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New Diagnosis--looking for long term feedback

GI Joe's picture
GI Joe
Posts: 4
Joined: Oct 2016

Friends,

I was recently diagnosed w/ prostate cancer.  A PSA test of 6.75 led to a biopsy, which showed 2 of 12 cores were cancerous, and assessed at 3+4 = 7 Gleason.  I'm 46 and otherwise very healthy (you know, other than having cancer).

 

I'm leaning towards protons--Oklahoma City has a convenient Procure facility--but would like to hear from people who have had proton therapy more than 2 years ago.  I'd love to hear not so much why you chose it but how it's worked for you in the longer term.  Recurrence?  Incontinence?  ED?  Other concerns?

 

This forum has already provided me a lot to think about--I've spent a lot of time here already.

Thanks in advance,

Joe 

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Joe,

Welcome to the board. I think you trying to avoid confusion requesting responses on experiences only. I think you are well informed so that you try to narrow the information. In this forum not many have done proton but you can find a list of patients at Yananow describing their experiences. There is a top table where you chose "External Beam Radiation" plus "Proton Beam" and then the list of patients appears from where you can choose, by age, diagnosis, location, etc. Here is the link;

http://www.yananow.org/query_stories.php#topoflist

I have 16 years of experience with prostate cancer, since the age of 50. Calculating backwards I realized that the cancer may have had shown its face when I was 46. I was also healthy other than having cancer by that time, but my quality of life changed to the worse since then not for the cancer or other illness but for the treatments. I learn that young patients with low aggressive cases are the ones at higher risk of loosing that quality living because of the many years of life expectancy.
You doing well in procuring a therapy however do it with the full understanding of what you may be confronting.

Best wishes and luck in your journey,

VGama

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Not many men here have chosen PBT for treatment here.  Not sure exactly how many but I don't recall more than 1 or 2 men who have ever mentioned it in the 6 going on 7 years that I have been on this forum.

I suggest you try BOB -- Brotherhood of the Ballon (named after the ballon which is or use to be inserted in the rectum during PBT treatment) for advice.  You can find that website here: https://protonbob.com.  If you haven't already read it, I suggest you read "You Can Beat Prostate Cancer and You Don't Need Surgery to Do It" by Robert J. Marckini (which describes his experience w/PBT bac in 2006.

FWIW, I considered PBT for treatment when I was 1st diagnosed w/PCa in Jan 2010 but chose CyberKnife (SBRT) instead.  Reasons:

1) PBT was not covered by my medical insurance carrier and CK was.

2) PBT was only available at certain sites (Loma Linda was the closest to me) which would require me to live near there for 8 weeks for the 40 (5 daily treatments/week) that were required at the time; fewer treatment may be required now.  On the other hand, CK was available to me at UCSF (near my home) and only required 3 treatments delivered every other day w/in a week.

3) PBT (at the time) required being fitted in a body cast to prevent movement and the insertion of a water balloon in the retum to prevent tissue damage during treatment; these things may have changed since then.  On the other hand, CK did not required anything except to get on the table in my underwear which along w/the radiation delivery arm could adjust for radiation delivery in 360 degrees at the sub-mm level while also adjusting for body and organ movement during treatment.  No such precision is available w/PBT.

So, if you are a considering PBT, I strongly suggest that you consider CK instead. CK widely available throughout the country because of the portability of the equipment. PBT sites are limited because it requires a cyclotron to be available/built on site in order to deliver the proton beams. 

You can find info about CK at Accuray's (the mfg's) website where there is also a user forum.

See: http://www.accuray.com and http://www.cyberknife.com/forumlanding.aspx

Good luck!

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I wonder, what the percent of cancer was in the two cores that were positive.

Did you have a second opinon by a world class pathologist on the slides from your pathology. Deteriming results are subjective. Approximately 5 to 10 of Gleason results are changed by a second opinon.

Have you had any image tests such as a T3 MRI or a PET scan. This can indicate if the cancer has escaped the prostaate.

I read that a high tech proton facility came to OK City in the last few years.

In doing your due diligence, there is a Dr. Medburry who a few years ago posted at the cyberknife discussion forum. If he is still in practice, he would be an excellent doc for your to interview...

http://www.cyberknife.com/Forum.aspx?g=posts&t=4456#jumptobottom

MEtoAZ
Posts: 37
Joined: Feb 2016

 

Welcome GI Joe,

 

I was a fly-boy back when, I was diagnosed early this year at age 52 with two cores positive (3+3 in one 3+4 in the other).  Sorry you get to join this club so young.

 

Like Swingshift, I chose Cyberknife after checking out while being scheduled for surgery based on one of several suggested doctors provided by my PCP, who was very helpful in encouraging me do research on many options.  My treatment regimen was 5 treatments over 7 days (weekend broke it up).

 

As noted previously, the younger you are, the more "long-term" issues can come into play so it is important to know your options and what the potential side effects for each one.  Every specialist you see will likely recommend their approach aside from standard radiation which most radiation oncologists will not even recommend for someone your age as it is almost certain you will have long-term side effects from that approach because conventional radiation covers a larger area to make sure the target is adequately radiated and the longer time you have, the more likely the "overlap" will cause challenges.

 

I did not look into proton therapy in much detail as it wasn't readily available from my research in Phoenix area and what little research I did had a mixed bag of results, though all the treatments I saw were older experience and tech is always changing.  I did consider HiFu which is just too expensive from my perspective ($25K + out of country) and Cyberknife, which is covered by insurance and has a great track record for early stage treatment and so far, so good from my experience though I was only treated in April.

 

Good luck, given the early stage of the disease, you have time to make a well-informed decision on treatment.

 

GI Joe's picture
GI Joe
Posts: 4
Joined: Oct 2016

Thank you for your comments so far.  A few notes: 

Yes, there is a ProCure (i.e. proton) facility here in OKC.  That is nice, and my insurance will cover it.  They may not use the body cast any more, but they do use the balloon (to keep rectum away and safe) and they now use the gold markers similar to Cyberknife.

I've heard about cyberknife, but haven't really investigated it very much yet.

I've checked out the protonbob.com website, but honestly, it reads like one giant advertisement, which, to me, is not the same as "evidence."

I have not had a "world class pathologist" double-check my biopsy, but I did read at least one study that found most prostates originally classified as either 3+4 or 4+3 ended up being a 3+4 upon removal and a full pathology exam.

I don't mean to be flippant, but I "mostly" take for granted that this is survivable.  I don't want to just survive; I want to remain continent and sexually active.  Thus, I'm concerned by some suggestions that, while proton therapy leaves one potent initially, after a year or two that changes, much like other forms of EBRT.  That's why I'm eager to hear from some individuals who have had this therapy more than a year or two in the past.  I've checked out protonbob, as I already mentioned, but that site reads more like a cult or infomercial to be very persuasive to me.  On the other hand, who knows--maybe I'll be posting my own testimonial there next year...

 Again, many thanks for all your comments.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

 SBRT (of which cyberknife is one platform of delivery) study.

7 year study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4211385/

Studies have shown that proton beam is no better than any other radiation treatment.

Generally proton beam cost more than other radiation treatments.

Also many insurance companies do not pay for proton treatment.

As you mentioned, the proton people are basically sales oriented, and give no concrete information about why they are better. 

............................................

To emphasize, it is critical for you to obtain diagnostic tests to gain optimum knowledge for treatment. The imaging tests are the most important.

I don'5 know what medical coverage you have. Without medical coverage a second opinion for pathology reading costs about 200 dollars. There is a difference between pathologists. Two outstanding institutions are Bostwick 800 214-6628 and John Hopkins 410 955-5043..... I for one had a change in the reporting of my Gleason.....which affected the activities in my treatment.

Your treatment deicsion is based on your pathology, image studies. For example if you are treated for the cancer localized in the prostate, and the cancer is actually outside the prostate, you will have to have more than one active treatment......the side effects of active treatments are cummulative.

Yes your cancer is "mostly"  survivable; the information that we are giving you, will help in your decision to avoid major pitfalls.

GI Joe...I wonder are you currently in the military, or are you retired with military benefits? ...

 

 

 

 

 

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