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I was diagnosed Jan 8th, 2008. I am 53 yrs. Elevated PSA for 6 years or more. PSA of 10 most least 3 now 6.2. Biopsy in 2004 clean. 2008 1% of 1 of ten cores. Moderate grade I guess. CT and Bone scans clear.
Question
Am I lucky to learn so early or can 1% of 1 of ten cores be interprited as adequate enough of a sample to require surgery. I have had three opinions two from very good Docs. All seem to say go with the surgery and Robotic from a good surgeon. I am cleared for March 27th to have robotic at Universtiy of Chicago, Dr. Shalhav.
Has anyone on this site had experience with Dr. Shalhav.
Thanks so much. This site has been so helpful in this difficult time.
From what you have indicated, you are a prime candidate for Active Surveillance. Although that was my choice, I don't like to push it, but it is something you might like to consider. You need to be aware that researchers at Johns Hopkins Memorial recently published their conclusion that delaying trreatment for a man like you might be the best decision.
Please read this piece http://tinyurl.com/223wgh before making a final decision. if you want any more information, don't hesitate to mail me.
I am very very inclined to go with Terry's views on this. Please don't be rushed into surgery. You do have many options. I was (in a funny way) lucky that I had no choice. It was too late for surgery. I had T4 tumour with spread to seminal vesicles and pelvic wall. My initial PSA was 182
I underwent 37 sessions of RT and had hormone therapy from the start. That therapy was supposed to last 3yrs at least, but I'm extremely fortunate in that I stopped all meds 6 months ahead of schedule and now, 6 months later, my PSA is still leass than 1.0
I think what I am trying to say is that despite having such a terrible prognosis, I have come through all the treatment relatively unscathed. I am delighted to say "EVERYTHING" works...even though I do have to pee more often as the RT shrunk my bladder to less capacity...a very small price to pay.
After reading forums all around the globe, I am glad I couldn't have surgery. I don't think I might have come out of that quite so well. It is radical, and there are severe lifetime effects if you are very unlucky. I reckon it's very hard to find a brillant surgeon who can perform the op with minimal nerve damage, specially here in the UK
Whatever you decide, we all wish you the very best for a successful outcome.
I found myself in a very similar situation. You can find all the details under mentors Fred B but you have to pull it up under Bill B(terry-if you pull up Fred B it comes as Robert Lunsford and Bill B has mine). I'm 56 have had high PSA for 8-10 years no PCa on 8 core biopsy about 8yrs ago, 4% of one core of a 12 core biopsy in December 2007.
My first thought was surgery, get it out. Then after reading I was dismayed with the side effects, chance of recurrence etc. I have opted for Active Surveillance. I figure the PCa has been around for awhile with my elevated PSA and no other reason for it. DREs have always been negative and have had no problems from it such as urgency, waking at night to run to bathroom etc.
This route gives you time to carefully consider options. The key I think is to make sure you keep regular followups so you have an idea what is going on. Emotionally it may be hard on you to live with the Dx and not "do something". You did not say whether you are married, but your family may have objections, I know mine have. Since I feel ok with what I am doing, my wife is going along however reluctant.
Ultimately the choice is yours. Good luck with whatever you choose.
You've made a very good point about something I felt strongly about for a few years now...."Normal PSA Levels.
I am convinced that there must be millions of men around the world living a full, healthy life with what the medics would call "elevated" PSA levels.
When I was diagnosed, my PSA was 182, and I had only went to see my doctor because I was tired with being tired...too many times going for a pee during the night. I considered that just part of getting into my 50s.
I will admit, though, it was lucky I did go, because the diagnosis made me realise the cause of the occassional pain after ejaculation, and my cancer was certainly well advanced.
It makes me wonder why some men have a PSA in the 100s and still do well with treatment, while some are in trouble with a PSA of 6 or therabouts.
I know of quite a few guys who have had a PSA of between 12 and 20 for many years and they don't have cancer.
I'll wager mine was always over 10, all through my life, from teenage years.
I have asked this before and I have never seen any statistics about it....has there ever been a study of the PSA levels in men right through from puberty till 50s?
I can confidently say that no one has ever done a study on PSA changes over the years along the lines you suggest – if only because PSA testing has only been around for about 15 years..
The reason that there is such a variance in outcomes at differing PSA levels is because PSA is not prostate cancer specific. At least 65% of men with elevated PSA levels are not diagnosed with prostate cancer and at least 15% of men with ‘normal’ PSA levels were found to have prostate cancer in the one (and only, I think) study that looked at this aspect. Since there are many more men with ‘normal’ PSA levels, it follows that there are more men undiagnosed with what we term prostate cancer because they have ‘low’ PSA levels than there are men diagnosed with prostate cancer because of elevated PSA levels. Hence the calls from some quarters for better diagnostic tools – these calls are largely ignored because of the billions of dollars spent on PSA tests.
I’ve mailed Fred apologizing for including the incorrect Link on his entry. The correct address is http://www.yananow.net/Mentors/FredB.htm
Talking of PSA levels, I received an interesting update today from Trueman Seamans. He was diagnosed almost 10 years ago with a PSA at a staggering level of 4,212 ng/ml – that is Four thousand two hundred and twelve!! When he didn’t send me an update about 18 months ago, I made some enquiries and it was thought that he had died, so I recorded that on the site, while leaving his story intact because it is such an extraordinary one. Well, I was wrong about his death and his story is one that should give us all a bit more hope.
I haven’t uploaded the latest news yet, but will try to do it later today or, more likely, tomorrow. It’s as hot as….here today and I don’t operate well in temperatures about 30C. My cardiologist tells me it’s the Beta blockers I’m taking to keep my heart going.
Thanks for the PSA info, putting me right, but I could hardly take it in after reading on and finding TRUEMAN IS WITH US!!
WOW! THAT HAS TO BE THE BEST NEWS I HAVE EVER READ ON THIS SITE!!!!
I'm happy...and stunned. When the temperature drops a bit there in Oz, you gotta give us the full story.
AMAZING...FANTASTIC!
Terry,
I have just read Trueman's update. That great news is tempered now with awful sadness about the tragic loss of Trueman's youngest son.
Trueman's story was the spur which got me fighting my bad prognosis, and my wife and I have constantly re-read that story of his journey against seemingly impossible odds.
Our thoughts are now with Trueman and his family that they may all find comfort and peace.
We are deeply sad at heart to read of his loss.
Just to follow up my original concern. I dont think I was clear. Forgive me for I am a little excited. My first concern is not the PSA but the amount of cancerous tissue found on the biopsy. Margin for error to the postive and all. 1% of one core does not seem a lot. If they found cancer, is it likely that its accurate or likely to be more. My biggest fear is to having the surgery and they say ooopss No cancer. My original Doc is the weakest link. I dropped him like a hot rock. All my further opinions were by very good Doc's all base their treatment on this Biopsy done in an office with crude if you will environment.
Sorry we didn't answer your original concerns adequately, Frank.
Can I suggest you read two bits by PCa author and activist Donna Pogliano. The first was in response to a man with a very similar diagnosis to yours and it can be found at http://www.prostatecancerwatchfulwaiting.co.za/oo.html
Never one to mince words she opens up with this little salvo From what I'm reading here, you're thinking of undergoing local treatment for one silly millimeter of prostate cancer?
If what you posted about your situation is correctly stated, this is what is meant by "insignificant disease". When they talk about prostate cancer being overdiagnosed and overtreated, they're talking about YOU!
The medical profession may have lured you into the medical mill with a positive biopsy, but you DO still have the option of removing yourself from the treadmill of diagnosis-by-biopsy followed by immediate-local-treatment. I'm sure that either a surgeon or a radiation oncologist would be delighted to treat you because if they only treated patients with your extent of disease their stats would be lookin' REALLY GOOD!
Another of her many excellent posts is here http://www.yananow.net/newbyadvice.htm which she conlcudes with:
So, start educating yourself further. You have time. You don't need to rush into a treatment decision you may live to regret, particularly if your staging to determine extent of disease is not yet complete. There are other treatment options including other forms of radiation, other combination protocols, androgen deprivation therapy as primary treatment and a whole bunch of stuff to know, some of which is essential and some of which is relatively more optional. At minimum, you should:
- Have your Gleason verified by an expert
- Answer the question: Do I really need to be treated or am I a candidate for giving Watchful Waiting a try?
- If immediate treatment is indicated based on thorough staging of the extent and nature of disease, be sure the procedure is done by an expert.
- If you are considering local treatment you need to be fully informed regarding the details of how the procedure is conducted, what the side effects are, what the probability of recurrence is likely to be, what the financial ramifications of your treatment are and how they will be handled, and what salvage options are available to you if primary treatment should be unsuccessful.
- If you are considering a form of local treatment you need to know how your present age, other health issues, urinary status and priorities figure into the equation.
Proper selection of the patient for a treatment protocol, proper preparation of the patient for the treatment protocol, and minimizing side effects and maximizing the potential for successful treatment by enlisting an expert physician are essential elements in our attempt to optimize outcomes.
