Hi Tom and everyone
I am happy to see that a Proton Therapy thread has been started! I am starting 8 weeks of Proton Therapy on 2/22/07 because I think it is the right decision for me. My purpose is not to promote any type of treatment, but to educate all prostate cancer patients in the various treatment options, so that they can make their own decision. The majority of men still select surgery as their form of treatment which is very obvious at this message board. Many prostate cancer patients don't know about
Proton Therapy or don't know enough about
it to fully assess whether or not it may be appropriate for them. I think this is a mistake. Age and PC stats should play a major role in any treatment decision. In the end analysis you have to go with your heart after an exhaustive research of all of the treatment options, their potential for cure based on your PC stats and the potential risk of negative side effects which you are willing to live with if they occur. The rest is in God's hands! I do not believe that there is any perfect treatment for prostate cancer at this time!
After extensive research and networking, i decided on Proton Therapy. My two choices were robotic surgery with one of the top surgeons and Proton Therapy with one of the top radiation oncologists. After much thought and considering my age (notwithstanding that I am still healthy and youthful in many respects), I decided against surgery because I didn't want to take the risk of almost certain impotence (possibly permanent at my age) and possibly total or some degree of incontinence. If I were substantially younger, I might well have elected robotic surgery. I did not want to have to deal with what i thought could well be 100% immediate impotence and the potential difficultly of regaining some degree of potency. I was even more concerned about
the possibility of some degree of incontinence. In my final years, i want a reasonable hope for a cure, but also a good quality of life. Having to wear pads and diapers potentially for the rest of my life was not for me. i have read some of the heart breaking stories in these message boards of men struggling with the nasty side effects of surgery. Some side effects improve or go away, but sometimes they don't. Let's face it, choosing a treatment for prostate cancer is a gambling game--you have to weigh the odds. I also felt that Proton Therapy would be non-invasive compared to surgery, and is considered one of the safest forms of radiation, offering hope for minimal side effects. There is no question that radiation (including proton) can eventually lead to some degree of impotence down the road. However, in those cases, drugs such as viagra have been known to overcome the impotency in many cases which is not always true with surgery. Incontinence usually does not happen after proton therapy.
I met with a top medical oncologist and the conclusion was that the chances of a potential cure for me were about
the same with surgery, radiation and brachytherapy (seed implants), but the potential negative side effects vary greatly among the various treatments. Quality of life is very important to me--I would rather live fewer years and live them well without having to deal with treatment side effects that make life miserable. I concluded that Proton Therapy offers as good a chance of success as surgery (the supposed gold standard) for me, with the potential for little or no negative side effects short and longer term. It is true with radiation therapy that longer term side effects may occur, especially some form of impotence. However, I believe with radiation therapy, that viagra and other similar pills can overcome impotence in many cases which is not always true with surgery. The problem with brachytherapy is the potential for some nasty urinary problems (e.g., strictures of the urethra making is impossible or difficult to urinate without some medical procedures). IMRT photon (x-ray) therapy is the most sophisticated type of x-ray radiation today, but not as safe as proton radiation. Proton radiation enters the body at a low dose and the high dose is directed to the cancerous area and stops there; x-ray radiation enters and leaves the body at the full dose. It has more potential for damaging good tissue surrounding the prostate. I believe that IMRT x-ray radiation has the potential for greater negative side effects than proton radiation. It is true with radiation therapy (either proton or photon), that it will take up to two or more years for the PSA to get to its lowest level compared to surgery where the PSA usually goes to zero immediately. It is true with surgery that it makes future radiation treatments possible if the cancer recurs. It is not necessarily true that the prostate cannot be removed if the cancer recurs after radiation therapy if the cancer has not escaped the prostate capsule. Some surgeons just refuse to do the surgery, but surgeons at such top hospital as Sloan-Kettering in Manhattan have removed the prostate after radiation therapy if the cancer recurs, depending on the circumstances.
The more usual side effects from proton therapy are as follows:
Short-term (the feeling of a need to urinate more often than usual; could experience some burning upon urination; stools may be more watery; possible tiredness). Most of the short-term side effects, if experienced at all, tend to disappear after treatment. Many proton therapy patient claim no short-term side effects.
Long-term (many of these symptoms may not appear until after a year or much longer; a certain percentage of patients will become impotent (usually substantially less than with surgery), but it is often overcome with viagra and other similar drugs; minor rectal bleeding which may ultimately disappear). Severe urinary and rectal problems are usually considered rare with proton therapy.
I suggest that you visit these websites:
The first website relates to Prostate Nomograms developed by Sloan-Kettering in New York City. You can input various information relating to your stage of cancer (i.e., PSA, Gleason Score, Tumor Stage based on DRE, etc.). The end result will give you 5-year progression free probability statistics comparing radical prostatectomy, external beam radiation therapy and branchytherapy.The second website is an interesting study, again comparing the success rates of the various prostate cancer treatments and related side effects. Keep in mind that EBRT (external beam radiation therapy) is an older form of radiation therapy and IMRT is the most sophisticated form of photon (x-ray) radiation today with the potential for fewer negative side effects. This should be taken into consideration when evaluating this data.
I suggest that you visit these websites for more information on Proton Therapy if you have not already done so.
With respect to Proton Therapy, I suggest that you also consider reading a new book entitled "You Can Beat Prostate Cancer (and you don't need surgery to do it) by Robert J. Marckini. He was treated for prostate cancer at Loma Linda in the year 2000 and started the Proton Bob website above which will give you reference to his book. While his book is very oriented to the proton treatment he received at Loma Linda, I believe it gives a very fair and unbiased discussion of each kind of prostate cancer treatment, including the advantages and disadvantages (i.e., potential for negative side effects). If this book had been available to me when I started my exhaustive research to determine the best treatment option for me, it would have saved me an enormous amount of time and stress. Most prostate cancer patients don't know where to turn to when they first hear their diagnosis of prostate cancer. There are many other excellent books on the market as well as a vast amount of information on the internet. Books offer a good summary and a good starting place because you can otherwise get quickly overwhelmed on the internet. Message boards such as Healing Well and others are a great asset and comfort to prostate cancer patients while they attempt to gain knowledge about
prostate cancer, share their knowledge with other patients and ultimately make their treatment decision.
There are now several Proton Therapy centers in the United States for treating prostate cancer and other cancers. Loma Linda University in California has been performing proton radiation treatments since 1990 and has successfully treated thousands of men with prostate cancer. Massachusetts General Hospital (MGH) in Boston
opened a new proton center in 2001 (replacing a smaller one in affiliation with Harvard) which was established in the 1950's. Two new proton centers were
opened in 2006, one at the MD Anderson Cancer center in Houston, Texas and one at the University of Florida in Jacksonville. The University of Pa. is expected to
open a new proton center in the next two years. The only reason that proton radiation centers have been slow to develop in the United States is the tremendous cost ($100 million or more). Even though Proton Therapy is presently the most expensive type of prostate cancer treatment because of the cost of developing a proton beam facility, it is significant that Medicare has approved and will pay for the cost of this treatment.
God bless all and best of luck in your treatment for prostate cancer!
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.
Post Edited (pcdave) : 2/10/2007 6:12:24 PM (GMT-7)