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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Twice in one day! My journey with photons.

As I was sipping my pleasantly flavored urinary alkalinizer this morning,  I was thinking back to yesterday. Because I had a few radiation free days over Christmas, I had to go in to the hospital twice for my photon blast. Sounds a bit like a cocktail drink doesn’t it. Maybe I should invent one when I’m better. It’ll be a purple drink that will knock your socks off.

When I got home after the second bout I was planning on playing guitar or something but I didn’t really have the energy to do anything.

It’s an odd feeling. I was expecting to feel tired and I did, but its a different type of tired. The radiologist defined it quite astutely this morning, if not a little close to the subject of attention, when she said “A lot of men find themselves feeling knackered when they have two doses in one day.”

In my part of the world knackers are slang for testicles if I need to be any clearer, but in this sense it relates to the exhausted state at which horses or other livestock are no longer of any use to their owners and are sent to the knackers yard to be rendered into pet food or other items of greater usefulness.

Anyway, I was feeling a little more energetic as I got changed this morning for day 19 of my treatment. Back in the groove as it were, getting into my lava lava, chatting with others in the waiting room and then heading for LA 3 to watch the purple light on the radiation machine spin around my torso.

I feel like I should be doing something like walking, or painting the fence. But I might have to be a bit like rally driver Possum Bourne’s uncle who I used to work with at Tait Electronics. He said to me that whenever he felt like going for a run, he would lie down until the feeling passed.

I have written a speech this morning, which I hope to be allowed to give at a dear friend’s wedding next week, so I haven’t totally wasted the day.

Anyway, I hope you’ve all had a great Christmas and wish you safe travels if you are heading away to celebrate New Year’s Eve. I have 3 days off treatment and will be joining the throng heading for the winter-less north, although I have been receiving weather forecast emails containing severe rain warnings. Not a problem though, I’ll have a guitar or two with me and good company. I wrote the song Raglan Rain on just such a trip. Maybe my muse will come with me.

The Decline of the Radio Station

Auckland got a new radio station yesterday Big FM. I was interested to see how they will position themselves as unique, because in my humble opinion there is not much difference from one radio station to the next. My first impression was a cross between classic hits and classic rock, but I’ll have to let them grow for a while to find out what their identity actually is. The problem for me and for them is that I no longer listen to much radio.

In New Zealand we really struggle for variety. Pretty much everything is mainstream and the reason for that is that we have a small population, only a little over 3 million people over the age of 18 and a total of only 4 million. There is no venue for special interest music such as jazz, blues, country, world and alt on our airways. Cool Blue Radio was around fora while which had a mix of jazz, blues and country and no DJ’s, but this now only exists on the net, where it competes with every other radio station around.

Radio in some ways mirrors the ails of the recording industry. It does very little that is new and doesn’t even use much of today’s modern technology. Everything is mainstream, there are no thought leaders, visionaries or radicals any more. Back in the day we had pirate radio stations like Hauraki, Veronica and Radio North Sea which captured the rebel in us, played great music but also challenged the norms of society. The problem is that today everyone is PC, the challengers of the past are the conservatives of today.

There are lots of things that radio stations could do. Yes, some are showing webcams of the studio, most have streaming radio on the net and some go further with things like background or in depth coverage of news stories, but that is about as far as it goes.

In New Zealand there are less than a handful of radio stations that effectively use the RDS band. RDS is the text area on your radio, especially in your call that provides information such as the station identifier. In Auckland only Radio ZM uses this to tell you the artist and name of the song. Some stations like George FM have info about the DJ’s, a song or text in promotion, but that’s about it. I was dissapointed to see that the new Big FM doesn’t do anything more than the station identifier. There is so much that they could be doing to be more modern and in tune with the world.

A while ago I wrote about new technologies coming to your car including Satellite and HD Radio. Recent news is that there are (as usual) battles over which sort of satellite radio system to use and as to HD Radio, which is being test broadcast at the moment, and the concensus in the industry is that it will be a long time before these technologies become commonplace. I also wrote about the fact that record companies have been ripping us off for years and not giving us value for money which started as a post about Ringo Starr’s innovation with the Live 8 Flash Card.

A few weeks ago I was approached to do a radio diary. You know the survey diaries they use to show marketshare of the radio stations by demographics and total listeners. I couldn’t do it because these days I hardly ever listen to the radio. I listen to podcasts all the time. Some of them do come from radio stations, but not local ones. I listen to Digital Planet from the BBC, The Music Show from ABC National Radio in Australia, Radio Free Amsterdam and the list goes on. As well as feeling like I have a relationship with the DJ, they use new technology, they are almost advertising free. On my Ipod I see images, have links to artist information and other enhanced services to go with these programs as well as in some cases also video.

A key thing with podcasting is that I can listen to pretty much anything I want. Every kind of music is available for free. Many people don’t realise the range of podcasts that are available and think they have to buy music if they want to use iTunes, but the reality is that if you have an eclectic taste, or just feel like listening to a particular genre right now, that you can do it. In the past I would have the radio on all day when I was at home. Today I rarely even listen to my CD’s, even though I keep buying them:).

We have lots of great artists coming to New Zealand for concerts this summer and I am trying to work out which ones I will stretch my budget to see. In the past I would listen to their promotions on the radio. Now I can go to YouTube and listen to dozens of tracks from all of these artists, including lots of live show clips so I can see if they actually put on a show which is worth spending hundreds of dollars on.

Even if I don’t watch the video clips I can effectively listen to anything I like and I have struggled to come up with any songs or artists I can’t find on Youtube, including myself. If I want to explore a theme, like Christmas, or pretty much anything, or listen to artists similar to a band I like, I can go to Ilike and have my very own personalised radio show, where I can rate the songs I listen to and it becomes more and more the station that plays ecactly what I want to listen to. If you want to hear other artists that sound like me you can go to Ilike and key in Luigi Cappel and you will hear at least one of my songs and then other artists of a similar ilk.

So if you are program director for a radio station, what are you going to do to compete with the Internet? How are you going to get me back to listening to the radio, so that you can sell advertising and put bread on the table? I have to tell you, you are doing a pretty poor job right now, The way you do things right now might do ok for breakfast radio, maybe drivetime (with real time traffic) and talkback, but beyond that, you are competing with products that are far better targetted and if you don’tdo something about it, you may have to look for a new job. If we do get Satellite Radio sorted (and the shelves of retailers in the USA are littered with receivers) consumers are going to have an international choice. They can find the stations that they relate to and I suspect that the percentage of people listening to local radio will rapidly diminish unless you wake up now. Don’t be like the record companies, hide your head in the sand and wake up one day wondering what happened!

While this blog is starting to get a good following, I would love to get more readers and encouraging me to keep writing. If you feel that my blog is interesting I would be very grateful if you would vote for me in the category of best blog at the NetGuide Web Awards. Note that the form starts each site with www whereas my blog doesn’t and is of course https://luigicappel.wordpress.com.

Thanks so much for your support:)

It’s going to be a tough Christmas

With the state of the economy,things are going to be tight for a lot of people this Christmas. According to the NZ Herald this morning, “The trend in supermarket and grocery sales have been declining since March , the longest trend since the series started in 1995.”

First of all I need to admit that I got it wrong. I thought that with petrol prices going up that we would be like frogs who get thrown in a pot of cold water, that we just put up with the rises, but the reduction of cars on the road in Auckland is clearly noticable.

Last year the newspapers were full of stories of domestic violence at Chistmas time and womens refuges were overflowing with people hiding from their partners or other family members. I suspect this year will be much worse. The retailers are suffering as are many sectors of the public, who won’t be able to spoil their families this Christmas. The pressure on low income families will be particularly bad, and as I have blogged before, the retailers have been giving delayed payments and interest free terms for so long that many people are in debt up to their eyeballs already.

There is also likely to be an increase in burglaries as those who can’t provide for their family or young people whose hopes for cool presents are dissapointed decide to help themselves to other people’s property. Most at risk will be people who leave their homes vacant while they head to their batches or camp grounds. I’d recommend they look at their home security and communicate their plans with their trusted neighbours.

Is there anything you can do to help? There will no doubt be many Christmas Charity events. Why not check out your neighbourhood and see if there is anywhere you can help. My brother in law alway made his children pick on of their brand new presents and take it to the City Mission.  Auckland City Mission is already well organised in their campaign to help people have a better Christmas. Each person who gives something at Christmas is going to feel much happier than those who didn’t. The Auckland City Mission will be hosting a Christmas dinner for 1200 people and need gifts and support. They have a page were you can find drop off points where you can leave a gift. So when you are off doing your shopping, buy something extra and feel good about putting a smile on someone’s face. I will.