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Proton Therapy Veterans - Please weigh in...

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Posted 9/5/2011 4:00 PM (GMT 0)

Hello all, 

I am new to this site and the middle of my research on the various PC treatment options.  I would like to  go with a therapy that offers a reasonable chance of a cure and maintain maximum of quality of life. 

 If you have looked into or undergone Proton Therapy treatment please reply:

 1.  Is Proton Therapy a viable treatment option in your opinion?

 2.  Has the therapy met your expectations.

 3.  Would you choose this therapy again if you had a do-over?

 4.  What did it cost?

 Thanks in advance,

John

 

PSA - 4.18

Gleason - 3+3

Stage T1C in May 2011

Age - 60

Posted 9/5/2011 4:55 PM (GMT 0)
John,

I am currently undergoing proton beam therapy at Indiana University at Bloomington. I have had 12 treatments out of a scheduled 44 so far. My diagnosis was similar to yours, and especially for those of us diagnosed "early" proton beam therapy is definitely a viable treatment option.

So far the treatment process is exactly what I expected -- no surprises, and yes, I am very satisfied so far with my choice. Time will tell if I made the right choice, but yes, I would choose proton again if I had to repeat the process, as quality of life issues were very important to me.

It is EXPENSIVE! Without insurance coverage there is no way I could afford this treatment. I had to fight a big insurance battle just to get approved. You can check some of my other posts to read about my insurance battle, and my observations on the weeks of treatment I have had so far.

I am a proton believer, so I would definitely recommend it to you. You do have to be able and willing to relocate to where one of the nine proton centers are located for nine weeks (if you don't already live near one).

Steve
Posted 9/5/2011 6:10 PM (GMT 0)
John, all I can say, is welcome to HW Prostate Cancer. Hope you find the answers you are looking for here.

david in sc
Posted 9/5/2011 6:47 PM (GMT 0)
John,

Welcome to HW. We hate to see you have to be here, but welcome just the same.

I considered Proton, but had a couple of negatives. I had 9 of 12 biopsy cores with G4+3 and G4+4, which did not give a good success prognosis, as they told me. The second was that my Ins. company felt that the potential success of standard photon, which was locally offered, was just as good. So they were not willing to pay travel costs, and would reimburse on the standard rate for photon, with me to cover the difference out of pocket. And then there was the impact on my job. At least being local, I could work most of the day.

When it was time to consider it as adjuvant, the evaluation was the same.

In the end I chose DaVinci surgery, but also did adjuvant IGRT.

I have heard nothing negative about proton compared to photon, if the location and insurance do not present roadblocks.

 

Posted 9/5/2011 9:52 PM (GMT 0)
Proton therapy and brachytherapy have similar outcomes. Brachytherapy is an one time treatment. While proton therapy takes about 42 sessions. You should do great deal of research before making a choice. There are lot of advertisement for proton therapy. But if you search well you will pick up a few negative reports as well.
Posted 9/5/2011 10:55 PM (GMT 0)
Hi

1 - yes, in my opinion.
2 - so far, yes. I'm 22 (of 44 total) treatments in.
3 - yes. I hate to second guess myself!
4- i have no idea. I was lucky and insurance covered everything. I have about $1000 OOP
5 - check out the proton bob website and see if you can contact some members who've got similar stats as yours, and get their opinions. Everyone I spoke to has been VERY helpful and accommodating.

There are a LOT of choices out there, and it'll take some research to be sure you've found what's right for you. Some are better for certain conditions as well (PCa spread outside the gland, lymph nodes involved, PSA levels, etc.). I'm sure you've seen all the suggestions on what to read, so I won't repeat the list.

good luck!
Posted 9/6/2011 12:53 AM (GMT 0)
JCT,
What you are asking is anacdotal information of which you will get a lot of responses, but not necessarily the correct information. There is a lot of data on Proton therapy and it works well on small hard to get tumors in the brain or other regions. It's effectiveness for prostate cancer which needs a large area coverage is not as well documented. There have been several studies comparing radiation modalities and proton did not fare as well as the conventional treatments such as Brachy and IMRT. For a low grade PC it probably doesn't matter as any treatment should work well; but it has not shown effectiveness in treating the higher grades. Recently additional treatments with photon radiation has been added to proton to increase it's dose and effectiveness.
Radiation is pretty simple in theory; it's a matter of dose and accurracy. Proton is very accurrate for one small spot, but loses its accurracy when trying to cover a large irregular area. Proton doses are usually in the 70 gy range compared to 150 gy for a combination Brachy/IMRT or 100 for Brachy either high or low dose alone.
JohnT
Posted 9/6/2011 2:18 PM (GMT 0)
JCT,

You said...."I would like to go with a therapy that offers a reasonable chance of a cure and maintain maximum of quality of life." That was exactly my criteria as well.

I can't offer an opinion on Proton Therapy. It was not my choice, although it was available in my area.

I do know that BT, IGRT or a combo of those two can provide you with what you are looking for as stated above. My stats were very similar to yours...except for our age.

Joe
Posted 9/6/2011 7:27 PM (GMT 0)
Although John was asking specifically about Proton Beam Therapy, other forms of radiation treatment have been brought into the discussion. As I said in an earlier post, I spent months studying my options (I had months to spend due to my insurance appeal!). I chose proton beam therapy. I strongly considered HDR Brachytherapy but my radiation oncologist advised that due to some mild pre-existing urinary problems, I was a strong candidate for urinary side-effects if I went the Brachytherapy route.

The bottom line is this: ALL treatment options have costs associated with them, whether it be temporary or short term physical side effects such as urinary or ED problems, or logistical problems such as relocating to a proton center for 9 weeks, or the traumatic effects of invasive surgery including the risk of death (1 out of every 200), and, yes, the cost of the treatment.

I'm happy with my choice -- I hope I'm still happy 10 years from now. We all want to think we each made the right choice for ourselves. John has to make the right choice for him. John, make yourself as fully informed as you can before making your treatment decision, and then once you make your choice, don't look back and second guess yourself. It will serve no useful purpose and can drive you crazy if you let it.

Steve
Posted 9/6/2011 9:19 PM (GMT 0)
John:

Sorry you have to be making this decision, but getting as much info as you can helps in making a treatment choice.  This forum will not be too helpful to you where proton is concerned.  The general feeling is usually negative - probably a number of reasons - location of facilities, cost if insurance will not cover and I think a little jealousy is sometimes involved.

John T said most of your info will be anecdotal and, in my opinion, I would rather talk to someone who has "been there, done that" than a doctor who is only interested in his pocketbook or a study slanted towards the modality doing the study.

But, for what it's worth, I had proton 10yr ago - have had no side effects.

That's just an old geezer's thoughts.  Good luck on your search for the treatment best for YOU.

Dutch 

Posted 9/14/2011 4:39 AM (GMT 0)
John ... I underwent Proton therapy this spring. I would be glad to talk with you. I spent three intense months investigating my options. Would I do it again, " in a heartbeat". Good luck
Ribsr at yahoo.com
Posted 9/14/2011 1:23 PM (GMT 0)
JCT - You ask is it viable? See my post this morning on my dads 14 year update following Proton.


Lewvino
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