25th April 2008
[QUOTE=goody;3531548]Over the weekend we did A LOT of research. Found many studies about removing prostate even if there is node invlovement. Also found studies about radiation and nodes from Fox Chase Cancer Center which is only 20 minutes from us. We emailed Bob Marchini (wrote the book Beating Prostate CAncer) and he sent an encouraging reply.
So far we have 2 appoitments next Monday. One at out local hospital and one with Oncologist at University of Penn. Fox Chase is reviewing his records and will get back to us within 48 hours on whether to see an oncologist, radiologist or both. Today we are contacting Johns Hopkins and Loma Linda.
Thanks
Hi Cheryl,
First, it's great that your family is doing this research and getting additional opinions.
I can understand where your uncle's urologist is coming from as your uncle's case is clearly too high risk for surgery alone to be curative. As you have probably gathered by now, the Gleason of 7 with 4 in the first position (same as me) indicates moderately high aggressiveness. Do you know how many biopsy cores were taken, how many were positive, and what the percent of cancer in the cores was? Was the Gleason determined by a pathologist who specializes in prostate cancer or by a general pathologist? There is real value in having that vital statistic reviewed by an expert. All these facts can help in decision making. The book "A Primer on Prostate Cancer - The Empowered Patient's Guide," is wonderful in quickly orienting patients who need to understand the ins and outs of their cases, staging options, and treatment options.
Starting with hormonal blockade is not a bad idea. I especially am impressed that he is using both Casodex and the hormone shots. That said, medical oncologists are usually much better at managing hormonal blockade therapy. I'm convinced that keeping up the Casodex along with the shots is highly desirable for most of us, as is adding Avodart or finasteride to achieve triple blockade. Has the doctor ordered a bone mineral density scan (different from a bone scan for cancer)? That's important for those of us on hormonal blockade. Even if the result shows fine density, blockade will probably lower it unless a bisphosphonate drug is given complemented by supplemental calcium and high quality vitamin D3. A quantitative CT bone density scan is often superior to the commonly used DEXA scan for older prostate cancer patients, particularly if arthritis is present or calcification of blood vessels. The Primer is excellent on that. Patients on blockade should be using several countermeasures to minimize common side effects; did the doctor describe them?
From what I've learned as a layman survivor with no enrolled medical education, your uncle's doctor is being too pessimistic by saying that hormonal therapy is the only option. While I think it is a reasonable option, you are on the right track in thinking that surgery plus radiation and or hormonal therapy or radiation plus hormonal therapy might be better; those options do afford a shot at a cure, whereas hormonal blockade alone is rarely curative. However, at age 68, intermittent (or continuous) hormonal blockade might be all your uncle needs to outlive the cancer, and if he were on it for a decade or two, it's likely I think that some major advances will occur that he could take advantage of.
Fox Chase has an outstanding reputation for radiation for prostate cancer - it's one of the leading centers; it's fortunate that your uncle is close to it. For radiation, my impression is that it is superior to Johns Hopkins. Johns Hopkins is, of course, outstanding for surgery, arguably the best in the world, though MSK, MD Anderson, and others could also throw their hats in the ring. However, Dr. Walsh at Johns Hopkins (who may no longer be doing surgery) and at least some other doctors there do not want to operate on patients who have already started hormonal blockade. That's because blockade fairly quickly shrinks the prostate and alters some of the usual landmarks the surgeons want to see to guide their work. You might find one at Hopkins who is fine with blockade, but it would pay to call first and ask. (I did back in 2000, and it was one of several reasons why they rejected me as a surgery candidate for my glaringly high risk case; I didn't know much back then.) Other surgeons are not only comfortable with prior blockade but prefer it because they like to deal with a smaller prostate. A few phone calls in advance could scope out the territory here.
The Mayo Clinic in Rochester, Minnesota under Dr. Horst Zincke has been a decades-long pioneer in exploring the combination of surgery plus early hormonal blockade therapy for node positive patients, achieving remarkable success. I started a thread that mentioned that on 2/4/2008, "If lymph nodes are positive."
Recently evidence has emerged that radiation can be curative for men with spread of cancer beyond the prostate. Dr. Michael Dattoli and his team published a paper on their combination of external beam radiation plus seeds for intermediate and high risk cases in the summer of last year, which Dr. Charles Myers commented on very favorably in his newsletter. The bottom line: contrary to what Dr. Myers and some other leading doctors have thought before - that spread beyond the prostate usually meant disease widely spread throughout the system, even if microscopic and too small for scans, it now appears, he wrote, that often the disease is still within the pelvis where radiation can reach it.
Additional staging to get a firm handle on the location of the cancer is important in my view. A fusion ProstaScint scan would probably be covered by insurance in view of your uncle's case characteristics. It provides an excellent view of spread in soft tissue throughout the body. A Combidex high-resolution, iron-oxide contrast superparamagnetic MRI scan is outstanding for determining spread in lymph nodes throughout the body, but the only active facility is in the Netherlands, and it is overloaded. A prostatic acid phosphatase (PAP) test can be highly revealing about the likely success of radiation, as Dr. Dattoli's 2007 paper reports. There are other staging tests that can be done.
Your uncle is near the age where surgery is likely to add more side effects and risks than benefits, but it would still be on the table as I understand it. However, I'm not sure that Dr. Zincke's patient pool included patients with his high risk features in addition to the node positive feature.
Radiation is often chosen by older men, but if your uncle has urinary or bowel problems now, the radiation would probably aggravate them. Still, it could be worth it.
These are not easy calls, but you and your family are certainly doing the right thing by doing your homework and taking charge. :)
Good luck and take care,
Jim
So far we have 2 appoitments next Monday. One at out local hospital and one with Oncologist at University of Penn. Fox Chase is reviewing his records and will get back to us within 48 hours on whether to see an oncologist, radiologist or both. Today we are contacting Johns Hopkins and Loma Linda.
Thanks
Hi Cheryl,
First, it's great that your family is doing this research and getting additional opinions.
I can understand where your uncle's urologist is coming from as your uncle's case is clearly too high risk for surgery alone to be curative. As you have probably gathered by now, the Gleason of 7 with 4 in the first position (same as me) indicates moderately high aggressiveness. Do you know how many biopsy cores were taken, how many were positive, and what the percent of cancer in the cores was? Was the Gleason determined by a pathologist who specializes in prostate cancer or by a general pathologist? There is real value in having that vital statistic reviewed by an expert. All these facts can help in decision making. The book "A Primer on Prostate Cancer - The Empowered Patient's Guide," is wonderful in quickly orienting patients who need to understand the ins and outs of their cases, staging options, and treatment options.
Starting with hormonal blockade is not a bad idea. I especially am impressed that he is using both Casodex and the hormone shots. That said, medical oncologists are usually much better at managing hormonal blockade therapy. I'm convinced that keeping up the Casodex along with the shots is highly desirable for most of us, as is adding Avodart or finasteride to achieve triple blockade. Has the doctor ordered a bone mineral density scan (different from a bone scan for cancer)? That's important for those of us on hormonal blockade. Even if the result shows fine density, blockade will probably lower it unless a bisphosphonate drug is given complemented by supplemental calcium and high quality vitamin D3. A quantitative CT bone density scan is often superior to the commonly used DEXA scan for older prostate cancer patients, particularly if arthritis is present or calcification of blood vessels. The Primer is excellent on that. Patients on blockade should be using several countermeasures to minimize common side effects; did the doctor describe them?
From what I've learned as a layman survivor with no enrolled medical education, your uncle's doctor is being too pessimistic by saying that hormonal therapy is the only option. While I think it is a reasonable option, you are on the right track in thinking that surgery plus radiation and or hormonal therapy or radiation plus hormonal therapy might be better; those options do afford a shot at a cure, whereas hormonal blockade alone is rarely curative. However, at age 68, intermittent (or continuous) hormonal blockade might be all your uncle needs to outlive the cancer, and if he were on it for a decade or two, it's likely I think that some major advances will occur that he could take advantage of.
Fox Chase has an outstanding reputation for radiation for prostate cancer - it's one of the leading centers; it's fortunate that your uncle is close to it. For radiation, my impression is that it is superior to Johns Hopkins. Johns Hopkins is, of course, outstanding for surgery, arguably the best in the world, though MSK, MD Anderson, and others could also throw their hats in the ring. However, Dr. Walsh at Johns Hopkins (who may no longer be doing surgery) and at least some other doctors there do not want to operate on patients who have already started hormonal blockade. That's because blockade fairly quickly shrinks the prostate and alters some of the usual landmarks the surgeons want to see to guide their work. You might find one at Hopkins who is fine with blockade, but it would pay to call first and ask. (I did back in 2000, and it was one of several reasons why they rejected me as a surgery candidate for my glaringly high risk case; I didn't know much back then.) Other surgeons are not only comfortable with prior blockade but prefer it because they like to deal with a smaller prostate. A few phone calls in advance could scope out the territory here.
The Mayo Clinic in Rochester, Minnesota under Dr. Horst Zincke has been a decades-long pioneer in exploring the combination of surgery plus early hormonal blockade therapy for node positive patients, achieving remarkable success. I started a thread that mentioned that on 2/4/2008, "If lymph nodes are positive."
Recently evidence has emerged that radiation can be curative for men with spread of cancer beyond the prostate. Dr. Michael Dattoli and his team published a paper on their combination of external beam radiation plus seeds for intermediate and high risk cases in the summer of last year, which Dr. Charles Myers commented on very favorably in his newsletter. The bottom line: contrary to what Dr. Myers and some other leading doctors have thought before - that spread beyond the prostate usually meant disease widely spread throughout the system, even if microscopic and too small for scans, it now appears, he wrote, that often the disease is still within the pelvis where radiation can reach it.
Additional staging to get a firm handle on the location of the cancer is important in my view. A fusion ProstaScint scan would probably be covered by insurance in view of your uncle's case characteristics. It provides an excellent view of spread in soft tissue throughout the body. A Combidex high-resolution, iron-oxide contrast superparamagnetic MRI scan is outstanding for determining spread in lymph nodes throughout the body, but the only active facility is in the Netherlands, and it is overloaded. A prostatic acid phosphatase (PAP) test can be highly revealing about the likely success of radiation, as Dr. Dattoli's 2007 paper reports. There are other staging tests that can be done.
Your uncle is near the age where surgery is likely to add more side effects and risks than benefits, but it would still be on the table as I understand it. However, I'm not sure that Dr. Zincke's patient pool included patients with his high risk features in addition to the node positive feature.
Radiation is often chosen by older men, but if your uncle has urinary or bowel problems now, the radiation would probably aggravate them. Still, it could be worth it.
These are not easy calls, but you and your family are certainly doing the right thing by doing your homework and taking charge. :)
Good luck and take care,
Jim