In my case, the development of a bone metastasis was the confirmation that my cancer was back.  This was extremely important for two reasons: (1) it meant my initial and secondary (upon recurrence) treatments didn’t work and that the cancer was no longer curable, and (2) it hurt like hell!  While I have been able to keep it from spreading further for over eight months, it is still there and I would not be able to walk without a constant dose of morphine.

While the pain was very real, it wasn’t until I saw the bright spot on a bone scan that I had visible evidence that I could look at, relate to, and show to others to explain what was happening.  I have had several treatments on this spot (radiation and experimental high-intensity-focused-ultrasound) that didn’t eliminate the pain and it has been scanned so many times, there is no doubt that it is there.  But I still had that pleading little voice (smaller now) telling me it could be a mistake, so I asked one of my doctors if I could see it on the MRI scan.  He showed it to me from several angles and I could see quite clearly that it was there and, while relatively small (1×2 cm), it was very near the sacroiliac joint which probably accounted for the tremendous pain it caused.

So it’s there.  No doubt about it. But somehow I feel a bit better having seen it and I no longer hear that little voice.  Is this a good thing?  Perhaps.  I think it is for me, but maybe for others, it might be better to have that little bit of uncertainty to hold on to.  My advice – if you really need to know, just ask your doctors.  If you’d rather not, don’t ask to see it but don’t stop treating it and hang on to that little voice and the fragile hope it offers.  There’s nothing wrong with that.  We all need hope.  I hope for a cure which, as elusive as that may be, can happen and it’s better than hoping it’s all a mistake.

At least for me.

Posted by Doug

Now, getting this kind of news alone can really bum you out, but they suggested I come back in another 3 months because, in a small number of cases, the PSA can take longer to drop. You might think this is good, but it really isn’t because it can create another long, depressing period of uncertainty and, even worse, give false hope.  But this isn’t going to be the case with me because I have educated myself thoroughly and I know what the odds are. And I’ve had lots of time (since my recurrence 6 months ago) to think about all the possibilities and likelihoods and come to grips with it.

It sucks, but it is what it is and I have to get on with life. And that means living each day to its fullest and learning how to be more than this disease. There is no cure beyond the unsuccessful treatments that I have already tried (surgery & radiation) but there are things I can do to slow it down. That means that I can fight it knowing that each year I get increases the chance that something new will be developed to give me even more time.

This is a good place to be and I want to enjoy it for as long as I can.

Posted by Doug

Written by a medical oncologist, it explains why those feelings of dread and terror are so common, despite the fact that over fifty per cent of all people with a newly diagnosed cancer will be cured. This book will help you understand the basic facts about the two hundred (or more) diseases that make up ‘the cancers’ and will give you a road-map so that you can ask the right questions of your medical team and understand the answers. It will give you a clear and accessible guide to the unfamiliar and daunting territories of diagnosis, staging, treatment and prognosis (among other things).

If explains what the future holds in a straightforward six-step guide. It then goes on to discuss the methods of treatment (surgery, radiotherapy, chemotherapy and biological therapy) and then other major issues such as the effect of the mind and attitude, the popularity of complementary remedies and other subjects.

Dr Robert Buckman is a medical oncologist at the Princess Margaret Hospital, a Consultant in Education and Communication and a professor in the University of Toronto. He appears on television and radio discussing aspects of health, particularly cancer treatments.

One of the really nice things about Dr. Buckman and this book is that a portion of the proceeds from the book goes directly to cancer research!

Posted by Doug

Cancer is a game of numbers. Treatment options are based on statistical, historical studies of large numbers of people. If you happen to fall neatly into certain categories it may seem obvious which way to go, but we are all unique and no one can predict with certainty what will happen to us based on our choices. But we have to make them, because not choosing (or choosing to do nothing) is, more often than not, a death sentence. So we choose our doctors, we choose between radiation and surgery and chemo. Sometimes we choose when to start. And then we throw ourselves at the mercy of those who know what they are doing and who have our best interests at heart.

It is very, very important that we never second guess these choices. While you may be able to stop a course of therapy, there is really no way to reverse or go back. And since we cannot predict the future with any degree of certainty, we certainly can’t answer the “what if” questions. What if I had radiation instead of surgery? What if I had opted for high-dose chemo? What if I had insisted on adjunctive therapies? Maybe you have choices going forward, but you can’t undo the choices you have made.

So make your choices with the best information you can, with the strongest intent you can muster, and put your faith in those you trust. Its the best you can do. Never look back or second guess those decisions and choices. There is nothing you can do about it and it will tear you apart. You have enough to deal with without blaming yourself for “wrong” decisions. And if your original choices don’t work and the cancer recurs or spreads…… well, you did your best, and now you need to make new choices. Take what you have learned and move forward.

Posted by Doug

My dad was diagnosed with prostate cancer.

I have stopped trying to make sense of why so many terrible things have happened to our family in the past year, because it just leads to anger & frustration. The only thing I can do now focus on the positive of the situation at hand; “at least it’s not lung cancer or a brain tumor!”. And even though most people say “well it is one of the most curable forms of cancer” it’s still hard for me not to be pessimistic the way things have been going.

His urologist says it is 90% likely that removal of the gland will result in a cure and he will live another 30 years. I hope he’s right. On the bright my dad is in otherwise great health and great physical shape which should bode well for his recovery.

His surgery date is October 25th @ 8am. I’ll be sure to write again post-surgery to share how everyone is doing.
Posted by David

For me (and I suspect for most), the initial diagnosis was a blur. I certainly wasn’t expecting it (I was told that the lump on my prostate was “probably nothing”), but I definitely wasn’t in my normal analytical mode. My appointment was first thing in the morning after a long weekend and, while I know I ruined the doctor’s day, it sure started mine off with a bang. I was in a suit on my way to a meeting with clients. I was expecting to be told that it was nothing, so this hit me like a lightening bolt. The doctor read me off a bunch of facts and laid out several options to consider and then sent me on my way. I stopped by the house to tell my wife and then left her to go to my meeting. I had a bomb dropped on me and then I dropped one on her and left! I didn’t realize the significance of that until much later. Bless her for not reaming me out, because I deserved it. She had just been diagnosed with the same emotional disease as I, and I went off worrying about myself! Does that make me a selfish boor or is that “normal”?

For the rest of the week, we both dealt with the diagnosis in different ways. I told no one else and I completely avoided focusing on it. It was there, but it was like a dark cloud hanging over me that I refused to really acknowledge. Denial? Shock? Normally, I would be all over the Internet and in the bookstore researching everything I could find, but I didn’t even hit a website until the weekend. Meanwhile, my dear wife was buying books, phoning support groups, contacting doctors, all on my behalf. She was looking for help for me, not even thinking that she may need help too.

So I ask you – how could I have handled this better? Do you think you need some denial time to allow yourself to adjust to this new reality? Should I be chastised for treating my wife badly? Do I really need to feel guilty about this?

Let’s leave the doctors out of this for now (we’ll deal with that more specifically in a future blog). Let us know your thoughts. Tell us about your immediate post-diagnosis experience. Was it the same? Was it worse? What are your thoughts on how to handle the impact on our loved ones? If you are the spouse, child, lover, parent or friend of a cancer victim, what are your thoughts? What were your experiences?

Let’s talk.

Posted by Doug

Let’s talk.

Posted by Andrew

Did you keep a diary? Do you still keep it up to date? Did it help? Did you share it with anyone? Do you look back on it often?

Let’s talk.

Posted by Andrew

I went to work, I cut the grass, and I took out the garbage – all the things that show life goes on, but I lost all interest in current events. I hugged my wife a lot, but I didn’t smile much and rarely laughed. I think I cried once. All I could think about was the cancer and all I could hold on to was the hope that I would get a surgery date soon.

I finally got professional help from a wonderful psychologist and a kind doctor who carved out an hour for me every Friday just to talk. And I spent hours with my dear wife. Sometimes we talked, but sometimes just being together was enough. I only had a few friends to talk with because most people just don’t understand and many don’t really want to talk about it. It was a tenuous time and I don’t know what would have happened to me if my surgery had been delayed.

Tell us about your experience and how you coped. What was the impact on your loved ones? What did they think?

Let’s talk.

Posted by Doug

Everyone has different needs regarding the amount of information they require. Remember, you are the expert of you. Work with your health care providers to help you determine what you need to know. Let them know what is important to you, so that they can guide you in collecting information.

Ask a lot of questions. There is no such thing as a dumb question. And always feel free to get second or third opinions.

Did you get all of the information you needed, when you needed it? Did you have some kind of process for collecting and maintaining it? Did you have any difficulty getting the answers you needed? Where did you get your information? Did you get too much information?

Let’s talk.

Posted by Andrew