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Posted 7/2/2008 5:24 PM (GMT 0)
For those of you that are considering what treatment to use to fight your PC. Look at the facts, radiation proctitis is high on the adverse effects of radiation. Three months after having IMRT/IGRT my life has turned into a hell due to radiation proctitis and rectal burn. Radiation is the only treatment that can do this to you. If you have diabetes or in the past have experienced an inflammation type of problem in the pelvic area, my advice is, go and get surgery!! There is no way that surgery could have inflicted the pain I now have, changing a diaper would be heaven for me now compared to this. The worst part is that nobody knows when or if the problem I have will go away and that there is no proven procedure to correct it. The vast majority of men I know who have gone with surgery have done very well. So, don't beleive all the hype about how far radiation therapy has come, there are succeses out there, but it is still radiation, and the damage it can do to your body is terrible. I chose radiation based on incomplete facts of the damge it can do, don't do the same.  
Posted 7/2/2008 9:42 PM (GMT 0)
sorry to hear your experience was so bad. I am not sure if there was some incorrect mapping or what happened. I personally handled 44 IMRT's quiet well with little side effects other than fatigue. I am thinking you may be the exception not the rule, however I do agree that people should research their treatment options and be well informed before begining.

peace and love
Dale
Posted 7/2/2008 11:21 PM (GMT 0)
Been There-

<Edited>.

I hope our readers continue to assemble facts and check out the practitioners and facilities they are considering <Edited>

-Les

1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston

Edited by TC-LasVegas

  Rule #3. 

Les, again, thanks for the 2nd post.

Post Edited By Moderator (TC-LasVegas) : 7/3/2008 12:12:53 AM (GMT-6)

Posted 7/3/2008 12:48 AM (GMT 0)
Easy Guys,
Les, I believe after reading Been There's post that he is expressing distress over the terrible experience he had and is giving hindsight advice for diebetics or those with previous pelvic disorder and have to consider treatments for PCa. And Been There, you have had an absolutely bad experience. I know a story about a guy who's wife I know personally, who had surgery and he has a fulltime catheter and severe scarring after nearly three years. But I believe what we are seeing here is that there is risk in all treatment options. And there are factors, too. It sounds like this treatment was not properly mapped and planned by the physisist and the RO. I had 38 IMRT sessions and have no side effects.

Unfortunately, like in the case I mention of the guy I know, we are bound by decision of convenience or practicality. I decided to leave the Las Vegas area for my treatment and attend a world reknowned center for my surgery, and a world reknowned prostate oncologist for my treatments. I was lucky the latter I could find here because deep pockets brought him here. But the surgeon required my travel. My friends wife elected to stay local and went with a less experienced surgeon. Results? My plumbing works and his does not.

No matter what the treatment option is, you need to consider the experience level of the person driving the treatment. And you have to ask the right questions during treatment of radiation or HT or whatever. And you have to consider your previous health ailments as well.

Let the peace prevail. I feel for both of your frustrations!

Tony
Posted 7/3/2008 12:52 AM (GMT 0)
Tony-

You're always the voice of reason. Sorry I lost it.

-Les
Posted 7/3/2008 1:04 AM (GMT 0)

Dear Been there,

I am truly sorry for your unhappy and painful experience.  I can't even imagine how awful it must be.  The friend of mine I mentioned to you did not, in fact, have an experience like yours.  So no help there. 

You mentioned that most of the guys you know who have done surgery are doing well.  That is my experience, too.  ALL of the guys I know who have done radiation are doing well.  I hate it that you are suffering, but I think you are doing a disservice to others who are deciding on their treatment.  Reading your post, it sounds as though all those who choose radiation will suffer as you are and that is simply not correct.  There are many radiation success stories here on HW and out there in the rest of the world.

I really, really hope that youir situation improves.

Best Wishes,

Bill

Posted 7/3/2008 1:09 AM (GMT 0)
Tony,

You are so right and that is why you were selected to be a moderator.

I am a proponent of Protons but I always point to a site that covers all the options.  I firmly believe that each of us must pursue our treatment with all the knowledge we can find and even then it is tempered by our physical, emotional and financial postions.

I, too, feel for Been There but also for all those who have had other treatments and still have to fight this monster. 

We all need each other regardless of the treatment we received both good and bad cases.

United we stand, divided we fall.


We all need a place to vent at sometime in our struggles.

Richard yeah tongue yeah

Posted 7/3/2008 1:11 AM (GMT 0)
I was not giving medical advice. Like most people here I am only relating a personal experience that may benefit someone else. I have done research online regarding this -- and diabetics and people who have had prior inflammatory diseases or operations in the pelvic area have higher risk factors for radiation proctitis, check it out by Googling, Radiation Induced Proctitis.  I was not informed of this prior to my treatments. Had I been better informed I possibly could have avoided the problem I now have. The last time I checked, all people here with PC are buying their treatment, whatever it is, and it requires no less investigation of what one is buying than when one buys a car. Did I get a bad mapping job done as one person has suggested or did I choose a bad treatment based on my medical history? I do not know, and never will know. The bottom line is my quality of life has greatly worsened after having this treatment.
Posted 7/3/2008 1:16 AM (GMT 0)

Been there:

I too am very sorry to hear of the pain and discomfort you are having to deal with since your treatments and hope with time and healing your condition will improve greatly. 

Since the techniques for all forms of radiation (IMRT, IGRT, Tomotherapy and protons) have been greatly improved in recent years, my opinion would be that you are the exception to the rule as far as side effects are concerned.  I know of MANY men who have had protons and a few who have had photons and have never heard of a case like yours.

Take care,   Dutch

Posted 7/3/2008 1:39 AM (GMT 0)
Been There.... I am with you. Guys that have little or no problems do not feel the regret or second guessing "we" do. Just hang in there.

KW
Posted 7/3/2008 2:34 AM (GMT 0)
My question is....why is it okay to viciously attack another cancer patient because he doesn't think the way you do? I think to do so is despicable. And unconscionable. We all deserve respect.
Posted 7/3/2008 2:34 AM (GMT 0)
Thanks you guys for your concerns and best wishes. I will not be on here for awhile now as I have been medically advised that to do so can have a negative effect on my mental wellbeing and therefore my healing. In other words, I have to somehow get past this and live for the present and not regret the past. I also have to try to forget that I got a bad outcome and that it was probably caused by a combination of factors and maybe someone did their job badly. No matter what happened, I have to let the anger and friustration go and help my mind heal my body.

Regards to all.
Been there
Posted 7/3/2008 3:03 AM (GMT 0)
i agree with tony ,it is of the utmost importance to not only reearch your options whether it be radiation or sugery.this is something that will affect you the rest of your life regardless of your treatment option,i  chose to fly 500 miles away to coincidently the same treatment center as tony which specializes in cancer only . my surgeon was trained by the 5th best surgeon in  the world at this proceedure had i wanted radiation i would have went  with loma linda proton therapy again not close to home at all but well known for great radiation outcomes, my point being we all have the option to get the best treatment , i am not financially well off however you do what you gotta do to stay alive and maintain the best possible outcome for your treatment option.........dirt


Posted 7/3/2008 6:00 AM (GMT 0)
Been there,
You hang in there. We are here to help you anytime you need us. Your story is very valuable here, because like it or not, ALL treatment options have a dark side. I agree it is tough to stay positive through this adversity. But I understand that you need to hang in there and get through this. I have had a difficult journey, too, but for different reasons. After Surgery, HT and IMRT, I am left to my cancer cooperating or I head to guys like Gordy's road. Emotions are high with these types of events in our lives, but I have complete faith that you will cope with it, that it will improve, and that your PSA will decline. My motto is stay positive. I thank Gordy for the apology and I hope you did accept it. I think he clearly misunderstood your original post. This is one of those moments that make being a moderator very tough.

Tony
Posted 7/3/2008 5:22 PM (GMT 0)

Tony-

It seems it wasn't very long ago when you guys (admin/moderators) gave a guy a hard time because he was an MD and giving advice here.  This guy is doing the same.

I really resent your editing my post above.  It's time for me to leave here, too.  Bye, bye.

-Les

Posted 7/3/2008 6:17 PM (GMT 0)

Dang it, Les,
I would at least like to talk about this.  Unfortunately we don't share Email and I can't reach you so I have do it here.  You certainly are one of my favorite folks here, and I understand your position.  I thought when you issued the apology you would be OK with it being toned back.  The reason we don't hold Been There in the same regard as the MD is that Been There did not claim to be an MD, and was just iterating his frustration with his very real experience with radiation.  His severe side effects are not his fault.  His advice to reconsider this treatment option is clearly driven by the severity of those side effects.  While he is the exception, his post has validity.

It is more difficult to moderate here than I ever expected and I don't always make the right calls.  I have to separate the fact that there are people here that I Love and know from the entries and try to be fair to ALL members.  I would be seriously hurt if we couldn't talk about this more.  It's getting to the point where I am reconsidering ever being a Moderator.  Les go look at my post in my website for my personal feelings about what I see here.  Mondays post. 

Great, just great!

Tony

Posted 7/3/2008 7:02 PM (GMT 0)
Gordy,

Easy buddy. Your input here is so important dont go anywhere. You just helped me the other day for goodness sake. Tony's just trying to do what he thinks he should. We cant judge him all the time. He is our best shot at keeping this site what it has become. New people are coming here all the time in large numbers.

He just changed your words a little thats all. Its not like he failed at a brothers surgery by giving a bad margin or injured a brother by incorrectly performing radiation.

If "Been There" is not legit, shame on him, if we shun him in any manner and he is legit big, big shame on us, right?

Thats my two bits anyway.

Frank
Posted 7/3/2008 11:34 PM (GMT 0)
Been There said:

"The vast majority of men I know who have gone with surgery have done very well. So, don't beleive all the hype about how far radiation therapy has come, there are succeses out there, but it is still radiation, and the damage it can do to your body is terrible. I chose radiation based on incomplete facts of the damge it can do, don't do the same. "

I stand by my (now edited) post.

-Les
Posted 7/3/2008 11:52 PM (GMT 0)
Gordy, please revise your "bye-bye' decision. You are an invaluable member here and it would be a huge loss if you were to disappear. I can understand Been There's frustation and anger. From his point of view he has had a bad treatment outcome and is lashing out about it. It does us no good to not face the fact that adverse things happen with some treatments and it is by discussing them and thrashing out the pros and cons that we all become more informed. He posted on an issue of "Radiation Induced Proctitis", a term I had not come across before and because of his post, after researching I am now more informed. We all have something to offer here so I truly hope you will reconsider.
Bill
Posted 7/4/2008 12:28 AM (GMT 0)
Bill/Frank-

Thanks for your kind words.

Am I the only one here who sees a vast difference between "hey guys, lemme tell you what happened me" and "hey guys, don't even consider radiation, it will ruin the rest of your life - go with surgery"?

BTW - I've been trying to modify the end of my sig - not sure if it "took".

-Les
Posted 7/4/2008 1:26 AM (GMT 0)

Hey Les,

Yeah, I saw a big difference and that's why I posted that Been there's post was a disservice to guys who are in the throes of decision making.  See, you're one of them Neu Yuoka's and I'm a hick from Iowa.  You're from the big city and have to react fast.  I'm from nowhereville and have time to consider.  Oh no!  I've forgotten the name of the scotch!  I'm not kidding!

Life is also easier for me.  Except for that PSA rise ( ! ) it seems that I may be ok.  Except for that PSA rise.  I am flying my Gulfstream bizjet around, chasing the ol' woman around once in awhile, messing with my grandson.  My shorts aren't wound too tight about my future.  I'm concerned, but not crazy. 

Oban!

It is likely that I have no immediate life threatening issues staring me in the face.  Some do.  That's a big difference in how you look at things.  Not only that, but lots of you guys are experiencing treatments that have really sh+++y side effects.  I mean lousy.  On a daily basis.  All the time.  I admire your courage and determination.

I always thought that I was a ballsy guy.  I have learned that courage is selective and that I am somtimes found lacking.  I judge no others.

Les, we need to get together and drink too much.  It's a lovely thing to do.  And I don't give a (expletive deleted) what anybody else thinks.  You don't either, do ya?

I hope you read this Tony.  You are one the the guys I admire.  I kid you not.

Regards,

Bill

Posted 7/4/2008 1:35 AM (GMT 0)
Bill, my Brother-

Tony and I have been corresponding and he's made me see the error of my ways. We've each apologized.

I have no idea when/if I'll be back in Houston, but aren't you due for a trip to NJ? It's been too long, my friend. And, yes, we're due for some serious drinking.

Oban.

-Les
Posted 7/4/2008 4:35 AM (GMT 0)
It always breaks my heart to hear of anyone suffering after their treatment for PCa.  I have never been one to promote any form of treatment for PCa, other than to tell of my personal experience with proton radiation treatment.  All treatments can have drawbacks and we never know what to expect after our treatment as each one of us is unique.  Radiation treatments, if administered properly, should not result in serious damage to the body for the majority of men treated in this manner. Over a year has passed since my treatment ended, and I have had no noticeable side effects and thank God for this every day.  However, I know well that anything can happen down the road.  We all have to be as objective as possible so as not to discourage those who are yet to seek some form of PCa treatment.  I hope and pray that your pain and suffering can be resolved.  God Bless!

Dave

Posted 7/5/2008 6:34 PM (GMT 0)

Fernc please contact me or any moderator by email concerning your posts to these 3 threads here and the one in Breast Cancer concerning ambiolife.com.  Forum rules state spamming isn't allowed and describe what is considered spamming. Your posts seem to be doing that, but you have no email address available for me to contact you privately.  If I don't receive a response, I will have to delete your posts to these threads. Thank you... 

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