Radiation therepy after failed postate sugery

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Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 5/21/2010 6:15 PM (GMT -6)   
I get lost in these forums so :).. Ok im past poster from 3 years ago that underwent radical proatate surgery.
 i was  a gleason 7 4/3 supposedly contained cancer ... well that has changed :( about 3 months ago on a folow up it was found that my psa which for 3 and a half years was less than .02... so all was well.. last year it was .2 so some watching started... last visit this year was .4 so i has doubled in 1 year... Recommended to have proton beam radiation treatment
 
Im looking for others that may have gone this route and can helpe me prepare and know the REAL what to expect. the doctors all say the same textbook things. some one that has really done it talk to me :)
 
i have already started the treatment today with my trial run last week did all the prep exrays etc and monday i start with the real deal.
 and am concerened about the side effects. I had a heart atack a couple years ago and high blood pressure etc all treated with 2 stints and blood pressure is under control so may not be a issue. Reasonable health for 62 years old other than those .  Big concerns are incontenance again ( am ok now no pads no leaking. And some sexual capability... dont want to pass throught that again :)
 
is there any good information that  some one other than a doctor can make sense of on Statistics of recovery and long term no return as of the results of radiation therepy...  i dont want to do hormone or chemo... if this does not work then ill just have to accept the consequences of the cancer  thanks for any advice or assistance

 
 
 

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 5/22/2010 5:53 AM (GMT -6)   
Telstar, I'm answering your post more to bring it up to the top than to answer your question. There are quite a few here who have had salvage therapy and hopefully they'll answer you soon.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 5/22/2010 6:40 AM (GMT -6)   
I had surgery in July 2009 and my PSA was up to 0.4 by March 2010 without me ever having joined the zero club. I am thus currently having RT (Just had 19 of 33 sessions, with beams from 7 angles). I expect someone who is having RT three years or so on from surgery will be able to help you more.

With RT some docs will want to use Hormone Therapy at the same time; this is said to be more effective (my doc is not giving HT at the same time though)

RT and HT both have side effects, and there are the short term and long term ones.

I don't have to worry about HT just yet, but I've been looking in to it. HT messes up your hormone balance, which means you might become more emotional, have hot flushes/flashes, put on weight, lose muscle tone, get bigger breasts, lose interest in sex, etc. These effects are short term and should have gone away again a while after HT finishes. HT should do the work by starving the tumour of testosterone which is one of the things that makes it grow.
There may be a permanent effect on the quality of bone structure however (a bit like having mild osteoperosis)
(If I am honest I am thus not keen to ever have HT)

I also looked into RT. And I thus went into RT with this in my head regarding side-effects.

Short term the RT would make me tired, might give me diarrhoea or blood in my stools, or make me feel like I needed to do a BM all the time; it might make me feel sick or nauseous and might make me need to go to the WC more often. Well I am just over half way through and so far I am tired and do have to pee and poo more frequently. If I sit still for too long then I also get a slight tenderness in my skin on my butocks in the area where two of the beams go in.
Things will no doubt get worse, but the short-term side effects should go away within about 6 months of the RT finishing, and some aspects should get better much sooner, like tyhe sore skin.

Nothing was said about any short term side effects of RT on my erection etc, and I have yet to notice any. Being tired gets in the way anyway, but I've been getting woken by nocturnal erections three or four times a week, so some systems are still functioning okay.

Long term what I understand is that it is likely that your level of continence and sexual function will never get any better than the level they have reached when RT starts. And that over time (meaning ten or more years) things will get worse.

If the RT works then it will take longer tio work that the 33 sessions, as the tumour does not "die" within those 33 sessions, but as a resuklt of the damage caused by the 33 sessions, so I will not be getting my PSA tested again till about 3 months after it finishes. Another visit to the world of PSA anxiety coming up for certain.

And Past developments have also shown me that not everything goes to plan on this journey. So I am waitijng cautiously for this stage to end. I cannot quote a source but I thought that something like 30% of surgeries are not 100% successful and need to be followed up with salvage RT, and that the same percentage goes for the RT, thus RT will not deal with it for 30% of us.

So all one can do is hope that we're in the right group.

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)

Post Edited (English Alf) : 5/22/2010 6:43:34 AM (GMT-6)


Tim-from-Maine
Regular Member


Date Joined Apr 2010
Total Posts : 83
   Posted 5/22/2010 6:58 AM (GMT -6)   
I am 15 ( of 42) treatments into my SRT which is one year after surgery. So far I am having no side effects.

I occasionally feel tired - but I deal with it by going for a walk or working in the garden and that snaps me out of it. I would say staying active is important.

We have purchased some white rice/white bread (which we do not normally eat) in case I get digestive problems.

I have given up coffee (very hard for me) because it makes you have to pee more often and you need to be able to hold it for over an hour during the srt.

No change in ED function - maybe even some improvement.
PSA Feb 09 - 9
Dx age 62 - March 2009 - Gleason 7
Surgery - da-vinci RP on April 29, 2009 Gleason upgraded to 9
Started VEGAN diet June 2009
3 month PSA - <.04
6 month PSA <.04
9 month PSA .05
12 Month PSA  .16
SRT began May 3, 2010 - will do about 41 treatments
 
 


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6945
   Posted 5/22/2010 9:43 AM (GMT -6)   
Tim and Alf have covered anything I would be able to offer. I have finished 22 of 39 IGRT treatments (mine is Photon as opposed to Proton - Proton is done in very limited number of locations).

No HT involved in my treatment plan for now.

I am seeing a small amount of rectal bleeding, not daily, likely hemorrhoids; just this week a bit more urinary frequency (I am still on one pad a day after DaVinci in 10/2009), and significant fatigue. That is the biggest issue for me so far.

Dr. Walsh's book (Guide to Surviving Prostate Cancer, 2nd ed. p. 329-332) covers the potential side-effects. If you don't have access to a copy, check a local library, or a Prostate Cancer support group - likely several will still have a copy at hand.

Hope it continues to go well for you.

My Calypso / IGRT thread -
http://www.healingwell.com/community/default.aspx?f=35&m=1756808

Post Edited (142) : 5/22/2010 10:08:28 AM (GMT-6)


Telstar
Regular Member


Date Joined Apr 2007
Total Posts : 31
   Posted 5/23/2010 7:14 AM (GMT -6)   
thankd tim alf sephie and 142 Got a lot of good info from you all... I have hope that this will pass and i can get on with my life. I know no treatment does not have a negative side but have lived ok with post op effects of the prostectomy so far and family is suupportive of the down side efffects of that ... I am having the proton foculsed beam radiation and it seems to be very effective from what the doctors say but then when a doctor says "this may sting a little " it means your arm is going to fall off :) so and skeptical of any dont worry it wil be fine stuff. I have heard horror stories on Hormone Therepy and even have a friend that a family member gainded a ton of weight and it killed him. so am not ready to go that route period... and Not sure if i want chemo either... But will cross those bridges if i coem to them. I accidently created ths post as could not find my old post from surger days... but will check in here as well thank you all you make this easier to swallow and accept... God bless you all
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