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steve1

Convicts have better health care than I do!

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There are two things holding back Proton Radiation treatment. One is the higher cost. Two is old school doctors who are not willing to admit that there is a better treatment. It's not easy to admit that what you were trained in is obsolete.

More and more evidence is being produced each year, stating the superiority of proton treatment. Yes, there are still doctors and studies that say say the opposite.

Further clinical trials will bring out the truth.

The cost is coming down. With shorter treatment periods and advances in technology the initial cost will be brought down greatly. Insurance companies will quit griping when that happens.

The initial cost of treatment, with protons is often exaggerated. The cost is not three times higher, as this article states. Proton Radiation is about $8,000 more than IMRT for the treatment.

To say that IMRT has just as few side effects is ridiculous. I'm not 80 years old, so I do worry about secondary cancers.

It's also important to figure the cost to treat side effects and complications. If the job is done right the first time, there will not be problems later. This can add up to a huge amount of money. And how do you put a price on quality of life? I don't want to spend my remaining years wearing a diaper or wearing a urine bag. I'm not willing to give up my sex life. I don't want an old school treatment. Nor do I want IMRT. Who knows what the long term damage is from that. It's new.

As far as complications in the short term or later, ask people who have had Proton Radiation done. 99 % are willing to say they are satisfied with the treatment they received. Most of the people getting Proton Radiation, at Loma Linda, are being treated for Prostrate Cancer.

Conclusive proof may be coming twenty years from now. I don't have that long to wait. I don't listen to old school doctors stating that their treatment is just as good. Where is there proof? One or two studies isn't enough.

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>The bottom line is that randomized clinical trials have never been done to determine
>which prostate cancer treatment is better. So, it's impossible to say which treatment is
>best. There is a ton of research that shows that Proton Radiation is at least as good as
>any treatment out there for killing the cancer.

And that's probably the big issue here. Many insurance companies will not pay for unproven treatments; there needs to be evidence that it is at least as effective as current treatments.

(Which is good when you think about it. They do NOT want to push a treatment that ends up having a much higher recurrence rate. That's bad for the insurance company _and_ the patient - but can be really frustrating while you're waiting for the research to complete.)

>Comare that to Proton Radiation. With Proton, the radiation activates when it hits the
>tumor and then stops. It's like comparing a smart bomb to a cluster blomb.

That's actually not true - it's just somewhat better than photonic radiation. For example, your skin is going to get around 75% of the radiation as the target area gets. However, the tissues _behind_ the tumor get closer to 5% of the radiation, which is why it's attractive.

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>The bottom line is that randomized clinical trials have never been done to determine
>which prostate cancer treatment is better. So, it's impossible to say which treatment is
>best. There is a ton of research that shows that Proton Radiation is at least as good as
>any treatment out there for killing the cancer.

And that's probably the big issue here. Many insurance companies will not pay for unproven treatments; there needs to be evidence that it is at least as effective as current treatments.

(Which is good when you think about it. They do NOT want to push a treatment that ends up having a much higher recurrence rate. That's bad for the insurance company _and_ the patient - but can be really frustrating while you're waiting for the research to complete.)

>Comare that to Proton Radiation. With Proton, the radiation activates when it hits the
>tumor and then stops. It's like comparing a smart bomb to a cluster blomb.

That's actually not true - it's just somewhat better than photonic radiation. For example, your skin is going to get around 75% of the radiation as the target area gets. However, the tissues _behind_ the tumor get closer to 5% of the radiation, which is why it's attractive.



I don't mean to be argumentive about all this. I'd like to learn more. I don't think that any radiation is perfect. There are dangers involved, even with Proton Radiation. It just seems like the best option to me, by far.

There is tons of proof on the effectiveness of Proton Radiation. The insurance companies don't want to admit that because it costs them more.

This is changing. Today most insurance companies will pay for Proton treatment. More than 180 companies have paid for it in the past. Loma Linda usually can convince insurance companies to pay for this. So, I'm hoping it all works out.

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There is tons of proof on the effectiveness of Proton Radiation. The insurance companies don't want to admit that because it costs them more.

This is changing. Today most insurance companies will pay for Proton treatment. More than 180 companies have paid for it in the past. Loma Linda usually can convince insurance companies to pay for this. So, I'm hoping it all works out.



Best of luck to you!
"Mediocre people don't like high achievers, and high achievers don't like mediocre people." - SIX TIME National Champion coach Nick Saban

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(Which is good when you think about it. They do NOT want to push a treatment that ends up having a much higher recurrence rate. That's bad for the insurance company _and_ the patient - but can be really frustrating while you're waiting for the research to complete.)



The classic non-cancer example of this is thalidomide, but another example is bone marrow transplants for breast cancer patients:

http://theincidentaleconomist.com/wordpress/the-rise-and-fall-of-bone-marrow-transplantation-for-breast-cancer-a-tragic-success-story/

On the other hand, two of the women in my support group just died (along with many others) because TDM-1 (now called "Kadcyla") approval did not come soon enough. I still have worries about the accelerated approval TDM-1 received because we don't know what will happen in the long term. Also, I've known several women to fail on it.

I very nearly missed out on radiation (which is not routine for mastectomy patients). I asked about it twice because my cancer is a variety that likes to metastasize even from very early stage. I was told "no" by both my surgical and medical oncologist. Then my nurse made an erroneous assumption, and the subject came up again. To stop my whining once and for all, I was given an appointment with a radiation oncologist. He advised me that two very recent studies indicated a clear survival benefit conferred by radiation for some mastectomy patients. My other oncs were not aware of these studies. I dodged a bullet, and that indicates to me that to get the best care, patients need to make nuisances of themselves.

One big problem is that patients have a hard time balancing the social responsibility of participating in clinical trials with the issue of personal survival. Not everyone makes it into the experimental arm, and it means that some of the controls go looking for other options. The consequence is that it takes a long time to recruit for these trials, and those who need treatment now will need to make other choices among approved protocols. (Either that or apply for compassionate access, but that's not an option for proton-beam therapy for prostate cancer.)

So here I am squarely on both sides of the fence, and I can promise you that it's as uncomfortable as it sounds.

I do hope that Steve can get the therapy he wants. Apart from the perceived physical benefit, there's a real psychological benefit in receiving a treatment one sees as lifesaving, and I've known patients who have hung on longer for that very reason.
If you don't know where you're going, you should know where you came from. Gullah Proverb

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RhondaLea,
I wish you the best too. This cancer crap is no fun. I hope I didn't sound too controversial on any of this. I get so damn mad that I lash out at others. My anger is probably a cover up for the fear I have inside. I've watched several relatives suffer from prostate cancer. I hope to fair better than they did.

At any rate, I wish you the best in your battle with this disease!

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Paying for healthcare at all is fucked up, in my opinion.

do you pay taxes ?



Yes but when you turn up at a hospital with a broken ankle from doing whatever (skydiving/fall off a ladder) they fix you up, you walk out and you don't have a bill for $20,000, you don't have to fight a battle with insurance companies.

The taxes paid so I and others get 'free' healthcare don't really make much of an impact on my quality of life, I don't need to worry about renewing them each year, I don't need to worry about invalidating my healthcare. If I lose my job, I don't need to panic I could lose everything if I get injured. Even expensive treatments such as Proton Beam are paid by the NHS.

Sure the NHS could be run better (less admin, more doctors) and they arn't perfect but in a 1st world country anyone should be able to get themselves or their family put back together without having to sell their life/home and owe everything they earn for the rest of their life to a hospital.

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> I don't think that any radiation is perfect. There are dangers involved, even with
>Proton Radiation. It just seems like the best option to me, by far.

Agreed, and to be clear, I think you're the best person to make that decision. Hopefully the results that come back from the studies of long term survival from proton therapy show that it is either better than or similar to photon therapy, and thus is at least an equally valid treatment.

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> I don't think that any radiation is perfect. There are dangers involved, even with
>Proton Radiation. It just seems like the best option to me, by far.

Agreed, and to be clear, I think you're the best person to make that decision. Hopefully the results that come back from the studies of long term survival from proton therapy show that it is either better than or similar to photon therapy, and thus is at least an equally valid treatment.


I don't think that anyone doubts the effectiveness of Proton Radiation in killing the cancer. It is at least as good as any treatment out there, if not better. One reason it may be the very best for that is that higher amounts of radiation can be delivered to the tumor, without making you really sick or killing you. That isn't an option with most other forms of radiation.

But there is more at stake here than just stopping the cancer. Quality of life is very important to me. If you choose the wrong treatment, you are likely to be messed up for life.

Where Proton Radiation really shines is in terms of side effects. That is the reason it's so popular. Some treatments are worse than the cancer itself, because of complications and side effects. I truly hope I'm not forced into a treatment that I don't believe in, just because it's cheaper.

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>
>Comare that to Proton Radiation. With Proton, the radiation activates when it hits the
>tumor and then stops. It's like comparing a smart bomb to a cluster blomb.

That's actually not true - it's just somewhat better than photonic radiation. For example, your skin is going to get around 75% of the radiation as the target area gets. However, the tissues _behind_ the tumor get closer to 5% of the radiation, which is why it's attractive.


.




This is contrary to anything I've read about Proton Radiation. I'm wondering where this info. came from. The information I've seen states that very little proton radiation contacts healthy tissues. That most all of it is delivered to the tumor itself.

With X-ray (photon) radiation, the highest amount is delivered when it first enters the body. It is affecting healthy tissue on it's entire path through the body. Less radiation may actually be hitting the tumor than the surface tissues. To avoid too much damage, the entrance and exit points are continually being changed.

With Proton Radiation there are only two entrance points. For prostate cancer that would be on both hips. Again most all of the radiation is delivered to the tumor.

I would think that anyone receiving Proton Treatment would end up with two dead holes, in the skin and surface tissues. if the radiation entered the body at a 75% level.

I'm not a doctor, but maybe the following words can explain Proton Radiation better. This comes from a doctor at The Abramson Cancer Center in Pennsylvania.....

"Unlike with X-rays, the absorbed dose of a proton beam increases very gradually with increasing depth and then suddenly rises to a peak at the end of a proton range. This is known as the Bragg Peak (Dmax of a proton beam). A proton beam can be directed so that the Bragg Peak occurs precisely within the tumor volume, something that can almost never be done with X-rays. The dose around the tumor volume is much less than the tumor itself, thus sparing normal tissue in this area. The dose immediately beyond the Bragg Peak of a proton beam is essentially, zero which allows for the sparing of all normal tissues beyond the tumor volume. Side effects, both acute and long-term, typically seen with X-ray therapy can thius be markedly reduced with proton beams due to the sparing normal tissues that are situated around the tumor."

If you look at the delicate area, where the prostate is located. I don't want a carpet bomb type of treatment.

I know that Proton Beam radiation is not perfect. One of the few long term side effects is a greater likelihood of hip fractures. So, I know there is some radiation delivered to healthy tissues. The proton radiation passes through both hips.

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That's fucking unjust.
Found this chart which puts it pretty neat. If more money is spent on prisoners than on students (or hard-working employees) something is very wrong!
The sky is not the limit. The ground is.

The Society of Skydiving Ducks

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>With X-ray (photon) radiation, the highest amount is delivered when it first enters the body.

True.

>I would think that anyone receiving Proton Treatment would end up with two dead
>holes, in the skin and surface tissues. if the radiation entered the body at a 75% level.

It's not very healthy for your skin, no. You get around this several ways:

1) By calibrating the dose so that you just hit lethality for the tumor area
2) By rotating the beam so that the only place where the beam stays "on target" is the tumor

To see how 2) works take a look at the second attachment. That entire emitter assembly spins. This is good because the time-on-target for any one patch of skin is lower; it is bad because a "slice" of your pelvis sees the beam rather than just one small area. (Note they do this for X-ray treatment as well.)

>Unlike with X-rays, the absorbed dose of a proton beam increases very gradually with
>increasing depth and then suddenly rises to a peak at the end of a proton range. This
>is known as the Bragg Peak . . .

Yes, and they also vary the proton energies so that the peak is 'spread' throughout the volume of the tumor. A picture demonstrating this is attached. Note the entrance energy (around 75%.)

Also note that these things are incredibly expensive, and thus facilities like Loma Linda have a very strong incentive to "push" their use - even if there are no definitive studies that show it works better.

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>I don't think that anyone doubts the effectiveness of Proton Radiation in killing the
>cancer. . . . I truly hope I'm not forced into a treatment that I don't believe in, just
>because it's cheaper.

I agree, and I do think you should be able to make the decision. But again, I haven't seen any studies that show that proton therapy works better than X-ray therapy. Here's an overview on it from Nature:

=======
Nature Reviews Clinical Oncology 9, 371-372 (July 2012)

Urological cancer: For localized prostate cancer, does technology equal progress?

Matthew R. Cooperberg

Efforts are constantly ongoing to introduce alternatives to standard treatments for localized prostate cancer that offer equivalent or better oncological efficacy, together with reduced side effects. However, the recent history of treatment evolution has been driven more by marketing hype and misaligned financial incentives than by high-quality evidence. . . . .

Indeed, while there are theoretical radiation biological advantages to proton-beam therapy, no clinical study—anywhere, ever—has shown any clinical advantage in terms of either oncological or quality-of-life outcomes. Proton-beam prostate treatment fortunately remains uncommon, but new facilities are proliferating rapidly, and because once a facility is constructed there is a major incentive to recoup a prodigious investment, local prostate cancer practice patterns tend to shift to reflect more use of proton-beam treatment. . . .
=======

It sounds like it might be a good gamble to take, but just be aware the it might well result in a poorer outcome (survivability _or_ quality of life.) There's just no good comparison yet.

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>
======= However, the recent history of treatment evolution has been driven more by marketing hype and misaligned financial incentives than by high-quality evidence. . . . .

Indeed, while there are theoretical radiation biological advantages to proton-beam therapy, no clinical study—anywhere, ever—has shown any clinical advantage in terms of either oncological or quality-of-life outcomes.

It sounds like it might be a good gamble to take, but just be aware the it might well result in a poorer outcome (survivability _or_ quality of life.) There's just no good comparison yet.




I just don't agree with this. These other treatments don't have any more clinical evidence going for them. There is a ton of evidence proving they have more side effects.

There is more to proton radiation, than marketing hype. This opinion article, sounds like hype that an old school doctor might produce to validate a treatment that is now obsolete.

I've often heard of people referring to Proton Treatment as the new expensive treatment. Proton Radiation has been used for treating cancer patients for almost 60 years. In that time it is not difficult to look at survivability rates after treatment. Or to look at short and long term side effects. Hundreds of studies have documented the effectiveness of proton radiation. Proton therapy has been the topic of 3,000 papers since 1954.

Would most insurance companies cover Proton Radiation, if there was no clinical evidence that it was effective? I think not. More than 180 insurers have paid for this treatment in the past.

IMRT has only been around for ten or fifteen years. It is now being promoted as the new best treatment. The bottom line is that noone knows what the long term effects are. Too much X-ray radiation causes cancer. With IMRT you are being pumped full of enough X-ray radiation to kill a horse. Yes, it might take ten years for this new cancer to show itself. If you treat someone who is 80, what does it matter? The thing is that I'm not eighty, and plan to live more than another ten years.

Yes IMRT it is cheaper in initial cost, but I don't want it. The side effects are worse, and there is no clinical proof that it kills the cancer better. Impotence, rectal problems, incontinence, and secondary cancers are some of the side effects and complications that are likely or possible with IMRT.

I wonder how many IMRT centers are using hype to market their technology? After all they too are trying to pay for their expensive equipment and hospitals. I have been dealing with another treatment center in Arizona. They are trying to sweet talk me into coming down. They even offered to pay for my plane ticket and motel. They offer about every treatment option, except Proton. The guy kind of reminded me of a used car salesman. The only thing is, I don't want anything they have to offer.

I figured what the heck, I might just go down and jump at Eloy, and enjoy this free trip, but I don't want to spend three days arguing with these guys.

At Loma Linda Hospital they treat close to a hundred cancer patients a day. Have they all been duped by marketing hype. I think not! What about the 100,000 other patients who have been treated with Proton Treatment? Are they all now dead or living miserable lives? Absolutely not. Nearly all are happy with the treatment they received. A recent study documents that.

Where is the clinical evidence that shows that another treatment is better than proton radiation? A study or two or an opinion article isn't enough.

Until randomized clinical trials are done, noone can say that one prostate cancer treatment is better than another. People are rarely in used in life and death studies. It is unethical. But with the evidence that is available, Proton Radiation has proven to be just as effective in killing the cancer, as any treatment out there.

When looking at the chances of cancer coming back, I have about a 96% chance of remaining cancer free in ten years with Proton radiation. Noone else can offer a higher rate than that. A recent study in Florida, shows a 99% disease free survival rate (at five years) for low risk prostate cancer such as I have. And that is without the god awful side effects of traditional treatments.

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RhondaLea,
I wish you the best too. This cancer crap is no fun. I hope I didn't sound too controversial on any of this. I get so damn mad that I lash out at others. My anger is probably a cover up for the fear I have inside. I've watched several relatives suffer from prostate cancer. I hope to fair better than they did.

At any rate, I wish you the best in your battle with this disease!



I did not find anything you posted to be offensive, and I understand your anger.

I hope you're able to get the treatment you want and that it leaves you dancing with NED for good.

rl
If you don't know where you're going, you should know where you came from. Gullah Proverb

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You sound like a really nice person Rhonda Lea. I hope you can kick your cancer in the rear.

I used to be nice before I turned into a grumpy old man. This cancer stuff hasn't helped my disposition any. What I have isn't very serious yet. I'm really lucky it isn't worse.

I think I'm going to go down to Arizona and check out what that treatment center has to offer. It might even be a chance to start jumping again. The trip down there is on their nickle, and maybe I'll find another option, for my cancer. I know I'm awful closed minded and sometimes I have trouble seeing further than the end of my nose.

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More bad news today.... All these people that do not believe so many other people are having so many issues with their health insurance companies... will eventually have reality slap em up side their head when that reality of the new corporate insurance when its them who are the ones trying to use their "health benefits"[:/]

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>Where is the clinical evidence that shows that another treatment is better than proton radiation?

There's none. Nor is there any solid evidence showing that photon therapy is worse. It's the lack of evidence that's the problem.

As you've mentioned there are a handful of studies that are not conclusive. One shows a slightly lower incidence of hip fractures for proton therapy but a slightly higher incidence of erectile dysfunction. Several others that look only at morbidity show very similar results.

>With IMRT you are being pumped full of enough X-ray radiation to kill a horse. Yes, it
>might take ten years for this new cancer to show itself.

That's true of both treatments. They work the same way - by blasting the DNA of cells apart, and you could definitely kill a horse with either treatment. In both cases the hope is that the cells are either killed completely, unharmed or damaged in such a way that they do not become tumors.

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Bill,
There is a huge difference in the way these types of radiation are delivered. They are not both the same.

As I said earlier, IMRT and most forms of external beam radiation use X-ray radiation or Photons. This radiation is delivered, full strength, when it enters your body and it effects healthy tissues on it's entire path through your body. To avoid doing too much damage, the entrance point and exit point are continually changed. You are pumped so full of radiation that you can never have radiation again. This is the same radiation that the dentist uses when he takes an X-ray. The last time I had that done they put a lead shield on my chest. That was for one X-ray. You are receiving thousands of times that amount of radiation, when you receive X-ray radiation for cancer. So, in time you may very likely come down with a new cancer caused by all that.

Proton radiation is not radiated throughout your body at nearly as high a level as X-ray radiation. I thought I explained all that earlier. It does not enter the body at 75% of potency as you stated earlier. The amount of radiation that healthy tissues receive is minimal. The proton radiation travels to the cancerous tumor and destroys that area only. The chance of contracting secondary cancer is virtually zero with Proton Radiation!

Again.....this is like comparing a smart bomb to a cluster bomb. Delivery of the radiation is completely different.

I don't know where you are getting your information, but much of it is wrong. There is not a higher incidence of hip fractures with the other external beam radiations. That is because it is delivered in multiple entry and exit points.

There is a higher incidence of hip fractures with Proton treatment for prostate cancer. That is because the same entrance points are used over and over again....through the hips. There is not much radiation affecting healthy tissues, but there is enough to affect the hips slightly. This one of the only long term side effects for Proton therapy.

As far as sexual side effects, who in the world told you that it was higher with Proton Radiation? That is simply a big lie. With most forms of radiation the rate of impotency is about 60%. That means you are unable to have sex without the aide of drugs or other wierd contraptions or injections. And even that may not work. If you have your prostate surgically removed, that rate is closer to 80%. For Proton radiation the rate of impotency is 30% or less. Most men who have Proton Radiation done, say that there is no change in their sexual function.

There is tons of evidence to prove all this. More than 3,000 papers and studies have been done since 1954.

But randomized clinical trials have never been done comparing all of the various treatments. This will probably never be done because it is unethical, to use human guinea pigs in life and death studies. Without that is is not possible to absolutely state that one treatment is better than another.....But that doesn't mean there isn't any evidence available! There is mountains of it.

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I don't have a clue on how to down load studies, but I'll try to type this up without making too many typing errors.

This was published in Loma Linda University Health News:

A staggering 99 percent of prostate cancer patients treated with proton therapy believe they made the best treatment decisions for themselves, according to a new report released Feb 13, 20013 at the National Proton Conference in Washington, D. C. The report analyzed outcomes and satisfaction of approximtely 6,400 prostate cancer patients, more than 80 percent of whom received treatment at Loma Linda University Medical Center.

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

This was an earlier study by Dr. Slater and David Bush MD:

Breakthrough Study Reaffirms Proton Therapy Efficacy; Post-Treatment Quality of Life on Par With Men Never Afflicted by Cancer

Loma Linda, Calif. (PRWEB) Oct. 30, 2012- Prostate cancer patients treated with proton thrapy at Loma Linda University Medical Center (LLUMC) have a post-treatment quality of life on par with men who have never been treated for cancer, according to a study presented at the annual American Society for Radiation Oncologists meeting in Boston.

The breakthrough study evaluated the quality of life of approximately 1,000 prostate cancer patients following proton therapy treatment at five centers and compared them to men who haven't been treated for cancer. Of the 1,000 prostate cancer patients surveyed, 80 percent were treated at LLUMC's James M. Slater Proton Treatment & Research Center, the first and foremost hospital-based proton tretment center in the nation.

"This Study reaffirms the results we've seen from our patients for the past 22 years and supports the mountain of evidence regarding the efficacy of proton therapy," said Jerry D. Slater, MD, chairman of the LLUMC Center Dr. Slater and Dr. David Bush, vice-chairman of the Department of Radiation at LLUMC, were co-authors of the study entitled "Multi-Institutional Patient_Reported Quality of Life After Proton Therapy for Prostate Cancer Compared to Non-Treated Men."

The study analyzed men at a median age of 65 who were at least one year from the end of their proton treatment and specifically looked at their urinary, hormonal and bowel functions. In all of these areas, men who had been treated for prostate cancer with proton therapy fared as well, if not better, than the men who never had cancer. Sexual differentiators existed in men who were slightly older than median age and or were taking hormone therapy.

"Proton therapy is a highly effective treatment for prostate cancer as the targeted proton beams spare surrounding healthy tissue and minimize the typical side effects from standard photon beam radiation including incontinence and impotenc," says Dr. Slater.

Since LLUMC brought modern proton treatment for cancer into the mainstream in 1990, there have been countless studies and trials that have shown proton therapy to be the treatment of choice for many types of cancer. Over the years, proton treatment has been refined and, coupled with leading-edge technology, has become one of the best treatment options for doctors and patients. While prostate cancer remains one of the primary uses for proton therapy, the pinpoint accuracy of the proton beam also makes it a highly effective form of treatment for many other types of tumors including those found in the head, neck, lung, and breast.
.................................................................................................

Long -Term complications associated with the treatment of prostate cancer:

Chronic Toxicity .........Protons.......Photons.....Prostatectomy

Impotence..............30%............60%.........60%

Incontinence.............1% ............3%.......... 32%
requiring a pad

Bladder Neck
Contracture...............0%..............3%............8%

Grade 3 GU toxicity.0%.............7%........... N/A

Rectal Stricture ...... 0%............ .5%........... N/A

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

I'd like to type up more of the 3,000 other studies but I have to get back to work.

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