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Cancer: Prostate Message Board

Cancer: Prostate Board Index

[COLOR="DarkGreen"]Hello BlueHydrangea,

Welcome to the board! :wave:

I'm glad you have already had some good responses from other participants, including some who are also facing Gleason 8 prostate cancer.

I'm now in my tenth year as a survivor and am doing very well after diagnosis of a challenging case in December 1999. The one thing about my biopsy that was encouraging was that I did not have Gleason 8 cancer - mine was a Gleason 4+3=7 as revised upward by expert prostate cancer pathologist Jonathan Epstein of Johns Hopkins from 3+4=7, but I did not have some of the other advantages your husband has - a low PSA, and early stage disease, per what is known now. (My baseline/first ever PSA was 113.6, all biopsy cores were positive - most 100%, perineural invasion was noted, and the stage per Johns Hopkins was 3 with likely seminal vessicle invasion :(, but all scans - bone, CT and a ProstaScint - were negative. :D .)

I'll insert some comments in green in an excerpt of your post. Jim[/COLOR]

[QUOTE=BlueHydrangea;4094400]... We went today and I'm not sure what to think. PSA score was 4.6, Gleeson score is 8 (4+4) and stage is T2b. He said this is a very aggressive cancer

[COLOR="darkgreen"]That's correct, based solely on the Gleason Score. Do you know whether a pathologist with special expertise and experience in prostate cancer evaluated the biopsy specimens? That is very important. A rather large percentage of the time the samples are undergraded by general pathologists without special expertise in prostate cancer, but a fair amount of the time they are overgraded. [U]If an expert did not do the original work, it would be wise to have the samples reevaluated.[/U] That is done frequently, and Johns Hopkins would be an excellent choice. Getting the Gleason right is very important. I'm a now savvy layman without any enrolled medical education, but I'm passing on what experts advise.[/COLOR]

and we don't have a lot of time to sit around figuring out options.

[COLOR="darkgreen"]If the Gleason is truly 8 or higher, that's true. But you and your husband should take enough time to find out the basics and key considerations, and then take careful aim before you fire.

I strongly recommend you get two books as soon as possible. The first is an outstanding general guide to the disease: "A Primer on Prostate Cancer - The Empowered Patient's Guide," 2005 2nd edition, Dr. Stephen B. Strum and Donna Pogliano. You don't need to read it cover to cover, but if you have a question, you can most likely get it answered there or find out where to turn. It has an outstanding section on hormonal therapy, which could very likely be an approach used in your husband's therapy.

The second book is "Beating Prostate Cancer: Hormonal Therapy & Diet," Dr. Charles "Snuffy" Myers, 2006 (as I recall the year). It is also very strong on hormonal therapy and other high powered approaches for advanced disease, and it is unusually good on nutrition in support of therapy. It is very easy to read. However, the optimism that many of us have found in the book may be its best asset.[/COLOR]

The urologist said "watchful waiting" was definitely not an option

[COLOR="darkgreen"]That's an old term for a "waiting-to-get-clobbered" approach in its pure form that makes little sense to me, but even the modern and sound approach known as "active surveillance" (AS) would not now be recommended by the experts for your husband. The Gleason of 8 is certainly too risky for AS (assuming the Gleason is accurate), but even the stage at T2b is considered unpromising for AS patients. [/COLOR]

and he also would not recommend surgery due to the aggressive nature of the cancer.

[COLOR="darkgreen"]A strong consensus of experts would agree with him. I'm looking at the appropriate predictive "Partin Table" (developed at Johns Hopkins) from page C5 of my 2001 copy of the Primer. For a man like your husband with a PSA in the range 4.1 to 6, a Gleason in the range 8-10, and Clinical Stage T2b, the odds that the prostate capsule has been already penetrated ("CP" for Capsular Penetration) are 59%, and the odds that the cancer is confined within the prostate (meaning neither CP nor metatstatic spread) are only 21%. A recent study by an expert panel that compared research on outcomes for various types of treatments found discouraging results for surgery for high risk cases (a Gleason 8 makes it "high risk"), with the best long term recurrence free outcome at about 70% at about the 10 1/2 year follow-up point, but most studies appearing to range from outcomes of 25% to 55%, many clustering in the 40-50% range at around 9 to 12 years follow-up. Some other therapies look far superior for high-risk disease.[/COLOR]

His suggestion was radiation for 8 weeks and hormone therapy for 2 years.

[COLOR="darkgreen"]That strategy is often recommended for high risk disease and has a clear edge over surgery in a substantial majority of pertinent studies, per the expert panel I just mentioned. However, a combination of external beam radiation (typically an 8 week course like the one your doctor mentioned) plus radioactive seeds ("brachytherapy" technically) generally does very well in the expert panel review. However, the combination of external beam, seeds and hormonal therapy has the top three best results (all better than 90% success at followups of around 5.5, 8 and 10 years, plus three other studies all within the top third or quarter of success. There is one EBRT plus seeds study showing success of about 70%, but the follow-up is at about 13.5 years, which sure impresses me! Two of the leading radiation centers for prostate cancer in the world that have published continuing research on such combinations are the Dattoli Cancer Center in Sarasota, Florida, and the Seattle Prostate Institute. As daff noted, proton beam therapy can also be a part of such an approach, but unfortunately no studies that I know of have been published for advanced prostate cancer cases by the leading proton centers. If there are any, I would like to learn about them. (I've been searching.)[/COLOR]

The bone scane and MRI did not show any spread of the cancer outside of the prostate so that was the good news.

[COLOR="darkgreen"]Yes, it is definitely good and joyful news. I do not like to be the one to rain on that joyful parade, but you and your husband need to be aware that those scans are not that sensitive, especially the CT scan; it takes fairly large tumors to be noticeable. As I recall, it takes something as large as a pea to have a good chance of showing up on a CT, and it takes about 10% of bone involvement or more to show up on a bone scan. Still, while those scans do not prove that the cancer is still local, they are strong evidence against widespread, robust cancer. Having negative scans puts us in better prognostic categories.

You might want additional staging to assess the circumstances. A key, simple test where advanced risk is involved is the PAP blood test, standing for Prostatic Acid Phosphatase. The Primer describes it well.

Another key piece of information is the rise in PSA in the past year or so. Do you have that - PSA scores, dates, and if the tests were done at the same place? Also, ideally, does your husband know if he prepared for the tests by avoiding certain activities that can sometimes stimulate the prostate and cause artificial readings? One study indicated that "PSA velocity" of 2.0 or lower in the year before diagnosis led to about a 30% lower recurrence rate after radiation for otherwise high risk cases, and vice versa. (D'Amico, JAMA, 2005 p. 445)[/COLOR]

I wanted to get a second opinion so I called the Urology clinic at Johns Hopkins because they appear to be world renowned for the robotic surgery and felt this would be the best place to we don't live too far from Baltimore. They told me on the phone that if the Gleeson score was over 8 they wouldn't even see him but would refer him directly to medical oncology. This is why I think possibly the urologist we saw today was right about surgery not being the best option in this case.

[COLOR="darkgreen"]Boy does that bring back memories! Back in early 2000, I had decided to have surgery at Johns Hopkins and called to make arrangements. They rejected me quickly and bluntly on the phone! :( I soon learned that that was fortunate. I knew little back then.[/COLOR]

Does anyone have any experience with aggressive prostate cancer (Gleeson 8,stage t2b that they could share what options they were given for treatment. If surgery was an option what were the downsides to this?

[COLOR="darkgreen"]We've mentioned surgery, radiation and hormonal therapy, but add cryosurgery to the list. It can be quite effective for high risk cases [I][U]provided[/U][/I]the cancer has not spread more than a short distance (like a couple of millimeters as I understand it) beyond the prostate.[/COLOR]

Also would be interested in the probability of "cure". The urologist told us today that it's around 80%. By this does he mean after 5 years the odds of recurrence? I was so nervous I didn't even ask him this but now am sorry I didn't.

[COLOR="darkgreen"]I'm looking at a graph of study results showing success in avoiding recurrence (defined by PSA level and change) for high risk cases from the expert panel review. There are four studies involving the EBRT plus hormonal therapy that your doctor is suggesting. The two best results, both at right about 70%, are at about the 5.5 and 8 year follow-up points. One other is at about 63% at 8 years follow-up, and one is at about 32% with about 5.3 years follow-up. There may be other studies that did not fit within the limits of the expert panel study, and your husband's doctor may be refering to such a study with more favorable findings.[/COLOR]

thanks to anyone who responds as this is all very new to me and I could definitely use some advice from those who have already been through this.[/QUOTE]

[COLOR="darkgreen"]I believe your husband's doctor is doing his best, but he probably does not have a depth of experience with advanced cases. You probably will want to add some other doctors to the team, perhaps with one of them taking the lead.

I wish you both the best in coping with all the information and in dealing with the disease.

Take care,

Jim :wave:[/COLOR]
[COLOR="DarkGreen"]Hi again BlueHydrangea,

I'll respond in green to an excerpt of your post below. Jim[/COLOR]

[QUOTE=BlueHydrangea;4101137]Thanks everyone for your very helpful comments and suggestions.

[COLOR="darkgreen"]You're welcome. I'm sure I speak for all of us when I say we are happy to help. :)[/COLOR]

I have a question regarding the recommendation to ask Walsh to recommend a radiation oncologist outside of JHU. Is this because JHU isn't a good place for this? I wonder if he'd be willing to recommend outside of JHU anyway but was curious about why you suggested outside of JHU.

[COLOR="darkgreen"]I hope medved will reply as he may have some specific concern, but in general it's a good idea to get a consultation from a different practice so you won't have the later doctor holding back out of concern for his relationship with the first doctor. That is probably not a concern at Johns Hopkins. I know their prostate cancer researchers have a culture of challenging each other, led by the great researcher Don Coffey, PhD. I believe that carries over to the medical side. As for the reputation of the radiation group at Johns Hopkins, I can say that that group does not strike me as likely exclellent but not in the forefront of research or as having an [U]outstanding[/U] reputation. I'm afraid that sounds like damning with faint praise or like being overly diplomatic, but I mean the words at their face value. I suspect the group is just just not as well known as some others, certainly not as well known as the superb surgical side at Johns Hopkins, and perhaps focusing on treatment a lot more than on research.

I came close to having my own course of radiation there back in the first half of 2000, after being rejected for surgery by the Brady Urological Institute staff at Hopkins. :( (Thank goodness! Painful at the time, but wise in hindsight. :cool:) I was working with Dr. James Welch (not Walsh - must be a problem keeping the mail straight); I liked him and thought he was doing a good job for me, including frank advice that my chances of a cure were well below 50% due to my challenging case, coupled with willingness to give me a shot at a cure if I wanted it. Were it not for gaining a lot of confidence in the hormonal blockade I was on, I would have done the radiation. However, I did have one nagging concern: I wanted to be sure I was getting 3D conformal beam radiation, which was the state-of-the-art at the time, rather than just conventional radiation, and I could not get a clear answer, though I asked several times.[/COLOR]

I have another question based on some reading I've been doing. Has anyone here been tested for lymph node involvement prior to surgery? In reading one of my books it says that should be done.

[COLOR="darkgreen"]Dr. Walsh will give you an expert answer on this point, and I suspect it will be "yes" based on the high Gleason of 8 and the stage t2b, indicating substantial cancer on one side of the prostate. However, in general, sampling lymph nodes for lower risk cases has been so unfruitful that the American Urological Association recently declared that it "may not be necessary if the PSA is less than 10.0 ng/mL and the Gleason score is less than or equal to 6." That is in the AUA's "Prostate-Specific Antigen Best Practices Statement," April 2009, p. 36, and a study led by another leading prostate cancer surgeon at Johns Hopkins, Alan Partin, is one of the five studies they list as a basis. (Yet another leading Johns Hopkins surgeon, Dr. H. Ballentine Carter, was a member of the panel of 11 experts who led the work on the statement.)

On the other hand, Dr. Walsh may suggest additional staging, such as a ProstaScint scan or Fusion ProstaScint scan, an endo-rectal MRI with spectroscopy, or some other staging test.

I would like to suggest two things to do now (might have covered earlier). One would be to make sure the pathology work has been done or reviewed by an expert. Dr. Walsh's staff would probably be happy to arrange a review by expert Johns Hopkins pathologist Jonathan Epstein, or they might be able to confirm that the original pathologist was one they considered reliable.

Another would be to have a PAP test (Prostatic Acid Phosphatase), a simple blood test. The PAP level is a fairly good indicator of metastatic disease, and at a certain threshold, it suggests that radiation would likely not be successful. It also sometimes contributes additional information regarding the chances of success for surgery.

Perhaps Dr. Walsh talks about these points in the book that hopkins mentioned in the previous post.

A final point to keep in mind: Johns Hopkins traditionally has been reluctant to do surgery on patients who have high risk case characteristics, such as a Gleason of 8, feeling that other therapies probably have a better shot at success. As Bob, shs50, has noted elsewhere on the board today, some other institutions are willing to give such patients a surgical shot at a cure. In fact, the Mayo Clinic in Rochester, Minn. pioneered a surgery/hormonal therapy combination that has had remarkable success for patients who even had positive lymph nodes! :)[/COLOR]

thanks again![/QUOTE]

[COLOR="darkgreen"]Take care,

Jim :wave:[/COLOR]

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