and journey and not as a primer for how you should deal with your own health challenges. But, by hearing directly from someone who’s been in the trenches or made some choices that helped them cope or thrive, I hope you will look at your own health in a more enlightened way.
It’s MOvember, so my conversation today is about prostate cancer and how my friends Henry and Bruce navigated their own experiences with this disease.
Henry, 71, was diagnosed in January 2011 and went through treatment during the spring of that year. Baby Boomer Bruce, 63, got his diagnosis a year later and was treated in spring 2012.
What was your reaction when you found out you had prostate cancer?
Henry: It was life changing. I was not prepared to hear that news. And so then, of course, upset. I had no idea the minor symptoms I had been having were related to prostate cancer. The message I got was that this cancer is very treatable though, so that helped somewhat. Also I have a supportive partner so felt I was not going through this alone.
Bruce: I guess I was surprised as I hadn’t had any symptoms, really. It was just the fact that I had found a new GP and he insisted on a thorough examination that included both the digital rectal examination (DRE) and the PSA test (Prostate-Specific Antigen) that we even found out. I had been feeling fine and still do. I will admit that I had a couple of restless nights after the diagnosis, but I was not freaked out as I had seen Henry go through it and he was doing fine.
So what symptoms did you have?
Henry: It was typical – or at least what I thought was typical – for a man of my age. You know, having to get up in the night to pee more frequently. I just took it for granted that was a reality and almost didn’t bother to mention it at my annual physical. But when I did, my doctor said we should check it out.
Bruce: Looking back now, I can see that I had been experiencing sort of fullness when urinating, like I wasn’t really able to release it all. That was a symptom but not one I really recognized as an issue related to prostate cancer. It’s funny, even though I knew Henry had gone through this, I just didn’t think that it could be me who would have it too.
How were you diagnosed?
Henry: My doctor – who was practically a teenager by the way – did a digital rectal examination and could actually feel that the prostate was enlarged. I then went through a biopsy — which was not scary or painful but just a little strange. The sound of them taking tissue is a little like a gunshot: snap, snap, snap! So that’s a little concerning when you are there with your legs up in the stirrups. And they also did a PSA test which showed a slight elevation at 4.2 (normal range for men aged 70-79 is between 0.0 and 4.0 according to the Canadian Cancer Society).
Bruce: For me, the doctor felt nothing abnormal with the digital test. Everything felt within the ‘normal’ range for a man of my age. So if he had just relied on that, we would not have found the cancer. Like Henry, I also had a PSA test which showed a very high elevation at 16, and then a biopsy. The biopsy showed that 8 out of 10 samples that were taken indicated cancer.
Henry: Yes, my biopsy showed 8 out of 12 samples had cancerous cells so it was really the combination of all three things that confirmed the diagnosis.
Bruce: That’s important. You really can’t rely on just one thing as there are so many variables.
Once you got the diagnosis, what treatment was suggested?
Henry: After consulting with a urologist, my GP and an oncology radiologist, it was recommended that I proceed with surgery and then follow it up with a course of radiation. The truth is they can’t know how or if the cancer has spread and to what extent until they are in the surgery. My procedure was to have taken about an hour and a half but ended up taking 4 hours because they found more cancer. But, they believed it had not spread beyond the prostate which is good news. I did have radiation to follow though – 5 days a week for a couple of months.
Bruce: When I was diagnosed they give you a lot of information and brochures to look at when deciding whether to have surgery or radiation or both and these all talk about worst case scenarios from every treatment. Everything from incontinence to the inability to have an erection – it all sounds terrible. But I read everything and did more research on my own, and thought about it and then talked to my doctor about my concerns about these side-effects. It was important for me to minimize them and so I asked him “If you were me, what would you do?” He replied that given my case, he would have radiation and leave the surgery for now. So that’s what I chose.
What was the treatment like?
Henry: The surgery went fine, although I contracted a urinary tract infection to follow which can be quite common and was an awful side effect. I don’t think I have ever been in such pain. Then I went on to have about 30 or so sessions of (beam) radiation over a 2 month period. When you have radiation that frequently, you really have to make it the priority and plan your life around it because it’s not at the same time every day. I think the hardest part of that was you need to have an empty bowel and a full bladder when you are getting the radiation. It took a few days to figure out how to get the timing right so you get that full bladder just in time for the treatment, but not too early so you end up peeing all over the table. Yes – it can happen! (laughing!)
Bruce: (laughing) Oh yes that can be really uncomfortable. I sometimes just jet-propelled off that table to the washroom! But the cancer clinic staff was really great and efficient. I actually had a much shorter course of radiation than Henry because I started with different kind of radiation called high dose rate brachytherapy where I had 16 needles inserted in the perineum just blasting in the radiation all at once. And then two weeks later I had just 15 sessions of regular beam radiation.
How are you feeling and doing now?
Henry: Well great. You have to have follow up PSA tests at regular intervals after treatment to see what your count is and determine if the cancer has been contained or removed. My counts started coming down right after treatment and my last scan showed ‘undetectable’. There are always a few side effects to deal with, sometimes because of some scar tissue there are urination issues. But I’m working on that with my health team and everything is progressing.
Bruce: My PSA went down a lot after the radiation – I started at 16 and it reduced to 5. And then I had a tiny bump back up to 6 which my doctors tell me is quite a common rebound. I’ll be having another measure early in the new year and we are aiming for a 2! I’m also still working through some mild side effects but I am feeling very positive. I think one of the bonuses of going through this is that I started to take better care of myself, especially with what I ate and so I lost some weight and really feel a lot better than before.
What advice do you have for other men based on your experience?
Henry: Be open with your doctor. Don’t be afraid to mention something even mundane – like how many times you have to get up to pee at night. It might be nothing but it might be something.
Bruce: Talk about it. Men don’t generally tend to discuss things like this, but it’s amazing that when you mention you are experiencing something, so many other men speak up and say “Oh I’ve been having that too. Or I’ve gone through that too.” I think it can be really encouraging and practical to hear other people`s experiences. I’m grateful for all the sharing.
Henry: Exercise. It really helps to be active. I’ve heard about a lot of studies that are especially positive about exercise playing a role in reducing the risk of a re-occurrence of cancer. In fact, I am in an exercise program now through Wellspring that is studying the impact that exercise has on people who have had cancer. I’m feeling great – it’s really such a supportive program.
Bruce: Changing your diet to eat healthier. I used to eat a lot of dairy and wheat and I still love those foods. And bigger portions. But I am working on eating a lot less of those and having a more balanced diet and I feel a lot lighter, better than ever before.
Henry: Have your annual physical. That’s kind of a no-brainer but so many men just don’t go.
Bruce: Make the most of your time with the doctor. Educate yourself and make notes so that when you are with you doctors you can ask all the questions you need without wasting their time. They are busy but I found that they’ll answer your questions – you just need to remember them all and get to the point.
Henry: Don’t be afraid of the treatments or what you might need to do to get well. Some things are funny and some are not always pleasant, but the staff is professional and afterall, it’s for your health.
Bruce: Sometimes you just have to laugh. I mean, having my legs up in the stirrups was silly but really, who cares?
BOOL is deeply grateful to Henry and Bruce for sharing their stories. Every man is different and so this information is not meant to diagnose, only to inform. For more information about prostate cancer, you can start with the Prostate Cancer Canada or the Canadian Cancer Society and then consult your medical or naturopathic doctor.
As both Bruce and Henry mentioned, changing your diet and lifestyle is important when cancer prevention or recovery from treatment is involved. If you, or a special man in your life, need more info, I can help.