another man's 2 cents on protons

[Guest guest]

I followed this group three years ago when I was first diagnosed and

dropped out after I received treatment. I recently rejoined and

noticed a great discussion about proton beam radiation therapy. I

received PBRT at Loma three years ago, actually a mix of proton

and photon as they call it in Loma . The " mix " was prescribed

because I was a high-risk patient. Proton is so precise that in

order to irradiate the surrounding at-risk tissue they substituted

some of the very stuff they dismiss as the " bad stuff " ; i.e. photons.

Given the information I had three years ago and today I made the

right choice for me. I'm 53 and do not suffer side effects from the

radiation. Some loss of potency was healed with prophylactic use of

ED medicine. I had to figure this out by my own research; it is now

becoming a common recovery protocol after surgery or radiation. I

have some narrowing of the urethra for which I might receive a

channel TURP, it might be a consequence of the radiation. I had no

rectal or urinary damage and no bleeding whatsoever. I had the ever-

popular sunburns on each hip.

Most Proton Bob members (as we're called) do a lot of research. We

are of a mindset that we have received the best there is to receive.

It's almost cult-like. We spend 9 weeks together and have the option

to participate in weekly group sessions; sharing PSA and Gleason

scores, grandkid and fishing stories, golf scores and mildly dirty

jokes in front of 100 other guys and their wives. There are scheduled

BBQs and day-trips. Many lifetime friendships are made. I made one

very good friend. I chose not to join the activities as I'm a

private person and felt comparatively young with different concerns

and worries. I traveled from the San Francisco area for nine weeks

for weekday treatments and traveled home each weekend. I took work

with me to Loma . It was my time for valuable introspection,

priority setting and re-training my dietary habits. For me, it

wasn't really a " vacation " but a passage to a healthier life.

The support structure at Loma University Medical Center

reinforces the notion that " we " are in a special club so we are prone

to believe other surgery or other radiation treatments are " lesser " .

One risk with this mindset is that we might believe we no longer have

a disease. I let this happen to me. Nobody who's been diagnosed

with cancer can accurately say they've been cured and of course this

includes the Proton Bobs. I had a rise in PSA this year, possibly

only a post-radiation PSA spike. I have seen many experts and had

many tests. There is probably not any systemic disease but I likely

have recurrent cancer, evidenced by one core of eleven in a repeat

biopsy; dx'd as " adenomcarcinoma with treatment effect " , the other

ten are " benign with treatment effect " . Before radiation I had

sixteen positive cores. There is consensus that a small part of my

prostate was under-irradiated in the Loma protocol.

You don't normally hear about recurrent cancer after PBRT because

Proton Bobs are positive and upbeat. PBRT killed nearly all cancer

in my prostate and probably any regional cancer that might have

existed. There was very little damage to my urinary tract, rectal

area and nerves. Pretty darn good. It was the best choice for me

and surgery would have been barbaric for me. Other men faced with

difficult choices regarding morbidity, mortality and quality of life

need to make their own choice and feel good about it without assault

from people who have other ideas.

I continue to access and assimilate a lot of information. I am part

of a clinical trial at the National Cancer Institute. I am receiving

a series of intra-prostastic injections intended to teach my immune

system to kill prostate cancer cells, be they local or systemic. I

might have some more radiation. For now my PSA is under .5. Along

with this novel therapy I received 6 more months of ADT. I received

4 months before my radiation.

Here are my own points to consider about having had prostate cancer

regardless of the treatment you decide to take:

1. Be prepared. Follow your progress and expect good news. Most

men remain in remission forever. Mind your health and keep educating

yourself.

2. Be flexible. You may need more treatment down the road.

Opportunities arise, protocols change, and doors open. Keep walking

down the hall and trying doorknobs.

3. Medicine costs a lot of money. It requires you to travel, give

up time from your work and play, and delay other wants and needs.

Don't waste time blaming the government or your insurance company and

don't be cheap.

4. Buy time. Hormone therapy works even though it sucks. It gives

you a lot of time to sort out your options.

5. Giving up sex is not a requirement. Go to the best doctors.

Keep trying and you will be rewarded.

Albert

[Guest guest]

Bravo Brother Albert!-

Fuller

-- In ProstateCancerSupport , " aborden65 " <wilike54-

pcgrp@...> wrote:

>

> I followed this group three years ago when I was first diagnosed

and

> dropped out after I received treatment. I recently rejoined and

> noticed a great discussion about proton beam radiation therapy. I

> received PBRT at Loma three years ago, actually a mix of

proton

> and photon as they call it in Loma . The " mix " was prescribed

> because I was a high-risk patient. Proton is so precise that in

> order to irradiate the surrounding at-risk tissue they substituted

> some of the very stuff they dismiss as the " bad stuff " ; i.e.

photons.

>

> Given the information I had three years ago and today I made the

> right choice for me. I'm 53 and do not suffer side effects from

the

> radiation. Some loss of potency was healed with prophylactic use

of

> ED medicine. I had to figure this out by my own research; it is

now

> becoming a common recovery protocol after surgery or radiation. I

> have some narrowing of the urethra for which I might receive a

> channel TURP, it might be a consequence of the radiation. I had no

> rectal or urinary damage and no bleeding whatsoever. I had the

ever-

> popular sunburns on each hip.

>

> Most Proton Bob members (as we're called) do a lot of research. We

> are of a mindset that we have received the best there is to

receive.

> It's almost cult-like. We spend 9 weeks together and have the

option

> to participate in weekly group sessions; sharing PSA and Gleason

> scores, grandkid and fishing stories, golf scores and mildly dirty

> jokes in front of 100 other guys and their wives. There are

scheduled

> BBQs and day-trips. Many lifetime friendships are made. I made

one

> very good friend. I chose not to join the activities as I'm a

> private person and felt comparatively young with different concerns

> and worries. I traveled from the San Francisco area for nine weeks

> for weekday treatments and traveled home each weekend. I took work

> with me to Loma . It was my time for valuable introspection,

> priority setting and re-training my dietary habits. For me, it

> wasn't really a " vacation " but a passage to a healthier life.

>

> The support structure at Loma University Medical Center

> reinforces the notion that " we " are in a special club so we are

prone

> to believe other surgery or other radiation treatments

are " lesser " .

> One risk with this mindset is that we might believe we no longer

have

> a disease. I let this happen to me. Nobody who's been diagnosed

> with cancer can accurately say they've been cured and of course

this

> includes the Proton Bobs. I had a rise in PSA this year, possibly

> only a post-radiation PSA spike. I have seen many experts and had

> many tests. There is probably not any systemic disease but I

likely

> have recurrent cancer, evidenced by one core of eleven in a repeat

> biopsy; dx'd as " adenomcarcinoma with treatment effect " , the other

> ten are " benign with treatment effect " . Before radiation I had

> sixteen positive cores. There is consensus that a small part of my

> prostate was under-irradiated in the Loma protocol.

>

> You don't normally hear about recurrent cancer after PBRT because

> Proton Bobs are positive and upbeat. PBRT killed nearly all cancer

> in my prostate and probably any regional cancer that might have

> existed. There was very little damage to my urinary tract, rectal

> area and nerves. Pretty darn good. It was the best choice for me

> and surgery would have been barbaric for me. Other men faced with

> difficult choices regarding morbidity, mortality and quality of

life

> need to make their own choice and feel good about it without

assault

> from people who have other ideas.

>

> I continue to access and assimilate a lot of information. I am

part

> of a clinical trial at the National Cancer Institute. I am

receiving

> a series of intra-prostastic injections intended to teach my immune

> system to kill prostate cancer cells, be they local or systemic. I

> might have some more radiation. For now my PSA is under .5. Along

> with this novel therapy I received 6 more months of ADT. I

received

> 4 months before my radiation.

>

> Here are my own points to consider about having had prostate cancer

> regardless of the treatment you decide to take:

>

> 1. Be prepared. Follow your progress and expect good news. Most

> men remain in remission forever. Mind your health and keep

educating

> yourself.

>

> 2. Be flexible. You may need more treatment down the road.

> Opportunities arise, protocols change, and doors open. Keep

walking

> down the hall and trying doorknobs.

>

> 3. Medicine costs a lot of money. It requires you to travel, give

> up time from your work and play, and delay other wants and needs.

> Don't waste time blaming the government or your insurance company

and

> don't be cheap.

>

> 4. Buy time. Hormone therapy works even though it sucks. It

gives

> you a lot of time to sort out your options.

>

> 5. Giving up sex is not a requirement. Go to the best doctors.

> Keep trying and you will be rewarded.

>

> Albert

>