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I got my latest PSA result on Friday, 14 years to the day from the date of my biopsy. Ten weeks after starting my next round of ADT (one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I’m hoping that when I get the next shot next week, the third shot may be unnecessary. No new side effects yet, so I’ll hold thumbs on that.
I’m not a great one for retrospective second guessing, so on anniversaries like this I never start on the “what if’s” , but I do look back on what has happened over the years and wonder how many of the things we (my good lady and I) have done in these past 14 years we would actually have go around to doing without the impetus of a life-threatening disease. Would we still be saying “We MUST…..……one of these days.” Certainly the dire forecasts of my early demise helped us focus on what was important now – as a good friend said “This is not a rehearsal.” , and so we have been to places we had wanted to see and travelled far and wide. We’ve had some great experiences and have met people we would otherwise never have got to know. I know that the newly diagnosed man – and his loved ones – may find it difficult to see any good in his diagnosis, but I am here to say that for most of us, it ends up as a positive experience simply because we can establish more clearly the value of being alive.
The other aspect of our shared disease that I contemplated was how little things have really changed in the past 14 years. Of course there have been what appear to be significant improvements in the two mainstay therapies – surgery and radiation, with new, and very expensive machinery being designed and brought into use. But ……there are still no studies that demonstrate that using a robot assisted surgical procedure is in fact a better way to go than the old manual open surgery; that the high doses of radiation delivered more accurately and more quickly will in the long run have a better outcome than the old, smaller fractionated dose protocols; that proton beam radiation is better or worse or the same as photon beam radiation – in fact in some quarters this is regarded as an experimental therapy despite the fact that it has been used on prostate cancer men for more than fifteen years. Is Brachytherapy a better choice than EBRT (External Beam Radiation Treatment) – we don’t know because there are no studies. Why are Cryotherapy and HIFU (High Intensity Focused Ultrasound) labelled as experimental still? Both were used fourteen years ago, but there are no studies to show how they compare with other treatments. And so it goes – no apparent co-operation, no agreement, no certainty in diagnosis, in treatment choice, in likely outcome.
It is little wonder that men diagnosed today are initially are in much the same position as I was 14 years ago. Seeing doctors who seem to have biased opinions, to provide information that is outdated, to apparently not have any real interest in the long term outcome. Maybe that’s unfair but after reading literally thousands of experiences, those are some of the conclusions I have come to. I don’t think it is likely to change in the future, but whatever comes my way, I’m grabbing life with both hands and we’re having fun until something stops me, literally dead in my tracks!!
Congratulations on long journey and on going. I also supported your approach to watchful waiting or A.S. when it was unpopular in some PCa circles or forums, because it still was your right, still educated decision and is a real choice mentioned by leading oncologists and maybe even some uro-docs. I would not be one to point out hey your W.W. didn't work in the longer run (so you didn't see me just write that-lol).
Your month of psa tests for other men to witness, was a brilliant concept and still looked at today, people need to look at everything. You were and are a pioneer in PCa circles and I think I am also...only way different path and way different diagnosis and scenarios found.
Everyone has a contribution to PCa information 'gene' pool and experiences pool. Collectively let patients use this to our advantages as the system is not working directly for our best consequences as you kind of eluded to in the not much real change...exactly what Kathy Meade said recently. We could give them ideas for abstracts we wish to see done, probably never happening. We still have hope and that cannot be bought and sold. Someone will make a breakthrough maybe even a quirky guy like the little engine that could...a Bill Gates of PCa. My forecast is it comes from other than the USA and will not be as costly as Provenge and out perform that one.
I was interested to see you say, amongst other things:
I would not be one to point out hey your W.W. didn't work in the longer run ...
Were there are any therapies that could have guaranteed me to have a PSA of 2.3 ng/ml 14 years after diagnosis with no symptoms of the disease or permanent side effects? Are there an such therapies now?
So, for me my W.W. has worked out fine for what might well be regarded as quite a long run....and hopefully will continue to do so.
You forgot to mention one very important improvement in the past fourteen years in the lives of those of us diagnosed with prostate cancer: We have this web site to help us, to guide us, and to support us on our journey.
I, for one, am very grateful. It may be lost on some of the visitors to this site (but certainly not me) that one of the best things about it is that it is OUR site. There is no advertising. There are no organizations or corporations with their sometimes self-serving agendas lurking in the background.
I am in awe of the work Terry does to pull all this together, with nothing but whatever donations come in to support the effort.
Here's what I propose.
Any like-minded folks out there are welcome to join me in sending an Anniversary donation of AUD14 by using the PayPal/Donate link on the Home Page Links. I know Terry could put the money to good use - he is always looking for ways to reach out, and one of the ways currently is by distributing copies of his excellent booklet "A Strange Place" to those that do not use the internet.
Count me and my wife, Stephanie, in to get the ball rolling. Our AUD28 donation will be sent as soon as I finish typing this post.
Thank you, Terry, and thanks to all who contribute their support and wisdom (and humor and compassion) via this site.
All our Best, Roger and Stephanie Carnell in Indiana.
As a newbie to "the club I never wanted to join", I have already come to love this site and its members in a very short period of time. The job that Terry has done in organizing a site "of the people, by the people and for the people" is amazing to me. I only hope that I can help those newly afflicted with PC in some miniscule way, however I am totally inspired by Terry's efforts. Keep fighting the good fight Terry.
I can only echo the sentiments above. The work you have done on behalf of all of us in the PCa battle is tremendous.
It's five and a half years since I discovered your greatest achievement - this site, YANA, and I never tire of telling every newly diagnosed guy who contacts me that this was the first site I ever found, and it still remains the best.
Its format is unique, and the hundreds of personal stories here have inspired and given real hope to countless worried and frightened newcomers to PCa.
Terry I would like to also say congratulations on your 14th year.
I have been doing what you have been saying "grabbing life with both hands" I have been travelling around Australia now for the last 4 years ringing the neck out of life. (4WDing)
I often wonder what a person I woild be like if I had not been diganosed with PCa. I probably would not have tavelled and still be in some sort of rut working, so maybe PCa has been a "good" thing for me seeing the good in people such as you and your work with YANA.
Along with the others here, I send my heartiest congratulations on your 14 years.
The countless people you have helped and encouraged during that time is magnificent awe inspiring and I wish to thank you for all the effort you put into the YANA site.
I hope you will be around for many years to come and enjoy the good life with your wife, family and friends.
Once again congratulations.
Thank you all for your good wishes - and thank you for your suggestion, Roger and your donation. A number of people mailed me to say they didn't know how to make a donation, so here the link is for anyone else who is feeling generous DONATIONS
I have decided that I have enough funds (taking into account likely donations based on past experience) to plan to publish a book using the material in my booklet A STRANGE PLACE to which I will add a section dealing with my personal journey. My aim in doing this is to reach the many men who do not have access to the Internet - and there are many thousands of them, given that more than half the men diagnosed are over the age of 70, with limited computer skills. I aim to have the project completed in time for my 15 Anniversary next year which coincidentally is the month before Father's Day here in Australia and September which is a focus month for PCa. So thank you again to all who will have contributed to this venture.
I also got some mail expressing concern at Rob Parsons having a 'dig' at me. Rob and I have known each other on the Net for some years now. I like and admire him and understand him only too well. I don't think he has a nasty bone in his body - except as far as the medical profession are concerned when they exhibit incompetence. So I took no offence because I know that none was intended.
Exactly Terry I have no issues with you and admire all your journey and works. We go way back I supported you early on and looked for some guidiance through you, too and my brother talked with you and it has made an impact on his PCa, he is still doing W.W. or A.S. and no psa change, appears sane for him thus far.
Correct my issues are with some of the docs and what goes on in the name of 'full disclosures, full assessments, unbiasedness, advising patients maybe seek another opinion for your own good' (rarely happens). I hope patients get a fair shake in their journey, selections, choices and overall care.
Terry:
I'm late catching up on this one - I've not been on the forum much lately. I'm 14 weeks on from treatment, and just trying to get back to 'normal' life.
But I echo all the other compliments and reminders to get the most out of life.
I'd like to personally thank you over the next few weeks! I'll be in Melbourne from Sept 29th to Oct 7th. Can I buy you a drink???!
Thank you David - I'm never averse to having a couple of drinks, but you've chosen the wrong time to visit Melbourne - at least as far as I am concerned - it's a great time to be in Melbourne and Australia. We have a pal from South Africa here at that time and will in fact be out of town showing her around this great country of ours.
