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Member Comments: How has radiation as a primary treatment affected your life? Any changes?

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Posted 12/9/2012 4:21 PM (GMT 0)
Casey started a very informational thread re the life altering effects of RP.  Toward the end of that thread Squirm asked for another thread with a similar question re radiation.  So, here it is.  I have used the very same questions posed by Casey and simply subtituted "radiation" for "RP".

So, I invite the radiation guys to weigh in with their comments.  Feel free to comment be it LDR brachy, HDR brachy, brachy + IMRT, Cyber Knife, IMRT, IGRT, PBT or whatever.

Jim

QUESTION:   Has your life been "altered" after radiation as a primary treatment?   If so, how has this treatment changed your life?  Any problems that you didn't expect?  Follow-up procedures?  Unexpected consequences?  Unexpected severity of consequences?  Other side effects which have affected  your physical well-being?  What about your mental well-being?  Or, was it a minor bump in the road & not a big deal?  Let's make a collection of experiences in one thread which will serve others in the future.  Who will step forward first and get the ball rolling...?   I'll check-in after the weekend to see if we have any responses.

 

Posted 12/9/2012 4:30 PM (GMT 0)
As most of you know who have been around here for awhile, my choice (4 years ago) was LDR brachytherapy.  The simple answer to the question I posed is that (so far) PCa was a small bump in the road.  I had the usual angst after my diagnosis and the usual confusion and dismay involved in choosing a treatment. 

But, post-treatment, my life is basically the same.  My recovery from the seeding was short and uneventful. My sexual experiences are the same except for 50% or so loss of ejaculate.  My urinary experience is the same after the initial couple of months of minor frequency and urgency.  My bowel experience is unchanged.  My physical size is unchanged.  I have minor anxiety each year when I get a PSA test.

Life is good.

Jim

Posted 12/9/2012 4:31 PM (GMT 0)
I am only partially through my treatment so I can't really say what my final outcome shall be. However after 30 IMRT treatments completed in November I have had very few, wery minor SE. No urinary issues at all. In fact at this point everything is as it always has been and sometimes it is hard to believe I am going through this at all.

I am scheduled for my brachytherapy this Wednesday so I will add to this post later this week.
Posted 12/9/2012 5:35 PM (GMT 0)
So far only a bump in the road for me after three years. In fact, my experience has been almost identical to Tudpock's description above with one exception. In addition to less ejaculate, I have experienced some diminished desire as well. Other than that, I feel pretty good at age 70...and even better when the fish are biting!
Posted 12/9/2012 6:26 PM (GMT 0)
I was in a higher risk catagory with a G4+3 and a psa of 40 and a prostate size of 60cc. I added 9 months of Casodex and Proscar (3 prior and 3 post treatment) to a combination of LDR and IMRT, 85 gy and 45 gy for a total of 130 gy.

The normal loss of Libido and minor hot flashes due to HT disappeared within one or two months after stopping, although I could still get an errection I had absolutely no desire to do so.

The effects from seeding were the normal 4 weeks or urinary frequency and urgency that did not affect daily activities.

I have no side effects from any of the treatments, and I look at the process as a "bump" in the road.

I'm in a different position than most fighting this disease. After being mis diagonosed for 10 years by 5 different doctors and institutions, I came to the conclusion that most doctors and patients really don't understand this disease. I vowed that I would never let this happen again and spent thousands of hours reading every book, article and study on PC that I could find. I treated it exactly like any of the hundreds of consulting projects I had done; a problem to be solved by gathering information and analyzing it. There is a lot of misinformation out there.

The only change to my life is that I realized that the time and effort I spent researching this disease would be wasted if I did not make an effort to pass along what I had learned. Some of us are good at giving support, which is desperately needed; I'm good at analyzing and condensing information, and this is how I give back. This is the only change to my life, and it is for the better.

JohnT

 

Posted 12/9/2012 6:49 PM (GMT 0)
Tud:

I underwent IMRT, 38 sessions, but as SRT

Do you want comments on that in this thread?

Mel

Posted 12/9/2012 6:56 PM (GMT 0)
Mel, actually I'm trying to be true to Casey's original premise and looking at radiation as the PRIMARY treatment.  So, no...but that would be a good additional thread for others to see the impact of SRT or ART.

Thanks for asking.

Jim

Posted 12/9/2012 7:11 PM (GMT 0)
Thanks Tud!!
Posted 12/9/2012 7:28 PM (GMT 0)
i'm two years past treatment, which consisted of HT, BT and IgRT. i have never been incontinent, have no lingering bowel issues and while i have always had some urinary frequency i notice now that even sounds like running water makes me want/need to urinate but i can suppress the urge. 

i have radiation cystitis and at times it causes increased urinary frequency and i also have some burning when i urinate.  i also went through a period of about a month where i had blood in my urine but that has passed and according to my doctor may return periodically.  after the initial freakout the cyctitis is not a big deal either.

i have some ED.  i take 10mg cialis every other day and i can acheive and sustain an erection at any time -- maybe even better than before :-) .  i have mostly dry orgasms.

i have no major complaints and i consider myself fortunate to be in remission three years after diagnosis and able to enjoy all aspects of my life.  but i'm only as good as my next PSA test  cool  .

ed 

Posted 12/9/2012 7:32 PM (GMT 0)
Tud:

No problem. That's fine.

Mel

Posted 12/9/2012 8:04 PM (GMT 0)
I had Cyberknife treatments - 5 high dose treatments, one every other day.

I had a little burning during urination during and for about 10 days after treatment. And some fatigue for about a month after, if I exerted myself. But I learned if I took a 15 minute break and had some water, the fatigue passed. That's about it. Everything has been fine since.

I have completed about six Iron Butt Association certified long distance endurance ride since treatment, also. The shortest has been > 1,000 miles in <24 hours ( SaddleSore 1K) . I also did two >1,500 miles in <36 hours rides ( Bun Burner 1.5K) and a Great Lakes 100 - Around all 5 Great Lakes in < 100 hours. We did it in 94.5 hours, BTW. This next year, I am planning on doing a Lake Superior 1K , Lake Huron 1K, and if I can pull it off, a Bun Burner Gold ( >1,500 miles in <24 hours). That's considered an "Extreme" ride by the IBA.

For more info :  www.ironbutt.com

Please wish me & my prostate luck. After these rides, I wait at least 7 days before having a PSA done, BTW.

Life goes on after being diagnosed with CaP.

Posted 12/9/2012 8:33 PM (GMT 0)
wow JAV quite an accomplishment! my longest ride was a double century -- Grand Tour 1998 (203 miles) -- and that year i sustained a chronic perineal nerve injury cry .   is P-B-P in your future cool ?

*edit.....i thought some of those times looked suspicious  and then i realized you're talking about motorcycles, not bicycles.  still no easy feat i'm sure.

ed

 

Posted 12/9/2012 8:41 PM (GMT 0)
 42 treatments IMRT, 2.5 years ago, five months ago all the problems started, burning and blood in urine, bladder spasems, they thought kidney stones which it was not, on a cystiscope the found tumors and a badly damaged bladder and everything tied to it. After surgery and months of pain they have me in hyperbaric chamber for 80 hours, 2 hours per day. My thought is careless tecs giving the radiation as with the new systems they are suposed to hit the mark withing millimeters. Again I would never chose that route. Stats were G7 stage 2. One hyberbaric chamber treatment left tomarrow and they will doanother cystiscope to see how it has healed. Had ED but Viagra worked well, now after hyperbaric no ED or burning when unrinating or ejaculating. cost 130,000 radiation, 144,000 hyperbaric chamber. so much money in treating this chit they do not want to find a cure!JR yeah
Posted 12/9/2012 10:30 PM (GMT 0)

F8 said...
i'm two years past treatment, which consisted of HT, BT and IgRT. i have never been incontinent, have no lingering bowel issues and while i have always had some urinary frequency i notice now that even sounds like running water makes me want/need to urinate but i can suppress the urge.
i have radiation cystitis and at times it causes increased urinary frequency and i also have some burning when i urinate. i also went through a period of about a month where i had blood in my urine but that has passed and according to my doctor may return periodically. after the initial freakout the cyctitis is not a big deal either.

i have some ED. i take 10mg cialis every other day and i can acheive and sustain an erection at any time -- maybe even better than before [img]/community/emoticons/smile.gif[/img] . i have mostly dry orgasms.

i have no major complaints and i consider myself fortunate to be in remission three years after diagnosis and able to enjoy all aspects of my life. but i'm only as good as my next PSA test [img]/community/emoticons/cool.gif[/img] .

ed

Did you ever find out why the running water makes you want to urinate or the cause of the burning sensation?
Posted 12/9/2012 10:55 PM (GMT 0)
JohnR mentioned the cost of his standard radiation treatments.

For my Cyberknife treatment, my insurance company re-imbursed a total of about $40K ( I'm in Michigan ). It can vary depending where you are located in the country.

Dr. Katz who has a free-standing CK Center ( not affliated with a hospital or Medical Center) near NYC charges a flat rate fee of $18K (plus the cost of the MRI) for those without insurance or whose insurance won't approve the treatments, or those who want the treatments (now) and chose to submit a claim themselves to their insurance company.
Posted 12/10/2012 12:16 AM (GMT 0)
I had IMRT five years ago as a primary and only treatment. I'm 58 now. Eight months after the treatments I developed a urethral stricture. I spent 3 weeks in a Foley to stretch it back out, and this resolved the problem. Other that that, no problems. No ED, no other urinary issues. My PSA dropped to a low of 0.3 the firsts year, bounced up to 1.2 and has since been doing a slow sine wave between 0.4 and 0.7 (psa test every 6 months).

So, my answer is no issues that have effected my longer term well being. I'm glad I took the IMRT path. So far it seems like a minor bump in the road.

Best to all of you.....

Paul
Posted 12/10/2012 2:57 AM (GMT 0)
I had IGRT last February as my primary treatment. Urinary symptoms have actually improved but my hemorrhoids are acting up more that before. I am having some loss of libido, ejaculate is maybe 25% of before and some minor ED - arousal and maintaining. I also had to have a hernia operation but doubt that is related to PC. I do seem to be getting more join pain - gout and other arthritis symptoms.

Some other things that are likely related to PC and not the treatment is a slight increase in depression and greater sense of urgency to get into my shop and make things.

All the best,
Andrew
Posted 12/10/2012 2:44 PM (GMT 0)
I was not a reasonable candidate for surgery, denied by Dr. Menon (correctly too). Decided even though probably nothing was a cure for my high stats presented, went with best concepts I could find in Bolla studies (ADT+ radiations), I had to much cancer even for brachy therapy, apparently (looked into that too). I did get a very unique protocol of using 2 types of rays, 2 machines in different sessions.

Neutron rays 10 sessions- Cyclotron machine (huge and most powerful ray available)
Photon rays 24 sessions- IMRT machine (3rd most powerful ray, Proton is #2)

Signed off as to accepting the highest doseages possible, this was my primary treatment besides HT drugs. I am now approaching 11 yrs. since diagnosis and pretty pleased with the results and little to no big time issues, side effects of fatigue happened around 3/4 of the way into sessions, went away a few months later. Did not effect urinary to any big degree. I had total urinary blockage from PCa originally and got diagnosed via that issue, that was alot of cancer present...12/12 biopsies all 80-95% (2002). So, being continent is also a huge plus and glad I have that.
Posted 12/12/2012 8:34 PM (GMT 0)
I'm coming up on 3 months post LDR Brachy and can say that physically my life has changed very little. Some initial frequency but even that was very minor and is long gone. As I've posted in other threads there are times when I wake up and wonder if I had a really, really bad nightmare or if I really have PCa and went through treatment - and of course, unfortunately the answer is yes I have PCa but am glad of the treatment decision I made.
Posted 7/13/2013 2:36 PM (GMT 0)
Is it ok to bump a slightly aged thread back to the top? It's been almost 8 months since anyone commented on this one.

As one having radiation (with ADT2) as primary therapy, I'm curious if anyone here today has anything to add.
Posted 7/13/2013 3:26 PM (GMT 0)
Redwing, thanks for bumping this thread, it is very timely for me.
Posted 7/13/2013 4:01 PM (GMT 0)
Any brachy guys that have dealt with self cath or cystoscopy after treatment? Would you mind sharing?
Posted 7/13/2013 5:35 PM (GMT 0)
I had SBRT (like CyberKnife) - five 5-minute treatments. Some irritative urinary and rectal effects for about a week after treatment, for which I took daily Aleve, Flomax & Canasa. Then a return of irritative urinary symptoms after a year (completely ameliorated by Rapaflo). No lasting symptoms. No fatigue at all (I exercise a lot).

No ED at all. Semen is reduced - just a few drops. sad Testosterone levels were low for the first year, but have returned to normal. Libido is good.

If I had to do it over again, I'd definitely choose the same treatment, but I'd probably have waited on AS for a bit longer. My cancer volume was clearly increasing, so I knew I'd have to do something sooner or later. Knowing what I know now, I'd probably have opted for later.

The only lasting effect on my life has been that I've talked to many terrific people both online and in person about this, many of whom have become close friends.
Posted 7/13/2013 5:56 PM (GMT 0)
Allen
You have had great results, had you waited??? That's the whole thing about this disease,it should come with a crystal ball. Sure would make therapy selection a lot easier.
Posted 7/13/2013 6:41 PM (GMT 0)
I had 25 treatments of IMRT followed by brachytherapy. I have had the following:
1. minor rectal bleeding that started 1 year after treatment. Fortunately the bleeding has mostly stopped and this is no longer an issue
2. radiation cystitis started about the same time as the above. Mild burning while urinating. However, my stream has significantly improved since treatment. My prostate has shrunk significantly
3. Greater difficulty maintaining an erection. Totally corrected by 10mg of Cialis

Paul
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