Prostate Cancer treatment of the Century!

What is Proton Beam Therapy?
Here is a short description excerpted from the National Association for Proton Therapy's own website, NAPTA

"Proton therapy is the most precise and advanced form of radiation treatment today. It primarily radiates the tumor site, leaving surrounding healthy tissue and organs intact. Conventional x-ray radiation often radiates healthy tissue in its path and surrounding the tumor site. Chemotherapy moves throughout the entire body, unlike radiation and surgery which are considered "site specific" treatments."

Proton Beam Therapy came into my life in January 2008, when my boyfriend told me he had been diagnosed with Prostate Cancer at age 60.
I'll never forget the date, it was January 10th...(like one of those, "where were you when you heard JFK had been assassinated?" things). Your world stands still and your mind stops computing for a few seconds. I had been rabbiting on about my day, and all of a sudden he blurted it out. "I've got some bad news."
I cried, he cried, and we talked....on and on, about how this could've happened, and how healthy his diet is, and the fact that he exercises and doesn't smoke, etc. etc. Until all we were left with was how this was going to affect our relationship and his relationship with his family.

The funny thing was, his first thought was of losing me! He thought that I would possibly leave him now the spectre of illness and potential death was on the horizon....or one of the worst things a man can deal with...impotence, or incontinence...or both!
How could he think that? I guess when your world is turned upside down, all of a sudden you begin to catastrophize...and your mind takes you to places you previously hadn't been, and really don't want to go.
Instead, happily for him, I turned my every thought and action into finding a cure for him, so that we could continue our life together as a couple, and he and I could overcome this, and one day look back on it as a learning experience and one that had brought us closer together.

So....I scoured the internet until 3:00 a.m. and I knew he didn't want surgery which is what his doctor had immediately suggested, and he didn't want those radioactive seeds implanted, another option offered up by his G.P. Too many nasty side effects that could ruin his self-esteem and manhood!
So I continued in my search, sending him tons of email links to information and other men's experiences. I forgot to mention....he lives in the U.S. and I live in Canada! We're committed, but, well...it's complicated and possibly the subject of another lens down the road!:)
One day I came across a wonderful site, chock full of information on prostate cancer,ie. treatments, survivor stories.... you name it, and it's there!

Here is the link to this website : "YANA" (YOU ARE NOT ALONE)
Anyway, I read all the stories, and sifted through the information and tried to digest what treatments seemed to be working and what to avoid.
For weeks, I lived and breathed prostate cancer, and then one day I saw a few people had written about a thing called Proton Beam Therapy. Hmmmm.....what the heck is that! I thought, and then went to another site link, NAPTA ...otherwise known as the National Association for Proton Therapy.

I was very impressed with what I found there, and immediately sent it to my partner for him to explore. The best part was finding out that this approx. $150,000 treatment is completely covered by U.S. health insurance! My partner has an HMO and they covered everything from start to finish....that said he had some hiccups to deal with between the insurance and the hospital, but from what I read this is a common experience when you are sick and are trying to deal with bureaucracy!

He went to his doctor about this fabulous sounding treatment and was given the brush off essentially. The doctors/surgeons he saw were telling him that surgery was the way to go, and this 'proton beam therapy' was something they weren't familiar with, and weren't going to recommend. When he was given his choices, proton beam wasn't on the list, even though it has been around for quite a long time!
My boyfriend went for the many tests he had to endure to pinpoint the cancer and categorize it. His was in the early stages, and hadn't spread, he was lucky. He then applied to the University of Florida Proton Institute in Jacksonville. He was accepted, and to cut a long story short, he had the treatment, every day, 5 days a week, for 2 months.

Function
The main function of the prostate is to store and secrete a slightly alkaline (pH 7.29) fluid, milky or white of egg in appearance,[2] that usually constitutes 25-30% of the volume of the semen along with spermatozoa and seminal vesicle fluid. The alkalinity of prostate fluid helps neutralize the acidity of the vaginal tract, prolonging the lifespan of sperm. The prostatic fluid is expelled in the first ejaculate fractions together with most of the spermatozoa. In comparison with the few spermatozoa expelled together with mainly seminal vesicular fluid those expelled in prostatic fluid have better motility, longer survival and better protection of the genetic material
(DNA).

The prostate also contains some smooth muscles that help expel semen during ejaculation.

Secretions
Prostatic secretions vary among species. They are generally composed of simple sugars, and are often slightly alkaline.

In human prostatic secretions, the protein content is less than 1% and includes proteolytic enzymes, prostatic acid phosphatase, and prostate-specific antigen. The secretions also contain zinc with a concentration 500-1,000 times the concentration in blood.

Regulation
To work properly, the prostate needs male hormones (androgens), which are responsible for male sex characteristics.

The main male hormone is testosterone, which is produced mainly by the testicles. Some male hormones are produced in small amounts by the adrenal glands. However, it is dihydrotestosterone that regulates the prostate.

Development
The prostatic part of the urethra develops from the pelvic (middle) part of the urogenital sinus (endodermal origin). Endodermal outgrowths arise from the prostatic part of the urethra and grow into the surrounding mesenchyme. The glandular epithelium of the prostate differentiates from these endodermal cells, and the associated mesenchyme differentiates into the dense stroma and the smooth muscle of the prostate. [3]The prostate glands represent the modified wall of the proximal portion of the male urethra and arises by the 9th week of embryonic life in the development of the reproductive system. Condensation of mesenchyme, urethra and Wolffian ducts gives rise to the adult prostate gland, a composite organ made up of several glandular and non-glandular components tightly fused within a common capsule.

Skene's glands found in many females are homologous to the prostate gland in males.

Structure
A healthy human prostate is slightly larger than a walnut. It surrounds the urethra just below the urinary bladder and can be felt during a rectal exam.

The ducts are lined with transitional epithelium.

Within the prostate, the urethra coming from the bladder is called the prostatic urethra and merges with the two ejaculatory ducts. (The male urethra has two functions: to carry urine from the bladder during urination and to carry semen during ejaculation.) The prostate is sheathed in the muscles of the pelvic floor, which contract during the ejaculatory process.

So....once you're accepted as a good candidate for this treatment, the fun begins!
They build you a nice cradle formed to your body, which you will climb into every time you have a treatment ...(see the video for details). This positions you perfectly so that the huge machine that delivers the proton beam, ( it's called a Cyclatron)...can target the area which they have marked with a little removable tattoo. Needless to say this area has been mapped out by computers in the greatest detail.
They make you drink a certain amount of water prior to the treatment, the same way you do prior to an abdominal ultrasound.
Then after all the preparations are complete...all you have to do is lay back and relax, leave everything up to the technicians...it'll be over in a jiffy!
To the left below you'll see a photograph of a patient about to receive his Proton Beam Therapy treatment.( Photo used with permission from the National Association for Proton Therapy).



The whole thing only takes an hour or so, though that depends on the person and their problem. Most of that is the preparation time as outlined, and the proton beam itself may only be used for a few seconds or a couple of minutes. They treat alternate sides of the body, (with him it entered through his hip), and it only resulted in a mild "sunburn" to the area, shaped in a small circle.
He had no side-effects except for a short time, where he experienced a slight problem urinating, ie. the urine flow was weaker/slow to start. Oh yes...and the first time he had sex...OW! However, the remedy for that seems to be...keep using it(!)...it'll get better!
The urination problem was caused I think by inflammation, but an Aleve took care of that. This didn't last for long, and he now looks back on the experience as a very pleasant one, and he was happy to find that his PSA level dropped dramatically afterwards, and is expected to keep dropping to almost zero. His next check up is January '09, so fingers crossed everything will continue along that path.
*See below for updates!

Update! His pre check-up blood work results came back for his PSA level, and it has gone down further to 0.7....!! Yay! We're very happy....a lovely Christmas present, and great start to the New Year! :)
I didn't mention his exact PSA score when he was first diagnosed as I wasn't sure of the EXACT number, but it was about 7.6 I think, on finishing the treatment it went down to 1.9, and the next test 3 months later was 1.6.....now this one is 0.7....fabulous!

Well, it's been a while since I updated, and I have some news regarding 'our' latest PSA test results. He had the test done fairly recently (it's April '09 now)...and from the previous low score of 0.7 it had risen quite a bit to 3.6!
This, as you can imagine was a bit of a shocker, and we were both quite dismayed. However, his nurse down in Florida where he had the treatment said not to worry, that it's normal to have a "spike" now and then, in fact some guys have a spike right after the treatment and then it drops!
So after some thought, and we'd gone over all the possible factors that might have made his PSA go up, ie. diet, medication, lifestyle etc. We came up with the following, prior to taking another repeat blood test:

a) He had been drinking Acai juice and taking green tea supplements (the latter of which I don't think would hurt him but anyway...), so he cut them out for now.

b) He had used a suppository prescribed for him due to a sporadic, and small amount of rectal bleeding, which is normal.. usually months after treatment, and due to the interior 'scabbing' coming away and being shed by your body.
It wasn't much now, and so he stopped that temporarily.

c)Thirdly, he had had some sexual activity (always a positive thing!)...less than a week prior to the blood test. The nurse said you should wait three days at least, (as in abstain from sex, this means masturbation also btw!)

...and though it had been three days, I feel this was the cause for his 'spike' in PSA. I mean three days isn't long right? A week at least would've been my advice, but I'm not one of his medical team, so I guess they know best...however....that said he waited about another week, no sex, and took it again.

We waited with baited breath, and then got the call....his PSA was now 1.2...
Whew!! Well now that's way better than 3.6....but not as good as his lowest 0.7, but we'll take it!
I think it'll be lower the next time, and we will continue to think positively about the outcome. I'm sure the increase in testosterone during sexual activity had a big part to play in his increased PSA. Otherwise he feels great, is back to jogging and is eating well and living life to the fullest....what else can you do?

So men, be warned....no hanky panky at least a week before a blood test...OKAY?

Hi everyone....well, it's that time again. I have been away visiting my beloved....did I tell you we're engaged now? Then he went to Florida to see his doctor re. the latest PSA test results.
He had called his nurse, (they have one that sort of follows you through this ordeal)...and she didn't have the test results as yet. I must admit he was a bit bothered by this news as he felt she should have had them by now, and it crossed his mind that she just didn't want to tell him bad news over the phone!
He was going to call her again and press her on this, but he is the type of person who feels, "it is, what it is"....and so he decided to wait until he saw his doctor a couple of days hence.
He said he viewed the whole emotional component of this as a 'learning experience', and as such he learned to let go of the outcome, and just think positive, and if he had to deal with any bad news...well, he'd just deal with it, and go to the next step that's all!

So he waited, and went to see the doctor, had a check-up...ie. questionnaire and rectal exam. The latter might cause some extra bleeding the doc said, but so far it hasn't. His bleeding, has stopped now...and wasn't that much or that troublesome anyway.
Now for the PSA results...(drum roll please)... it was 0.8...!! Whoooo HOOOOOO! Great news, I was so happy I cried, when he phoned to tell me the result.

He is very, very happy of course. The only other side effect we are experiencing is a bit of trouble with erections...they are still there, but softer than usual.
He is naturally a bit concerned, but I told him that he IS trying to have sex every day he's with me (remember we have a long distance thing going!)...and maybe it's the frequency that's the problem now. We have to deal with the fact he isn't the same man he was, and we may have to work around these things. It may take longer, it may be less frequent, we're not sure at this point, but the good news is....he still HAS an erection (Viagra is always an option), and so far he still has emissions, though I've read they dry up? He has had no incontinence of any kind. Plus he didn't have to recover from major surgery.
I have a friend whose hubby went through the prostatectomy version of this, and they had the erection discussion together one day....she told him 'dead men don't get erections either dear'....which is a good and humourous way to look at it I think!

So, all in all, he's doing great, still feeling good, exercising, eating right, and his next check-up will be in January 2010.
I will see you then with more good news (I'm thinking positive!) I hope this is helpful, please leave me a message if you have any questions.
Bye till next time :-))

Hello everyone!
I've been remiss in updating this lens, sometimes life just gets in the way!
The latest PSA test results are in, and the good news is continuing thank Heaven! It was 0.6...this is his lowest score to date! I can't tell you how thrilled we both were, and relieved that the test scores continue to decrease.
He had taken one before this, (again sorry folks for not updating this lens sooner)....which was 0.7, so now it's gone down again. GREAT!
He's doing well, feeling completely normal, and still trying to eat right, exercise, take green tea supplements, and vitamins and all in all is grateful he was lucky enough to have the proton beam therapy.

I want to be completely honest, and so I have to mention this, although it's a tender topic, it needs to be addressed for all the men (and their wives/girlfriends out there that want to know. Although with any treatment this will likely be an issue, it's maybe just a matter of degree. Well, here goes...
The only thing that we have noticed a difference in is the quality of his erections:( Unfortunately, even though it took a year, the effects of the radiation have taken their toll, and his erections are not as firm as they were, they are still there however!
(Testosterone feeds the cancer cells, so it's a good thing in one way, but a bad thing for your sex life!)
We hope that they will continue to be there, at least in some form and are presently trying out some pharmaceutical aids! I know this is very hard on my partner, he's a man who never had to worry about getting an erection before, and now it's an effort....even that changes though, sometimes depending on the time of day etc.
Life is funny...sometimes cancer changes your perspective on what's important. Before, the ability to perform, would have been way up there on the top 10 list, but now...being alive and well is #1 on this same list!
I have to say his attitude is very positive, and he doesn't let it bother him (outwardly at least), but I know that when you are used to doing something...anything, with ease, and then all of a sudden no matter how hard you try you just can't do this thing anymore, well that's got to be a disappointment.
They say it's not the stress in your life that's important, but how you deal with that stress...and he's dealing with it as well, if not better than any man. In his mind he's chosen to believe that those nerves will regenerate if he believes it strongly enough, and well....who knows?! The mind is a powerful tool is it not? He's got nothing to lose!

The other good thing that has happened is he has had absolutely no incontinence, so those nerves were spared and that's another wonderful result I think, of using Proton Beam Therapy. Though I know there are many skilled surgeons out there who can perform the traditional prostatectomy, and use nerve-sparing techniques that do work well in this department also.

He also has given his permission to Florida Proton, to allow people to contact him with any questions, and has had a few calls from men facing prostate cancer who would like to speak to him about the proton beam therapy.
If you would like to contact him through this site, please send me a message via this lens, and he'll be more than happy to answer any questions you might have.

So that's it for now. He will go back to Florida in Jan. 2010 as I mentioned, for another full check up, and we hope things contnue to go well.

Well, we're both very happy...he has just returned from Florida where he had his latest full check up....and everything was great, no problems at all! His PSA level was....the best yet, 0.4!
He continues to feel good, exercises, eats right, and thanks God every day for his wonderful recovery. Everything else remains the same...I'll keep you posted.:0)

I have been a bit lax in the update department! Life is very busy and hectic sometimes, but that's no excuse for keeping you waiting, as I know there are probably people interested out there in how things are going.
So without further ado, I will give you the latest PSA update....drum-roll please....0.1 the best yet!
It really can't get much lower, and if it stays here we'll both be incredibly happy!
My fiance is feeling great, and is going for another routine check-up next month down in Florida. We are hopeful that he will continue to have good news, and remain healthy.
This Proton Beam Therapy has been a Godsend in so many ways, and we would highly recommend it to anyone!

PROTON NEWS...taken from the NAPTA website with permission.

Prostate Cancer Patients Top All Other Conditions Treated with Protons . . .
New Hopkins Study Says PSA Velocity Predicts Prostate Cancer Risk
The phenomenon continues among men diagnosed with prostate cancer that began with the opening in 1990 of Loma Linda University Medical Center's proton facility. Prostate patients top all other cancerous conditions treated with proton therapy between the five U.S. operating protons centers. About 8,000 men have been treated with outstanding outcomes reported in the last 17 years -including two studies by researchers at Loma Linda. A vast majority of men self-referred themselves to proton treatment centers around the country after learning about the advantages of the proton beam that minimizes serious side effects and helps to maintain a patient's quality-of-life.

Meantime, researchers at Johns Hopkins have found that PSA velocity can predict prostate cancer many years in advance when it is more curable. A new study by Hopkins and the National Institute on Aging found that an increase in PSA level of more than 0.75 ng/mL per year was an early predictor of prostate cancer in men with PSA levels between 4 and 10. PSA velocity is especially helpful in detecting early cancer in men with mildly elevated PSA levels and a normal digital rectal exam, according to the Hopkins study. It is most useful in predicting the presence of cancer when changes in PSA are elevated over at least one to two years.

.....and HERE is a link to the Canadian Prostate Cancer Network (CPCN) which will give you information on the PSA scores, how reliable they are, what they mean in accordance with your age, etc.

It would take me forever to give you all the information you need to make a decision as to whether you want to pursue Proton Beam Therapy, so I will give as many links, videos, and pictures, and anything else I can come up with, to help you make an informed choice. Please discuss it with your doctor, and educate him too if he doesn't have any information himself!

My fiance has thanked me many times for 'finding' him this treatment, because he says he probably would never have found it on his own. Being an independent thinker, he probably wouldn't have blithely gone with whatever the doctor proposed.....however, he might have chosen a treatment that would have had some dire side effects.
For me it was a no-brainer.

Apparently, it always seems to be the wives or girlfriends that search farther afield and stumble upon Proton Beam Therapy! Maybe we have a vested interest due to the high incidence of erectile dysfunction and bladder incontinence with the more traditional forms of treatment! We want our men to come out whole, not with added issues to deal with! That said, I should point out that if a man has these problems going into the treatment, he'll likely have them afterward also :)

So, that is my story...our story...and I pray it has served to give you some information and hope, that you didn't have before, and that you might need. Good luck on your journey.

FREQUENTLY ASKED QUESTIONS (Used courtesy of the NAPTA website with permission)

Q. How does proton therapy work in relation to other mainstream radiation therapy and chemotherapy?

A. Proton therapy is the most precise and advanced form of radiation treatment today. It primarily radiates the tumor site, leaving surrounding healthy tissue and organs intact. Conventional x-ray radiation often radiates healthy tissue in its path and surrounding the tumor site. Chemotherapy moves throughout the entire body, unlike radiation and surgery which are considered "site specific" treatments.

Q. What are the side effects from proton therapy?

A. Minimal to no side effects, compared to conventional forms of radiation. Much more easily tolerated than standard radiation therapy.

Q. What kinds of tumors are best treated by proton therapy?

A. Tumors that are localized and have not spread to distant areas of the body...(Note: Proton Beam is used to treat many types of tumors, all over the body, and not just in the prostate gland.)

Q. How would I know if Proton Therapy is the appropriate treatment option for myself or a loved one?

A. Do your homework. Learn as much as possible about all the treatment options available for your condition. Ask lots of questions and discuss them thoroughly with your doctors.

Q. Can proton therapy be used in conjunction with other forms of cancer treatment?

A. Yes. Depending on the case, proton therapy may be used in combination with traditional radiation, chemotherapy and/or as a follow-up to surgery.

Q. My doctor never mentioned proton therapy as a cancer treatment option? How long has proton therapy been in use for medical purposes?

A. Proton Therapy was first proposed in 1954, but primarily had been available for very limited use. There was no hospital-based treatment centers in the world until the Proton Treatment Center opened in 1990 at Loma Linda University Medical Center. Most radiation oncologists know about proton therapy, but have not had experience working with the proton technology, making it difficult for them to advise patients on this form of treatment. But the benefits of proton treatment are expanding to other regions of the USA, including the southwest, midwest, southeast, and mid-atlantic.

Q. How long does proton therapy take? How soon will I know if the treatment is successful?

A. Proton therapy can take anywhere from one day to seven weeks depending on the tumor site. The length of treatment time will also decrease over time as heavier doses begin to increase. With most cancer cases, success is determined if the cancer does not re-occur within five years after treatment.

Q. Does proton therapy cost more than conventional forms of cancer treatment? Is it covered by most insurance plans?

A. Nearly all insurance providers nationwide cover proton therapy as does the U.S. medicare program. Proton therapy costs more than conventional radiation, but generally less than surgery.

Q. Why is proton therapy so limited in its availability?

A. Proton therapy had been limited to physics research labs until 1990. And like most new technologies, building a proton center can be an expensive endeavor for most universities and academic medical centers. The newest proton facilities to start treating patients in the last two years include the University of Florida Proton Therapy Institute in Jacksonville, and the M.D. Anderson Proton Therapy Center in Houston. Both are now treating 60-80 patients daily as of 2008.

POM Blue

Ingredients:
2 oz. freshly squeezed pomegranate juice* or
POM Wonderful 100% Pomegranate Juice
6 oz. fat-free blueberry yogurt, frozen
1 cup fresh blueberries
1 cup non-fat milk
Handful of crushed ice

Directions:
1. Blend all ingredients together until desired consistency.

My partner and I found out that prostate cancer isn't like other cancers, whereby they say to you...this is going to happen, this is what the treatment is, and it's more cut and dried. With prostate cancer there are many treatments, and they pretty much leave it up to you to choose the one you want! For instance, here are some of the choices they'll give you:

• Surgery: removal of the prostate gland (prostatectomy) or removal of the testes (orchidectomy also known as castration).


• Robotic surgery: less invasive than the radical type of surgery, and less side-effects.


• Radiation therapy: X-rays or other high-energy rays are directed at the tumour and surrounding areas with the aim of reducing tumour growth and/or killing tumour cells.


• Hormonal therapy: the male sex hormone testosterone promotes the growth of many prostate cancers. Hormonal treatments such as anti-androgens or luteinizing hormone-releasing hormone (LHRH) analogues are used to block the effects of testosterone or prevent its production and thus stop or slow down the growth of cancer cells.


• Chemotherapy: medicines that interfere with cancer cell growth and division are administered.


• Cryotherapy, also called cryosurgery, cryoablation or targeted cryoablation therapy, is a minimally invasive treatment that uses extreme cold to freeze and destroy diseased tissue, including cancer cells. Although cryotherapy and cryoablation can be used interchangeably, the term "cryosurgery" is reserved best for cryotherapy performed using an open, surgical approach.



• HIFU: is a medical device piloted by a computer designed to treat localized prostate cancer using high intensity focused ultrasound (HIFU).
(Offered in Canada, Europe, and other parts of the world, but still experimental in the U.S.)


• and of course Proton Beam Therapy, which they probably won't tell you about!