How I Chose My Prostate Cancer Treatment AND Got to Remission

I have had feedback from many people that they are reading my blogs about my cancer journey and appreciation for my speaking out, when for many men this is a taboo subject. I really appreciate the feedback. It’s not exactly a comfortable thing to share. There are a couple of things I would appreciate even more. If you think these blogs are useful, please leave a comment or share it with others and if you can find it in your heart to do so, please visit my Relay For Life page. It’s a month away and I am desperately hoping the weather isn’t like it is today!

The biggest win for me has been that I am now up to 20 people who have been motivated by me to get tested for cancer, which is awesome. Prostate cancer does kill people. On Wednesday night I was standing by the window in a stinking hot room at the West Plaza Hotel in Wellington with no air conditioning, looking out at the night sky and hoping it would cool down and watching the Halberg Awards live on TV. 

In the memorial section, there was the face of Steve Sumner how died only a year ago from Prostate Cancer, I thought of a radio personality (I haven’t asked her permission so won’t use her name) who told me her father died from Prostate Cancer because he didn’t get checked until it was too late; and I thought of Paul Holmes who on one TV interview said that he wished he had never known he had cancer, but reading this story, I suspect he changed his mind as he realised how important life and his family were to him.

Anyway, I met with my urologist and my oncologist to discuss my cancer treatment options. They gave me an information pack from the Auckland Cancer Society and whilst being very diligent in trying not to let their biases show, explained a little about the options available to me. I have had a little experience with specialists who are very focused on the particular treatments or therapies they offer, and they should, because they shouldn’t be performing them if they don’t believe in them. But one size doesn’t fit all.

I was given four medical options. I did also try alternatives like Pomi-T for a long time and sea cucumber which tasted horrendous and cost a fortune. They didn’t hurt me, but the tumors kept growing.

1. External Beam Radiation. 8 weeks of radiation, which according to my oncologist has a 95% success rate for people at my level of cancer.
2. Brachytherapy. This is where they insert radioactive isotopes into the prostate and treat it from the inside out.
3. Hormone therapy. This is similar to the treatment they use on sex offenders to reduce their sexual urges, reducing testosterone and increasing female hormones. Testosterone feeds tumors, so less testosterone means less for the cancer to thrive on.
4. Radical Prostatectomy or surgical removal of the prostate gland. As it sounds.

I listened to their arguments for and against. I read the pamphlets. I joined a prostate cancer forum and asked other people who had prostate cancer about their treatments and found that they had all done a lot of research; and uniformly recommended the book Winning the Battle Against Prostate Cancer by Dr Gerald Chodak, which I mentioned and linked to in this blog.

I also went to a prostate cancer support group which was the most depressing thing I’ve ever been to. I appreciate the intent, but what an experience. One man had been told that day that he had less than 6 months to live and he was telling me how he was bewildered and horrified, struggling to comprehend a life of daily exercise, good diet and basically doing everything right and instead of looking forward to retirement in 5 or so years, he wasn’t going to be around for it; and a guy so depleted of testosterone that he had suffered massive weight gain, hot flushes, emotional swings, inability to reach an erection (and the lack of desire to do so with the depression of not having it) and more. I understand the purpose of the group and applaud the Society for providing this service, but it wasn’t for me. It could have just been that I picked the wrong day to attend.

With regard to treatment and side effects I want to reiterate that everyone is different. If you look at the side effects for any drug you take on the packaging or leaflet, most people don’t experience many of the potential effects, but the odd person could have severe reactions. I’m not trying to influence your decision. You need to make it for yourself and decide even how informed you want to be.

External Beam Radiation

As a poker player, 95% odds of success appealed to me. Imagine going into an 8-week poker tournament knowing you had a 95% likelihood of being in the money at the end if you followed instructions!

The center offering the treatment said they were prepared to provide my treatment at 7AM each morning, so I could go to work afterwards and have minimal disruption to my life.

The side effects to consider were:

• Hair loss in the area (not a worry)
• Mild fatigue (about that…)
• Frequent urination, weak stream and burning pain while urinating.
• Possible diarrhea, incontinence, impotence and proctitis.
• Reduced or no seminal fluid with ejaculation

Many of these side effects disappear a year or so after the treatment. Everyone is different.

Brachytherapy

Many of the symptoms are similar to external beam radiation, but instead of 2 months of radiation, it’s a brief surgery where radioactive seeds are implanted and that’s it. A key difference is that the side effects occur fairly soon after the implants have been placed and improve, where the symptoms of external beam occur later. Side effects include:

• Burning pain during urination
• Difficulty passing urine
• Rectal bleeding
• Sexual Dysfucntion
• Urinary Incontinence
• Bowel Incontinence
• Diarrhea
• Having to stay away from pregnant women (what if they don’t know they are pregnant?) and adolescent children.

Hormone Therapy

In the book I mentioned above, Dr Chodak explained that the treatment is more or less the same as what is known as chemical castration, the treatment that is used to stop sex offenders, because one of the primary side effects is that it reduces your libido or sex drive. Great if that means reducing the risk of a criminal reoffending, but not for a normal male, or in fact a normal couple.

• Loss of interest in sex (libido)
• Erectile dysfunction
• Hot flashes
• Loss of bone density and risk of fractures
• Loss of muscle mass
• Weight gain

Radical Prostatectomy

This is surgical removal of the prostate gland. The things that worried me the most were the risk of nerve damage and the potential to never be able to have an erection again as well as a reduction in penis size. Sorry of this is something that you find creepy to read, but it’s amongst the things I had to consider. If I was 70, these things might not be such a big deal, but I’m not and they are. In the USA this surgery is frequently done by a robot, but here it is humans and I don’t care how good the surgeon is, stuff happens, there is a high risk of at least partial nerve damage.

Ignoring infections and other things that can go wrong and potential risk of tumors crossing the enclosure holding the prostate gland in place (also a risk with biopsies and the Brachytherapy), side effects include:

• Urinary incontinence and/or urine leakage which can mean having to wear pads for 1-3 years or longer
• Trouble getting or maintaining an erection, potentially permanent
• Dry orgasms and loss of sensation and pleasure (and the impact of that on your partner)
• Infertility
• Penile shortening
• Bowel Injury

But Wait There’s More

So this is just scratching the surface. I read the book and it literally gave me nightmares. It wasn’t a short book and went into way more detail than what I have shared above. It was very thorough in explaining all of the details of the different surgeries and what factors you should consider based on the severity of the cancer, your age, your lifestyle. It helped me make my decision from a personal and clinical perspective, but I’m not sure I would recommend it. I was pretty upset and stressed out for a long time after reading the book. I can’t even bring myself to go back to it to quote parts of it to you.

My decision

I want to reiterate again that my decision was based on my feelings about the treatments, the people offering the treatments and my personal circumstances, my relationship (of course my wife was also part of the decision making process because it affected both of us), my age (I plan to be working for at least another 10 years), my family and obviously wanting to survive and live a productive and happy life.

I chose external beam radiation for various reasons.

• A 95% success rate is not to be sneezed at (unless you become semi-incontinent!). It’s no laughing matter either as people who have semi-incontinence can attest to.
• My granddaughter was 7 and I didn’t want to lost that special relationship of being able to sit next to her, have her on my knee or miss out on hugs. I was worried that if for her safety, I had to keep my distance that this  might have a long term impact on our relationship. You can’t get that back and she was too young to have been able to understand if I noticeably kept my distance.
• While it would impact on my ability to travel by plane for work, which I was doing 2-3 times a month, I could do some of the treatment over Christmas.
• Doing the treatment at 7 each morning meant that I wouldn’t have to take time off work.
• I wouldn’t have to risk sitting next to someone on a plane with radioactive seeds between my legs. Imagine saying to the airline, I’m flying on Friday. Please don’t seat me next to a child or a pregnant woman. What if the woman doesn’t know she’s pregnant? Okay please don’t seat me next to ANY woman. I wonder how many people do and if any women struggle with fertility as a consequence of having randomly sat next to someone on a plane or at a concert. I wasn’t going to have that risk on my conscience.
• The side effects seemed to be the least severe of the 4 options.

“I’m sorry, but you’re not in the 95%”

Unfortunately after 2 months of radiation treatment, when I had a series of scans to see how it went, the treatment was unsuccessful. I was in the 5% of people for whom it didn’t work.

I got many of the side effects, some very severe, but the cancer was still there. I may write about the year during and after the treatment for anyone that wants more insight into what it was like. From drinking a bottle of water every morning on the way to Mercy Hospital so that my full bladder would push my internal organs out of the way during the radiation treatment, being afraid that I couldn’t hold it, the painful urination, the loss of libido and erectile dysfunction, a feeling of loss of dignity, chronic fatigue, depression, needing to stay close to a toilet and on the other side, meeting some wonderful people, both fellow patients and those who helped me with treatment of my body and mind.

Another Choice

So then I had 3 more options. Brachytherapy wasn’t much of a choice given the radiation had already failed, so I had to go to hormone treatment, given I do not want the surgery.

This treatment was just pills, nothing more. I had side effects and continue to have some lingering effects. I had to make use of the counselling from a psychologist at the Cancer Society.

The end result was about 7 months ago my Oncologist said “You are in remission”. I had to ask what that means, because sometimes people talk about being cancer free. There is no such thing, but you can be in remission for years or decades.

This is important because I frequently read or hear stories about people being cured of cancer. As I understand it, there is no such thing. We all have cancer cells, they may be dormant or managed, either with treatment, diet or our immune system, but you do not get cured.

I am now on 3 monthly visits and in January had my 3rd one where my oncologist said my testosterone levels are good, my cortisol levels are lower than we would like, but I am producing some, I am still barely producing adrenaline, but my PSA levels are low and stable. I don’t have to go back for another 2 months.

Our 2018 singlets have just arrived. The 18 for 2018 is made up of the names of people living and sadly past who we are walking or running for on 10-11 March. The day after my birthday.

I’m in remission. I am focused on Relay For Life. Check out our Team Early Birds singlet. The 18 for 2018 is made up of the names of the people we are walking for over 18 hours. We are raising funds for the Cancer Society who do amazing work. They don’t take any money out of it for admin or running the society. It goes to research and supporting services like the psychologist who helped me and accomodation for people who have to travel a long way from home for their treatment. I’m on a mission to get people like you to donate $5 to this wonderful cause. Think of it as a koha for the time I spent writing this blog.

For those who are facing decisions like mine. I’m happy to answer questions and I will probably share more details of what it was like physically and emotionally to go on this journey.

In the meantime, I’m working on recording my EP of 4 songs called The Cancer Diaries. I am struggling with the rhythm guitar for the second demo, called Who Stole My Words and may need to call on one of the guitarists who offered to help me with this album to lay down a track for me. I hate asking for help but I need some with this.

I hope this has been informative and not an uncomfortable read. It is an uncomfortable condition as is any cancer and I hope that this blog is helpful. I hope that I can increase the number of people who get tested early beyond 20. I hope you will leave a comment, question, share, or make a little donation to Relay For Life.

 

 

 

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Shuffling of Papers

HOPE

Yesterday I arrived at the Oncology office to see my specialist, confidently expecting good news. I thought that he would be telling me that my PSA had dropped to zero or thereabouts and we could start looking towards 6 monthly catch ups, despite the fact that the fatigue and frequent bathroom visits continued.

He shuffled the papers and took a little while, with a big confidence inspiring smile told me that not everyone gets over the radiation quickly. He reminded me that no one gets cured of cancer, the goal is to achieve remission.

I took confidence from his smile and asked him about my PSA levels. He had another look at the papers, frowned a little and then told me that they had increased by about 50%. He said that I am in the 5-10% of people who take 6-12 weeks to get over the radiation treatment, gave me a form for another PSA test and a script for more Ural and we arranged another appointment in 4 weeks.

So, not what I wanted to hear. I’m still digesting it and what it means. I need to take some action steps.

1. I need to learn to pace myself at work and leisure. I’m not good at that. I’m at my best when I’m focused but when I get home I’m often asleep within an hour or less after walking in the door, even when I manage to get home early. Whatever I do one day impacts on the next.
2. I need to drink more fluid. It was much easier when I was going to radiation for 8 weeks and had to drink my bottle of water before I got there.
3. I’m starting to focus on Relay For Life and I hope you’ll join me in that, either supporting our team at Millenium on the 19th and 20th of March, either in person, or by making a $5 tax deductible donation Donation. $5 isn’t a big deal to any of us right, but I keep thinking what a difference we could make for people like myself if all of us gave $5. I’ve already used up the donations some of you have made with phone calls to the society, attending a support group (which costs money to run) and met people who get to stay at Daffodil Lodge for free because they don’t live in Auckland and it’s expensive to spend a couple of months here when you are getting treatment and not working.
4. I need to see a podiatrist as I have a sore foot. I don’t expect to do 50km this year, that’s probably not consistent with pacing myself, but I don’t want to be cut short by a minor injury either:)
5. As of this morning I’ve gone back on Pomi-T again. It didn’t help before, but I still have plenty and it can’t hurt.
6. Focus on quality of life. Play my guitars more, write some more songs and have fun with my friends and family.
7. Look forward to a better PSA result in 4 weeks time.

Thanks so much to you all for your support and positive vibes. It means a lot to me. I really am serious about the $5 donations. It may seem hardly worth the effort for the price of a regular flat white, but it truly is, both in lightening my spirit and in everyone giving a little, we actually give a lot. Can you do that for me? Don’t worry about the donations buttons for bigger amounts. I have so many connections, if each of us only gave that amount (which is tax deductible) it would add up to something meaningful for the Cancer Society, but each little one will also put a big smile on my dial and smiles generate endorphin which makes you feel good.

 

I have Prostate Cancer

HOPE: Taken in the 2013 Relay For Life when I did my first marathon distance (took me almost the whole 24 hours!)

I was of two minds as to whether to share this, but it is one way of telling my friends, readers, colleagues and associates without having to tell the same story to everyone over and over. It’s not an easy subject to talk about. I’m not comfortable telling it and I know other people find it awkward to know what to say to me, so this is an easy option for all of us. Of course most don’t know yet because it was only a couple of weeks ago that I found out that it is serious.

Technically I shouldn’t know that I have cancer. I only know because my wife kept pushing me because of the health advertising and the fact that we have a huge number of people in New Zealand who have it.

I went to the doctor and said I believe there is a PSA blood test I can get and he firmly prompted me up onto the medical bed in his surgery and told me to drop my pants for the digit test. I didn’t want to but had complied before I even realized what was happening. I’ll spare you the details, other than that my virgin sphincter was sore and uncomfortable for a little while. Since that time I’ve become accustomed to being poked and prodded by strangers and am getting used to it. I know on the scale of 1 to 10 of things people endure, this doesn’t even get off the starting blocks. For now anyway.

The main point of this post is that my PSA at the time was 3.2. The doctor had been monitoring it in blood tests previously and whilst it was within normal levels, it had been increasing every test, always up. So we agreed at I should go and see a urologist.

I had a biopsy about a year ago and they found a few small malignant low grade tumors and I opted for active surveillance. I should have had another one 6 months ago but we seemed to miss each other. I tried eating very expensive sea cucumber TBL12, which didn’t agree with me very much in taste and made me feel queasy, but it was worth a try. Some people swear by it.  I also tried Pomi-T, a herbal extract approved by the FDA, but when I had another biopsy in October I was up to 4-5 tumors, still low grade but growing quickly.

So here’s the thing. There are a lot of stories and debates about whether you should be tested. Many people say that you’d be better off not knowing,  but if I hadn’t, in another  year I would probably be in a significantly worse situation and I’d still be in my 50’s. I might think differently if I was in my 70’s or 80’s.

I was keen to continue active surveillance which means more biopsies and tests, because most of the time I wouldn’t be thinking about it (but you do). The specialists strongly urged me to reconsider and having read extensively and asked lots of questions, I have opted for external beam radiation. If anyone wants to know why, I’m happy to explain my rationale, especially if you are going through the same process. Ultimately it’s a personal decision. They all have nasty side effects, but it has to do with age and lifestyle. I start radiation on 7 December for 8 weeks.

This particular blog is going to focus on whatever I feel like writing about, which is not business. It has always been my soapbox. So if you want more about technology, location based services and futurism, I suggest you ignore this one and follow me at SoLoMo Consulting and The Future Diaries.

The one hope I have from this, besides helping me process my feelings through this time, is that someone who was resisting the urge to get tested might give it a go. Already I know of one person who has been putting it off for years has made a doctor’s appointment. I read some statistics that said PSA tests have false positives and only 1 in a large number of people tested actually end up having cancer. Therefore getting tested is a waste of time.

So I’m that one in a large number whose life will be saved through getting checked out, despite having no symptoms or problems. I like living. I haven’t achieved everything I want to achieve in my work, haven’t seen all of the world and enjoyed lots of special family moments yet to come. I have music and songs to write and perform. I have many more trips to make around the sun. I still have a big bucket list.