RE: Newly diagnosed

[Guest guest]

I applaud your uro for declning to treat you. He clearly and unequivocally had your best interests. Everything that you relate from his conversation sounds true. Speak with another doctor, a radiologist, and if need be for peace of mind, a medical oncologist who has no dog in the fight. Radiation is an excellent choice for a man such as you. Modern radiation is a kind of magic.C Have recenly been dianosed. PSA 7.8 4 of 6 cores on the biopsy positive 1 of which is an 8 and the other a 7 and all on the right side of the Prostate. The left side is clear with the exception of 1 core which the Pathologist labeled "suspecious". Wife and I met with the Urologist for an hour and fifteen minutes discussing the diagnosis and possible treatments. His reccomendation is EBRT with Hormone Therapy. He feels that the Gleason 8, my age (71), and my prior TURP make this the most viable treatment for my particular case. He feels that , forme, the risk of complications, incontinence and sexual dysfunction, from surgery aren't worth it in my case. He has at my request referred us to one of the top DaVinci Robotic Surgeons in Boston for a consult. He strongly cautioned that I should query him specifically about cases he has done that were 8's, 70 years old and older, and have had TURPS. He said that the positive statistics that the surgeons quote for surgery can be misleading. The are strongly skewed by the majority of patients who are in their 40's and 50's with Gleason 5's and 6's. I need to pin him sown on cases that fit my specific case. Comments anyone? tks SteveBoston, S. Easton MA

[Guest guest]

Sheila, With your experience of the physicians in Massachusetts, are there any that stand out as artists in their specialty?  I have no names of such physicians in the entire state of Massachusetts, since no prostate cancer physicians have mentioned any as well as no patients ever extolling such expertise. Chuck Always as close as the other end of your computer to help address any prostate cancer concerns. " What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. " (Chuck) Maack - Prostate Cancer Advocate/Activist Email: maack1@... PCa Help: " Observations " http://www.theprostateadvocate.com From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of shedorman@...Sent: Saturday, January 28, 2012 5:36 AMTo: ProstateCancerSupport Subject: Newly diagnosed Hi Tks, My husband was 62 when he was diagnosed,,a PSA of 7.9 and a Gleason of 9..I have a question,,,did they put you on hormones yet? Have you looked into other forms of treatment? Such at Proton Beam Radiation at Mass. General? We live about an hour from Boston and my husband wanted surgery first,,he just wanted the cancer out of his body,,,but then after learning of the side effects he had me shop around...we saw a radiation oncologist,,,,a medical oncologist,,two different surgeons and the doctor at Mass. General,,I believe his name was Dr. Zimmerman,,I think,,it was a while ago,,That doctor said with a Gleason of 9 we should also radiate the lymph nodes as well,,he recommended IMRT treatments. My husbands urologist put him on hormones right away to shrink the prostate and to slow down the spreading,..so they put him on Zoladex. All the doctors we saw told us that my husband needed to have radiation no matter what form of treatment he chose,,so he decided on IMRT....Where you live so close to Boston you should check at Mass. General and there are also some execellent doctors at the Lahey Clinic in Burlington, MA,,,Whatever you choose be prepared for the side effects,,they all stink. Prostate cancer has changed our lives but we have adapted well and we have grown so much closer and I didn't think that was possible. I did all the research then relayed the info to Mike, my husband.I wish you the best on this journey..it's not an easy one.....now after only 4 years we are watching what looks like a reoccurance of the cancer,,so we are still on this journey. This group if full of information and it's a great place to vent too. Someone is always here for you. I will keep you in my thoughts and prayers.Best Wishes,Sheila

[Guest guest]

Steve,

If you want to see what other men of your age and with your diagnosis have done and the results of their choices, go along to my site at http://www.yananow.org/exp_data.php?desc=All You will see indexes to the 1,000 plus stories that are on the site. You might also find it useful to browse through the rest of the site which was built specifically for newly diagnosed men.

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

Read A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of steveboston6138Sent: Saturday, 28 January 2012 10:04 PMTo: ProstateCancerSupport Subject: Newly diagnosed

Have recenly been dianosed. PSA 7.8 4 of 6 cores on the biopsy positive 1 of which is an 8 and the other a 7 and all on the right side of the Prostate. The left side is clear with the exception of 1 core which the Pathologist labeled "suspecious". Wife and I met with the Urologist for an hour and fifteen minutes discussing the diagnosis and possible treatments. His reccomendation is EBRT with Hormone Therapy. He feels that the Gleason 8, my age (71), and my prior TURP make this the most viable treatment for my particular case. He feels that , forme, the risk of complications, incontinence and sexual dysfunction, from surgery aren't worth it in my case. He has at my request referred us to one of the top DaVinci Robotic Surgeons in Boston for a consult. He strongly cautioned that I should query him specifically about cases he has done that were 8's, 70 years old and older, and have had TURPS. He said that the positive statistics that the surgeons quote for surgery can be misleading. The are strongly skewed by the majority of patients who are in their 40's and 50's with Gleason 5's and 6's. I need to pin him sown on cases that fit my specific case.Comments anyone?tksSteveBoston, S. Easton MA

[Guest guest]

Good luck Sheila. Regards, T MIchael (Age 67 when diagnosed; PSA 5.7; Gleason 7 (4+3), bicalutimide 30days; lupron 7 months; proton beam therapy 28 treatments- high dose fractionated; In Dec, 2011 my PSA Less than <0.05 ng/ml 3 months post PBT while still on lupron) . Awaiting next reading in May of PSA and Testosterone when off Lupron. Hi Tks, My husband was 62 when he was diagnosed,,a PSA of 7.9 and a Gleason of 9..I have a question,,,did they put you on hormones yet? Have you looked into other forms of treatment? Such at Proton Beam Radiation at Mass. General? We live about an hour from Boston and my husband wanted surgery first,,he just wanted the cancer out of his body,,,but then after learning of the side effects he had me shop around...we saw a radiation oncologist,,,,a medical oncologist,,two different surgeons and the doctor at Mass. General,,I believe his name was Dr. Zimmerman,,I think,,it was a while ago,,That doctor said with a Gleason of 9 we should also radiate the lymph nodes as well,,he recommended IMRT treatments. My husbands urologist put him on hormones right away to shrink the prostate and to slow down the spreading,..so they put him on Zoladex. All the doctors we saw told us that my husband needed to have radiation no matter what form of treatment he chose,,so he decided on IMRT....Where you live so close to Boston you should check at Mass. General and there are also some execellent doctors at the Lahey Clinic in Burlington, MA,,,Whatever you choose be prepared for the side effects,,they all stink. Prostate cancer has changed our lives but we have adapted well and we have grown so much closer and I didn't think that was possible. I did all the research then relayed the info to Mike, my husband.I wish you the best on this journey..it's not an easy one.....now after only 4 years we are watching what looks like a reoccurance of the cancer,,so we are still on this journey. This group if full of information and it's a great place to vent too. Someone is always here for you. I will keep you in my thoughts and prayers.Best Wishes,Sheila

[Guest guest]

> Have recenly been dianosed. PSA

> 7.8 4 of 6 cores on the biopsy positive 1 of which is an 8

> and the other a 7 and all on the right side of the

> Prostate. The left side is clear with the exception of

> 1 core which the Pathologist labeled " suspecious " .

> Wife and I met with the Urologist for an hour and fifteen

> minutes discussing the diagnosis and possible

> treatments. His reccomendation is EBRT with Hormone

> Therapy. He feels that the Gleason 8, my age (71), and

> my prior TURP make this the most viable treatment for my

> particular case. He feels that , forme, the risk of

> complications, incontinence and sexual dysfunction, from

> surgery aren't worth it in my case. He has at my

> request referred us to one of the top DaVinci Robotic

> Surgeons in Boston for a consult. He strongly

> cautioned that I should query him specifically about cases

> he has done that were 8's, 70 years old and older, and have

> had TURPS. He said that the positive statistics that the

> surgeons quote for surgery can be misleading. The are

> strongly skewed by the majority of patients who are in their

> 40's and 50's with Gleason 5's and 6's. I need to pin

> him sown on cases that fit my specific case.

> Comments anyone?

>

> tks

>

> SteveBoston, S. Easton MA

Steve,

I'm sorry to hear of your diagnosis. It sounds like an

aggressive cancer. However the one good thing about it is that

your PSA of 7.8 indicates that you may have caught it early

enough for successful treatment.

As everyone else has said, I think you have been very well served

by your urologist. He put his own interests aside (some doctors

want to treat you rather than refer you to someone else, even if

it's not best for you.) He also focused in on specific problems

in your specific case that make surgery problematic for you, and

he told you what the problems were so that you could raise them

with any other surgeon who proposed to treat you.

I'm not a doctor. I'm not competent to give you medical advice.

But from my layman's point of view your urologist's

recommendations make a lot of sense to me. All of the doctor's

specific bits of advice sound right to me. Radical

prostatectomy, even when done laparoscopically, is still major

surgery. It doesn't leave a big scar on your abdomen, but it

does a lot of damage inside, just as open surgery does. If it

didn't, it wouldn't work. As we get older, it's harder to heal

from damage like that, and your prior TURP won't make it easier.

Also, even if you have no problem healing from the surgery, your

high Gleason score means that there is a good possibility that

some cancer has penetrated outside the prostate and you might

still need radiation to get it, even if you have surgery. If you

have surgery first, you'll probably have to wait at least three

months for healing before you get the radiation, and if you have

radiation first the surgery will be too complex and dangerous.

I think IMRT is a very good choice for you. I think (remember

what I think doesn't count for much) it works well. I think it

is especially useful in cases like yours that have high Gleason

cancer because it can treat the area outside of and around the

prostate, as well as the prostate itself. Even if you got proton

beam therapy, I bet the proton doctors would still want to give

you IMRT to treat the area around the prostate.

There are a variety of radiation treatments. Low dose rate

brachytherapy, high dose rate brachytherapy, " Cyberknife " , proton

beam, and IMRT. All of them are fairly effective, but in all

cases I think the radiation oncologist is going to want to use

IMRT to treat the area surrounding the prostate - no matter what

he uses in the prostate itself. So I think you need someone who

has good IMRT experience and capability.

I also agree with your doctor's recommendation of hormone therapy

to start before, continue through, and continue after radiation

therapy. Hormone therapy isn't pleasant. I had it and didn't

like it. But it's bearable. Some men have been on it for 15 or

20 years. And it improves the chances that the radiation will

work.

I don't know who the best radiation doctors are in Boston. The

National Cancer Institute recommends the cancer centers at

Harvard and MIT . I think they

would be excellent places to try, though there are probably other

very good places too.

I think you should call one of them and get a consultation as

soon as you can.

Best of luck.

Alan

[Guest guest]

>

> > Have recenly been dianosed. PSA

> > 7.8 4 of 6 cores on the biopsy positive 1 of which is an 8

> > and the other a 7 and all on the right side of the

> > Prostate. The left side is clear with the exception of

> > 1 core which the Pathologist labeled " suspecious " .

> > Wife and I met with the Urologist for an hour and fifteen

> > minutes discussing the diagnosis and possible

> > treatments. His reccomendation is EBRT with Hormone

> > Therapy. He feels that the Gleason 8, my age (71), and

> > my prior TURP make this the most viable treatment for my

> > particular case. He feels that , forme, the risk of

> > complications, incontinence and sexual dysfunction, from

> > surgery aren't worth it in my case. He has at my

> > request referred us to one of the top DaVinci Robotic

> > Surgeons in Boston for a consult. He strongly

> > cautioned that I should query him specifically about cases

> > he has done that were 8's, 70 years old and older, and have

> > had TURPS. He said that the positive statistics that the

> > surgeons quote for surgery can be misleading. The are

> > strongly skewed by the majority of patients who are in their

> > 40's and 50's with Gleason 5's and 6's. I need to pin

> > him sown on cases that fit my specific case.

> > Comments anyone?

> >

> > tks

> >

> > SteveBoston, S. Easton MA

>

> Steve,

>

> I'm sorry to hear of your diagnosis. It sounds like an

> aggressive cancer. However the one good thing about it is that

> your PSA of 7.8 indicates that you may have caught it early

> enough for successful treatment.

>

> As everyone else has said, I think you have been very well served

> by your urologist. He put his own interests aside (some doctors

> want to treat you rather than refer you to someone else, even if

> it's not best for you.) He also focused in on specific problems

> in your specific case that make surgery problematic for you, and

> he told you what the problems were so that you could raise them

> with any other surgeon who proposed to treat you.

>

> I'm not a doctor. I'm not competent to give you medical advice.

> But from my layman's point of view your urologist's

> recommendations make a lot of sense to me. All of the doctor's

> specific bits of advice sound right to me. Radical

> prostatectomy, even when done laparoscopically, is still major

> surgery. It doesn't leave a big scar on your abdomen, but it

> does a lot of damage inside, just as open surgery does. If it

> didn't, it wouldn't work. As we get older, it's harder to heal

> from damage like that, and your prior TURP won't make it easier.

> Also, even if you have no problem healing from the surgery, your

> high Gleason score means that there is a good possibility that

> some cancer has penetrated outside the prostate and you might

> still need radiation to get it, even if you have surgery. If you

> have surgery first, you'll probably have to wait at least three

> months for healing before you get the radiation, and if you have

> radiation first the surgery will be too complex and dangerous.

>

> I think IMRT is a very good choice for you. I think (remember

> what I think doesn't count for much) it works well. I think it

> is especially useful in cases like yours that have high Gleason

> cancer because it can treat the area outside of and around the

> prostate, as well as the prostate itself. Even if you got proton

> beam therapy, I bet the proton doctors would still want to give

> you IMRT to treat the area around the prostate.

>

> There are a variety of radiation treatments. Low dose rate

> brachytherapy, high dose rate brachytherapy, " Cyberknife " , proton

> beam, and IMRT. All of them are fairly effective, but in all

> cases I think the radiation oncologist is going to want to use

> IMRT to treat the area surrounding the prostate - no matter what

> he uses in the prostate itself. So I think you need someone who

> has good IMRT experience and capability.

>

> I also agree with your doctor's recommendation of hormone therapy

> to start before, continue through, and continue after radiation

> therapy. Hormone therapy isn't pleasant. I had it and didn't

> like it. But it's bearable. Some men have been on it for 15 or

> 20 years. And it improves the chances that the radiation will

> work.

>

> I don't know who the best radiation doctors are in Boston. The

> National Cancer Institute recommends the cancer centers at

> Harvard and MIT . I think they

> would be excellent places to try, though there are probably other

> very good places too.

>

> I think you should call one of them and get a consultation as

> soon as you can.

>

> Best of luck.

>

> Alan

>

Thanks, Alan. I appreciate the support.

Steve