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10/19/2011 10:42 PM

Support group dissapointment

Sir0Jake
Posts: 49
Member

I went to a support group tonight and after talking to several guys about their treatment, i found out i was in an all proton beam radiation patient meeting, several of the guys were asked to talk about there treatment and they were all happy no side effects and they all said they know a friend who had surgery and they all had problems

there i was the only guy in the room of 100 proton beam patients, man i really felt out of place and all i heard was how bad surgery is and how good proton beam radiation was, this did not help me at all and was not what i needed to hear, isn't it funny how birds of a feather flock together,i know i am guilty to, sometimes i hear someone give a success story and i am jealous that their treatment turned out better than mine

i suppose if i had chosen radiation first, i would be sitting here saying, damn i should have chosen surgery....

what do you guys think? you ever notice that stuff?

thanks

jack

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10/20/2011 01:47 AM
baldie2u
 
Posts: 44
Member

Not really. I guess we make as good an informed decision as we can bearing in mind our own particular constraints and then we have to take ownership of that decision.

I chose Tomotherapy radiation because the effects of surgery seemed so much like butchery and I knew the incontinence aspects would leave me without a job and as a result of that I would lose my full-time health insurance.

Yes, I understood the 'cure' aspect was slightly less (according to the surgeon about 5% less) but when all aspects were weighed up it made me go that route. If it's the wrong route it was 'my' bad decision and as I said at the beginning I will have to take ownership of that.

What is the right decision for some may well be the wrong decision for others due to them having different factors to consider. It is pointless falling back to 'what if?' and 'if only', hindsight is a great thing as is often said but all it does is eat away at you like this damn filthy disease!

Wish those proton survivors luck and pray your decision was the right one for you - it's all you can do!


10/20/2011 06:14 AM
hollywoodmark
hollywoodmarkPosts: 867
Member

I think it depends a lot of the ages of the guys in the group. The group I went to were all much older than I, so none of them had had the option of robotic-assisted surgery. They had all had had radiation and/or hormone therapy and were not doing well on it. They seeemd a bit envious that I was facing a relatively simple surgery and easy rehab. And they were very bitter. Not what I needed at the time.

In a few years, I think the groups will be loaded with prostate-less guys like us.


10/20/2011 08:44 AM
paperplane
 
Posts: 202
Member

I concur with Hollywoodmark. Being only 53 I choose the DaVinci over radiation; from my reading (perspective) and studying the situation, removal was the optimum approach. I too am frustrated with the leakage I am experiencing and the flaccid Johnson. My reading indicated in 3-5 years down the road, they too will begin too experience incontinence and ED. The tipping point for me was that if radiation did not get the cancer, then my only future option was more radiation. I saw my Dad have his PC diagnosed too late, go through the PC only to find it had metastasized beyond the prostate. I do know I choose life, with the possible side effects I am dealing with. I plan to be around for long time.

10/20/2011 09:00 AM
hollywoodmark
hollywoodmarkPosts: 867
Member

Thanks, PP, for the back-up. I watched my dad die of PC, too. And, although I have still am dealing with some post-op issues, I am cancer-free nearly 3 years later. I'll take that.

10/20/2011 09:54 AM
srciaran
srciaran  
Posts: 283
Member

There seems to be an almost evangelical quality to the guys who get the proton beam radiation. They even have a name for themselves (at least the ones from Loma Linda do), "The Brotherhood of the Balloon." I don't know if they are all just really that happy with their results, or if Loma Linda's marketing department is just really good at recruiting patients who will promote them. It certainly sounds like a good way to go, if you can afford it. I looked into that treatment, and it was not an option for my insurance. The whole thing felt kind of like I had to be wealthy and play golf to have the privilege of having their treatment. I did not qualify on either count.

10/20/2011 10:29 AM
hollywoodmark
hollywoodmarkPosts: 867
Member

But WE are privileged to have you among usSmile. Interesting observation, bro.

02/10/2012 07:56 AM
RickRed40
RickRed40Posts: 860
Member

Jack,

First things first, have I misunderstood your original post? I thought you had surgery and felt like a stranger in a strange land of anti surgery people. Before posting further I want to make sure I understood your post correctly.

Rick

Post edited by: RickRed40, at: 02/10/2012 09:52 AM


02/10/2012 09:12 AM
mem3814



Post edited by: hollywoodmark, at: 02/10/2012 09:34 AM

02/10/2012 09:30 AM
RickRed40
RickRed40Posts: 860
Member



Post edited by: RickRed40, at: 02/10/2012 10:08 AM
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