Re: Husband Recently Diagnosed

[Guest guest]

Suzanne,

I agree with what Chuck has said. I would add that when you meet with your husband's urologist, or any doctor from now on, take a tape recorder with you, and take notes, otherwise you won't remember half of what you hear. When I was diagnosed I took a small digital recorder (about $45 at Radio Shack) with me to every meeting. I told the doctors I was doing it just so I could remember what they were saying and so I could review later. No one objected.

Also, read everything you can, especially on the Prostate Cancer Research Institute website.

Mike

Subject: Husband Recently DiagnosedTo: ProstateCancerSupport Date: Wednesday, October 19, 2011, 9:33 PM

My husband, , was diagnosed with prostate cancer. He has a PSA of 19.4. 6 out of 12 cores tested positive with a gleason score 7 (3+4). My husband also had a PET/CT scan and a bone scan that did not show any spread.His original urologist who is an older doctor has recommended seeds and then external beam radiation. He's seen better outcomes with this. We live near Stanford University, so we got another opinion from an urologist and a radiation oncologist up at Stanford. They both recommended the DaVinci surgery.It seems like the research seems to go towards surgery being the better option, but then I'll read something that scares me and I think radiation. In addition to all of this, on the same day my husband found out he had cancer, his mother had a stroke and she passed away last week.I think we are feeling pretty lost right now and

overwhelmed. Any suggestions would be appreciated.Thanks,Suzi------------------------------------There are just two rules for this group 1 No Spam 2 Be kind to othersPlease recognise that Prostate Cancerhas different guises and needs different levels of treatment and in some cases no treatment at all. Some men even with all options offered chose radical options that you would not choose. We only ask that people be informed before choice is made, we cannot and should not tell other members what to do, other than look at other options. Try to delete old material that is no longer applying when clicking replyTry to change the title if the content requires it

[Guest guest]

Agreed and agreed. Both gentlemen offer excellent advise.

I would add, that in my case, I chose surgery as my first option so that I could

have the other modalities as my back up plan if it became necessary. It was

understood that after radiation as my first choice, the tissue planes of the

gland would be altered making a susequent surgery much more difficult and

radical.

I am 53 years old,one year out after prostetectomy and am able to function in

all aspects. I do need a " helper " in the bedroom but have a very understanding

partner.

My best to you and yours,

Rich in Montana

[Guest guest]

Rich's posting summarizes my personal situation, my results and also my personal reasoning in selecting surgery over radiation.

 

I was age 55 at time of my diagnosis in April of 2008.  Surgery was June of 2008.  At this point, almost 3 1/2 years out from surgery, all seems to be well.  So far, no additional modalities have been needed.  That could change, based on my next PSA test, which will happen in about a month.  That is risk I will run for the rest of my days.

Everyone's situation is unique.  My choice was best for me, and is offered only anecdotally.  You folks must make your own choices, based on your situation. What is best for one may not be best for another, and there is and will always be a level of uncertainty and risk you must accept, regardless of the choices you make.  

 

It sounds like you folks have done your homework and are committed to doing your best.  All that can be added is to trust in God, make your best choice, and be at peace with your decision.       

 

Coy

, Michigan

 

 

Agreed and agreed. Both gentlemen offer excellent advise. I would add, that in my case, I chose surgery as my first option so that I could have the other modalities as my back up plan if it became necessary. It was understood that after radiation as my first choice, the tissue planes of the gland would be altered making a susequent surgery much more difficult and radical.

I am 53 years old,one year out after prostetectomy and am able to function in all aspects. I do need a " helper " in the bedroom but have a very understanding partner.My best to you and yours,Rich in Montana

--

 

G. Coy

shootingcpa@...

 

" History does not entrust the care of freedom

      to the weak or timid. "   ... Dwight D. Eisenhower

 

[Guest guest]

Suzanne --

What a combination! My heart goes out to you.

Chuck wrote:

>>>

With a Gleason Score 3+4/7 (and the removed gland could show evidence of being

higher), The choice of radiation or surgical removal is going to have to be your

husband's after checking the treatment options. It IS important that you both

attend appointments and study options since, unfortunately, with the side

effects that can accompany most any treatment option, it does become a " couple's

disease. "

<<<

I second the suggestion of a previous post -- bring a tape recorder. Neither of

you is in your " right mind " , and it will be impossible to absorb all the

information the doctors throw at you.

IMHO, with your husband's numbers (a pretty big Gleason 7 cancer), " watchful

waiting " isn't a reasonable option unless he's really old, or really sick. How

old is he, and how is his general health?

You might look at the calculators ( " nomograms " ) here:

http://nomograms.mskcc.org/prostate/

There's very good information on the USTOO website (which Chuck may have pointed

you to):

www.ustoo.org

In particular, their discussion of sexual side-effects (under " post-treatment

issues " , I think) is pretty good.

When the initial shock of diagnosis wears off, you might want to read:

" Saving Your Sex Life: A Guide to Men with Prostate Cancer " -- Dr.

Mulhall.

Some of his videos are up on the MSKCC website.

This is not a good time. We're available for support.

>

> My husband, , was diagnosed with prostate cancer. He has a PSA of 19.4.

6 out of 12 cores tested positive with a gleason score 7 (3+4). My husband also

had a PET/CT scan and a bone scan that did not show any spread.

>

> His original urologist who is an older doctor has recommended seeds and then

external beam radiation. He's seen better outcomes with this.

>

>

> We live near Stanford University, so we got another opinion from an urologist

and a radiation oncologist up at Stanford. They both recommended the DaVinci

surgery.

>

> It seems like the research seems to go towards surgery being the better

option, but then I'll read something that scares me and I think radiation.

>

> In addition to all of this, on the same day my husband found out he had

cancer, his mother had a stroke and she passed away last week.

>

> I think we are feeling pretty lost right now and overwhelmed.

>

> Any suggestions would be appreciated.

>

> Thanks,

>

> Suzi

>

[Guest guest]

Thank you Chuck and with all do respect, I would hope you would also add

information about Proton Beam Therapy. It was through this forum I found out

more information about this wonderful treatment option 2 years ago and was able

to find the right treatment option for me at Loma .

With more cancer centers adding this treatment option, (10 centers soon),

including the Mayo Clinic, it gives men another option that might be the correct

option. I chose it for quality of life issues. I wish more men and particularly

more urologists would at least inform men about this option.

The new center in San Diego is getting closer to its opening in early 2013...

http://www.healthleadersmedia.com/page-1/TEC-252805/New-Proton-Beam-Cancer-Cente\

r-Could-be-the-Nations-Ninth##

http://www.signonsandiego.com/news/2011/oct/29/proton-therapy-center-gets-crucia\

l-component/

Thanks again Chuck for all your time and effort.

>

> Hello Suzanne,

>

>

>

> In the event you missed my post to another newly diagnosed, , I will

> repeat the same as I sent him except editing slightly:

>

>

>

>

>

> No one can tell your husband what he should do; that decision is ultimately

> his. However, what we can do is provide you information to help him make a

> decision.

[Guest guest]

Thank you Chuck and with all do respect, I would hope you would also add

information about Proton Beam Therapy. It was through this forum I found out

more information about this wonderful treatment option 2 years ago and was able

to find the right treatment option for me at Loma .

With more cancer centers adding this treatment option, (10 centers soon),

including the Mayo Clinic, it gives men another option that might be the correct

option. I chose it for quality of life issues. I wish more men and particularly

more urologists would at least inform men about this option.

The new center in San Diego is getting closer to its opening in early 2013...

http://www.healthleadersmedia.com/page-1/TEC-252805/New-Proton-Beam-Cancer-Cente\

r-Could-be-the-Nations-Ninth##

http://www.signonsandiego.com/news/2011/oct/29/proton-therapy-center-gets-crucia\

l-component/

Thanks again Chuck for all your time and effort.

>

> Hello Suzanne,

>

>

>

> In the event you missed my post to another newly diagnosed, , I will

> repeat the same as I sent him except editing slightly:

>

>

>

>

>

> No one can tell your husband what he should do; that decision is ultimately

> his. However, what we can do is provide you information to help him make a

> decision.

[Guest guest]

> With a return “all due respectâ€, surferdude, Suzanne asked

> about external beam radiation, seeds, and robotic surgery. I

> provided her appropriate information in response to her

> request. I don’t usually push Proton Beam Therapy (PBT) unless

> someone asks specifically about that form of radiation

> treatment. The reason is because PBT has never been proven to

> be any more effective than IMRT/IGRT. There is a lot of

> rhetoric but absolutely no sound proof, and the Loma

> radiation oncologist have failed to respond when asked to

> provide any such proof. That being the case, and the financial

> expense of having to travel to and remain nearby a PBT facility

> for a couple months thus having to pay for lodging and food as

> well, and PBT being much more an expensive procedure, I have no

> reason to suggest to patients asking about external beam

> radiation to go to that expense (unless, as I said earlier,

> they ask specifically about PBT). In have no other axe to

> grind against PBT, and if a patient asked specifically about

> PBT I would provide information. And certainly if a patient

> lived within daily PBT treatment, I would include that form of

> radiation as an option.

I agree with Chuck on this one. I've never seen any study

showing that protons are more effective than x-rays, and haven't

even seen any claims by proton practitioners to that effect. I

did see one study once that compared side effects of proton and

x-ray treatment and found them to be about the same. I suspect

that one reason for that is that many of the side effects of

radiation, e.g., impotence, are due to damage to the prostate

itself, something that both proton and x-radiation do equally.

There is a lot of hype about different treatments. In the 8+

years that I've been following prostate cancer treatment I've

seen IMRT, robotic surgery, cryotherapy, proton beam, HIFU and

Cyberknife all gain fanatic adherents. I remember one person in

this group was told by his insurance company that they would not

pay for proton beam so he turned down the treatment his insurer

was offering and instead took a second mortgage on his house to

raise the $70,000 that Loma wanted, convinced that he was

saving his life.

For many years the only use of proton radiation was for ocular

and brain cancers where it was extremely important to insure that

the radiant energy was deposited in a narrow band. But those

cancers are relatively rare. Prostate cancer treatment is where

the dollars are and, when the hype grew over proton treatment of

prostate cancer, a number of ambitious hospital directors decided

to take the plunge and attempt to cash in. I have a suspicion

that they aren't all going to succeed in paying off the loans

they took out to build their centers.

From all that I can tell, if you choose proton beam treatment

you're making a good choice. It is effective. But I don't yet

see any reason to believe that it's a better choice than the

other good choices (surgery, IMRT, HDR and LDR brachytherapy,

Cyberknife), and it is more expensive.

Anyone who is contemplating proton beam therapy should indeed

investigate it. But one question you should ask of the proton

doctors is, Can you show me any published studies comparing the

results to other treatment modalities? Is there evidence that

it's better?

Alan

[Guest guest]

I might add, that I had read about proton therapy. However, my husband wants very traditional therapy right now. He's been considering the radiation or surgery.

I also only saw that the proton therapy was offered in Loma .

I just don't think it's something that he would consider since he can get good treatment at Stanford or UCSF, and we live in the SF Bay area.

Thanks.

[Guest guest]

> I might add, that I had read about proton therapy. However, my

> husband wants very traditional therapy right now. He's been

> considering the radiation or surgery.

>

> I also only saw that the proton therapy was offered in Loma

> .

>

> I just don't think it's something that he would consider since

> he can get good treatment at Stanford or UCSF, and we live in

> the SF Bay area.

Stanford and UCSF are both top rated cancer research hospitals.

Your husband would be fortunate to be able to get treatment at

either one of them.

Alan

[Guest guest]

Hi Suzy,        My husband just got surgery with Dr. Patel in Florida.  It went well.  He  had a GS 3/4.         A few thoughts from my research.   The idea that if you get surgery you have a better back up plan if the cancer returns than if you do radiation first is not universally accepted.   In a pamphlet put out by the Prostate Oncology Specialists group in Los Angelos (Dr. Scholtz and Dr. Lam- the pamphlet is called " The Best Treatment for Prostate Cancer " ) they say that this argument for surgery is outdated.  They claim that with new forms of radiation, return of cancer is not common, and in the rare event that cancer returns in the prostate area, cryotherapy works well.   I found in my research that just as important as having a back-up plan, is knowing what's the likelihood of recurrence and what's the success rate of the back-up plan.  I don't think the success rate of radiation after surgery is that great, but I don't have any data to back that up.  

     I've attached a May PRCI article that tries to compare success rates of different types of treatments (radiation, surgery).  I found this article helpful, but it's tricky interpreting their graphs since the different studies use different standards for measuring recurrence.  It shows that brachytherapy, if done by very skilled people, has a good success rate.   But then so does surgery.  

    I think skill is most important.   I think a doctor who's done 1000 surgeries is probably more skilled than someone who's done 300.    Dr. Patel just did his 5000th last week.   I'm sure there are very skilled radiation oncologists and surgeons in the San Francisco area.   \

    About proton therapy...... I tried and tried  to get published data about recurrence rates for proton therapy and never succeeded.  The only published paper showed a success rate somewhere in the 70% area, which is quite a bit lower than for IMRT, brachytherapy or surgery.   I find it puzzling that proton beam therapy has such strong support and yet there is no good data out there, at least that I can find. 

ChrisHere's the web page for the PCRI article:  http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is14-2_p3-11.pdf

I've attached the slides that tell the references for the different data points.  If you have trouble figuring out how to work them, let me know. 

 

I might add, that I had read about proton therapy.  However, my husband wants very traditional therapy right now. He's been considering the radiation or surgery. 

 

I also only saw that the proton therapy was offered in Loma .

 

I just don't think it's something that he would consider since he can get good treatment at Stanford or UCSF, and we live in the SF Bay area.

 

Thanks.

1 of 1 File(s)

grimm reference slides.ppt

[Guest guest]

Hi Suzi,

My husband had surgery all picked out and we had surgery booked,,,but then with further research he choose IMRT...we did want Proton Beam Radiation Therapy and it is offered at nine other locations,,we went to Boston at Mass General and spoke to the proton specialist but because my husband had a Gleason of 9 and a PSA of 7.9 the doctor suggested IMRT treatments so that the lymph nodes could be radiated also that is just in case it spread out of the prostate. My husband didn't like the idea of using a bag after surgery and having all the side effects that go along with surgery..so my husband choose IMRT treatments,,that was almost 2 years ago now,,,,because my husband had an agressive form of cancer the doctors put him on hormone therapy as soon as his numbers came back. That was aweful,,,the poor guy suffered hot flashes something aweful and the tiredness wasn't to great to handle either. But he was only kept on them for a year. He's doing well and the side effects from the hormones have past. So far he has been happy with his decision. It scared us at first because his PSA started to climbing ever so slowly,,but they have slowed down and it is currently 0.53...but we were also told his numbers may jump around for a few years after radiation before they settle down,,so we weren't to alarmed....he's doing fine,,,he was happy with IMRT for several reasons and one of them being that he wouldn't miss any work..nor wear a bag for a week,,he said he didn't want to handle that or like I said the other side effects.

I want to wish you both success with his treatment..and hope it turns out well. Everyone is different and everyone has there own personal reasons for choosing the treatment that they have. They seem all equally successful. It all depends on the individual,,,my husband first choose surgery first because all he wanted to do was get the cancer out of his body,,and when he found out that sometimes some is left behind it totally turned him off..he said why go through all that if I have to have radiation anyway. And all the specialists told us he would need radiation after their forms of treatments even surgery because of the agressiveness of his cancer. That's another big reason he choose IMRT. I wish there weren't so many forms of treatment because it can be very confussing and it would make things much more simple it there was only one. But I think the outcomes are all very simular. I'll keep you both in my thoughts and prayers.

Best of luck,

Sheila

[Guest guest]

Thanks Chuck and Alan...

As I stated, I wish more men and particularly more urologists would at least

inform men about this option, Proton Beam Therapy. I think one needs to be an

advocate for your own health, and research the many options available. As Suzi

stated in her follow up post, she only knew of Loma offering PBT. This is

what I am talking about.

I have the utmost respect for you Chuck and have read your disclaimer dozens of

times. You always state...

" I have dedicated my retirement years to

continued research and study in order to serve as an advocate for prostate

cancer awareness, and, from a activist patient's viewpoint, to help

patients, caregivers, and others interested develop an understanding of

prostate cancer, its treatment options, and the treatment of the side

effects that often accompany treatment. "

I agree with you totally and specifically with last sentence.

I chose PBT for the quality of life issues, and the possibility of fewer side

effects. I am happy with my decision and grateful to the people on this forum to

help guide me.

To Alan:

Loma has been treating Prostate cancer for over 20 years. It is true, they

were the only facility for about a decade. When I was there 2 years ago,

indigent cost of the treatment, that being paying yourself, was $38,000. There

was a couple of Canadians that were charged about $68,000 because they were not

US citizens. I was lucky in that Aetna paid all of the costs associated with my

treatment, except living arrangements.

With regard to paying off loans to build the centers, read my link. They are

building more centers...San Diego...Mayo Clinic...Tennessee...Manhattan. At a

cost of over $200 million, I think there has been a lot of research in recouping

that much money. Check out this link..

http://www.proton-therapy.org/documents/hre_insights.pdf

In closing, I don't think PBT is better, except in the quality of life issues

and side effects. I always believed I would be successful with whatever

treatment option I decided on. I wanted the least amount of side effects and I

got that with PBT. I did....I don't know if you will. But....after talking with

dozens of individuals, it looks like there are many men very happy with their

decision and very few side effects.

I always urge research and education for guys that are faced with making this

decision. Although only anecdotal, there is much value in talking with people

that have gone through this. I can only tell you my story and how grateful I am

to have made the right choice....FOR ME.

Thanks again for all you all do in this forum....sorry for the long post.

>

> > With a return “all due respectâ€, surferdude, Suzanne asked

> > about external beam radiation, seeds, and robotic surgery. I

> > provided her appropriate information in response to her

> > request. I don’t usually push Proton Beam Therapy (PBT) unless

> > someone asks specifically about that form of radiation

> > treatment. The reason is because PBT has never been proven to

> > be any more effective than IMRT/IGRT. There is a lot of

> > rhetoric but absolutely no sound proof, and the Loma

> > radiation oncologist have failed to respond when asked to

> > provide any such proof. That being the case, and the financial

> > expense of having to travel to and remain nearby a PBT facility

> > for a couple months thus having to pay for lodging and food as

> > well, and PBT being much more an expensive procedure, I have no

> > reason to suggest to patients asking about external beam

> > radiation to go to that expense (unless, as I said earlier,

> > they ask specifically about PBT). In have no other axe to

> > grind against PBT, and if a patient asked specifically about

> > PBT I would provide information. And certainly if a patient

> > lived within daily PBT treatment, I would include that form of

> > radiation as an option.

>

> I agree with Chuck on this one. I've never seen any study

> showing that protons are more effective than x-rays, and haven't

> even seen any claims by proton practitioners to that effect. I

> did see one study once that compared side effects of proton and

> x-ray treatment and found them to be about the same. I suspect

> that one reason for that is that many of the side effects of

> radiation, e.g., impotence, are due to damage to the prostate

> itself, something that both proton and x-radiation do equally.

>

> There is a lot of hype about different treatments. In the 8+

> years that I've been following prostate cancer treatment I've

> seen IMRT, robotic surgery, cryotherapy, proton beam, HIFU and

> Cyberknife all gain fanatic adherents. I remember one person in

> this group was told by his insurance company that they would not

> pay for proton beam so he turned down the treatment his insurer

> was offering and instead took a second mortgage on his house to

> raise the $70,000 that Loma wanted, convinced that he was

> saving his life.

>

> For many years the only use of proton radiation was for ocular

> and brain cancers where it was extremely important to insure that

> the radiant energy was deposited in a narrow band. But those

> cancers are relatively rare. Prostate cancer treatment is where

> the dollars are and, when the hype grew over proton treatment of

> prostate cancer, a number of ambitious hospital directors decided

> to take the plunge and attempt to cash in. I have a suspicion

> that they aren't all going to succeed in paying off the loans

> they took out to build their centers.

>

> From all that I can tell, if you choose proton beam treatment

> you're making a good choice. It is effective. But I don't yet

> see any reason to believe that it's a better choice than the

> other good choices (surgery, IMRT, HDR and LDR brachytherapy,

> Cyberknife), and it is more expensive.

>

> Anyone who is contemplating proton beam therapy should indeed

> investigate it. But one question you should ask of the proton

> doctors is, Can you show me any published studies comparing the

> results to other treatment modalities? Is there evidence that

> it's better?

>

> Alan

>

[Guest guest]

Same Here 2 Years for me I do Also still need to wear a Pad I Leak a bit at

times,

>

>

> Agreed and agreed. Both gentlemen offer excellent advise.

> I would add, that in my case, I chose surgery as my first option so that I

could have the other modalities as my back up plan if it became necessary. It

was understood that after radiation as my first choice, the tissue planes of the

gland would be altered making a susequent surgery much more difficult and

radical.

> I am 53 years old,one year out after prostetectomy and am able to function in

all aspects. I do need a " helper " in the bedroom but have a very understanding

partner.

> My best to you and yours,

> Rich in Montana

>

[Guest guest]

....

> With regard to paying off loans to build the centers, read

> my link. They are building more centers...San Diego...Mayo

> Clinic...Tennessee...Manhattan. At a cost of over $200

> million, I think there has been a lot of research in

> recouping that much money. Check out this link..

>

> http://www.proton-therapy.org/documents/hre_insights.pdf

....

For fun, I worked up the financial numbers on the New York center

described at the bottom of the article.

I assumed the $235 million investment stated in the article. If

the investors want a 7% return on their investment amortized over

10 years, the total cost comes to ~ $327 million for principal

and interest (computed using a mortgage calculator on the web.)

Corresponding amounts for 15 and 20 year amortizations are:

15 year = $380 million

20 year = $437 million

The article said that the center planned to treat 1,500 patients

per year. For the different possible amortization periods that

amounts to:

10 year:

$327M / (1,500 * 10) = $21,800 / patient

15 year:

$380M / (1,500 * 15) = $16,888 / patient

20 year:

$437M / (1,500 * 20) = $14,567 / patient

Of course the numbers change if 7% is too high or too low, or if

the center is viable for less than 10 years or more than 20. We

just don't know how long this technology will remain state of the

art.

It's a significant chunk of change per patient (as the rich guys

like to say) added on top of the ordinary costs of treatment.

And it doesn't take into account any additional operating costs

for electricity, maintenance, treatment planning, or other costs

that may be higher for protons than x-rays.

There are some theoretical advantages in side effects but, to the

best of my knowledge, no one has been able to demonstrate that

actual side effects are significantly less than the most modern

x-ray techniques for prostate cancer treatment. The Wikipedia

article on " Proton Therapy " has a good discussion of this issue.

....

> I always urge research and education for guys that are

> faced with making this decision. Although only anecdotal,

> there is much value in talking with people that have gone

> through this. I can only tell you my story and how grateful

> I am to have made the right choice....FOR ME.

Absolutely! I have never seen any published data to establish

that proton therapy is less effective or has fewer side effects

than other treatments.

Clearly, it worked out for you and the extra cost was absorbed by

your insurer. It therefore turned out to be an excellent choice

for you.

Maybe as a society however there are better places for us to be

putting health care dollars.

But I wish to emphasize again that I know of no reason other than

cost why a person should not choose proton therapy.

Alan

[Guest guest]

Thank you for the info!!

Sheila