Re: after RP, cancer in lymph nodes 4+5

[Guest guest]

allankennard wrote:

> A good friend had a radical prostatectomy in early December

> after a PSA of 10 and a biopsy revealing malignant cells in

> both lobes. The urologist removed a string of eleven lymph

> nodes during the procedure. One of the nodes had malignant

> cells and a Gleason rating of 4+5 was assigned. He has started

> hormone therapy. A bone scan is scheduled for mid-January and

> external beam radiation is scheduled for early March. He has

> been told in the past that his colitis condition may prevent

> radiation treatment or may result in a colostomy.

>

> My friend can go anywhere for treatment. He is currently being

> treated at a lesser known regional cancer center with no proton

> facility and no particular reputation in molecular imaging.

> Certain cancer centers have proton therapy facilities and

> others have strong reputations in molecular imaging. Molecular

> imaging can aid in the detection of metastatized cancer,

> reducing the volume that proton therapy, for example, would

> need to target.

>

> What is the best course for my friend? Should he seek treatment

> from a major center with proton facilities and leadership in

> fields like molecular imaging? Is proton therapy recommended

> after the prostate is removed? Does proton therapy offer an

> opportunity to avoid irradiation of the colon that could impact

> his colitis condition? How is it determined whether salvage

> proton therapy is appropriate?

>

> Thank you for any ideas!

Let me begin with the usual disclaimer. I'm not a doctor or

expert of any kind. Everything I say below is the opinion of a

layman.

It sounds like your friend has been dealt a tough hand but it

also sounds like he's gotten very aggressive treatment so far -

which is very good for a man with his high Gleason and positive

lymph nodes. So far, it sounds like the treatment and advice

he's gotten as as good as he could hope for.

It is my understanding that proton therapy is never used for

either adjuvant radiation (given along with other treatments) or

salvage radiation (given after surgery is known to have failed.)

I'm not sure why, but I have read that even the proton centers

will use garden variety x-rays to treat areas around the

prostate, only using the protons in the prostate itself. In your

friend's case, with the prostate removed, the target area is the

area around the prostate bed.

It may be that protons don't do as good a job when used for

larger area treatment, or it may be that they work okay but have

no advantages and cost a great deal more. A radiation oncologist

can probably say (in which case please let us know the answer!)

It's hard to know what the best places are for treatment. The

National Cancer Institute has a list of NCI designated cancer

treatment centers that all meet certain criteria that NCI

established. All of these hospitals do research as well as

treatment. The " NCI Designated Comprehensive Cancer Centers " are

a select list within the larger " NCI Designated Cancer Centers "

list. The full list can be found at:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

I have great respect for the NCI (I work there myself as a

computer programmer) and I haven't found any list that's better

than theirs. However there are also some excellent doctors

working at local and regional centers. I think your friend

should consider getting a consultation from one of the NCI

designated centers, but if he meets a local doctor and is more

impressed with the local person, I don't think he should

necessarily go elsewhere.

I think it's _very_ important for your friend to get the best

radiation oncologist he can find. He's got special

circumstances. The doctor will need to come up with a very

intelligent treatment plan that takes his colitis and his lymph

node reports into account. A hack who does one-size-fits-all

radiation treatments might do more harm than good.

I don't know the answers to your imaging questions. Perhaps good

imaging can help the doctors decide how close they need to go to

the areas affected by colitis. I suspect that the most advanced

imaging technologies are more likely to be found in the research

centers

As for molecular imaging, I don't know whether it has reached

the stage of practical use or whether it's still purely

experimental. I don't recall anyone posting on this or another

list that I monitor to say that they had it. I suspect that if

it's available at all, it will only be at the research hospitals,

possibly only in clinical trials.

Here's the list of research centers that NCI is currently funding

to do molecular imaging research:

http://imaging.cancer.gov/programsandresources/specializedinitiatives/ICMICp50

They are only seven of them and they're all heavy weight

institutions.

Best of luck to your friend.

Alan

[Guest guest]

Alan Meyer wrote:

> ...

> I think it's _very_ important for your friend to get the best

> radiation oncologist he can find. He's got special

> circumstances. The doctor will need to come up with a very

> intelligent treatment plan that takes his colitis and his lymph

> node reports into account. A hack who does one-size-fits-all

> radiation treatments might do more harm than good.

> ...

After posting this I thought of some more things to say about it.

There are (at least) two ways a doctor can fail to help. He can

do a poor job, or he can refuse to try.

When a patient presents with unusual circumstances, many doctors

will refuse to try. They may feel that, having little or no

experience with the problem, they don't trust themselves to do a

good job. Worse perhaps, someone who has no experience with the

problem and doesn't understand it might NOT refuse to try.

So one of the big research hospitals may be the best bet (though

I'm still not ruling out local docs, smart people are often found

in unexpected places.) It would probably also be desirable to

get as much information across to the hospital _before_ the

consultation as possible - in hopes they will refer your friend

to the best doctor for his particular problem.

I think it might be a good idea for your friend to get the most

complete copies of his medical records that he can so he can

forward copies in advance of consultations, and also bring copies

with him in case the documents never reached the person he meets.

Good luck.

Alan

[Guest guest]

Thank you very much for your thoughts and time, Alan. I will pass on your

recommendations to my friend. I will also make sure to let you and the forum

know, for everyone's benefit, what my friend and I discover about expertise in

fields such as molecular imaging.

Allan

>

> > ...

> > I think it's _very_ important for your friend to get the best

> > radiation oncologist he can find. He's got special

> > circumstances. The doctor will need to come up with a very

> > intelligent treatment plan that takes his colitis and his lymph

> > node reports into account. A hack who does one-size-fits-all

> > radiation treatments might do more harm than good.

> > ...

>

> After posting this I thought of some more things to say about it.

>

> There are (at least) two ways a doctor can fail to help. He can

> do a poor job, or he can refuse to try.

>

> When a patient presents with unusual circumstances, many doctors

> will refuse to try. They may feel that, having little or no

> experience with the problem, they don't trust themselves to do a

> good job. Worse perhaps, someone who has no experience with the

> problem and doesn't understand it might NOT refuse to try.

>

> So one of the big research hospitals may be the best bet (though

> I'm still not ruling out local docs, smart people are often found

> in unexpected places.) It would probably also be desirable to

> get as much information across to the hospital _before_ the

> consultation as possible - in hopes they will refer your friend

> to the best doctor for his particular problem.

>

> I think it might be a good idea for your friend to get the most

> complete copies of his medical records that he can so he can

> forward copies in advance of consultations, and also bring copies

> with him in case the documents never reached the person he meets.

>

> Good luck.

>

> Alan

>

[Guest guest]

A major side effect of most radiation treatment is damage to the rectal area. This is one of the reasons I avoided brachytherapy because of the risk due to my U/C. Since there is no prostate to irradiate, the question is where would the targeted areas be. The only form of radiation treatment that could be rationally considered would be proton beam treatment. Unlike other forms of radiation treatment, the depth as well as the surface can be better targeted. This special circumstance can to used to argue with the insurance carrier that the extra cost of proton beam therapy can be justified. However, consult with a top notch treatment center is well in order to determine if any form of radiation treatment makes sense.The extent of the cancer found by the surgeon must be been startling enough for the

surgeon to do as extensive of lymph node dissection greater than what would be normally be done.Louis. . . To: ProstateCancerSupport Sent: Tue, December 28, 2010 6:47:56 PMSubject: after RP, cancer in lymph nodes 4+5

A good friend had a radical prostatectomy in early December after a PSA of 10 and a biopsy revealing malignant cells in both lobes. The urologist removed a string of eleven lymph nodes during the procedure. One of the nodes had malignant cells and a Gleason rating of 4+5 was assigned. He has started hormone therapy. A bone scan is scheduled for mid-January and external beam radiation is scheduled for early March. He has been told in the past that his colitis condition may prevent radiation treatment or may result in a colostomy.

My friend can go anywhere for treatment. He is currently being treated at a lesser known regional cancer center with no proton facility and no particular reputation in molecular imaging. Certain cancer centers have proton therapy facilities and others have strong reputations in molecular imaging. Molecular imaging can aid in the detection of metastatized cancer, reducing the volume that proton therapy, for example, would need to target.

What is the best course for my friend? Should he seek treatment from a major center with proton facilities and leadership in fields like molecular imaging? Is proton therapy recommended after the prostate is removed? Does proton therapy offer an opportunity to avoid irradiation of the colon that could impact his colitis condition? How is it determined whether salvage proton therapy is appropriate?

Thank you for any ideas!

[Guest guest]

Alan,

I thought it might interest you and your readers to see the input from one of my

friend's advisors, who works at a major comprehensive cancer center, regarding

the impact of radiation on a colitis condition. This is from Thursday morning:

" I talked to one of the prostate specialists here this morning, and thought I

would pass along his suggestions, especially with respect to the colitis.

" He suggested that the most important consideration would be whether the colitis

is active right now. When he has had patients come to him for treatment that

have a history of ulcerative colitis, he gets them worked up (colonoscopy) to

see if it is active. If it is inactive, then he proceeds as if the patient did

not have colitis (as far as how much dose and how large a volume to treat). If

it is active, then that would probably affect what he would decide to treat (or

whether he would treat). He was actually not convinced (told him Gleason score

and nodal status) that radiation was absolutely necessary after surgery and

hormonal therapy. Your physicians obviously have more information, so I would

take that with a grain of salt (if you trust the doctors there, they have the

full story). However, he was extremely emphatic about being worked up for

current status of the colitis. "

I hope this is useful, Alan.

Allan

>

> > ...

> > I think it's _very_ important for your friend to get the best

> > radiation oncologist he can find. He's got special

> > circumstances. The doctor will need to come up with a very

> > intelligent treatment plan that takes his colitis and his lymph

> > node reports into account. A hack who does one-size-fits-all

> > radiation treatments might do more harm than good.

> > ...

>

> After posting this I thought of some more things to say about it.

>

> There are (at least) two ways a doctor can fail to help. He can

> do a poor job, or he can refuse to try.

>

> When a patient presents with unusual circumstances, many doctors

> will refuse to try. They may feel that, having little or no

> experience with the problem, they don't trust themselves to do a

> good job. Worse perhaps, someone who has no experience with the

> problem and doesn't understand it might NOT refuse to try.

>

> So one of the big research hospitals may be the best bet (though

> I'm still not ruling out local docs, smart people are often found

> in unexpected places.) It would probably also be desirable to

> get as much information across to the hospital _before_ the

> consultation as possible - in hopes they will refer your friend

> to the best doctor for his particular problem.

>

> I think it might be a good idea for your friend to get the most

> complete copies of his medical records that he can so he can

> forward copies in advance of consultations, and also bring copies

> with him in case the documents never reached the person he meets.

>

> Good luck.

>

> Alan

>

[Guest guest]

Louis,

Please see my reply, above, to Alan Meyer.

Allan

>

> A major side effect of most radiation treatment is damage to the rectal area.

> This is one of the reasons I avoided brachytherapy because of the risk due to

my

> U/C. Since there is no prostate to irradiate, the question is where would the

> targeted areas be. The only form of radiation treatment that could be

rationally

> considered would be proton beam treatment. Unlike other forms of radiation

> treatment, the depth as well as the surface can be better targeted. This

special

> circumstance can to used to argue with the insurance carrier that the extra

cost

> of proton beam therapy can be justified. However, consult with a top notch

> treatment center is well in order to determine if any form of radiation

> treatment makes sense.

>

> The extent of the cancer found by the surgeon must be been startling enough

for

> the surgeon to do as extensive of lymph node dissection greater than what

would

> be normally be done.

>

> Louis. . .

>

>

>

>

>

> ________________________________

>

> To: ProstateCancerSupport

> Sent: Tue, December 28, 2010 6:47:56 PM

> Subject: after RP, cancer in lymph nodes 4+5

>

>

> A good friend had a radical prostatectomy in early December after a PSA of 10

> and a biopsy revealing malignant cells in both lobes. The urologist removed a

> string of eleven lymph nodes during the procedure. One of the nodes had

> malignant cells and a Gleason rating of 4+5 was assigned. He has started

hormone

> therapy. A bone scan is scheduled for mid-January and external beam radiation

is

> scheduled for early March. He has been told in the past that his colitis

> condition may prevent radiation treatment or may result in a colostomy.

>

> My friend can go anywhere for treatment. He is currently being treated at a

> lesser known regional cancer center with no proton facility and no particular

> reputation in molecular imaging. Certain cancer centers have proton therapy

> facilities and others have strong reputations in molecular imaging. Molecular

> imaging can aid in the detection of metastatized cancer, reducing the volume

> that proton therapy, for example, would need to target.

>

> What is the best course for my friend? Should he seek treatment from a major

> center with proton facilities and leadership in fields like molecular imaging?

> Is proton therapy recommended after the prostate is removed? Does proton

therapy

> offer an opportunity to avoid irradiation of the colon that could impact his

> colitis condition? How is it determined whether salvage proton therapy is

> appropriate?

>

> Thank you for any ideas!

>