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Robert Young was a wonderful man. Diagnosed with a PSA that was over 1,000 ng/ml – he never found out just how much over – he fought but ultimately lost the battle with prostate cancer. His legacy is a site - PHOENIX 5 - that is still worth visiting despite the fact that some links no longer work.
I have been tidying up some old files because my hard drive was getting full and sluggish and came across a piece where we were trying to get some punchy one-liners that we as patients could say to a support group. These are Robert’s contributions and I think they are well worth bearing in mind for all of us, even if they aren't all on-liners :- ). My favourite is #9.
1. A cancer diagnosis is not a death sentence.
2. Given the horror stories that we grew up with, fear of cancer is natural. But the more you fear it, the more it will control you.
3. Know your enemy. Get educated. But also know that it won't be easy. It will be confusing, overwhelming and depressing. That is the nature of cancer and thus the very educational process as you regain control.
4. Know that 9 out of 10 times, you have time to learn. Don't panic. You may make a decision (or let another make it for you) from which there is no return. Let the fear settle and your senses return.
5. If you don't know how to use the Net, learn it and use it.
6. Find people who are more interested in helping you to learn than teaching you what they think you need to know. Pay heed first to those who will help you to learn, e..g, how to do an Internet Web search.
7. Disregard statistics. They lie.
8. Disregard the advice that you should have a positive attitude because that is like saying you need to have a million dollars. Yes, a positive attitude is essential but that is advice without telling you how to do it. Gain control and your attitude will follow.
9. Know you will start in fear and confusion and know that every person with cancer goes through it. You are not the first. Therefore find those who went through it and learn from them what they did. But remember that your journey is yours.
10. Either start doing or keep doing something in your life that really interests you and that you can take pride in, whether it be religion, gardening or your kids/grandkids. Find it and do it.
11. Come to the cold, hard realization that medicine no more knows what causes cancer or how to cure it than they know what is the best house, diet, profession and companion for you. Each person and life is different. That is why YOUR education and YOUR choice in YOUR life is best. Make your doctor explain until you understand and if it doesn't like it, get a new one. It is YOUR body, YOUR treatment and YOUR future. It won't be easy but learn to take back control of it.
12. Cancer is going to test you as you've never been tested. If you accept the challenge, you will learn more, appreciate more and be able to do and savour more than you ever imagined.
13. Never give up or give in. It wins only by making you give up, telling you surrender. Don't surrender. Never give up.
14. There will come a time when you are not living in fear or anxiety about it. Now put some time into helping others get through it too. It may be the best immune-booster of them all.
I have not read Robert Young's Advice Book as I am only a week or so since diagnosed and am still in the frightened stages. I would say that reading the 1-14 items you mention really sums it up. however,
I started to fear waking up after my biopsy's then when I was told I was positive I seemed to cross a line which no one else can come over unless they are like me.
I have started to get stronger and seeing some of the humor on a part of this sight namely the doctor telling the guy he is positive I used that with my name on to tell my friends of my condition.
But back to Robert's work just reading it gives me strength so his work is really helpful to people like me.
Can I say as a newby here thanks for the site and any encouragement that you can give to me and other newbies.
It is easy to forget how hard it was at the start
Indeed as time goes by our memory tends to soften the starkness of the reaction to the word “Cancer”. One of the reasons I was involved in setting up this site was because I didn’t want to forget how badly my darling wife was affected by the way in which we were given the bad news – and how unsympathetic the urologist was, how misleading the limited information he gave us, how difficult it was then to learn anything useful. We thought that if the could lessen slightly that awful feeling that most people have, we’d achieve something.
I have tried to live by Robert’s injunction #14 as do many of the men who contribute their experiences to the pages of this site, thus demonstrating to the men that follow us the truth of my personal one liner which, as you may have noticed is “There’s life after a prostate cancer diagnosis.” and I’ve done my best to demonstrate that personally by our activities over the past twelve years – we’ve been and seen some wonderful places, met lovely people and had some pretty good food. I’ve just had a notification from the airline we use most often that there’s a special offer for frequent flyers – our problem, it seems will be whether we should make another trip to the US or France and Portugal. What a choice to have to make – and one I never thought I’d be around to make in 1996.
I’m glad you like the odd touch of humour on the site – I think that’s another important aspect of life. When I was running a support group in Cape Town South Africa we used to alternate a professional speaker with an open meeting when any subject of interest could be raised (and at the end of either type of meeting we had a couple of bottles of wine and some snacks available!). At one of these open meetings, a newcomer, whose father had been diagnosed asked, when we got to question time if there was anyone in the meeting who’d actually been diagnosed with prostate cancer. A huge laugh went up and I asked all the men to introduce themselves with a brief summary of their diagnosis, choice of treatment and current situation. She was amazed that they could be so apparently light-hearted about what until then had been such a traumatic shock for her. She had joined the Group just in time for the December meeting which was always focused on the fact that we’d survived another year – and that was worth celebrating. It certainly helped her to see for herself that there was indeed a life after prostate cancer.
I was just reviewing your site and reading some of the older posts and I remember when I was diagnosed a year ago I read Robert Young's comments. I remember #10 stood out for me-though all the comments were inspiring. Only a year has passed and most of what was traumatic at the time now seems I'm more detached. Maybe over time the brain insulates our thought process or we just become better at handling the fact of life with cancer. Reviewing Mr. Young's comments brought back those awful days and made me remember how this good man had the strength of character in middle of his battle to stand up and think about others. I guess the lesson to be learned is, a way to stop feeling sorry for yourself is think of others and how you can help them in some small way. Thanks Terry for your website and what you do for others! Gary
Thank you Gary and all the other men who share their experiences and help their fellows along the path we are all travelling.
I think that you are correct in what you say - we all have to learn to live with the unexpected intimation of mortality that a cancer diagnosis so often is. This process will often mean that we understand more fully how wonderful life is and how important it is for us, and all around us, to get the most out of it before it is gone.
A question that comes up from time to time is why there are so few long term Mentors on the site - this usually from newbies who assume that means that death has come early to most men. I tell them that is simply not the case; that the fall off in numbers as the years go by is not bad news, but good news. The men who do not update their stories have gone back to their lives, no longer prepared to have PCa intrude.
That's fair enough, although I am happier if they can just drop me a line once a year to confirm that all is well - it is tremendously encouraging for the newly diagnosed to see that proof of life continuing after PCa.
Thank goodness for that. It did concern me greatly when I have looked for a similar diagnosis to my husband's (psa 93.5 gleason 9 stage T3b)that apart from a very few men there did not seem to be many long term with a bad initial diagnosis on the site. I look at the site every day. Please come on all you long termers with a bad diagnosis give me hope.
I was diagnosed in 2001 when Robert Young's PHOENIX 5 website was alive and well because he was in charge. I can remember following him almost day to day in his reporting. It was a sad day when his goodbye arrived. I have been facilitating an American Cancer Society/UsTOO International Man to Man group in Florence, Oregon USA now for about 7 years and have had my share of goodbyes due to prostate cancer. Much of my strength comes from the times I read what Robert was going through and wondering how he could manage. He was an inspiration to me and I'm a stronger advocate for having "met" him even if only on the internet.
3. If you are confused, overwhelmed, and depressed, you will not be able to learn or think. First try to achieve some degree of equanimity, until you can learn and think. Meditation has been studied in cancer patients, and found to be very helpful. Many traditional religious ministers can be helpful, depending on their orientation, training, and insight. Some psychologists can also be helpful. Ask around, and see what is available. You might initially engage all three, and see what works best for you. You don't have forever to find out.
If you need to take some vacation days to create the time, remember, your life is on the line. Consider taking unpaid leave if necessary; many employers are understanding in this situation.
If you have difficulty getting an appointment in less than a month, explain your situation; if you still can't get in reasonably quickly, ask about a cancellation list, and alternative providers. Fortunately, most prostate tumors move slowly enough to give you some time to make a decision. Still, the sooner you can get started, the better.
7. Statistics, properly understood, do not lie. However our intuitions about probability do not accord with the math. Hence, statistics can be manipulated by the unscrupulous to deceive those who do not understand it, which is most of us. But I think we can trust statistical evaluations in medical research studies. They are read by lots of people who do understand statistics; any deceit would be quickly spotted, and the reputation of the author trashed.
11. Medicine does indeed know how to cure some cancers, including prostate cancer. Not everyone can be cured, but, with optimal treatment, over 80% can be CURED. Period. For low grade tumors, the best treatment produces cure rates a bit over 90%. And some tumors don't even have to be treated, though they do need to be watched.
Those cancers which cannot be cured can usually be slowed down enough that something else will get you first. The most common cause of death in prostate cancer patients is heart attacks. In fact, one research study I read concluded that the most useful thing those treating prostate Ca could do for their patients would be to improve their cardiovascular health! (Most of the patients in that study died of heart attacks.)
12. Cancer will test some as they have never been tested, but this is not always so. Different people respond differently. Depending on your tumor and your equanimity, you might not find it terribly stressful. If you do find yourself stressing out, see 3. above.
13. Never give up or give in! That's one take. But there may come a time when peaceful acceptance offers your best way forward. Would you rather leave fighting, or loving your family?