talkingaboutcancer.com

Cancer does terrible things to your body and to your mind.  Sometimes, it can initially be discovered without any real visible signs and, however hard the treatment may be, you may never actually “see” the cancer.  It’s kind of like having a car mechanic tell you that you need an expensive part replaced when you didn’t even know there was something wrong and you never actually see it.  While I generally trust doctors more than mechanics, there is always a little voice in the back of my head that wonders if it’s all really happening.  Maybe it’s all just a big mistake!  That has certainly been the case for me, even though there is plenty of evidence to prove that it is really happening.  Perhaps it’s just a form of denial or maybe even a form of hope.

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

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Well, I met with my oncologist earlier this week to get the results of my three month (post-radiation) PSA and didn’t hear what I wanted. I’m not sure what I expected to hear, but I was advised that my PSA was unchanged. This suggests that my 33 days of radiation treatment didn’t work or, if it did get the cancer in the treatment area, there is more elsewhere.

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

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This is an other wonderful book that we highly recommend. Described as “A Practical Guide to Help you Through the First Few Weeks”, it is a book that should be given to everyone the day they are diagnosed. It is written in an easy-to-read, highly informative manner to help you cope with the reeling sensation that almost everybody experiences after a diagnosis of cancer.

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

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When we are stricken with cancer, depending on which cancer, its stage, etc., we are faced with many choices. Choices of doctor, choices of treatment, choices to get second (or third or fourth) opinions. They are all terribly important choices that we have to make at a time when our lives have been turned upside down, and each of us will approach these choices in a way that is uniquely us. Many people are very analytical and will vacuum up as much information as possible in order to make the “right” choice. Others feel much more comfortable putting their faith in their doctor(s) because they don’t feel qualified to make some of these choices on their own. I think others may just get dragged along, hoping for the best.

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

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Last March my mother was killed (along with another innocent bystander) in a bizarre & tragic roadside accident. Our family has been having a hard time dealing with this over the past 6 months obviously, in particular my father – who now lives alone. My sister & I and his friends are there for him, but it’s just not the same for him as you can imagine. And then the unthinkable happened…

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

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The day, the hour, the minute you are diagnosed with cancer is the beginning of a long, arduous and often painful journey for you and those who are close to you. Regardless of the physical type of cancer you have been afflicted with, you now have to deal with an emotional disease, unlike anything you’ve had to face before. You’re body is trying to kill you! How’s that for a trip? What does that do to your sense of immortality? What’s really important now? These are all huge issues that will affect you in profound ways, but we all seem to be poorly prepared to deal with them. And not just us, but also the doctors whose job it is to diagnose us and then drop the bomb. What do we do when we are blindsided like this?

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

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When you are first diagnosed, it is extremely important to bring someone with you when attending appointments and clinic visits. You will receive a lot of information in these sessions and at times it may be overwhelming. Having someone with you can be very helpful… two heads are better than one! Have your partner/friend/loved one take notes for you so that you can be free to take in as much information as possible without worrying about documenting it at the same time. You will find having someone with you to be very emotionally supportive, in addition to the benefit of having someone to talk with during those never-ending wait times for appointments and tests. Moreover, in the process of information gathering, teamwork is very helpful. First, you and your partner can usually gather more information than either one alone. Second, you may want to divide your information-gathering activities in accordance with abilities and interests. Third, you are going to find that some of the information you receive will be very anxiety-provoking. Facing it together, in a mutually supportive way, will help you enormously to sustain a degree of calm and clarity.Who did you bring with you? Did it help? Or did you have to go it alone? I hope not. Tell us your story.

Let’s talk.

Posted by Andrew

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I strongly encourage you to start a treatment diary as soon as you are diagnosed. It’s a good idea to start the diary with your personal medical history such as previous surgeries, medications you are currently taking, any previous or current illness, and so on. Follow this by detailing the times and dates of the many tests and procedures that inevitably accompany a cancer diagnosis. It’s also very important to document any disease symptoms and treatment related side-effects so you can discuss them with your physician and other caregivers and don’t forget to include important contact numbers and so on. If you keep this up-to-date (which may be hard with everything that is going on), it will become an extremely valuable companion for you. Bring it to all of your clinic appointments and don’t be afraid to ask for a copy of your test results so that you can append them to your diary. The website of the the Abramson Cancer Center has a great resource guide called OncoPilot that has list of questions as well as some handy forms to keep track of contacts, visits, etc. Check it out.

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

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The length of time people wait between diagnosis and the start of treatment can vary. Regardless of how long it is, you experience a horrific period of time where you know that something inside is killing you and the sooner you get it taken care of the better (assuming that you have that option). I had to wait about 2 months for the surgery that would cut this monster out of me and save my life. They were the darkest days of my life, made worse by the fact that I didn’t have a guaranteed surgery date and there was talk of further surgery cutbacks.

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

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The diagnosis of cancer is emotionally overwhelming. For many people, when they hear the doctor say the words “…you have cancer”, they can’t believe “it” is happening to them. Many of my patients stated that the shock of diagnosis initially caused them to emotionally shut down and that they began to function on a sort of “autopilot”. They explained that, at first, they felt nothing, as if they could hear the words but not “feel” them. After a relatively short period of time, a few days or so of ‘processing’ their diagnosis, they described feeling a myriad of emotions including sadness, helplessness, anxiety, anger, stress, and (of course) fear. These patients explained that as they processed their diagnosis, it made them feel more and more like things were ‘out of their control’. One patient in particular described the experience as follows: “It is the ‘unknown’ that surrounds cancer that causes the fear and distress… what does the diagnosis mean, and how will it affect me, my family, our future?”I have found that, at this point, it is important for patients to regain a sense of control by challenging the unknown. The best way to do this is through accumulation of knowledge. It is vital, however, to understand two important things about information gathering. The first is that, regardless of the anxiety it may provoke, it is imperative to be well informed about all of the details of your cancer in order to avoid basic “unknowns”, the misinterpretations of which can lead to even greater feelings of fear and anxiety. Increasing your knowledge will lead to a greater sense of understanding, control, and confidence in your ability to adapt to and manage the diagnosis and treatment of the cancer. Secondly, it is important to develop an overall picture of what you need to know and to fill out that picture systematically so that you’re not provoking any more anxiety than is necessary. This can help you to assimilate an incredible amount of information, step by step, without experiencing the feeling of being lost in the ‘forest’.

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

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