Re: Looking for advice and direction

October 28, 2009

at_the_turn wrote:

> ... The good news of

> proton therapy is fantastice but the down side is that with me

> trying to continue to find a job how can I ethically do this

> when if I get the call I would have to immediately leave and

> although they can't ask me a question about my health in an

> interview I feel I also need to be honest with a possibly

> employer. Then the fact of trying to pay for living expenses

> for possibly up to 3 months in California isn't going to be

> easy either ...

Damon,

Given your low risk cancer, all of the standard treatments have

very high success rates. In fact no treatment at all might work

for you pretty well, just getting regular PSA and rectal exams

and only seeking treatment if the cancer shows signs of growing.

If you are resolved on treatment, one relatively quick and easy

therapy is brachytherapy using permanently implanted radioactive

seeds. Success rates are very high for Gleason 6, low PSA

cancers. I doubt if proton therapy would have any advantages

either in outcome or in side effects.

With brachytherapy, you could probably get treated on a Friday

and be back at work on Monday, losing only one day of work. You

would have a sore perineum for a week or so and might want an

extra cushion on your chair (if you work sitting down), but I

think you could put in full work days. I had two HDR

brachytherapies (a different kind of radioactive seed but the

same basic physical procedure.) Each was done on a Thursday. In

both cases I was back at work on Monday doing full day's work.

This is not to say that nothing can go wrong. Nasty

complications are possible. You'll want to find a clinic that

has done a lot of brachytherapies and knows what they're doing.

You don't want someone who is going to make a mess of it. But

things can go wrong with any therapy, including proton therapy.

There are always some risks to any medical procedure.

But leaving those issues aside, do you really want to take 2+

months out of your life to go to Loma ? Do you really want

to spend the money? Do you really want to put your job search on

hold until March or April of next year? Do you really think

there will be significant advantages that justify all that?

Alan

October 28, 2009

Alan,

Excellent points and ones that I have considered at least 20 times...lol. As you know there aren't any easy answers and those answers aren't completely eliminated if things don't work out. My wife and I have had several conversations about that very point as well as many others that we have considered. As has been discussed several times in our group it would greatly help if answers and/or defining lines were more clearly drawn by the medical field to help us out a bit more but ulitimately we are left to push the final button of treatment decision.

Thanks for your answer and it is definitely a consideration.

Damon

To: ProstateCancerSupport Sent: Wed, October 28, 2009 4:39:59 PMSubject: Re: Looking for advice and direction

at_the_turn <at_the_turn@ yahoo.com> wrote:> ... The good news of> proton therapy is fantastice but the down side is that with me> trying to continue to find a job how can I ethically do this> when if I get the call I would have to immediately leave and> although they can't ask me a question about my health in an> interview I feel I also need to be honest with a possibly> employer. Then the fact of trying to pay for living expenses> for possibly up to 3 months in California isn't going to be> easy either ...Damon,Given your low risk cancer, all of the standard treatments havevery high success rates. In fact no treatment at all might workfor you pretty well, just getting regular PSA and rectal examsand only seeking treatment if the cancer

shows signs of growing.If you are resolved on treatment, one relatively quick and easytherapy is brachytherapy using permanently implanted radioactiveseeds. Success rates are very high for Gleason 6, low PSAcancers. I doubt if proton therapy would have any advantageseither in outcome or in side effects.With brachytherapy, you could probably get treated on a Fridayand be back at work on Monday, losing only one day of work. Youwould have a sore perineum for a week or so and might want anextra cushion on your chair (if you work sitting down), but Ithink you could put in full work days. I had two HDRbrachytherapies (a different kind of radioactive seed but thesame basic physical procedure.) Each was done on a Thursday. Inboth cases I was back at work on Monday doing full day's work.This is not to say that nothing can go wrong. Nastycomplications are possible. You'll want to find a

clinic thathas done a lot of brachytherapies and knows what they're doing.You don't want someone who is going to make a mess of it. Butthings can go wrong with any therapy, including proton therapy.There are always some risks to any medical procedure.But leaving those issues aside, do you really want to take 2+months out of your life to go to Loma ? Do you really wantto spend the money? Do you really want to put your job search onhold until March or April of next year? Do you really thinkthere will be significant advantages that justify all that?Alan

October 28, 2009

Damon,

The answer to all of Alans questions is " YES " . I also had to walk away from

alot of responsiblity from work and finacially burden myself for 9 weeks when I

chose proton treatment at Loma . The way I processed it was.....its an

investment. However like myself being young with PCa you have even more to

lose. However, if cured its going to be the best returns I ever received on any

investment I have ever made. If you can pull it off financially somehow get

this form of treatment. Just my thoughts.

don

>

> > ... The good news of

> > proton therapy is fantastice but the down side is that with me

> > trying to continue to find a job how can I ethically do this

> > when if I get the call I would have to immediately leave and

> > although they can't ask me a question about my health in an

> > interview I feel I also need to be honest with a possibly

> > employer. Then the fact of trying to pay for living expenses

> > for possibly up to 3 months in California isn't going to be

> > easy either ...

>

> Damon,

>

> Given your low risk cancer, all of the standard treatments have

> very high success rates. In fact no treatment at all might work

> for you pretty well, just getting regular PSA and rectal exams

> and only seeking treatment if the cancer shows signs of growing.

>

> If you are resolved on treatment, one relatively quick and easy

> therapy is brachytherapy using permanently implanted radioactive

> seeds. Success rates are very high for Gleason 6, low PSA

> cancers. I doubt if proton therapy would have any advantages

> either in outcome or in side effects.

>

> With brachytherapy, you could probably get treated on a Friday

> and be back at work on Monday, losing only one day of work. You

> would have a sore perineum for a week or so and might want an

> extra cushion on your chair (if you work sitting down), but I

> think you could put in full work days. I had two HDR

> brachytherapies (a different kind of radioactive seed but the

> same basic physical procedure.) Each was done on a Thursday. In

> both cases I was back at work on Monday doing full day's work.

>

> This is not to say that nothing can go wrong. Nasty

> complications are possible. You'll want to find a clinic that

> has done a lot of brachytherapies and knows what they're doing.

> You don't want someone who is going to make a mess of it. But

> things can go wrong with any therapy, including proton therapy.

> There are always some risks to any medical procedure.

>

> But leaving those issues aside, do you really want to take 2+

> months out of your life to go to Loma ? Do you really want

> to spend the money? Do you really want to put your job search on

> hold until March or April of next year? Do you really think

> there will be significant advantages that justify all that?

>

> Alan

>

October 28, 2009

Don M.

> The answer to all of Alans questions is " YES " . I also had to

> walk away from alot of responsiblity from work and finacially

> burden myself for 9 weeks when I chose proton treatment at Loma

> . The way I processed it was.....its an investment.

> However like myself being young with PCa you have even more to

> lose. However, if cured its going to be the best returns I

> ever received on any investment I have ever made. If you can

> pull it off financially somehow get this form of treatment.

> Just my thoughts.

Don,

I understand your sentiments, but doesn't your conclusion depend

on the assumption that proton therapy cured you but brachytherapy

would not have? How can you know that? Can you cite a study

that says proton therapy has better outcomes than brachytherapy

for low risk prostate cancer?

Here's an article that compares various treatment modalities:

http://www.ncbi.nlm.nih.gov/pubmed/17637536

The abstract includes these two sentences:

" Recent reports showed that after a certain period of

followup, the biochemical control rate was similar either

with external beam high-quality RT, brachytherapy, heavy ion

RT and surgery. Therefore, the choice of treatment should

depend on the adverse effects, quality of life, medical

costs, and the lifestyle of the patient. "

" heavy ion RT " means radiotherapy with charged particles instead

of x-rays - i.e., protons or carbon nuclei.

Alan

October 28, 2009

Alan,

I'll be honest I did read about but never considered brachytherapy during my

search for a treatment . Although, the stats are very impressive. One of my

major concerns when I was originally diagnosed was hiring a doctor who was very

skilled in there form of treatment. For example, surgery can also be very

successful. If you choose a skilled surgeon. What if you get the marginal

surgeon or he's having a bad day?? My concern would be he same with this form

of treatment (which may or may not be valid). My personal PCa was different

with a higher GS and PSA. I had to choose a form of treatment that treated my

entire prostate treated, margins and seminal vesicles which PBT does. What sold

me on PBT was the science behind proton beam radiation, success rates and the

experience of the facility. The proton doc is really semi out of the picture

once your treatment plan is made and programmed. The cyclotron does all the

work leaving less of a chance for human error.

don

>

> Don M.

>

> > The answer to all of Alans questions is " YES " . I also had to

> > walk away from alot of responsiblity from work and finacially

> > burden myself for 9 weeks when I chose proton treatment at Loma

> > . The way I processed it was.....its an investment.

> > However like myself being young with PCa you have even more to

> > lose. However, if cured its going to be the best returns I

> > ever received on any investment I have ever made. If you can

> > pull it off financially somehow get this form of treatment.

> > Just my thoughts.

>

> Don,

>

> I understand your sentiments, but doesn't your conclusion depend

> on the assumption that proton therapy cured you but brachytherapy

> would not have? How can you know that? Can you cite a study

> that says proton therapy has better outcomes than brachytherapy

> for low risk prostate cancer?

>

> Here's an article that compares various treatment modalities:

>

> http://www.ncbi.nlm.nih.gov/pubmed/17637536

>

> The abstract includes these two sentences:

>

> " Recent reports showed that after a certain period of

> followup, the biochemical control rate was similar either

> with external beam high-quality RT, brachytherapy, heavy ion

> RT and surgery. Therefore, the choice of treatment should

> depend on the adverse effects, quality of life, medical

> costs, and the lifestyle of the patient. "

>

> " heavy ion RT " means radiotherapy with charged particles instead

> of x-rays - i.e., protons or carbon nuclei.

>

> Alan

>

October 28, 2009

Don M.

>

> I'll be honest I did read about but never considered

> brachytherapy during my search for a treatment . Although, the

> stats are very impressive. One of my major concerns when I was

> originally diagnosed was hiring a doctor who was very skilled

> in there form of treatment. For example, surgery can also be

> very successful. If you choose a skilled surgeon. What if you

> get the marginal surgeon or he's having a bad day?? My concern

> would be he same with this form of treatment (which may or may

> not be valid). My personal PCa was different with a higher GS

> and PSA. I had to choose a form of treatment that treated my

> entire prostate treated, margins and seminal vesicles which PBT

> does. What sold me on PBT was the science behind proton beam

> radiation, success rates and the experience of the facility.

> The proton doc is really semi out of the picture once your

> treatment plan is made and programmed. The cyclotron does all

> the work leaving less of a chance for human error.

I think you're absolutely right about the experience, skill, and

commitment of the doctors being of paramount importance.

Personally, I believe that this is true for all forms of

radiation, as it is for surgery - although I think you're also

right that surgery (and brachytherapy too since it involves some

surgerical procedure) requires manual skill as well as

intellectual skill.

The proton docs at Loma are probably as experienced in

treating prostate cancer as anyone in the world, and I would

expect that their patients get highly professional treatment.

Hopefully, if Damon chooses something other than proton therapy,

he will also find a highly experienced and skilled team.

Alan

October 29, 2009

>

> Hello All,

>

> Just wanted to update my " story " and to ask if anyone could offer some

direction for me.

> As far as the good news...it looks like I " m going to be able to go to Loma

for Proton Therapy. From several individuals praying and supporting us it

looks like I'm going to be able to get treatment. I've been put on the " waiting

list " that is tentatively set for the week of Jan. 18th but I am on the " call "

list if there are cancellations. However I've been told that there are pages of

individuals on the call list so I really don't know what my chances are for

going early. This indeed brings a flood of emotions; relief while at the same

time asking myself, " what could happen in the three months of waiting " ? I'm

going in tomorrow to get to talk to my primary doctor and hopefully get a game

plan for what to do. If anyone could give me some " I've been there " advice it

would be appreciated. I did catch this thing in the early stages so I " m feeling

cautiously optimistic (my last PSA reading was 2.2, Gleason 6 with it being in

two of the twelve sections of my biopsy).

> Now for the direction part. Without taking up too much of the groups reading

time the last 14 months of my life has been, to put it lightly, very difficult.

Now while considering there are individuals in this group that would love to

have my cancer condition (does that even sound right???...LOL) my thoughts and

prayers are with you and your family as I am humbled from reading the courage

and character of individuals that are facing much more difficult health issues

than what I am currently going through.

> With that I would like to try and breifly explain my situation and ask for

direction. Fourteen months ago I lost my job in Dallas (was a sales and

marketing consultant who is self-employed) and packed up my car to drive back to

Kansas City where my home and wife were. On my journey up to KC I was involved

in a serious car accident in which I hydroplaned and hit a barrier at 70 mph and

then was hit from behind. Naturally my car was totaled and although luckily

didn't get seriously injured sustained several injuries and a bad concussioin.

> Unfortunately I " ve been unemployed these last 14 months with the exception

that I did work a part-time temporary position with Home Depot for 90 days and

then was released (received a very good evaluation though..lol). I have

aggressively tried to find something, anything to do but after sending out

SEVERAL resumes have still not been able to secure anything. Having a

under-graduate and graduate degree was something I always thought would get me a

job but boy oh boy was I wrong. I guess I don't have to tell everyone how bad

it really is at there but it does have me concerned.

> These last 3 months I have experienced a severe case of food poisioning and a

bad back injury when I was working around the house (I'm getting old...). Then

in late July I was diagnosed with cancer which just seemed to at the time be the

straw that broke the camel's back.

> As I said earlier I do apologize for the length of this but I do have a point

for explaining everything. My wife has been an absolute life-saver these last

14 months and I couldn't be blessed with a better bes friend and soul mate. She

has obviously been the sole financial support for our family and needless to say

with the hit we took on our retirement (as everyone did) and with everything

else we have financially been destroyed. The stress and pressur has also taken

its toll physically on my wife and it breaks my heart to want to help

financially and knowing I have to fight this cancer as well. (and yes ladies I

help out around the house on a daily basis...lol). The good news of proton

therapy is fantastice but the down side is that with me trying to continue to

find a job how can I ethically do this when if I get the call I would have to

immediately leave and although they can't ask me a question about my health in

an interview I feel I also need to be honest with a possibly employer. Then the

fact of trying to pay for living expenses for possibly up to 3 months in

California isn't going to be easy either (also facing the fact I could be

unemployed another 6 monts...3 months for waiting and around 2 1/2 months for

treatment).

> Where I would like to get direction from the group is this.... I personally

dont' want anything for Christmas but does anyone know of any organization that

I could apply for to try and do something for my wife? Our family has always

recognized the true reason for Christmas and we are in no way material driven

but she has been just a God-send for me having no money to get her anything just

disturbs me even more. I AM NOT ASKING FOR ANY FINANCIAL DONATIONS OF ANY KIND

FROM ANYONE (so please don't think I am) I'm just wanting some direction or

advice if there are organizations I could apply to that might do something like

this.

> I would also like to see if anyone could offer words of advice in areas I

could look to help with living expenses while at Loma . It troubles me to

even write this letter so once again I do apologize for its length.

> It's great to have a group like this and I appreciate all who moderate this to

make it available. Please forgive me if I have offended anyone but I am just at

a lost of what to do at present.

>

> Thanks,

>

> Damon

>

Hi Damon,

First, I'm really happy you are going to have Proton Beam Radiation Therapy. I

wish you all the best with that. I know you will be very happy with that.

Second, I am really sorry that you are going though such a rough time. I suggest

that you contact the Proton support group. They can assist you on were to get

cheap housing and food while you are having treatments. People there can help

you with that and they are very nice people in that group. I wish I could be of

more help to you. I'll keep you in my thoughts and prayers...If I think of

anything else I'll let you know. God Bless.

Sincerely,

Sheila

October 29, 2009

Damon,

When you reach the point of looking for housing in Loma the hospital will

give you a very long list. The landlords will be people with whom other patients

have rented. The least expensive option will be renting a room in someone's

home. I have no idea what the cost range might be. There is a very large network

of folks who rent exclusively to Loma patients, so I would expect a

certain level of sensitivity to your situation.

Laurel