topic Re: Prostate Cancer - If you, your spouse, or anyone you know has been diagnosed with it. in SmorgasBoard

Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Wed, 04 May 2011 18:36:21 GMT

Prostate Cancer - If you, your spouse, or anyone you know has been diagnosed with prostate cancer, I want you to know that there is an alternative to surgery or damaging types of radiation therapy. It's called proton therapy. But it's not for everybody...the cancer must be confined to the prostate, and there is a time commitment involved, as well as possible financial commitments. Most insurances will cover this treatment option, though.

Please Google any term referencing protons or proton therapy as a treatment option for prostate cancer. Proton therapy has been available in a hospital setting for over 20 years now in the United States, but the chances are good that your doctor will never tell you about this option for treating your prostate cancer (or that of a loved one).

I've interviewed over 150 men with prostate cancer diagnoses. Out of them all, only one man's doctor told him that proton therapy was an option for the treatment of his prostate cancer. Surgeons recommended surgery, and radiation oncologists recommended radiation. As there are a limited number of facilities offering proton treatment, this option was never mentioned to 149/150 of the men I've spoken with.

Most of the men I've spoken with were made aware of this treatment option by searching for treatment solutions themselves on the internet. Most also received negative opinions from their doctors when asked about protons as a viable treatment option.

The Mayo Clinic has recently announced that it is building two separate facilites for proton treatment, at a cost of over $385 million. This is after years of clinical studies to prove effectiveness of treatment. There are eight other operating proton facilities in the US as of this time (Mayo Clinic's facilities may take another two years to get up and running).

This is not an ad of any kind, for any one place or for any one type of treatment. It's a heads up for anyone suffering the anguish of how to deal with prostate cancer. You need to know all of the options available to you, including proton therapy treatments, and then evaluate them for yourself.

Sometimes, the treatments offered are much worse for the quality of your life than the disease itself, and there are better alternatives if you look for them.

For anyone here affected by prostate cancer, please feel free to PM me at any time.

Disclaimer: I'm not a doctor. Do not take any advice I offer. But don't just accept a doctor's advice, either. Do your own homework, ask questions, and get as many opinions as you can from professionals...research things on your own. You've got to decide things for yourself, but I'll be happy to share my personal experiences at any time. Your treatment decision affects the rest of your life.

P.S. This is not a cut-and-paste article from anywhere. I wrote this myself, today. It's a "pay it forward", as well as a "pay back for prayers answered". So, now you know.

Note: I've edited my original post somewhat for greater searchability, in hopes that this message gets out to as many folks as possible who are looking for treatment alternatives.

Re: Prostate Cancer - If you, your spouse, or anyone you know has been diagnosed with it.

haulingthescoreup — Wed, 04 May 2011 17:31:29 GMT

Wow, what a wonderful decision to post this here! So that's where you've been. I don't know about anyone else ;), but I'm delighted you're back, and doing well.

I'm adding this to my files.

- - - - - - - - - -

Just an addendum: as many of you are aware, I do medical records for the VA, meaning that I read an awful lot of medical notes, and the overwhelming majority are on male patients. Nearly every one of them declines a rectal exam by their provider, and unfortunately, I see too many of them later diagnosed with advanced prostate CA.

Guys, guys, this exam might not be the most fun thing on earth (although I can assure you that it ain't nuthin' compared to what we women have to put up with), but it can save your life. No one likes discomfort, and no one wants to think about getting diagnosed with cancer*, but in most cases, prostate CA is slow-growing and can be controlled if caught early enough. Bite the bullet, and let your doctor check you out.

Do it for the people who love you, if for no other reason!

* The bit about "no one wants to think about getting diagnosed with cancer"? That goes for women, too. Do your breast self-exams, and get your Pap smears (ouch) and mammograms (ouch ouch) done. Don't ever let the fear of the unknown keep you from doing what you know you need to do.

Re: Prostate Cancer - If you, your spouse, or anyone you know has been diagnosed with it.

MarineVietVet — Wed, 04 May 2011 17:55:54 GMT

Hi UBUP,

I appreciate you writing all this. I started to say that it must have been hard but then I thought no.......it might actually be cathartic for you.

I'm also glad to have you back. I kept waiting and waiting for you to log back on. :smileyhappy:

Re: Prostate Cancer - Consider Proton Therapy Treatments

LilMirth — Wed, 04 May 2011 19:02:03 GMT

Thanks so much for posting this UBUP!

And, I'm so very glad to see you back here! :smileyhappy:

Re: Prostate Cancer - If you, your spouse, or anyone you know has been diagnosed with it.

Uborrow-Upay — Wed, 04 May 2011 19:21:22 GMT

haulingthescoreup wrote:

Guys, guys, this exam might not be the most fun thing on earth (although I can assure you that it ain't nuthin' compared to what we women have to put up with), but it can save your life. No one likes discomfort, and no one wants to think about getting diagnosed with cancer*, but in most cases, prostate CA is slow-growing and can be controlled if caught early enough. Bite the bullet, and let your doctor check you out.

Hauling, it was almost too late for me. Almost.

For men who don't want the rectal exam, at least get the PSA testing done. It's a blood test, and you're going to have that anyways if you're getting a routine checkup, so have the Doc add that PSA test to his list of things to do with your bloodwork.

My prostate was pretty normal on the DRE, but my PSA was absolutely through the roof. The biopsy confirmed cancer.

I wasn't going to do anything about it because I didn't like the idea of likely incontinence and/or impotence. I think that's what stops most guys from even checking, the fact that once he knows he's got cancer, he has to make a decision that could ruin his quality of life, permanently.

Fortunately, in most cases, proton therapy has minimal (if any) side effects, and certainly not the ones I mentioned above. (Emphasis on "in most cases"...there aren't any guarantees for any treatments).

I'm just fine, a little tired still, but everything's working! :smileyhappy: The most difficult part of the proton treatment was discovering it in the first place, and I believe I had some help from the Guy Upstairs in that regard.

Thanks, Hauling, Marine and LilMirth (and others) for the welcome back. :smileyhappy:

UP,Re: Prostate Cancer - Consider Proton Therapy Treatments

Imhotrodcrazy — Wed, 04 May 2011 19:49:36 GMT

UBUP,

Thanks for posting this, I have never heard of it either. My doctors always include a PSA test yearly. I am glad that you found out in time and that you are doing well. I hope and pray that you reach 100% full recovery soon.

Re: UP,Re: Prostate Cancer - Consider Proton Therapy Treatments

marty56 — Thu, 05 May 2011 01:09:02 GMT

+1000

Re: UP,Re: Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Thu, 05 May 2011 12:06:51 GMT

Hey, hotrod and marty! Good to see you, and thanks!

Like I said, I'm just a little tired still, and I believe most of that is from being totally stressed for months on end, and now the pressure's off...maybe it's like a post-traumatic thing?

Aside from that, there really wasn't anything to recover from. I've been at (or close to) 100% during and after the proton therapy treatments.

I was on a "radiation vacation"...that's what most of my fellow patients called it.

I played golf at some of the best courses on the West coast, went sightseeing (a lot!), swam frequently at California's beautiful beaches (in the winter, no less...great for someone from New England). I dined at an ecclectic array of restaurants, gambled in Vegas (had to force myself to do that...yeah, right), and much, much more.

I also made a lot of new friends, most of whom were engineers, physicians (yes, they were there as patients), lawyers, CEOs of major corporations, analysts, etc...all of whom had that same mindset as I do. Each of them investigated all of the options they were told about, and then kept going and found the options that they were not told about, including the proton therapy we were all there to receive.

These men made their choice after examining all of the data available to them.

That made me feel a whole lot better about my decision for receiving proton therapy, 'cause each one of these men was much more educated than I am, and undoubtedly smarter, too. (Well, maybe or maybe not...but definitely more educated!)

But I'm still better looking...and taller...so there! :smileyvery-happy:

Re: UP,Re: Prostate Cancer - Consider Proton Therapy Treatments

Barry — Mon, 09 May 2011 22:27:08 GMT

So very glad to have U back, UBUP!!! :)

Re: UP,Re: Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Thu, 12 May 2011 15:44:31 GMT

Thank you, Barry!

It's great to be here again!!

Re: UP,Re: Prostate Cancer - Consider Proton Therapy Treatments

beamMEup — Thu, 12 May 2011 16:03:37 GMT

It's great to have you back UBUP!

Thanks for posting this superb information! DH's dad had prostate cancer but no one in his family is familiar with this treatment. Thanks for making it easier for folks to research and learn about appropriate and helpful options.

Most of all, thanks for bringing your great personality back to the forums! And glad you got to work on your golf swing while you were in the midst of everything else. :smileywink:

Re: UP,Re: Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Fri, 13 May 2011 11:53:10 GMT

beamMEup wrote:
It's great to have you back UBUP!

Thanks for posting this superb information! DH's dad had prostate cancer but no one in his family is familiar with this treatment. Thanks for making it easier for folks to research and learn about appropriate and helpful options.

Most of all, thanks for bringing your great personality back to the forums! And glad you got to work on your golf swing while you were in the midst of everything else. :smileywink:

There is absolutely nothing wrong with my golf swing...I go 18 holes under 80...

(if it gets any hotter than that, I just leave my clubs at home, and merely "water" myself at the nineteenth hole)

Thanks, beamMEup...it's good to see you, too! And I hope all is well with DH's Dad.

Re: UP,Re: Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Sun, 15 May 2011 14:35:17 GMT

I thought someone here would appreciate my "18 holes, under 80" joke.

Tough crowd.

Or maybe I need new script writers...:smileyvery-happy:

Re: Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Sun, 29 May 2011 12:32:26 GMT

You know, prostate cancer isn't something guys talk about among themselves. It's not a comfortable subject.

I told very few people about my prostate cancer. A very close friend that I did tell happened to hear about one of his friend's relatives with that same diagnosis. He asked if he could give my number to that man so we could talk. I said OK. This was several months ago.

The man called, and we spent several hours on the phone. I told him everything I'd found about treatment options. He'd done his homework, too, but had not heard about proton therapy at all. When I'd explained what I had learned and experienced, he seemed hopeful, but still somewhat skeptical (and I don't blame him for that).

I'm posting this now because I received a call from him just yesterday afternoon. He's been accepted for proton therapy treatment, and is going to be receiving the proton therapy at one of the eight facilities in the U.S. that offers it. This man is from Germany.

He thanked me so much I had to tell him to just stop, it was embarrassing. But I also asked him to pass on what he'd learned from me, and what he'd learn for himself as he moves forward on this, to other guys in the same situation.

I have never felt so good in my life as I did when he told me "Thank You! You really helped me. You saved my life."

This is a guy I don't know, and I'll probably never meet, but I really feel I made a difference in his life. I only hope that you can feel that same joy in helping someone else as I felt yesterday.

And that help you give can be anything you choose.

You can make a difference in someone's life, today. Most of the time, we just don't realize that we already do that, for good or bad.

(Good is better, though!) :smileyhappy:

Sentimental blabbering is now over. Carry on...

Re: Prostate Cancer - Consider Proton Therapy Treatments

Hopelives2 — Wed, 15 Jun 2011 21:05:22 GMT

FYI -

Proton therapy is not for prostrate only, it is for all cancers that are contained in one location... ala, tumors. There are NINE facilities in the US. Because of the radiation (protons, neutrons, and electrons make up an atom) and the immense concrete needed to house the proton machine, the facilities are expensive to build and operate.

http://www.proton-therapy.org/documents/dotmed511.pdf (for more information)

I just found this post today, and ironically, had written an article on proton therapy a few weeks ago due to a minor child having the therapy done.

As an aside, it is very awkward for men to discuss this aspect of their bodies which is sad in and of itself. In this day and age when breast cancer is mainstream, so should the prostrate be.

Congrats on your recovery!!!! (and golf swing) :smileywink:

Re: Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Thu, 16 Jun 2011 13:52:11 GMT

Thanks for posting that article, Hopelives2! I expect the debate over cost vs. benefits, effectiveness of modalities of treatment, etc. will go on for quite a while. For me, and I'm sure for your child, too, the debate is over. I thank God every day that I learned about proton therapy, and that I was finally accepted for treatment.

I saw quite a few children being treated with protons. In a lot of cases, it appears that's the only viable option for young bodies still developing.

As you said, this therapy is not limited to prostate cancer. Cancer of the eye is another major condition in which protons are, IMO (albeit a non-medical one), the best (if not only) acceptable treatment.

I toured the synchroton, spoke with physicists and techs, even met with company reps from Belgium. The technology is astounding. But for reasons pointed out in the article (cost, lack of long-term data), proton therapy will continue to be available to only a small fraction of the population.

The financial cost (my insurance paid out a shade under $300,000 for my treatments, as I discovered when reviewing the statements) is more than just the medical bills. Travel, housing and emotional costs are involved, too. But I feel, as I'm sure you do, that receiving the absolute best treatment available for yourself or a loved one is worth the cost...at any price.

The biggest problem with proton therapy is that not many folks know it even exists, and I've found that my numerous doctors never even mentioned it. Misconceptions abound, the info that's out there is outdated by many years, or perhaps treatments aren't mentioned because those treatments are not readily available in that doctor's venue. I believe that if people were given the information and the choice, they would choose proton therapy over surgeries or other forms of radiation, at least as it pertains to prostate cancer.

Thank you so much for getting into medicine! And I wish the best for you, your family and your "proton child", whom I'll now consider a younger brother (or sister?).

:smileyhappy:

Edit for this P.S. - I'm posting a link here for anyone needing more info about proton therapy for prostate cancer. Hope this is allowed. The testimonials are amazing. But I cannot stress strongly enough that every man should do his own homework and make his own choice. I AM NOT A DOCTOR. My comments and my opinions are mine alone.

Re: Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Mon, 18 Jul 2011 14:23:06 GMT

Blatant bump up. :smileyhappy:

After all, I've never said I was shy...

Hope this helps someone!

Re: Prostate Cancer - Consider Proton Therapy Treatments

Imhotrodcrazy — Wed, 20 Jul 2011 20:43:54 GMT

Uborrow-Upay wrote:
Blatant bump up. :smileyhappy:

After all, I've never said I was shy...

Hope this helps someone!

Yes, we need to keep this topic alive. In fact, I was talking about this with a very good friend of mine at breakfast this morning. The more we discuss what each one has gone thru, the better chance those who get cancer, and act quickly, will be able to beat it down the line much faster. Again, my hat is off to you my friend for bringing this message front and center. Hope you are still doing great.

Re: Prostate Cancer - Consider Proton Therapy Treatments

LIzLady — Mon, 01 Aug 2011 13:19:15 GMT

Another well-known and accommodating proton therapy center is IU Health Proton Therapy it is one of nine centers located in the US. [dropping the link so you can check out the facility- hope that’s okay]

Proton Therapy, in and of itself is an amazing alternative cancer treatment, especially for prostate cancer. This therapy center is especially interesting because it’s located in a college town: Bloomington, the city that is home to Indiana University. That means, as soon are your treatment is done you can spend your time recovering around campus- that means scheduling your tee time and everything! ;)

Re: Prostate Cancer - Consider Proton Therapy Treatments

Uborrow-Upay — Mon, 01 Aug 2011 16:39:21 GMT

Thank you, LizLady!

Informed choices are the best choices, and I truly appreciate your contribution to this thread.

:smileyhappy: