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I wouldn't delay too long on treatment if you are relatively young ( under 65 ). I can't see what is to be gained by delaying given your stats. Whatever treatment you decide upon, ensure that you have the top doc and /or facility in that discipline in your area.
When I knew I was going to delay treatments because I had to wait 2 months for a Combidex MRI I asked my oncologist what I could do to keep the cancer from growing. He said go on a vegeterian diet, no meat or dairy. I did and my psa dropped from 40 to 30 in 3 months and was still dropping.Also took pomegranite and lycopene supplements.
I also went on Casodex after the combidex MRI to shrink my prostate for seed implants; it was 60mm. the casodex took my psa to 0.6 in 4 weeks and then to less than .1.
Casodex is a good way to keep the PC from growing while you await treatment. a lot of oncologists believe it also helps whatever treatment you get because it shrinks the tumor and kills any stray cells that may be in your blood stream. There are a few side affects like loss of libido and minor hot flashes, but all in all side affects are pretty minor.
JohnT
I have your entry, sent through on July 22, but I’m not sure when I’ll get to process it. I’m up to July 5 in my backlog, but a sick dog today and a “Xmas In July” celebration tomorrow will cut down on my work schedule:- 0
Your question is really like asking “How long is a piece of string?” because there is no answer, as I think you know. In my case I waited 11 years before having any treatment – and won’t know if that was a good idea for, I hope, many years to come, bit so far, so good.
I think the issue of your mother’s passing is not germane to your decision making process. I think the issue is how aggressive your tumour is and with a borderline Gleason 6, it isn’t that aggressive, despite the number of positive samples. As ever, I suggest you get that GS checked by an expert pathologist, because the GS is the prime driver in any decision making process (I assume you have been to RECOGNISED EXPERT PATHOLOGISTS ). If the expert advice comes back with the same the same opinion – low grade 7/borderline 6 – then published studies show that a delay of several months is unlikely to affect the outcome.
You have only been in this Strange Place of ours for a little over 3 weeks. It is vitally important that you gain as much knowledge of our shared disease as you can, that you get the appropriate second opinions, that you discuss issues fully, that you carry out appropriate investigations into the expertise of the people who you intend to get your treatment from. All these steps take time and it seems to me you have that time.
As to using ADT (Androgen Deprivation Therapy) – what you term HT – to ‘hold’ the disease, this may not be in your best interests. Like everything else about PCa, there is no agreement on what is termed neo-adjuvant ADT, but some surgeons are not prepared to operate on men who have had this treatment – on the grounds that ADT changes the structure of the gland, making it more difficult to identify the tumour and ensure that the margins are wide. Some radiologists also shy away from glands that have been treated in this way, although some recommend it.
Terry,
Thanks so much for this, and please don't feel under any pressure to get my profile up - what you do is amazing and this site has been a life-saver for me (perhaps literally!) so that's not important. I haven't actually had a second opinion on the biopsy - the hospital seem reluctant to do so, but I'll press for that.
It's encouraging to hear you waited 11 years for treatment, and I am avoiding being overly influenced by those who say 'you need to act quickly, before it spreads' but of course when you're new to the Strange Place you hear a lot of those voices.
I'm hoping to meet with Mark Emberton (UCLH, London) soon for a consultation, and I'll also be meeting with a Brachytherapy expert in Leeds in a couple of weeks, so I'm taking your advice.
Many thanks again, not just for your response but for this fantastic site.
I was so pleased to see you post your dilemma here.
I emailed you this morning and it seems our friends here have pretty much the same advice to give you.
As it says on the homepage of YANA - "Don't Panic".
Wishing you all the best in your decision making, and achieving a great outcome.
Hello David. I have written to you privately since I am also seeing Mark Emberton now and since we are fellow Brits here.
I wanted to post this reply though to echo Terry's caution to you not to rush. At this stage in your journey (3 weeks) you are still getting over the shock of hearing the C word. But you must give yourself time and I am sure from what I know of Mark Emberton, who is a world leader in HIFU, he will urge caution. In my case he felt that my post op pathology from another surgeon, indicated that I might well be one of the guys who had insignificant cancer. Indeed with his support after my "failed" surgery - 6 grams left in - we have watched and waited until at the last test my PSA had gone down to 0.13. He is not even rushing to biopsy my remnant and that suits me fine.
Have you seen Terry's article on PSA? I ask because you say "my PSA velocity over past 12 months was 0.3 (i.e. 3.8 - 4.1)". I don't think that movement tells us anything worthwhile. There is a normal variation in readings of 10 to 15 per cent up or down even in the same lab. (Did you use the same lab for both?)
I don't think there is a significant difference in your 2 readings, 3.8 and 4.1 are the same in my opinion.
I think you have time to get second opinions on the biopsy (Mark Emberton can help you there). You have time, if he thinks fit, to have a prostate MRI expert do some sequential scans. You also have time to monitor the PSA for a longer period.
I would say your main priority now is to make sure that you have planned a good summer holiday. Go away and take a few deep breaths!
To everyone who replied:
Thanks so much for your reassurances. I've been on a no red meat/no diary/lots of veg diet for two years, and I take lots of supplements. So, I guess I'm doing the right things to buy some time. It looks like the longest I'd have to wait until I had any kind of treatment is 9 months, so I'll take all your advice, and relax!!
Aloha David,
It is good that you can & have been on your diet with respect to food. It will help your heart, as has been supported by research. I personally feel, and several studies, including PLCO (tomatoes) show that the relationship between diet & PCa have very little evidence toward helping your prostate stay healthy, i.e. eat & drink & be happy, enjoy any food you like. If you are dieting for your prostate, there is very little evidence that it help. If you are dieting for your heart, good show.
Faith, Hope, & Love,
Joe
Joe,
I'd bet this one's been raised here a few times! And I'm sure Georg from England will have a few thoughts on this. My diet is partly for my heart, but also partly for prostate. I was very struck, in reading Prof Jane Plant's book on the connection between lifestyle especially diet and PCa incidence in the western and eastern (especially Chinese and Japanese) diets.
I find it hard to see that as being mere coincidence - so I'm in the 'better be safe than sorry' camp on that one!
My thoughts are....it has worked well for me, and my 'bibles' are Jane Plant's books and the China Study by Colin Campbell.
My diet is very much Asian based but most rigidly lactose free. Good for my heart,and even better for my prostate cancer, apparently working wonders in keeping down my PSA, even when I've been off all cancer meds for almost 2 years now.
Diet and Prostate health
* Researchers now think up to 90% of all prostate cancers have dietary links. Our Special Report includes specific nutritional guidelines for preventing — and coping with -- prostate disorders.
The above is clipped from an email offering from Johns Hopkins, a special report they have produced. I think the connection between diet and cancer is very well established by now.
While I am a firm believer in diet and life style being a signficant factor in health - including prostate cancer - I think that the reference here may be to a spoof Johns Hopkins reference that has been circulating on the internet for some time now.
You can read about it at JOHNS HOPKINS SPOOF and come to your own conclusions.
Terry,
Very interesting.
I get these emails from Johns Hopkins ever since May of 2007 when I purchased the Johns Hopkins white paper on prostate issues when I was first diagnosed myself.
Here is an extended clip and paste from the email I received in early January of 2009, which I include just to give a full setting for the quote i had posted. This dietary comment is also included from back then:
Special Offer from Johns Hopkins Health Alerts
Expert Guidance For Dealing With Prostate Cancer
Stuart Jordan
Publisher, The Johns Hopkins Prostate Bulletin
Dear Health Alert Reader,
Your health and the health of your loved ones is our foremost priority at Johns Hopkins. If you, or someone you love, has prostate disease you need the most current, reliable information you can get so you can make the best informed decisions about your future.That's why I've taken the liberty of reserving five FREE Prostate Health reports in your name:
* FREE Special Report #1: BPH: Reviewing the Options.
A must-read report on treatment options for benign prostate enlargement, with an emphasis on minimally-invasive techniques for treatment of this common disorder in men.
* FREE Special Report #2: Diet and Prostate Health.
Researchers now think up to 90% of all prostate cancers have dietary links. Our Special Report includes specific nutritional guidelines for preventing — and coping with -- prostate disorders.
* FREE Special Report #3: Treating Overactive Bladder.
An in-depth look at current options for treating OAB -- including a close-up look at a new generation of medications that have fewer side effects than more commonly prescribed drugs.
* FREE Special Report #4: Chronic Prostatitis: New Research, Renewed Hope.
If you're one of the millions of American men who suffer from this frustrating condition, don't despair. Breakthrough research studies are pointing the way to important new therapies you need to know about.
* FREE Special Report #5: The Radical Prostatectomy.
One of the most authoritative reports on the subject available, written by Jacek L. Mostwin, M.D., D. Phil. (Oxon), Professor of Urology at Johns Hopkins, is head of the Division of Reconstructive and Neurological Urology. Essential reading for anyone facing the prospect of surgery or its after effects.
All five are yours to keep with our compliments, as your introduction to one of the most valuable health resources you'll ever benefit from:
The Johns Hopkins Prostate Bulletin is the most comprehensive up-to-the-minute round-up of prostate care advances, new research findings, and clinical trials ever made available to medical consumers.
As publisher of The Johns Hopkins Prostate Bulletin, working with doctors and professors of urology at one of the nation's foremost urological center, I'm constantly impressed by the wealth of new therapies, important breakthroughs and newly-discovered preventive measures available to men at high risk for prostate problems, or undergoing treatment for them.
Yet for the average medical consumer, the information has simply been inaccessible -- hidden in obscure medical journals or buried in miniscule articles in the back of the daily newspaper. Even many physicians may not have ready access to up-to-the-minute research in this highly specialized field.
As the nation's leading center for prostate care and research, Johns Hopkins' James Buchanan Brady Urological Institute is in a unique position to evaluate and disseminate the very latest information concerning advances in prostate treatment. Now, Dr. Jacek Mostwin is leading a team of world-class prostate specialists as chief medical editor of a remarkable publication created for that precise purpose.
The Johns Hopkins Prostate Bulletin has one simple mission, one clear focus: to provide those facing prostate health challenges with the kind of authoritative, leading-edge information they need to take charge of their medical care -- intelligently and effectively.
As I said, I believe that diet and behaviour are vital ingredients in health, so there is no argument there:-)
I wonder if the Snopes piece refers more to the e-mail that I have seen several times highlighting the alleged dangers of using plastic for micro wave or even storage of food, and other bits, which are made out to seem part of the Johns Hopkins piece?? Perhaps you'd ask them to clarify the point?
Aloha Bill G,
In the false John Hopkins report, it discusses the effects of sugar & sugar substitutes with respect to feeding cancer cells. I know that bell curves apply to all test results and that you can be one of those that are at the very begining or the very end of the curve. What I've personally tested, is this sugar/substitutes statement. My sinus lining is very sensitive to sugar/substitutes. I discovered this in late 70's early 80's. Since that time (say 1980) I've read labels very carefully, and avoided fruits, no sugar containing foods (like molasses), no diet drinks, no sugar substitutes, not even milk.
What happens to me appears as chronic fatigue. So, in order to exercise, I just am very careful about what I eat. I still have major problems with stamina. Even avoiding all sugar (yes, even in table salt), and 35 years later I still got cancer. There are some unusual test results for me, like the lowest cholesteral my doc's ever seen, and Triglyceride < 20.
My diet does contain a lot red meat, eggs, oils, veggies, and a lot of sourdough bread (I'm over the gluten UTT's). Water is about the only liquid that I can tolerate.
Every one is different. Most every one has cancer cells. Eating a good responsible diet will probably add years to your life, you will feel better, and enjoy life more, but you will still get cancer.
Faith, Hope, & Love,
Joe
Sad but true, for several years before I got the word about having PCa, I took selenium supplement. And yes, I've got the aggressive one.
Faith, Hope, & Love,
Joe
Hi Joe:
My original question seems to have been overtaken by a discussion on diet and supplements! But, since it's on my post let me just add two points:
1. I too got the Hopkins e-alert - I don't think it was a spoof
2. The scienceblog post you referenced has some very interesting comments at the end of it. Like you I took supplements (though not, as it happens, selenium) before I was diagnosed to 'prevent' PCa. So I was initially aggrieved at my stupidity and the wasting of my money. But then I realised that I have possibly had PCa for up to 10 years - well before I started taking supplements - so it's also arguable that the supps have slowed down the growth!
You can argue it either way I guess, and I'm sorry to hear that you are dealing with an aggressive form. In the end, the supplements are probably going to make a small difference either way - at least compared with the surgical, hormonal, chemical interventions.
