Whenever we have the chance for a major snowstorm, a colleague of mine sends out a Public Service Announcement (PSA) which details the storm development, factors that could affect the storm track and how much snow he thinks we’ll get. I’ve always enjoyed these because the gives a good synopsis and usually ends up being right. He numbers them by event – this last May storm was PSA #8. This winter, the PSA number has taken on a different meaning for me. In February, I was diagnosed with prostate cancer (PCa), which was found after my PSA (Prostate-Specific Antigen) number had risen a bit last year. Last time it was checked, I was at PSA #4.5.
When we started this blog, the idea was that I’d blog about bees and Diana would blog about all matters spiritual. A friend of mine, who went through treatment for Lymphoma, said one thing that helped him was to blog about his treatment. I told him I already had a blog, but it was about bees. This isn’t going to be a post about bees (although I’m sure I’ll work something in here), but more about my medical, spiritual, and emotional journey the past few months. If you wanted to hear about bees, you’ll have to wait for my next blog post and feel free to come back then. I’ll only share this one post about my cancer to Facebook, but you can come back periodically to the blog here if you are wondering how things are going. Anything I say below about treatment is my opinion only, so if you are in the same situation, don’t rely on what I say or what decision I made, but check out the resources at the bottom. I hope this PSA PSA can be helpful to someone else facing this.
It all started last fall when I got a Digital Rectal Exam (DRE) at my annual physical. (you’d think with the word “digital”, it would be something computer-ish, but it’s just the old finger-digit-up-the-butt exam). My GP thought he felt something was not right with my prostate and that since my PSA had risen, he said I should see a urologist. I balked at first because I had no symptoms and I was heading to Europe in a couple of weeks, but my GP said I had nothing to lose if there is no problem and everything to gain if there was. At that time, I barely knew what my prostate did. So, I when I got back from Italy, I went to see the urologist, he did another DRE, but he said he didn’t feel anything. I figured he did this all the time, so he should know better than my GP what was normal and not. We decided to do another PSA test in 3 months and see what that showed. For someone my age (54 at the time), he thought it should be less than 2.5 and it was 3.7 at my annual exam.
A note about the PSA number. There is controversy over how good an indicator it is for PCa. Some men have high PSA numbers, but no PCa. Others can have lower numbers (< 5), but still have intermediate (like me) or advanced stage cancer. And, it can be high if you’ve had sex or ridden a bike or driven a tractor the day before the test, but drop back down soon after. The rate of increase over time is a better indicator than a one-time number, so I think it is worth checking yearly. I went back over the past 15 years and plotted mine out (I’d been getting it checked each year through a Health Fair at work). Turns out mine took a big jump back in 2010, but no one really took notice, partly due to the fact that I switched doctors and records were lost or not checked. If only I knew then what I know now I might be facing different decisions. One doctor said even back when it was in the 1.X range, I had the cancer.
When my PSA came back at 4.5 in January, the urologist suggested a biopsy. This is a lovely test – they stick a big long needle through your ass and take 12 random tissue samples from your prostate, each with a big SNAP! sound. Oh, and you have an ultrasound probe the size of a rolling pin (or so it seemed) shoved up your rectum while this is going on. The problem with a random biopsy is that it is just that – random – and may or may not find the cancer cells. (Turns out there are ways to do a targeted biopsy where you have an MRI or ultrasound first to find the likely areas and just test that. I wish I had known that before hand).
The biopsy samples are used to determine a Gleason score, which is a measure of the extent of the cancer (usually “prostatic adenocarcinoma”). It takes the 2 most prevalent patterns of cell deformity (1 being normal and 5 being the most abnormal), so the scores range from 2-10 (e.g. 1+1 = 2; 5+5=10). A pattern of 3 or lower is close to normal, and generally they don’t grade less than three. A 3+3=6 score is low-grade cancer. A score of 7 or more is worse – mine is a 4+3=7 (which is worse than a 3+4=7) and puts me in the intermediate-grade cancer range. But, it’s better than 8 or higher (high-grade) which can mean that the cancer isn’t confined to the prostate and could have moved to the lymph nodes or bone. The biopsy is also used to determine how many of the cores had abnormal cells, how much of each core was abnormal, and whether the cancer is confined to one lobe or involves both lobes of the prostate. I had 4 positive cores, both sides (3 on the right, 1 on the left), but only 20% or less involvement in one core and the rest < 5%. ( I also had the samples re-checked by another expert which confirmed the 4+3=7). Except for the Gleason 7, I could be in the low-grade category. Damn!
In the week between the biopsy and getting the results, I started doing a lot of reading about Mr. Prostate and PCa in general. After the urologist told me I had cancer, he said, “I know you are not going to hear what else I have to say” which is generally the case when one gets a cancer diagnosis. However, I knew some of my options and was listening as he went over them. Being a urologist, he advocated surgery (radical prostatectomy) to remove my prostate. Other options include radiation (external and internal), cryotherapy, hormone therapy, and chemotherapy. If you are lucky and only have a Gleason score of 6 and no extracapsular spread (outside the prostate), you can opt for active surveillance – which means that you just get your PSA checked every 3 months and if it starts to rise or you start getting other symptoms, then you can opt for treatment. (Note: “active surveillance” is not “watchful waiting” – you need to be active and ready to respond to any changes!)
Every year, about ¼ million men are diagnosed with prostate cancer. Of those, about 10% die each year from the disease. Prostate cancer can be a serious disease, but most men diagnosed with prostate cancer do not die from it (although I know several people who have – one just last week). It is usually slow growing and occurs mostly in men over 65. (There’s a joke that if you are 80 and don’t have prostate cancer, the odds are that you are a woman). According the American Cancer Society, when taking into account all stages of PCa, the 5-year survival rate is almost 100%, 10-year is 99% and 15-year is 94%. (survival does not mean cure or good quality of life). Most older men die of something else other than their prostate cancer. So, of all the cancers to get, they say it’s better than the others, but it is the second most prevalent cancer in men behind skin cancer. And, there are two kinds – a slow growing (most cases) and an aggressive kind which spreads more quickly.
There’s no definitive cause for prostate cancer but there are some risk factors that have been identified. Family history is one risk factor – both my grandfathers had it (one died from it, the other from emphysema), one of my uncles died from it and one of my cousins had it but was successfully treated, so that probably increased my odds. There is some evidence that men who eat a lot of red meat or high-fat dairy products have a slightly elevated risk of getting prostate cancer. Maybe my bacon obsession has finally caught up with me – NAH!
While the survival rates are generally good, the side effects from treatment can be pretty bad and affect your quality of life while you are surviving. The most common side effects are incontinence and impotence – neither of which sounds appealing. As my wife said early on – “I want you to be continent and potent.” Me, too! Unfortunately, except for active surveillance, some side effects are inevitable with any treatment. With surgery, you have shortening of the penis (reminds me of the Seinfeld shrinkage episode) and dry orgasms. If the cancer is in the nerves or the surgeon nicks the nerve, you’ll have erectile dysfunction (ED) or total impotence. Radiation carries the risk of rectal burning and ancillary cancers of the bladder or rectum as well as ED. Hormone therapy can cause hot flashes, breast enlargement, mood swings, reduced libido and loss of muscle mass (sounds like menopause). Choosing a therapy really comes down to deciding which has the least worst side effects that you can live with.
In the past 3 months, I’ve been to prostate cancer support group meetings, seen doctors at 4 different medical establishments, spent time of nearly every day scouring the internet for information and talked with many people I know who have successfully survived their treatment. I’ve even gone with some alternative medicine (“woo”) – biofeedback, meditation (which has reduced my blood pressure), diet changes and yoga. There are some people who say a vegan diet can cure your cancer – I just can’t do that – I love me my bacon (although I’ve cut back to 2 pieces a week at most). Maybe if I was at a higher stage with limited options, I’d feel differently.
IMHO, prostate cancer is one of the most over-treated diseases. Many men with a Gleason 6 are told they need to get surgery and have their prostate removed. I fully understand why one would want to do that – you have cancer in your body and you just want it out – damn the side effects. The stress of active surveillance – having to continually monitor your PSA and worrying about it rising with each test – can be overwhelming. My main concern is not that I am going to die from prostate cancer, but that the side effects will really reduce my quality of life for the next 30 years. Sure, there are drugs like Viagra and Cialis for ED and if those don’t work you can get penile injections, pumps or implants. And there’s always Depends for the incontinence. I’m hoping not to have to do any of those, but I know that no matter what I do, my life is in for some changes. No doctor can guarantee an outcome that is free of that.
I’ve been so preoccupied with cancer that I’ve let some things slip this spring. I never got around to building my bumblebee house, never tried some different recipes for lip balm, never got around to making candles from my beeswax. I dropped the ball on creating a bee-safe neighborhood. I didn’t do any plant starts this year (which ends up being expensive). My motivation has been near zero for lots of projects – I’ve been in such a funk. But, now I have decided on a path forward and hopefully can get my groove back on.
After weighing all the options, I’ve decided to go with Stereotactic Body Radiation Therapy (SBRT), delivered via the CyberKnife system. It’s non-invasive (no surgery – despite the name) and has better odds for reducing most side effects than surgery or other forms of radiation. This is a robotic system, which tracks the prostate via implanted gold seed markers to accurately deliver the radiation. The prostate moves during the treatment (I picture it yelling “Duck!” trying to dodge the radiation beam), so the markers are used to triangulate and adjust where the doses are going (which is pretty cool!). I’m not thrilled to be getting zapped with radiation, but I feel my odds for a good quality of life after treatment are best with this option. I’m also going to do a 6-month hormone therapy to kill off any microscopic cancer cells that might be floating around in my body, which should increase the chances of a cure by another 15%. Given the short duration, any side effects should be completely reversable. I figure Diana and I can have hot flashes (or power surges as my doctor called them) together and watch chick-flicks for a good cry in the mean time.
It’s been a wild roller-coaster ride of emotions the past few months for my family and me, but now I have a path forward for treatment and cure. I have a wonderful support system of friends and family. My wife is just amazing and has friends at her ashram saying healing mantras for me. I’ll take any and all good thoughts, well wishes and prayers (of any denomination) to help me through this. I think I can beat this and be around for another 30 years. And, I have my bees. Sitting in front of the hive, watching them come in and go out is truly therapeutic.
If you are a male over 50 (or over 40 and have a family history of prostate cancer) and have not had your PSA checked recently, I suggest you do. The sooner the cancer is detected, the better your chances of survival. Here are some resources that I found helpful:
- Invasion of the Prostate Snatchers – Ralph Blum and Mark Scholz – good book which talks about the options and over treatment.
- The Prostate: A Guide for Men and The Women Who Love Them – Patrick Walsh and Janet Worthington (I haven’t read this, but a friend recommended it and I’ve heard others talk about it. Probably weighted towards the surgery option)
- American Cancer Society
- National Institutes of Health (NIH) – National Cancer Institute
- Mayo Clinic Website
- Johns-Hopkins Website
- Us Too – International Prostate Cancer Education & Support Network.
Before you make any decisions about treatment, do some research first. Go to a prostate cancer support group meeting to hear stories (good and bad) about different treatments, including active surveillance. As the leader of the group I’ve been attending said – “we’re not doctors, but we all have opinions”. Become as informed as possible. In the end, the decision to treat (or not) is yours. Unfortunately, YOU have to make that decision – no one else can do that for you.
Feel free to contact me via email (don at buddhaandthebees.net), or post comments on this blog.
Mike Estes · May 16, 2015 at 4:52 am
Sorry to hear about your diagnosis, but thanks for sharing it in such an educational, honest, and frankly entertaining way (the funny anecdotes, that is – not the medical realities!). Sending you good thoughts and all the strength I can send!
Don · May 16, 2015 at 12:56 pm
My younger son has banned me from joking to him about my cancer. I understand why it upsets him, but my nature is to find the humor in life where I can. Thanks for sending your thoughts and strength my way!
Joanne Graham · May 16, 2015 at 7:35 pm
I love this blog post so much — it is so you — from geeking out over the data to studying the options — and putting it all out there for people to now and understand. Your concerns about side affect are real – and for some embarrassing to talk about, so I’m glad you put it out there! I also like your little tinges of humor.
You are lucky to have Diana who I think has helped you to find a spiritual path during all of this.
Happy that you’ve made the decision and it seems like this is the decision you were hoping to be able to make earlier on. I know you will get a great result. I am/have been/will be your cheerleader. Stay strong my friend!
Don · May 16, 2015 at 7:42 pm
Thanks for the kind words and support, Joanne. I know you’ve got my back and are there when I need you. I am blessed to have such great friends like you.
Anne Gouin · May 17, 2015 at 2:11 am
My daughter Emily and I joined Dawne and Catherine today at our annual Relay for Life event. I asked how you were doing and she told me of your blog. We are all sending prayers and healing wishes your way. I appreciate your candor and will look forward to dropping by to cheer you on. I know you will be joining the ranks of many survivors. As you may recall from Dawne, my optional course of IMRT created a mess of side effects. Six years later, I would still have done it. As you said, it’s a personal thing, how and what to treat. If I had one thing to change, I’d have learned much more about the power of steroids. I have always been interested in medicine, but had no idea the havoc my micro dose of Decadron would cause, basically an easily treatable fungus infection that got way out of control. I had to use them, but would have asked to wean off them more quickly. It sounds like you and your family are at peace and I think you have a great plan. Be strong and be well.
Anne Gouin (Dawne’s BFFWE, which she devised, or Best Friends Forever Without Exception)
Don · May 17, 2015 at 3:13 am
Thanks for your support, Anne. I’m glad to hear you are at peace with your decision. One of my areas of growth is going to be not second guessing my decision. I do that in most things in my life (it’s the engineer in me). I met a guy at the last support group meeting who had surgery for PCa and is dealing with total impotence. He said that at 71, he thought he could handle that, but is having a really hard time. At the meeting he heard about other options and he was second guessing his decision (he’s also an engineer). I tried to reassure him that he made the best decision he could with the information he had. That’s all we can do. I think I’ve done all the research and weighed all the options. I’m also hopeful that in the event of a recurrence, there will be new treatments in the future that I can choose.
I know that Dawne thinks the world of you and I’m glad you are BFFWEs.
Julie · May 17, 2015 at 11:57 am
I really appreciate this excellent PSA, but I’m so sorry to hear of your diagnosis. Your bravery and honesty in sharing are inspiring, though. You are fortunate to have such a supportive wife. My dad was diagnosed with stage 4 cancer 11 years ago, but he got through it — in great part due to my mom’s support. Having an awesome partner is so important.
Sending you prayers for health and peace.
Don · May 17, 2015 at 1:41 pm
Thanks for your support, Julie. Diana is an awesome partner and as Joanne says above, she’s knowledgeable in the ways of “woo”. 😉 And, she likes helping me with the bees!
Sorry to hear about your dad but I’m glad he got through it with your mom’s support. It’s good to hear stories of people with late stage disease coming through.
Alan Hodesblatt · May 18, 2015 at 3:07 pm
Don — Best of luck with your continued treatment. It sounds like you have a great support network at home, and you have all of us rooting for you from afar.
P.S. If your travels bring you to the Philly or Baltimore area, let me know — I live right in between them in Delaware.
Don · May 18, 2015 at 3:39 pm
Thanks for your support, Alan. I’m blessed to have fans rooting for me near and far!