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Also looking into Proton Therapy

icemantoo's picture
icemantoo
Posts: 3230
Joined: Jan 2010

Has anynody had this?

 

 

 

 

 

icemanroo

Bill91101
Posts: 60
Joined: Apr 2009

Hi Iceman,

My dad had proton beam treatments in the mid-1990s. He was in his seventies at the time. I don’t know what his PSA, Gleason score, etc. were. He mentioned having some diarrhea as a result of the treatments. If Dad had other issues, he never said, and he seemed very pleased with the treatment he received. He lived another 20 years and looked to be doing well – golf, travel, and generally upbeat. Not that he’d tell us otherwise…

I was diagnosed with advanced PCa in 2009 and my immediate thought was to go the proton beam route. Surgery was not an option for me because the cancer had gotten into a lymph node.

I called the proton beam center and was told, because of my PSA of 89, that ‘they might not be able to help me’. I was still in shock over having been diagnosed with advanced PCa so I didn’t complain to the supervisor of the person who told me that. About a month later the center called me back, but I’d already decided on IMRT (Intensity-modulated radiation therapy) because of the better response from the IMRT treatment center radiation oncologist and staff. I had 42 IMRT treatments along with monthly Degarelix injections. The IMRT treatment center was a lot closer to work and home than the proton beam treatment center. I stopped there after work every weekday. Just tough to keep a full bladder during the process.

I believe IMRT is generally as good as proton beam, but less expensive. But, there might be advantages to the proton beam treatments of which I am not aware.

Best of luck in whatever direction you choose!

Bill

greenteaguy
Posts: 36
Joined: Feb 2019

Recent academic article about proton therapy.

https://theconversation.com/proton-therapy-for-prostate-cancer-does-the-evidence-support-the-hype-120533

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

iceman,

I have never had proton therapy, but all writers seem to agree on a few issues relating to it (I have not yet read greentea's article).

1.  Few centers offer proton therapy.  If you have one convenient to where you are, congratulations;

2. Proton therapy is much more expensive than IMRT;

3. Some insurance carriers will not pay for proton therapy;

4. It is legitimately debated among scientists whether proton therapy is indeed more effective than IMRT.

 

ASAdvocate
Posts: 117
Joined: Apr 2017

Proton centers are steadily being built. Some of the top cancer centers like Mayo, Johns Hopkin, and M D Anderson now have them.

Medicare pays for it, and a judge just ordered United Healthcare to pay a claim for it.

The costs are high, as the investment to build is astronomical. But, some centers report highly impressive treatment results.

http://www.hamptonproton.org/study-finds-proton-therapy-excellent-prostate-cancer-treatment/

 

 

mhl
Posts: 9
Joined: Jul 2019

I am also looking into proton treament . Does anyone have a recommedation for a consult on this type of treatment

mhl
Posts: 9
Joined: Jul 2019

I appreciate all the comments but has anyone had proton treatment and what has been your experince  and what medical faclity has the most expereinc with this proton treatments. 

Dino_F's picture
Dino_F
Posts: 14
Joined: Mar 2018

I had proton therapy at Penn in 2012.  I detailed my experience on my blog on this web site.

mhl
Posts: 9
Joined: Jul 2019

HI Dino_F

 I am interestd in accessing your blog  on proton therapy how do I access your blog.

Thanks

MHL

mstoriop
Posts: 37
Joined: Dec 2016

Barnes Hospital Siteman Cancer Center in St louis has Proton Beam as part of their Radiation treatment options in casne you are in the Mid west.

https://siteman.wustl.edu/treatment/siteman-approach/radiation/proton-beam-therapy/

 

Dino_F's picture
Dino_F
Posts: 14
Joined: Mar 2018

mhl,

If you are logged into CSN click on my username to the left of this message.  It will take you to my home screen.  Once there, click on "Blog" which you will find to the extreme right of the choices after my username. You will see very little on the opening screen of the blog; for some reason you will need to find and click on "Read more" to proceed to the full content.

At one time the blog was longer, but a significant amount of material written between late October 2018 and late January 2019 was lost when CSN had a major backup failure earlier this year.  I was so disheartened that I basicaly stopped using this website. 

Dino_F

cubsfan1963
Posts: 13
Joined: Jun 2017

I think everyone who is touched by PC is wise to fully investigate all their options, especially relative to what approach is likely to be most effective for their specific diagnosis. I know I took a hard look at surgery, radiation (cyberknife and IMRT) and Proton Beam when I was initially diagnosed back in May of 2017 (Gleason score: 7 (4+3), 7 of 12 positive cores in my biopsy).  Fortunately mine was caught just in time, as I was nearing the point of extracapsular extension, which was visible in my MRI.

Given I was diagnosed at age 53, I may have overweighted "quality of life" in making my decision on which course of action to take treatment-wise.  I had read tons of blogs and personal accounts of prostate cancer survivors, and paid special attention to the treatment choices they made, the outcomes they had, and their post-treatment short and long term side effects.  In doing so, it struck me that many who opted for removal almost made the decision as if it was their only option (and certainaly my urologist was all-in on me taking that approach as well).  I think most men ultimately go that route... and many come through it quite well.  But clearly many do not.  I read countless stories of men who struggled both short and long term with incontinence and impotence.  And even with surgery, it seems a significant number dealt with recurrance or the surgery not quite getting it all, so they faced salvage radiation.  For me, surgery presented too many risks for an impaired quality of life - especially given the similar effectiveness of radiation as a primary treatment.

Then i weighed the pros and cons of cyberknife and IMRT vs proton therapy.  What ultimately tipped the scales for me was the overwhelmingly positive feedback from prostate cancer survivors who went the Proton route... most of whom had minimal to no side effects in the wake of their treatment.

Several months prior to starting my Proton therapy at the Chicago Proton Center (Warrenville IL - a suburb of Chicago), I was given a 6-month injection of Lupron - as my radiation oncologist convincingly presented me with studies that showed that combining Lupron with Proton beam - even for that relatively brief duration - significantly increased the short and long term efficacy of the Proton treatment.  

As far as my actual proton treatments, i did 28 over a period of about five weeks (M-F, switching sides daily, with weekends off), and must say I never felt a thing during those treatments.  In fact, once i was on the table, the actual treatments only lasted a few minutes.  I should also mention that prior to receiving treatment my oncologist injected SpaceOAR hydrogel between my rectum and prostate, to protect the rectum from radiation. That was a bit unpleasant, but the gel definitely did it's job, and it dissapated within me within six months.

Overall I am very fortunate with my results.  My pre-treatment PSA scores for the first few months before and just after my diagnosis were 5.82, 7.09 and 8.12.  Three months following the completion of my Proton treatment, my PSA was 0.16.  3 months after that it rose a bit to 0.35, then to 0.67 three months after that.  But then it stabilized and started to drop... and six months later it was 0.51. It's now been two years since my treatment, and my PSA is a low 0.30.  Those of us who went the radiation route will always have some measurable level of PSA, but my doctors are very happy with the outcome, and so am I.  I've had no issues with ED (except when the Lupron was in full effect), incontinence or bowel issues.  The only noticeable side effect I've had is that when I orgasm I no longer ejaculate - primarily because my both my prostate and seminal vesicals were targeted by the proton threapy.  I can certainly live with that given the overall outcome I've had.

I feel very fortunate with the path I took and the very positive results I've experienced.  I know I need to keep a close eye on my prostate for the rest of my days, but I certainly sleep much easier now that my PSA scores have stabilized at such low levels and I feel so good physically.  I highly recommed Proton Beam threapy, and strongly suggest checking it out as one of your primarly options.  I was also fortunate in that my insurance - which initially denied payment - ultimatley did pay for my full treatment (which I initially paid out of my own pocket... the proton center billed me at the Medicare rate, which was much lower than their regular rate).

Best of luck to all of you in whatever treatent choice you make. Once you do make that choice, be all in on it, and focus all your positive energy on the treatment and a great outcome!  I believe it helps... it did for me.

 

 

VascodaGama's picture
VascodaGama
Posts: 3050
Joined: Nov 2010

Cubsfan,

Thanks for sharing your story with proton treatment. The PSA curve corresponds to the traditional bounce in prime radiotherapies, going up initially and then dropping to a nadir that can take 4 years to reach. 
 I wonder about the cost of Proton therapy. Can you share with us what did the insurance cover and the amount paid?

Congratulations for the success.

VG 

cubsfan1963
Posts: 13
Joined: Jun 2017

VG,

I think the full "rack rate" cost of Proton at the Chicago Proton Center would have been as much as $150k, but they charged me what they would have charged Medicare had I had it -- and that amount was just under $40k.  I initially paid that out of pocket after Cigna denied my request for coverage. But low and behold, the Proton Center submitted the claim for me again and about eight months later I received a check for that full amount I had paid... so I was thrilled about that!

ccwierko1
Posts: 10
Joined: Mar 2014

HUP (Hospital of the University of Pennsylvania) in my opinion cannot be beat as to Proton Therapy. Only place I would go as I had 39 days of Proton Therapy.

Bless you and go to HUP.

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