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Just diagnosed a month ago - watchfull waiting - having 2nd thoughts about it

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Posted 5/24/2011 2:47 AM (GMT 0)
Hi,

My name is Bob, I just turned 56 & was diagnosed with prostate cancer about a month ago. I live in Gatineau Quebec, Canada. In Nov. of 2010 I had my annual physical & blood/PSA tests & learned that I went from under 0 to 6.5 inside a year so I was sent for another blood test & to see a urologist who sent me for a biopsy/12 samples. One of the samples on the upper right hand side of my prostate tested positive for cancer 3+3 on the Gleason scale. My urologist told me that my 2nd PSA test came back with a 1.0 score; I went from 6.5 in Nov. 2010 down to 1.0 in Feb. 2011. The Dr. couldn't explain this but suggested that since my PSA score was now low added to the fact that my cancer Gleason scale was also low (3+3=6) & considering my relative young age, I should consider what is called Watchful waiting/Active surveillance. I agreed to this. This was two weeks ago & now I am convinced I should opt to go with a prostatectomy instead.

Here in Canada we have National Health Care but it has it's drawbacks. For example, I would certainly prefer to have the DaVinci procedure but only 3 hospitals, Montreal, Toronto & Vancouver have the technology so I would be looking at a radical prostatetactomy/open surgery. I am increasingly ready to risk living with the possibilities of impotence & incontinence rather than risk having my cancer spread. I trust my urologist but I cannot live with the specter of this disease hanging over my head. My wife tells me that she's o.k. with my decision because bottom line, it's my life & she wants to have a few more good years together. She assures me that the sexual part of our marriage is secondary at this stage of our lives together. Has anyone else reading this, experienced a similar situation to mine. Would love to have your feedback. I wish everyone afflicted with this terrible disease, the very best of luck. We all need one another. Many many thanks for this site/forum.

Bob G.
Posted 5/24/2011 3:33 AM (GMT 0)
Bob,
You need to do some more research on Active Survelience before you make a decision. One of the the most prominent reseachers in AS is Dr Lawrence Klotz at Sunnybrook, which I believe is in Toronto. Just Google his name and your can see the data he has published. You can also read "Invasion of the Prostate Snatchers" by Dr Mark Scholz, a noted prostate oncologist.
From all the data available thus far approximately 30% of the men on AS end up getting treated in the future because of progresssion of their PC. All the data shows that treatment later has identical results to immediate treatment.
The biggest obstacle to AS is the psychological aspect; if you can live with the idea of having a cancer that will never hurt you, and get a good doctor that is familiar with monitoring AS it is a very good option as you eliminate or delay all side affects from treatments. There are thousands of men currently on AS. If your psa would not have spiked that one time you would have been on AS without knowing it, as millions of other men are, as the % of men having undetected PC is approximately their age. Very few men ever die of a low volume G6 and you have years, not weeks or months to make a decision. Take your time and learn about your individual cancer as all prostate cancer is not created equal. Some are harmless and others very agressive; yours appears to be on the harmless end.
JohnT
Posted 5/24/2011 3:33 AM (GMT 0)
Hello Bob and welcome...

With your stats, AS is not that poor a choice...This path is certainly not for everyone, but in your case, the side-effects of treatment might surpass the risk of doing nothing..,You have plenty of time, read some books on the subject, learn more about the disease you are confronting..Incontinence and impotence are not to be taken lightly and can be avoided with less aggressive treatment..I'm sure they do Brachytherapy in Canada..

"Guide to surviving Prostate Cancer" by Dr. Patrick Walsh (expert surgeon) and "Invasion of the Prostate Snatchers" by Blum / Scholz will give you two completely different view-points about what you are facing..

Dealing with PC can and will alter your life but there is no need to jump off the deep end until you have a better understanding about what you are facing...Take comfort in the fact that 97% of G-6 guys die of something other than prostate cancer no matter what treatment they choose...
Posted 5/24/2011 1:34 PM (GMT 0)
There was also laparascopic (keyhole) without robots before robotic laparascopic. The results may be similar. I don't know if that is an option.
There is HIFU at the Cleveland Clinic Canada and other places in Canada (don't know if insurance pays for it.) That would be a treatment with perhaps less complications but results that are not fully documented.
There is no rush to make a decision. Good luck.
Posted 5/24/2011 2:36 PM (GMT 0)
Hi bob, I live in New Brunswick and had laparoscopic surgery, 3 or 4 small holes in your belly, 1 day in hospital, catheter in for a week.

 

Posted 5/24/2011 2:39 PM (GMT 0)
Bob -

It's the quality of the surgeon more so than the procedure itself.

What matters most is that you are comfortable with your choices both in procedure and in surgeon.

If you do opt for surgery, don't automatically assume you will be dealing with incontinence and ED. Some do, some do for a limited time, some of us not at all or to minimal degree. The only certainty vis-a-vis ED is that even if everything is working, it won't be exactly the same. It's more mechanical from my experience but I've heard that changes over time and in fact have witnessed gradual change myself.

On the AS, there are many here qualified to discuss the option with you. I certainly understand your emotional desire to just get the organ out and hope for a good pathology. Btw, with your initial numbers there is no reason you shouldn't have a good pathology. I always assumed AS was a good option for people who could handle it psychologically, who had verified low gleason scores, and who were heading towards "old". In my personal opinion, and that of many oncologists I have spoken with, it isn't great for young guys. A recent study posted here from MSK also mentioned that it's usually a better option for older guys. I guess what constitutes "older" is debatable.

either way, you've got time to think it through and discuss it with many medical professionals. In the end, it's about your comfort level and what real professionals tell you.

If you do end up going with surgery, regardless of type, please don't discount the importance of going with someone who has a ton of experience. Surgical skill can determine a whole lot when it comes to quality of life issues and margins.
Posted 5/24/2011 3:46 PM (GMT 0)
To John T., Fairwind, robertcool, normeck & davidg. Thank you all so much for your feedback/information & concern.  I will certainly take all this feedback into consideration & will also seek out the reading material suggested.   It is comforting to realise how much people care.  Thanks again guys & I wish all of you the very best in your battle with this disease.  I will let you know which way I decide to go.  God bless.
Posted 5/24/2011 3:49 PM (GMT 0)
Bob,

As you can see by my signature, our stats are similar. If you do decide to have surgery, I can highly recommend a surgeon in Ottawa who is very close to you - His name is Dr. Cagiannos http://www.ontariodoctordirectory.ca/Ottawa/Doctor-Ilias-Cagiannos-53943.html and he is fantastic. He spent a great deal of time with my wife and I going over every option available and had no issues referring me to specialists in robotic, radiation, laparoscopic, etc... whatever I decided to to (no pressure). In the end I chose open surgery. I felt a great confidence in this man after our meeting. He went over very carefully, all of the possible side effects and risks associated with each procedure. The nerve sparing went extremely well (if you know what I mean) and there was barely a leak after catheter removal.

As I live about 300km from Ottawa, I stayed at a motel next to the hospital - It is for patients of the Ottawa General and is subsidized by the Rotery Club and is aptly named the Rotel Motel - cost is about $47 per day. My wife stayed with me after I was discharged from hospital, about 4 days then I was on my own for an additional 6 days. The hospital is about a 200m walk which is very handy if you run into trouble. They have full service cafeterias at the Ottawa General and the CHEO.

I am not advocating surgery to anyone. The choice you make is yours and yours alone. I am just giving you my experience thus far with this disease.

I wish you well on your journey. Take care Bob.
Posted 5/24/2011 4:26 PM (GMT 0)
BobG,

There are anecdotal cases (even some passing thru Healingwell) where
apparently the needles of the Biopsy eliminated/killed the small amount of cancer cells (Prostatectomy by Biopsy ) and either the PSA fell, or (a bit more distressing) when the patient HAD the real prostatectomy they found nothing when they examined the removed prostate. That would really not make one's day eh?

(Also I should add that some people (and most doctors) scoff at the Prost by Biopsy theory .. but give a better explanation, huh?).

Soooo, maybe watchful waiting is a good idea. Kind of strange that only a month after biopsy the PSA would be so low tho. Usually a biopsy makes the prostate pretty angry and the PSA does eventually go down to original levels ... but to PSA 1 after only a month?

Good luck with whatever path you take ...

J
Posted 5/24/2011 5:33 PM (GMT 0)
Bob, here is just one of many articles and studies I found in looking for the reasons for and against AS.

www.webmd.com/prostate-cancer/news/20101130/prostate-cancer-active-surveillance-quality-life

Thought you might like to read it. If I had been with your stats, I for one would have looked very strongly at AS.

It should be noted that when looking at QoL, one of the things pointed out was the patients ability to deal with knowing they had PCa but were willing to live their lives and continue monitoring it.

Good luck in your quest for the right answer for you,

Sonny
Posted 5/24/2011 10:14 PM (GMT 0)
I agree that AS sounds like a good option for you. I was very comfortable with AS, but was able to do it for only 2 years. I would have liked to do it forever, but my status changed.

Also, please understand that there are options other than surgery: some very good ones. I chose permanent-seed brachytherapy, and I could not be happier.

There are many options available to you. I don' t know how the government controlled health care system deals with those options, but I am afraid we too are about to find out.

God Bless you, Man

Posted 5/25/2011 12:49 AM (GMT 0)
To GOP, Sonny3, JStars & adderboy,

thank you so much for taking the time to share your experience, strength & hope concerning our common problem which I now share with you all. GOP, you're right about Health Care in a sense. Because I live in Quebec I can't have my surgery anywhere else in Canada because Quebec is the only province who did not sign the Federal Bill of the Canadian Health Act. Quebec sets it's own payment scale which happens to be the lowest of all the provinces therefore most provinces will not take Quebec patients. But I digress.

adderboy a fellow Canuck knows what I'm referring to here. So, I have an appointment with my urologist this coming Friday & I decided to have open surgery/prostatectomy. I just can't shake the feeling that it's the right/safe thing to do.
From everything I've read & all of the great feedback which I received my chances of eventually going back to a somewhat regular life seem pretty good. My urologist has a very good reputation as a surgeon & is well known in the region.

Again to all of yous, many thanks. If there's a silver lining to this disease it's discovering that there are great people in this world, something I sometimes forget. I'm not an overly religious man but needles to say I've been praying a bit lately & I'll make a prayer for all of you also. God bless.

Bob G.
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Posted 5/25/2011 4:45 AM (GMT 0)
Bob,

Personally, I'd give yourself some more time before deciding on a treatment option (AS is a treatment option, too).  You're too near the initial emotional shock of diagnosis and haven't had much  time to research this disease as it applies to you individually.  With your low scores you don't have to be in a rush.

I was your age when diagnosed and had low numbers like you.  I waited 6 months before choosing prostatectomy.  The wait helped give me a chance to research and study options and to get a little more emotionally distanced from my initial feelings upon diagnosis. I was much more confident of my decision by waiting and taking the time to study prostate cancer further.

Of course it's your decision, but I want to provide you with another perspective from someone who was in the same boat as you are.

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