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Surgery/Radiation in Mid-November - Major Family Event in April

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Posted 9/27/2012 6:42 PM (GMT 0)

I am on the horns of a dilema.  I am considering surgery or radiation (after I thoroughly research my options with physicians).  Thinking of Mid-November.  I have a major family event in April with over 100 guests.  If I get surgery or radiation, what are my chances of being able to hold this event in April with minimum of side effects and actually enjoy it?  I know nothing is predictable.  I can also hold off until May because I am low risk, however, I would have this nightmare hanging over my head during an important event, and worse, the cancer could escape my prostate in 7 months while waiting.  I will talk to specialists about this issue next week, just wondering your thoughts. Timing is just terrible.

j

Posted 9/27/2012 6:51 PM (GMT 0)
I went back to work 10 days after surgery...but I only sit at a desk..... Few weeks after that I was pushing a lawnmower etc... So ya, five months to re-coup would be a piece of cake.

On the other hand - I'd probably wait till January depending on where I was with my insurance deductible if I were you.

I guessing the gathering won't involve nudity and sex etc so I'd guess you'd be fine.
Posted 9/27/2012 7:46 PM (GMT 0)
It's for my son's Bar Mitzvah -- yea - better not have nudity there nono
Posted 9/27/2012 7:48 PM (GMT 0)
Only other apect is I am reading horror stories about guys who can't pee - need catheter's in for months because of scarring in urethra, etc...just massively ugly SEs...
Posted 9/27/2012 8:16 PM (GMT 0)
Whoa...slow down!  You have found an extremely tiny amount of PC...there is basically no smaller measurable amount.  Are you having any symptoms?  I'm wondering what's your rush into a aggressive treatment? 

Do you realize that roughly 50% of 50-year olds have asymptomatic (no symptoms) PC based on autopsy studies performed on men who died in accidents?  Roughly 60% of 60-year olds, 70% of 70-years olds, 40% of 40-year olds, etc, etc.  Comparing their small amount of PC to others, doctors indicate that the vast majority of those men will never have had symptoms and would have died with, rather than from, their PC.  Treatment is clearly not needed for everyone, and men in the very low risk category (like you, based on case characteristics you have provided so far) are encouraged to (in the words of world renowned urologist/surgeon Dr James Eastham from Memorial Sloan Kettering) "wait and see what this cancer will do."

PC is generally slow growing.  You have a extremely tiny amount, and there is absolutely no reason to believe yours would be anything but slow growing, but the way to find out is to proactively monitor it to see if it later become warranted to aggressively treat it.  In the mean time, you may want to consider the evidence that men just like you (biopsy-confirmed low risk PC) who participated in a study at the Univ of Calif at San Francisco reduced their PSA as a measure of PC progression just by changing lifestyle choices.  They pursued this approach with the knowledge that the outcomes of men with low risk PC in another study who deferred treatment until there were signs of progression outside of the low risk category were the same as those who sought immediate treatment. 

There is gross over-treatment of men with low-risk PC in the recent past, resulting in severe side effects that could have been avoided.  Men with very low risk PC are strongly urged by today's best-informed clinicians to "wait and see..."   Be wary of any clinician seeking to rush someone with low risk PC into aggressive treatment, and be sure to treat your actual disease, not your fears.

Posted 9/27/2012 8:37 PM (GMT 0)
you'll be fine for event either way and I don't think you should choose treatment based on a future daily event.
Posted 9/27/2012 8:45 PM (GMT 0)
Couple reasons aggressive surveillance won't work for me.  My biopsy was a bloodbath - urologist had to alert his colo-rectal surgeon buddy in the nearby hospital that he may need to send me over stat if my bleeding did not stop..it eventually did with some type of compression.  Uro stated I would bleed in the future with biopsies because of hemorroidal veins that would be hit..althought this did not happen in biopsy 2 years ago.  Also, I have been dealing with on/off prostatitis pain for over 15 years and enlarged prostate that has me getting up 1 to 4 times a night.  Sometimes difficult to pee, sometimes not so.  Psychologically unsure I can handle knowing cancer is inside me and degree of biopsy risk.  I have to be put to sleep for my biopsies because any other way is so painful with my prostate it is unbearable.  Therefore getting put to sleep is a risk too. This may be a chance to take care of these issues once and for all...although if I get the side effects I may wish i never had done so...and I could die in surgery - not a good thought...

Post Edited (jjman) : 9/27/2012 2:49:30 PM (GMT-6)

Posted 9/27/2012 8:57 PM (GMT 0)
Casey your post is not appropriate.

You are not a medical professional and should not be posting such stuff. At the very least you should find a way of doing so without coming across as you do.

On the other side of the bandwidth is an individual who is making a tough, albeit it hardly controversial decision, during a very tough stage of his life.

The new member clearly states that he has undergone thorough research with actual professionals.

Posts like yours are not only counter productive in my opinion, they can raise legal concerns for the owner of the site.
Posted 9/27/2012 9:36 PM (GMT 0)
While I understand that PC is usually slow growing, and that many men with PC would be better off with AS, and that the rate of aggressive treatment is probably too high, despite all this my personal experience tends to bias me towards active treatment for borderline cases. I was just *exactly* on the borderline between AS and treatment when I made my decision. Of my four needle biopsies only one was positive... in only one core... and for a small amount of cancer... which one pathologist characterized as low-risk (GS6, 3+3) and another pathologist as intermediate risk (GS7, 3+4).

In the end the deciding factors were that I had a large, achy prostate that didn't work very well and had at least some cancer, and that keeping it would require a seemingly endless progression of biopsies (which I had never learned to like very much). It just seemed like my prostate wasn't much fun any more and was getting to be a high-maintenance organ that could go.

As it turned out, AS would have been a bad idea for me. All those biopsies had managed to underestimate the size and the grade of the cancer. I waited seven months between diagnosis and surgery and, when I got my post-surgical pathology report (GS9, positive margins) I kinda wished I hadn't waited so long.

So, it's up to you. On the one hand you shouldn't let anyone rush you into surgery. But, on the other hand, if your prostate is not worth keeping, it's not worth keeping.

I have pretty much all of the side-effects of prostate surgery and at three months post-op the only barrier I can see that would prevent me from having a Bar Mitzvah for my son is that he is too old... and that we are not Jewish.

Good luck with whatever you decide to do.
Posted 9/27/2012 10:26 PM (GMT 0)
If you are treated in Nov/Dec by either surgery or radiation you should be fine by April.....however, sometimes crap happens , very unlikely but never say never...you could also get run over by a bus.
Posted 9/27/2012 10:30 PM (GMT 0)
I'll speak for radiation - I would have been fine for a major family event within about 3 weeks of completing radiation. You'd be fine if you do radiation in Nov.
Posted 9/28/2012 12:46 AM (GMT 0)
jjman, your concerns about bleeding from ongoing biopsies are sound, although it is highly plausible that other imaging methods will largely replace TRUS biopsy techniques for ongoing monitoring of active surveillance patients in the not too distant future.

I imagine that this same bleeding issue makes brachytherapy an unlikely candidate as well.  External beam radiation (or any radiation therapy) has low incidence of short term side effects...the concern for someone as young as you is the potential for long-term side effects since you should live another 30 years, on average.  In the time frame of your concern, more than 50% of surgery patients will have re-gained continence.  Most of the rest would be down to wearing only about one absorbancy pad per day, and a relatively small percentage will have persistent problems.

Hope this helps.

Posted 9/28/2012 2:06 AM (GMT 0)
I find nothing inappropriate about Caseys response, reads reasonable to me.

Post Edited (vn16) : 9/27/2012 8:09:26 PM (GMT-6)

Posted 9/28/2012 2:39 AM (GMT 0)
Thank you all for your responses. This is a very stressful period for me as all of you have been through it. I do have concerns about long term radiation effects. I was told young children can't be within 4 feet of me with seeds. Wow. I know my uro stated in about 10 years they should have new methods for treating what I have - I know some men would wait with the surveilance method and see what pops up in future prostate care. We're not there yet.
Posted 9/28/2012 2:59 AM (GMT 0)
Lets not be drama queens here....people talking about posts leading to legal action??? cmon...its a web forum full of nothing but opinions. As a poster...one needs to decide whats right for himself by research and advice from Drs....Not someones opinion. sure its a great place to learn and so arent every other web forum. In no way can someone be held liable for an opinion on a forum. Lets not pretned were lawyers and doctors folks...lets keep it what it is...an information/support forum.
Posted 9/28/2012 3:19 AM (GMT 0)
Actually Casper, and the Mods might confirm this, there are things said on this forum from time to time that put the owner of the site in a potentially risky situation. Bad mouthing medical professionals is a case in point for instance. This is not just a blog.

People dispensing medical advice that contradicts what the very professionals quoted in the original post suggest is also dicey. I think we have to be careful about that here. Sharing experiences is of course different. But telling people they have indolent cancer and to ignore the suggestions of actual professionals, as happens too often, is both dicey and in my personal opinion, extremely counter productive.

Btw, I'll bet you have at least 10 attorneys here. You might be surprised what some of us do.
Posted 9/28/2012 3:51 AM (GMT 0)
4. Use good judgement. NEVER rely on information or opinions exchanged to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.

Thats rule number 4 in the forum rules. Im sure there are things that can cause issues but what casey did was offer his opinions....granted a little strong in my opinion but I cant see how he can be held liable according to rule number 4...
Posted 9/28/2012 6:55 AM (GMT 0)
Treatment in Nov/Dec and a Bar Mitzvah in April should be fine.
I'd get plenty of help for the event from other memebrs of your family though, I expect they will be willing helpers once they know that you have had some treatment. You probably don't need to go into details, just telling people you have had to have surgery is often enough, they will understand that that will mean you may not be able to move tables and carry crates etc. And you might not be able to do a lot of dancing.
Recovery can go to both extremes. Yes some people have had trouble with catheters for weeks afterwards, but I also seem to recall that someone here posted that they were able to play 9 holes of golf or even tennis within a month of surgery. Get yourself nice and fit now.

Don't rely too much on just the stories of people at this forum. What we often suspect here is that the people who come to this forum are the ones with problems as the ones who have had no problems are not hunting on the internet for solutions.

External radiation does not make you radioactive at all.
Internal radiaton (seeds) only makes you a risk to children, pregnant women etc for a few weeks if they get within 3 or 4 feet of you. If you had seeds in December I think you'd be safe by April.

You sound like you had a bad biopsy. But don't worry that that would mean that you would be at risk of bleeding a lot during surgery as the surgeon can see what they're doing during surgery whereas in a biopsy they are more or less blind. In you case they clearly hit a blood vessel they couldn't see.

Hey. Don't worry about things like dying during surgery. The stats are now incredibly good for prostatectomies. I'm not being flippant to suggest that you will be more at risk of dying in a crash while driving to and from the hospital.

All the best
Alf
Posted 9/28/2012 12:36 PM (GMT 0)
You didn't mention what type of radiation you are considering. Most external beam radiation treatments (i.e. IMRT or Proton) require a series of several weeks of daily treatment. Brachytherapy is usually a once (low dose type) or twice (high dose) treatment that is obviously completed much more quickly. If you choose an EBRT treatment and start in Mid-Nov., you will be completed by the end of January. Unless you have some sort of serious and unusual complication, there is no reason you could not fully participate in activities in April. In most instances of radiation treatment, people are able to continue their normal activities while incurring minimal side effects, and those side effects usually dissipate within a few weeks after conclusion of treatment.

I believe that any form of radiation treatment that you might choose would not keep you from fully participating in the April event that you have described.

Steve
Posted 9/28/2012 1:00 PM (GMT 0)
Hmmmm. Not sure seeds would be good for you because of your weak flow (I know that is part of the evaluation), and would be concerned about the bleeding for either the seeds or the surgery (it's a bloody operation). As E. Alf said "Internal radiaton (seeds) only makes you a risk to children, pregnant women etc for a few weeks if they get within 3 or 4 feet of you. If you had seeds in December I think you'd be safe by April."


I would certainly make your doctors aware of your weak flow and bleeding when you consult with them. Have you had second opinions for both surgery and radiation? Take you time and don't rush into any treatment before you are sure it's what you want. There are no do-overs.

Good luck to you.
Posted 9/28/2012 1:34 PM (GMT 0)
Also consider High Dose Rate brachytherapy.  It does not leave the seed radiation in the body and there are not the problems of seed migration, body changes, proximity to children, etc.   It is better technology than permanent seeds and provides a better and more accurate isocloud for potentially better cancer control and fewer side effects.   I had two procedures and had no activity restrictions or problems at all.   Best info is at www.cetmc.com, website of the HDR pioneer Dr Jeffrey Demanes, head of Brachytherapy at UCLA.   Based on the statistics you give you may be a candidate for HDR monotherapy.

As to his rectal bleeding, brachytherapy catheter insertions do not go through the rectum as transrectal biopsies do.   I have not seen this as an issue in any of the research I have done on brachytherapy.  

Posted 9/28/2012 1:49 PM (GMT 0)
jjman, after posting yesterday in your thread my belief that “other imaging methods will largely replace TRUS biopsy techniques for ongoing monitoring of active surveillance patients in the not too distant future,” I found this article which was posted today at The “New” Prostate Cancer Infolink site titled, “ MRI testing of men with low-risk prostate cancer as candidates for active surveillance .” Science progresses, as I’ve previously described, a step-at-a-time, and of course this article does not describe a leap-frog into the scenario I envisioned yesterday, but it certainly represents a step in the right direction for broader acceptability of AS for a larger number of low-risk candidates.   Progress is unfolding in front of us. jjman, this news and this information may not be of direct interest to you at this juncture, but there will likely be other newcomers with similar low-risc PC plus bleeding issues who may come to this thread hungry for knowledge and information in the future who may benefit from this or the other info previously posted… I recommend The “New” Prostate Cancer Infolink site for the daily reading list of any person wishing to be better informed about the world of PC…
Posted 9/28/2012 5:10 PM (GMT 0)
"Don't rely too much on just the stories of people at this forum. What we often suspect here is that the people who come to this forum are the ones with problems as the ones who have had no problems are not hunting on the internet for solutions."

That is extremely wise advice in my opinion. It's not a knock on anyone here, but what appears to be a fact.

Ever notice that wheneve rone has any sort of ailment a resulting Google query typically results in negative, worse case scenario or fla tout lunacy? Plenty of medical professionals have advised me not to Google in such cases but to seek out professional advice instead.
Posted 9/28/2012 6:01 PM (GMT 0)
 if thats what you believe, why are you here? I think there is much to learn from people here, and by google searches.

Post Edited (vn16) : 9/28/2012 12:10:22 PM (GMT-6)

Posted 9/28/2012 6:22 PM (GMT 0)
"don't rely too much"

There are many reasons for being here.

Practical, psychological, emotional.
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