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Photo by George Guille, It's going to be a long 300km... Bolivian Amazon

I haven't been everywhere...
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Photo by George Guille
It's going to be a long 300km...
Bolivian Amazon



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  #106  
Old 11 Sep 2012
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This must be nothing but a speed bump in the road for a man like you.

See you on the road some day Grant.

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  #107  
Old 30 Sep 2012
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Smile Grant's status - from Susan

It's been awhile since I updated folks on Grant's status, and many of you have asked about him so I'm pleased to report that he's getting stronger and healthier every day, walking 2-3 km a day now. Good news is his hair and beard are growing back, so I recognize him again ;-) He actually needs a haircut for the first time since March - how cool is that!

In mid-September, his PSA was tested is <0.04, so that's as good as it gets. As a result of the clinical trial, his PSA will be monitored quarterly for the first year or so, and at least annually for the next 15 years.

Even better news - the pathology report came back with no positive surgical margins and no evidence of spread to the seminal vesicles. The tumor (and the prostate) seem to have shrunk, presumably as a result of the chemo and hormones. The surgeon says no further treatment is needed at this time, so we are truly grateful for that!

We do know that he will have to be vigilant, can't slide back into old habits. For both of us, the diagnosis has been a wake-up call, and we have made significant changes to diet, supplements, exercise and lifestyle, especially stress management. FYI, eating is not really a useful response to stress ;-) We have scaled back our work hours to something closer to 40+ hours a week, and we will be trying to get a couple of weeks vacation in the next year. FYI, going to HU meetings doesn't count as vacation, though we do love them ;-)

Many thanks to all for the kind wishes and support. It's wonderful to have such good friends around the world, and we know all the positive thoughts have made a difference to the outcome :-)

Current plans are to be at the HU meeting in Cambria in October, maybe we'll see some of you there, or at an HU Meeting in 2013, or on the road someday, somewhere...

Cheers,
Susan

P.S. For anyone that's interested, there's a list of the books I consulted during my research on prostate cancer a couple of posts below.
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  #108  
Old 30 Sep 2012
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Excellent news !

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  #109  
Old 1 Oct 2012
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Great to see these past couple of posts from both of you. Hope the recovery continues as well as it seems to be.
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  #110  
Old 1 Oct 2012
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Smile Prostate Cancer research

In response to a recent request for the book list I mentioned, I thought I should post it here so it's available without having to ask for it. These aren't the only books I read during my research, just the ones I would recommend.

I'd start with A Primer on Prostate Cancer by Stephen Strum. Don't get the Kindle edition. The printed version has lots of useful charts and diagrams which are almost unreadable in the electronic version! Pretty comprehensive, with some bias towards hormone therapy.
A Primer on Prostate Cancer: The Empowered Patient's Guide | Horizons Unlimited

Definitive Guide to Prostate Cancer by Aaron Katz. Bias is to cryosurgery, also good section on diet and supplements.
The Definitive Guide to Prostate Cancer: Everything You Need to Know about Conventional and Integrative Therapies | Horizons Unlimited

Beating Prostate Cancer: Hormonal Therapy and Diet by Dr. Snuffy Myers. Everything you want to know about hormone therapy. Beating Prostate Cancer: Hormonal Therapy and Diet | Horizons Unlimited. Although the book is 2007, so getting a bit dated, the author has a website and newsletter that he keeps up to date.

Intelligent Patient Guide to Prostate Cancer by Larry Goldenberg. He's a surgeon who works with Dr Martin Gleave, who did Grant's surgery. This book is originally 2001, so somewhat dated on the treatments, though very good on understanding surgery.
Intelligent patient guide to prostate cancer: All you need to know to take an active part in your treatment | Horizons Unlimited

Dr. Patrick Walsh's Guide to Surviving Prostate Cancer by Patrick C. Walsh. Written by a surgeon, more up to date than Goldenberg's book, bias is obviously to surgery and dismissive of nutrition etc.
Dr. Patrick Walsh's Guide to Surviving Prostate Cancer | Horizons Unlimited

Invasion of the Prostate Snatchers, by Ralph Blum and Dr. Mark Scholz. The author has a low-risk cancer and has treated it for 20 years without surgery or radiation. Entertaining, and makes the case for avoiding radical intervention IF your cancer is low-risk. Don't let it be the only book you read, though!
Invasion of the Prostate Snatchers: An Essential Guide to Managing Prostate Cancer for Patients and their Families | Horizons Unlimited

Beating Prostate Cancer without Surgery by James Priest. It's a doctor's story (not an oncologist) about his experience with prostate cancer and radiation treatment, with some research behind it, mostly anecdotal. In my view, not as useful as the others.
Beating Prostate Cancer without Surgery | Horizons Unlimited

Two things to remember when you're reading all these books. First, each author has some bias towards the treatment they are most familiar with, but if you get through all of these you'll have a pretty balanced picture overall.

Second, unlike a broken leg, there's no definitive treatment for prostate cancer, regardless of what each specialist might tell you. It's all about risk assessment. You want at least 2-3 opinions, but also need your 'scores' - e.g. Gleason (how aggressive is the cancer), Staging (TNM), and of course your age and other health conditions, to assess your own risk. These books will help with that.

Remember that you do have time, if you catch it early. Don't panic and just accept the first treatment that's recommended. Do your research or ask someone you trust to do the research so that you can focus on your healing.

All treatments have QOL impacts (e.g. impotence, incontinence), some of which may be permanent, plus risk of secondary cancers, so you really have to look at risk vs benefit. I spent a lot of time tracking down results of research studies to see which treatments showed long term benefits. I tried to be as objective as possible so that Grant would have the information to make an informed decision without my censoring it (my 25+ years as a consultant made me a good candidate for this job!)

Because most men will get PC at some point, and it is slow growing anyway, the older you are the less aggressively you want to treat it. Grant was told if he did nothing he'd probably live 10 more years, but he's only 63, so that's not long enough! The good side of that is that the younger you are the better able to recover from treatments such as surgery or chemo.

I must also mention that whatever conventional treatments you decide on, or even 'active surveillance', you will need to take a hard look at your lifestyle to mitigate the side effects of treatments and reduce the risk of the cancer recurring. We were fortunate to find Inspire Health, an 'integrative' cancer care practice in Vancouver, and attended a 2 day workshop featuring presentations by experts on diet, supplements, exercise, meditation, stress management, massage, acupuncture etc. They don't suggest you forego conventional treatments, but augment them with some or all of the above.

Our Inspire Health MD prescribed certain foods and supplements for him that really helped when he was undergoing chemo and hormone therapy, to keep his immune system as strong as possible and counteract side effects.

I changed our diet a lot as a result of what we learned from them and other research. For example, we haven't given up meat or poultry or dairy, but we have gone organic and grass-fed to reduce risks from chemicals, antibiotics and hormones from conventional agricultural practices. We are eating less sugar and grains and more veggies and fruits, and have completely eliminated soft drinks from the diet. I shop from the outside of the supermarket now, and cook a lot more from scratch, which does take time but once you start looking at ingredient lists on most processed foods, you don't enjoy eating them as much!

Although we didn't do much serious meditation, slowing down to appreciate life really helped, and we are now doing daily walks of at least 30-40 minutes. As Grant gets stronger, the plan is to add some weight training, yoga or tai-chi and more stretching to that.

Anyway, would strongly recommend you assemble a health team that includes at least a nutritionist and naturopathic doctor in addition to your oncologist.

Forgot to mention a great book not specific to prostate cancer, but highly recommended and inspirational - Anti-cancer A New Way of Life, by David Servan-Schreiber.
Anticancer: A New Way of Life | Horizons Unlimited

Cheers and best of luck in your journey,
Susan & Grant
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  #111  
Old 4 Oct 2012
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Hope it's OK to post a supplement to the last post....
Thanks for the list of reading, and all the good suggestions. It's all good stuff. There's lots of advice out there so it makes sense to explore it all.

But, if you delve into a book and you feel it isn't good for you - stop reading straightaway.
I've found one or two books like that. One in particular I carried on reading for some reason. Went too far into it before I stopped. Wish I hadn't started reading it at all.
So take care.

Good to hear the news. Keep enjoying everything you do.

Lastly, can you translate the "Canadianism" (at least, I've never heard of it!)

Quote:
Originally Posted by Susan Johnson View Post
I shop from the outside of the supermarket now,
What's that?!

All the best.
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  #112  
Old 4 Oct 2012
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Hi McCrankpin, thanks for the comment, which is absolutely right. There were books I read that I didn't share with Grant because I didn't want to depress him. Staying positive is so important to your healing.

I should also have mentioned that once you have embarked on a course of treatment, don't read or listen to any negative comments about that treatment. In particular, on the forums you will always find people who have had a bad experience with a particular treatment, but they're not you. It's really important that you believe your course of treatment will be effective for you. Remember, every cell in your body is eavesdropping on your thoughts!

Re shopping - not sure where the expression originated, but it isn't Canadian. Refers to shopping from the outer aisles (rather than outside, sorry!) of the supermarket first, where the produce, dairy and fresh foods are, and avoiding the center of the supermarket where the processed foods are.

“And if you stay at the outer aisles ... you try to avoid going in and getting the processed, packaged foods,” Michelle Obama

Google 'clean eating' for some good sites, including an excellent magazine by the same name.

Best,
Susan
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  #113  
Old 5 Oct 2012
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Grant's health.

Hi Grant & Susan. Great news ,we wish you well and thank you for 'Horizons Unlimited' . Hume& Jane.
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  #114  
Old 5 Oct 2012
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I am very happy to read that Grant is doing so well now and hope to see the two of you again at some HU meeting.

Thanks for all the work you are doing for us.
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  #115  
Old 5 Oct 2012
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Grant it's good to hear your on the right side of the road heading in the right direction, good luck with your continuing recovery. My work partner (now aged 74 had this three years ago and he is back building dry stone walls so he has made a great recovery and moved on in life and is younger than ever with real purpose - I hope you will be back up and running at full speed in the not too distant future. Regards Jake.
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  #116  
Old 2 Nov 2012
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Right on target

It is certainly a relief to note that you two have done your research and decided to win this battle. More people die of fright than die of cancer and it's amazing to discover how many people when diagnosed simply go home and wait to die.

Two and a half years ago my biopsy revealed a Gleason Nine (4+3) and by now, you know what that means. However, due to an enormous amount of community support, an immediate diet switch to total organic and some other secret stuff, followed by robotic surgery at City of Hope, I am still pulling zeros on my 90-day PSA tests and fully functional. Two years post surgery, I've graduated to six-month testing for another two years and then it will be annually.

Once I had a surgery date, I committed to, at the tenth day out, riding my bike to the gym and making love to my woman that night. Both were not easy at first, but...mission accomplished. In less than a month, with the help of a little blue pill, it was although nothing ever happened and I was back to normal, just twenty pounds lighter.

Rocky, from Bill Mayers saddles, developed an anatomically correct seat with an eight inch long, two inch wide, two inch deep grove, right where you can imagine we need the relief for those ever-so-delicate nerves still dangling around. That was a tremendous help and highly recommended.

Now on a sugar-free, organic diet, I am healthier than I have ever been and at age sixty returned two months after surgery, to wrestling three times a week with a roomful of alpha-males a third my age. This ain't easy either but it does enhance the willpower necessary for more of life's challenges to come.

And for you forty-plus guys out there, you need to get tested every year. And unfortunately, the real test is the dreaded digital rectal exam which is about as pleasant as a PAP smear for you women. Basically, a doctor needs to touch the prostate to feel for anything hard like a tumor.

The doctor who invented the PSA test recently wrote an article regretting having done so because it is so unreliable. Many things can trigger a higher score like sex the night before surgery, riding a bike or anything else that can irritate your prostate. Elevated scores can trigger biopsies whether needed or not. Conversely, some of the most aggressive tumors can actually show lower scores. The PSA test after surgery is critical though because any sign of PSA means that prostate tissue lives somewhere.

One other important note is that all doctors are not created equal and it is best to research them carefully. For instance, when it comes to Da Vinci surgery (robot assisted), a surgeon with less than five hundred surgeries under his/her belt is thought to be still cutting their teeth. When considering the potential outcomes, I found a surgeon who had done three thousand surgeries. And from one cancer survivor to another--CONGRATULATIONS!...life is good!
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  #117  
Old 3 Apr 2013
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Update on Grant's health - from Susan

Just thought I should update this topic. We had a health scare in early February. Grant woke up at 7 am (very unusual!) on a Saturday morning and announced that he thought he was having a heart attack! I called 911 and within 5 minutes we had a paramedic in our bedroom! We now live about a block from a fire station, which as we get older I think is a great thing... A few minutes after that the ambulance service arrived and, though they couldn't find any sign of a heart attack, they took him to the ER in an ambulance.

He had several sets of blood tests over the course of several hours, an EKG, an echocardiogram, a CT scan, nothing found. Meanwhile, he's on a morphine drip because the pain is so intense, and this goes on for hours! Eventually around 4 pm a cardiologist says he thinks it's pericarditis, which I had already thought might be possible (from searching on the web while we're waiting around for test results), as the pain was much worse when he was lying down and it hurt for him to breathe deeply.

Anyway, the cardiologist prescribed ibuprofen, about twice the normal dosage, to reduce the inflammation around the pericardium, and sent him home. Inside of a couple of days it had improved, got better steadily for a couple of weeks, then plateaued. His GP changed the anti-inflammatory to Celebrex, which he is still on, and it's improved a lot, but not completely gone - apparently it can take months to resolve, and it can recur. :-(

Pericarditis can be caused by a bacterial or viral infection, and can affect even 20 year olds, but he hasn't had an infection, so it's a mystery why he got it. Maybe some delayed side-effect from the chemo treatment, which can have long-term effects. But we'll probably never know for sure. Obvious, really, that just because you survive cancer doesn't mean that you'll never have another health problem. But if it ever comes back, at least we know it's not a heart attack!

I'm recovering from bruised ribs caused when I fainted in the ER - first time that's happened to me ever! Still hurts to sneeze, but otherwise not bad.

On the prostate front, it's all good news. He had PSA and testosterone tested end Feb. His PSA is still zero, and his testosterone is finally back up to normal levels. The hormones from the clinical trial had knocked it down to zero, which is definitely not good - look it up! Still watching diet and stress levels carefully. But all in all, we're not doing too badly.
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  #118  
Old 3 Apr 2013
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I hope things right themselves sooner rather than later. It sounds I've you've both been through it recently.

On the plus side, 5 mins to get a Paramedic is excellent!

All the best.
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  #119  
Old 3 Apr 2013
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Sorry to hear you've been through more upset. I truly hope things improve endlessly, take care both of you!

Best wishes Jim
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  #120  
Old 16 Apr 2013
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Grant and Susan.
I am sorry.
I have just found this and feel like i should have said something sooner. I am glad that that is my only regret and i have the chance to tell you that.

Grant I am very happy that you are okay (at least on the mend and moving up wards). I have been here (and in person) a very long time and consider you both friends (not just virtual ones) my thoughts are with you.

your work changed my life. you have a legacy that has effected many. I am very glad you can continue to make that difference.

Good luck with the rest of your recovery
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