Hi akimbo. My discussion group is, I think, aging patient, high PSA. Hope it helps.
Hi Terry - about 4 years ago, then aged 77, I complained to my GP about a 'weak flow' and suspected it was simply an enlarged prostate. Blood tests showed my PSA as normal but after his rubber glove examination he told me the prostate felt unusual and recommended a biopsy. I baulked at this, knowing the risk of infection, the uncomfortable nature of the biopsy and having normal PSA. However, he insisted, saying 'if you were my Dad I'd make sure you had it'. So I did and was diagnosed with prostate cancer and underwent the prescribed 56 sessions of radiotherapy and 2 years of Zoladex implants. The side effects of the Zoladex have been total impotence, shrinkage of penis and testicles, absolutely no sexual desire, continuing hot flushes 18 months since my last Zoladex implant and a period of depression which I eventually overcame.
All very uncomfortable, but the fact remains I am still alive and PSA levels have remained constant at 0.05 over the past year.
I go with 'Whiteplume' and say that at your age - 70 - the sooner you find out for sure whether or not you have it the better.
Hi Terry,
Unfortunately there is a tremendous amount of superstitious myth attached to what people have done to treat or not treat prostate cancer. Whiteplume and Harry argue for assessment and treatment......their arguement resting on the fact that they are still alive, albeit wounded from the treatments they endured. I was formally diagnosed in 2005 with a PSA of 20. Because my PSA doubling time is approximately 5 years, working backwards my PSA was 10 in 2000 and 5 in 1995. This means that I very likely had a slow growing cancer that could have been diagnosed as far back as 1995 had I been evaluated with color doppler guided biopsy or MRI guided biopsy. I chose to do nothing......and I am still alive......and I have a robust sex life and no symptoms other than getting up to pee at night (usually once and sometimes twice) and, at times, a weak flow. Am I alive because I did nothing? Well, it is true that I didn't suffer infections, or the occasional bleed out and death after prostatectomy, etc. So, yes, I didn't die as a result of getting treatment. Are Whiteplume and Harry alive because they did treatment? It is absolutely the case that we don't know whether they would have died without treatment and there is no way to know that. So, you see, there exists many superstitious myths about what to do.
The US Preventative Services Task Force Weighed in on Prostate Screening after reviewing all available research on the topic. I would suggest that anyone considering testing or treatment read it in its entirety. It is very informative, was produced by epidemiologists, medically trained, people with no financial interest in the outcome, and is easily read. You can find the article here http://www.aafp.org/afp/2013/0215/od1.html  I wish you the best with your choice.
It is nice to be alive and still intact. I cannot say that what I have chosen to do would be the right choice for you. You will likely have to address your anxiety over having and living with cancer. There are many men who simply don't know they have it and life goes on as normal. Other men, myself included, who know that they have cancer must effectively deal with anxiety. But when my surgeon/urologist recommended surgery back in 2005 and when pinned down to "what is it about my cancer that causes you to recommend cancer?" kept saying "well most men get anxious/scared and just want it out." My response to him was "So you would surgically remove my anxiety/fear.......I didn't know that was a recommended treatment for those feelings......shouldn'e you recommend me to a therapist instead?"
Realistically a man of 70 has a 70% chance of having prostate cancer. At 80 that chance goes up to 80%. Given those stats, it is amazing to me how many people don't die of prostate cancer and rather die of something else. I do, sometimes wonder what will take me. But so far I am alive having done nothing.......and, my life remains a pleasure.
Ye I think all the talk of risks of biopsy are scary and over the top, of course there are risks but under good management and don't forget the antibiotics its a lot less risky than the outcome if its not found and goes on spreading!! I wonder why some people decide against having it removed if ofcourse it is contained. With a good surgical procedure it gone you don't have to think about it so, ok you still have the psa tests but hopefully you are signed off after 2 years to the normal yearly psa test at the annual medical. Well that's what happens here in Germany.
I know people will scream inconvenience but you overcome it, it takes a while and it takes a little willpower but do the kegel exercises and eventually you will get past this. I am 3 months post op doing well feeling good and with thr guidance of my Urologist I hope to be back on my bike by the summer! ! And if knot there are many other things to do.
You have to be positive strong and determined and get your close friends around you for those moments like when you get those dreaded words " you've got cancer"
Yes don't hide away we all shed a tear until we picked ourselves UP.
ITS THE ONLY WAY FIGHT!!!!
Tommy
Terry,
You are right. You won't live a day longer if you go down the intervention route,you'll just have stress and worrying side effects. Look at the website What Doctors Don't Tell You and also find a chap on the web called Ben Ong who has written a book about prostate cancer which talks sense and tells you how to change your lifestyle,what to avoid,what to eat and drink,why biopsies,radiotherapy and surgery are a bad idea when you have low grade prostate cancer. I decided to follow the non intervention route despite being heavily leaned on. I changed my lifestyle and followed the right recommendations and my PSA has fallen from 9.5 to 5.6 in 20 months. It wasn't a leap in the dark - I've spent over 30 years in healthcare at a high level,including setting up monitoring clinical studies. You are on the right track Terry.
Terry,
Also, if the moderator approves my prior post to you....I would suggest that you read it. It is being reviewed because I added a website link to the US Preventive Services Task Force review on the effectiveness of prostate cancer screening and treatment. It is an unbiased review by medical physicians with specialties in epidemiology who reviewed all the available research. I would add the link, but rather than have this post go to review by the moderator I would instead simply suggest that you look it up and read it from top to bottom.
In my work I distinguish between fear and anxiety. Fear is something to be avoided because it is dangerous. Anxiety is the proverbial paper tiger where we feel fearful, but there isn't a real danger.
Treating anxiety, as they do with prostate cancer treatment, via surgery, radiation, hormonal deprivation; in my mind is nothing short of malpractice. Anxiety (regarding low or intermediate grade prostate cancer) is best treated by a therapist.
My Best To You
Yes I agree, fight this dangerous and unpredictable disease. In considering biopsy risk remember to take into account your own state of health. Consider it in two ways.
1. How it will affect your risk of side effects
2. How it will effect the progression of untreated agressive PCa in you should you have such.
Without a biopsy you cannot tell if an identified tumour is agressive or not. PSA doubling time is not reliable for this purpose. It was not in my case. Only examination in the Pathology lab can give a Gleason score.
thanks Mike. How did you determine it was low grade cancer? I agree with you once that grade is determined. If it is high risk / agressive cancer then treat agressively and change your life style.
Change of life style may not be enough for agressive cancer. Radical therapy may not be enough for agressive cancer. So always change your lifestyle. After all, your old lifestyle let the cancer develop.
Hi Carl. Not treating intermediate that is Gleason 7, whether 3+4 or 4+3 seems risky to me. Please would you expand that part of your comment.
Hi George,'I had the biopsies (before I knew any better) with 2 of the 12 biopsies showing abnormalities and scored 3 each. This was followed (rather than preceded - as it ought to be) by a scan and other tests to determine spread (none) and a closer look at the prostate. Everything was ok and I felt good. So I determined to improve what I could about my lifestyle - mostly diet,exercise and good supplements. I've virtually cut out dairy (strong links to breast and prostate cancer),very little red meat (grass fed or organic),very few carbs,purified water(not in plastic bottles due to plasticisers being leeched into the water) and so on.i just try and do things automatically rather than be fixated. I use almond milk rather than soya,which has become a bit industrialised in itself,I have 100% pomegranate juice at breakfast (really miss the orange stuff) and mix up walnuts with my cereal. All of these things either have studies saying they're good for the prostate or are better than the pesticide laden stuff we've been fed for years which I think have contributed to the rise in cancers generally. I'm happy,I don't stress or worry,I enjoy each day and feel I'll be around a long long time. Positivity is important. :-)
Hi Mike, we seem to think in much the same way. My urologist did things in a better order with the MRI scan PRECEEDING the biopsy. Indeed the indications were that the cancer had broken through the capsul. It wasn't until the more extensive scanning during RT it was established that the cancer had not broken through the capsul. A veyr close run thing it seems.
Our diets are similar. Mine a bit narrower. I use fresh pomegranate juice when I can find the fruits. Soya like you is out. Boxed fruit juice is out. Fresh orange first thing at breakfast. Cod liver oil and hemp oil. Olive oil and coconut oil for cooking. I still eat porridge. I eat home made bread - spelt 50% white flour 25% rolled oat 25% all three organic plus yeast and honey.. Five walnuts from the shell. Green tea - no black tea or coffee. Like you no dairy. Basically vegan plus chicken and fish two or three times a week. I have developed a strong liking for pulse stews. Various forms of cooked organic tomatoes.
I have been anorexic since my biopsy so I have to be careful not to over eat any healthy food I don't like much as dislike can turn to loathing very quickly. So that is an added difficulty which I am glad you do not have. I used to eat happily nearly everything set before me. Barley and Marmite being exceptions. It looks as if anorexia will be permanent. Still set against agressive PCa I am doing well. Generally I feel very fit and like you I am happy.
. . . And we have started to make and eat black garlic daily. We were unwilling to eat raw garlic because of the odour. However black garlic is fairly pleasant to eat and is reputed to be twice as efficacious. We also eat an apricot seed daily, working up to two soon. Instead of bottled water we filter water so that it is mildly alkaline and use that for drinking, cooking and washing vegetables.
Hi George,
You asked about not treating intermediate 3 + 4 or 4 + 3 prostate cancer and my reasoning. First, this is a choice that I made and I am certain might not be the best choice for others. My Gleason score was 3 + 4 as opposed to 4 + 3. There is a difference and the difference is significant. In mine the predominant cancer found (you'll recall it was in two of eight core samples and was relatively small) was 3. They don't tell you this, but in the US they no longer use 1 or 2 grade, so the lowest you canvery small. I know this because I retrieved digital copies of my biopsy slides and looked at them to compare them with the Gleason originals. I also had a second reading by a pathologist who, unfortunately, was not blind to the original pathologist's report. My read was that the 4 was actually between 3 and 4 (just my read). Also, in the US, pathologist's are very concerned about malpractice and tend to upgrade a pathology report for fear of being sued (it is called grade creep). So my read was that the bulk of my cancer was grade 3 (low risk) and that a minute part was graded 4 (intermediate risk) by a person who would not wish to underdiagnose or accurately diagnose if there was concern for a law suit (ever present in our system). Then, in my reading of the US Preventative Services Task Force, I saw that it was essentially ill advised to treat low grade prostate cancer and questionable whether there was any real benefit to treating intermediate cancer.
And to go back to an earlier post, short of surgical removal and clean margins, virtually any mechanism designed to "fight" cancer basically provokes the cancer causing cells that divide relatively quickly and mutate (they are already mutated) easily into more aggressive cancer. Finally, I had my slides read to determine whether the cancer was haploid or diploid. The cancer cells were diploid and that was the final domino that led me to not pursue treatment.
So, it was an interesting foray into the rhealm of conventional medicine where I, personally, feel that I dodged a different bullet than many of the writers to this forum.........rather than dodge cancer, I dodged treatment and the collateral damage that it seems to so often produce.
And, as a result, I am still alive 20 + years later, still have no symptoms, enjoy my life without limitations, and, occasionally, experience a touch of anxiety......oh well, life really does have its uncertainties. My Best To You
Hi George,
I just came across this study on active surveillance for intermediate risk cancer. Thought you might be interested.
Medscape Medical News > OncologyStudy: Surveillance Is for Middle-Risk Prostate Cancer Too
Thank you very much Carl. That is a very informative and full note and I think many will be greatly helped by reading it .
Many thanks Carl.
I find it amazing how most commentators here seem to know so much more than the trained and dedicated professionals that are trying to do their best for their patients...and this is achieved after just a small amount of research on the internet...these professionals must be really slow learners as they have studied this subject for many years and they still don't seem to get it...
I really don't understand why everyone continues to go back for followup appointments when it seems that the majority of the advice being provided to them is not relevant to each as an individual...
May I suggest that those who oppose suggested treatments etc. simply go and live their lives as the choose and free up the overloaded health systems for those that are in need...
Hello Kombi,
I sense a sarcastic tone in your message. I am sorry to see that. I don't in any way suggest that my choice is best for everyone. Many people engage in many forms of treatment and that, of course, is their choice. The problem that I have is that people do so without informing themselves. The United States Preventative Services Task Force is in my opinion a must read as it is the only unbiased piece of information available.
Personally, I've read urology textbooks, spoken with professionals including surgeons, oncologists, etc. Because both of my children are physicians they have provided me with access not to just the internet, but rather to the journals that physicians and physician specialists read.
But, again, that is just me and the way that I work. I need to conceptually believe in a treatment and see evidence that supports its use before I'll participate.
In any event, I wish you the very best.
Things are perhaps not as simple as that. The professionals know a great deal about their spectrum of medicine and surgery. They are necessarily blind to some therapies such as personal intolerances in diet. There are also diseases not understood or not recognised within standard medicine. Thus we get a fringe area where the patient must shift for themselves.
Then there is the all too human problem of doctors not all being equally good diagnosititions and not all being at their best each day and all day. And so on.
From the patient's point of view our quality of life can be at stake, even our lives. It is perhaps best to take a close interest. We may still conclude that the professional's advice will be taken, but on occasion we may not.
Hi Carl,
Personally, I don't read Kombi's remarks as him being sarcastic. There is more detectable I think, both irony and frustration. And I can relate to that.
Seems to me, that there may be what is at first an un obvious dividing line between the two camps, I. e. the Watch and Waiters and the Conformists ... And that is... economic status.
Those of us, myself included, being treated in the Public Health/Hospital System and who do not have the financial resources to step outside of it, simply do not have the luxury of demanding or holding out for a scan before biopsy. We are obliged to both trust the judgement of our Practitioners and conform with their recommendations. Perhaps the Govnmt will not fund MRI without prior biopsy? I don't know. Suffice to say I had to cover a $300
'gap ' anyway ( even though it was ' No scan without biopsy ' ).
We are both in Australia and where I am and no doubts where Kombi is they, the Med Profession / HealthService, let you know that if you defer treatment then you will go right to the bottom of the waiting list. And if you outright decline, then you will need a new referral and will have to be re-assessed before you can even get on the Waiting List.
So there's you W&W's saying "Oh, we may do this, or we may order up that ... Or we might drop this Chappy and see that one " ... And we don't necessarily believe what they're telling us, anyway ".
And then there's us. ... Right in the thick of it and with no alternatives. And the real irony is ... that we still care about you.
Regards
Dudley