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Cancer: Prostate Message Board


Cancer: Prostate Board Index


My husband is 60 years old. After a higher than normal PSA score he was sent to a urologist for a biopsy. He got the call from the urologist last week that we needed to come in so we knew it wasn't going to be good news. I was prepared for the worst after the urologist ordered a bone scane prior to us coming in to talk to him. 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 and we don't have a lot of time to sit around figuring out options.

The urologist said "watchful waiting" was definitely not an option and he also would not recommend surgery due to the aggressive nature of the cancer. His suggestion was radiation for 8 weeks and hormone therapy for 2 years. The bone scane and MRI did not show any spread of the cancer outside of the prostate so that was the good news.

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 go...plus 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.

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?

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.

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=BlueHydrangea;4094400]
...
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]

Sorry to hear you need to get all this "education" but there is a high probability of dealing with this successfully. I'd agree that you should act relatively soon, but still think you have time to learn about and consider the various options/side effects etc.

I'm getting close to two years post my radiation treatments- and was 64 with a Gleason of 7 (3+4) and PSA of about 4. Surgery was recommended and I even scheduled a robotic procedure while I did my due diligence. While I was not initially interested in radiation, I eventually moved in that direction, with no looking back. There have been so many advances in this type of treatment over the past few years, that many (but to be fair, certainly not all) are realizing that the results can be equal to or better than surgery. (One thing that can make radiation better is being able to treat a slightly wider area, so that if there is cancer at the edge of the prostate, there can be treatment.)

Without getting too overwhelmed it is good if you can read several books and talk to people who have gone through this. I chose proton beam radiation because of its effectiveness and highly-targeted approach- and with potentially very few side effects because of its accuracy. I try not to suggest what's best for any one individual but do feel that evaluation of this is worthwhile. If you do some searching on this board, you can find other posts about proton. The single most influential thing for me was reading a book entitled "you can beat prostate cancer" by Robert Marckini. I travelled from North Carolina to Jacksonville, Florida where I sublet for 2 months while being treated. If you contact the University of Florida Proton Therapy Center (there's a good website) there's a lot of info there. It's often a waiting list situation to get seen but for aggressive cases they will make exceptions and move them to the top of the list. A closer center to you is opening soon, the Roberts Center, at the Univ of Pennsylvania-- but that's not an option since it won't be until late this year.

Depending on the characteristics, they may recommend hormone treatments following the proton radiation. During the proton treatment, there is generally no restriction on activities- lots of free time. Some continue to work remotely via computer, and others have even commuted during the treatment phase. Proton radiation is not experimental, having been around for 20 years, with thousands treated (mostly at Loma Linda, California, the initial facility (now six and more being built-- at a high cost-- a center can be in the range of $150 million due to the complexity, size, weight of the equipment).

Good luck in your searching for the best option for you and your husband- and please continue to use this board as there is a lot of helpful info. But try to question everything very critically, including my comments. Then, when you've chosen the path to take, you'll have confidence that it's the correct one for you.
Hi BlueHydrangea,

In 2005, I was diagnosed with a gleason 8 cancer, and after checking out various options, I chose a radical prostatectomy because it seemed like the logical choice to make as it offered a cure, if they could get it all.

It turned out that my margins were negative and no sign of lymph node involvment, so it sounded like maybe I might be cured.

However, after doing much research into this matter, I found out that anyone with a gleason 8 or higher cancer will almost certainly see a recurrence of the cancer at some later date. In my case, it took three years for it to return and I know of another member on this board who had his cancer return after 5 years. He was also a gleason 8. Very aggressive cancers like this can be very difficult to eradicate and unfortunately, from what I've read in my research, the prognosis for a recurring gleason 8 patient is not all that encouraging.There is a vast difference between a gleason 7 and an gleason 8 as far as survival rates and recurrences are concerned. A gleason 6 is so mildly aggressive that it is possible for a person to live for up to 15 years with no treatment. Not so with a gleason 8!

I finished 9 weeks of radiation therapy after my recurrence but I won't know whether the treatment was effective or not until next month. Radiation can have some serious side effects, but in my case I seemed to escape any real side effects. During the treatment, I felt some bowel and bladder discomfort but that seems to have passed now. As Daff mentioned, proton radiation would most likely have far less side effects than photon radiation, and that would probably be the way to go, but you should talk to a radiation oncologist as to which treatment would be most favorable in your husban's case.

There is always a chance that your husband's gleason 8 could be cured and I certainly hope that will be the result for him.

Keep your chin up and have a great day....Lionel
Getting an opinion from someone at Hopkins might be a very good idea, particularly since you would not have to travel. Hopkins is known for its surgery more than for radiation, and the urology group there probably has somewhat of a surgical bias. But they are also known for recommending against (and even declining to perform) surgery in those cases where they believe it would not be helpful. If you want to consult with a medical oncologist, rather than -- or in addition to -- a urologist, you could try Mario Eisenberger at Hopkins.
Blue Hydrangea: I was diagnosed in Nov. 1995 I had surgery on Dec. 18 1995. My gleason's grade was 3 & 5 =8. My bone scan was clear and I had no cancer in my Lymph nodes.I recovered from the surgery and was back to work in 5 weeks. Everything went well for 5 year's then my PSA started to rise. I had recurrence. Then I saw a Oncologist and he recommended radiation, I had 39 EBR treatments and the Dr. said that I should be cured after the treatments.Will in 2007 my PSA started to rise again so they started me on hormonal treatments. I started the treatments 7/3/07 and was on them till 5/30/08. My PSA has been in the 00.3 range since then. I exercise and try and eat healthy, plus I have always said that I would not die from Prostate cancer by keeping a positive attitude. It has been just about 14 year's for me so tell your husband that it is not a death sentence and keep a positive attitude. Rich
Hi Rich,

It was nice to read your post and see that you are doing well after this length of time. That was encouraging for me, since we are sort of in the same boat ( recurring gleason 8).

What was especially encouraging was the fact your psa has remained fairly constant since you stopped the hormone therapy in 5/30/08. I hope it stays that way for you!

Next month, when I find out the results from my radiation therapy, I'm hoping that I will experience the same results that you had after your radiation: a long period of remission. If not, then I will be on hormone therapy right away and that's not something I'm looking forward to. I suppose you weren't too keen about it either when you knew you had to start it.

I've been trying to keep a positive attitude about this whole thing, but my doctors have been brutally blunt with me with statistics and that doesn't help with trying to be positive. It's nice to hear from someone like yourself who has the right attitude and has no intention of letting this thing beat you! Actually, when I think about my situation, and how I would really like to develop a postive position, I often think about your situation ( from your posts ) and how long you have been exposed to this whole prostate cancer thing and how well you are doing. Hopefully some of your positive attitude will rub off on me.

Again, it was nice to read your post....Lionel
Thanks Lionel: I go in the end of November for another PSA test, I am also going to request a testosterone test. It should be in the low 20 's when you are on hormonal treatment. I know what you mean about the Dr's. My oncologist who said that that I would be cured after the radiation said that it was going to kill me after that failed. I ask him what happened to the cure. Take care and good luck. Rich
[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 go...plus 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]
I tried three times to get an appt. at with the Brady Clinic at Hopkins. I managed to get one with the Radiation Oncology group at the cancer center at Hopkins. I tried to get one with the Brady Clinic and the first time was told they wouldn't see anyone with a Gleason score of 8 or higher. The second time they said it was Gleason 9 or higher but there were no appts. until mid November. I decided to try again today and thought I'd take a chance and ask if he could see Dr. Walsh never thinking that was a possibility. Not only can he see Dr. Walsh but the appt. is in two weeks. So by the end of October it seems we'll have an idea of what he's going to do, i.e. surgery or radiation with HRT.

I'm so anxious to see something get started since I feel like every day that goes by that nothing happens the cancer is growing even more.

He saw a surgeon yesterday that his urologist recommended(I wasn't able to go)and the surgeon said it was a rather interesting and said if he did the surgery(which was recommended)he'd probably take part of the bladder also. Has anyone heard of this. Not sure why he would recommend this unless he thinks the cancer has spread to the bladder.
Seeing Walsh is a great move. If surgery makes sense, it would be hard to find anyone better. And if surgery does not make sense, he will tell you that, and will be able to give you good suggestions. (If you are considering radiation as an alternative to surgery, one thing you might ask him is for a recommendation to a radiation oncologist who you could consult with outside of JHU).
[QUOTE=medved;4100654]Seeing Walsh is a great move. If surgery makes sense, it would be hard to find anyone better. And if surgery does not make sense, he will tell you that, and will be able to give you good suggestions. (If you are considering radiation as an alternative to surgery, one thing you might ask him is for a recommendation to a radiation oncologist who you could consult with outside of JHU).[/QUOTE]

Thanks everyone for your very helpful comments and suggestions.

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.

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.

thanks again!
I suggest that you obtain a copy of Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" last published in 2007. Many of your questions are addressed in this book. Walsh is the Distinguish Service Professor of Urology at Johns Hopkins.
[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]
Regarding my suggestion to seek referral to a radiation oncologist outside of JHU, for consultation, Jim hit the nail on the head (as it seems he nearly always does). First, Walsh himself has made the suggestion to consult specialists at different institutions -- since one doc at a particular institution may be reluctant to disagree with another doc at the same institution. So I doubt he will be reluctant to refer you out, for consultation with a non-JHU radiation oncologist. Second, the reasoning makes sense -- if, hypothetically, Walsh thought that surgery in your case was the best option, a radiation oncologist at JHU might be more reluctant to disagree with that recommendation than would a leading radiation oncologist at a different institution. And it seems to me you want to encourage that sort of disagreement, so that if there are compelling arguments for different approaches, you hear the best arguments on each side. Finally, my sense (and it is just a sense, and a somewhat uneducated one at that) is that JHU is not quite as preeminent in the radiation oncology field as it is in the urologic surgery field. That does not mean it would be a bad place to go for radiation. Indeed, I am certain you could do MUCH worse. But there may be some other options to consider, depending in part on how much you want to travel. Possibilities might include MD Andersen in Texas, Datooli in Florida, RCOG in Georgia. But I would ask Walsh.

Regarding scan for lymph node involvement, you might ask Walsh about the merits of a combidex scan. This may be available only in the Netherlands (Dr. Jelle Barentsz). There has been some suggestion that this approach is most effective in detecting lymph node involvement. If you do ask Dr. Walsh about this, I would be interested in what he says - so please post.

Best wishes,

Medved
I was diagnosed with prostate cancer by biopsy the first of July this year, a Gleason score of 4+3 =7. My urologist originally sent me to a radiological oncologist (RO) to consider radiation therapy. I talked with one RO at Surburban Hospital in Bethesda, Maryland, and then followed up with another RO at The Georgetown University Hospital (they do high beam radiation called Cyberknife). After this consultation I did an extensive serach in the literature about the effects of radiation and compared it with the more aggressive intervention of surgery. What I found was that one could have surgery and then that could be followed up with radiation, if necessary. One cannot first have radiation and then surgery. I consulted Patrick Walsh at Hopkins who referred me to one of his colleagues to see about surgery, and I ultimately decided on surgery. I am 70 years old and otherwise in good health. When the pathologist's report came back after surgery, my Gleason score was 5+4 = 9; my cancer is considered aggressive, although after surgery my margins were clear and there was no migration evident into my lymph nodes or seminal vessicles; my bone scan also was clear. Despite this, my surgeon is recommending radiation, given the aggressiveness of the identified cancer. I will consult with a RO at Hopkins, but will likely have radiation treatments at Georgetown. I believe that I was fortunate to have selected surgery (robotic) otherwise, based on my biopsy, I would have been undertreated by radiation and then would have reduced my options for further treatment. Studies so far indicate that surgery followed by radiation increases one's chance of survival by 10 - 15%. I have a good deal of faith in my Johns Hopkins surgeon, a protege of Patrick Walsh and a very knowledgeable researcher as well. I also learned that cancers are often found to be more aggressive by the pathologist reviewing live tissue after surgery than what is found at the time of the biopsy.

Everyone is different; this is what I chose. Now I am hoping that my plumbing will get back to some normal state.

Hopkins
Hi Hopkins,
I also was diagnosed in July, and also recently had daVinci assisted robotic RP, so we have a little in common. It really looks like you are in the best of hands and minds and it certainly looks like you have thoroughly done your research. How long will you wait to start radiation, since you recently had your RP? Would waiting for a few PSA tests be too risky given the Gleason? There are others here who know much more than I certainly do on this subject so I will defer to them. You are certainly in a good place and you have nothing but the best doctors helping you so you can take some comfort in that. Please keep us informed on your progress to complete recovery.
john
Hopkins -- if you don't mind my asking, who did your surgery at JHU -- and why did Dr. Walsh refer you to his colleague rather than donig the surgery himself? (My guess is the reason is you wanted laproscopic/robotic, which Dr. Walsh doesn't do, so maybe he referred you to Dr. Pavlovich, Allaf or Han). But I am interested in your experience and how they decide which surgeon for which patient over there. Also, when JHU recommended a radiation oncologist, did they refer you to Suburban Hospital? I know JHU and Suburban are now affiliated in some way.
Walsh referred me to Ed Schaeffer, actually he strongly suggested him. Walsh does not do robotic surgery and Schaeffer does. Schaeffer does about 150 surgeries a year, about half of them robotic. My original urologist referred me to Suburban, this was before I was directed to JHU by my insurance carrier, and a friend, a surgeon at George Washington University Hospital, directed me to Pat Walsh. Schaeffer suggested waiting for three months before attempting radiation in order to let my body heal. I asked him if there was a problem if I waited until January and he said "no." I am now trying to set up an appointment with Ted DeWeisse, a radiological oncologist at JHU. I think that Walsh prefers to wait until there is an increase in PSA before suggesting radiation, but Schaeffer said that he is recommending a "full court press" now. I think that Schaeffer is on top of the current research, and from what I read, what he is recommending seems to increase the survival rate by a significant percentage. My reason for having radiation done at either Georgetown or Suburban is that they are each close to my house. I really don't want to drive to Baltimore for daily radiation treatments, and Schaeffer did not think that it was necessary for me to come to JHU for these.
Hopkins,
What was your tumor grade? It was good to hear that even though your Gleason score went up based on the surgery that the cancer hadn't spread. That gives me such hope. My husband is T2b.

I also appreciate all the info you've shared about Hopkins, the doctors, etc. since that's where we're going on Friday. Did you go to their multi-disciplinary prostate cancer center(part of the cancer center) or did you just make your appointments directly with the doctors?
Hopkins - Why did you decide to have Schaeffer do robotic surgery, rather than, say, have Walsh do open surgery? Was that your idea or was it Walsh's suggestion? To be clear, I am NOT suggesting, in any way at all, that I disagree with your decision. (I lack sufifcient knowledge to agree or disagree with anyone's decision, nor would I have any right to disagree). I am just interested in learning from thoughtful people who made one decision or the other why/how they made their decision. Best wishes for easy radiation and a total cure, Medved.
Dear Blue H:
My tumor grade after surgery was T3a; at the time of biopsy it was listed as T2a. I made initial contact with Hopkins on-line, by E-mail with Pat Walsh, MD.
Thanks Hopkins. We ended up going to Hopkins last Friday. We found out the Gleason score was upgraded to a 9 after being read by Hopkins pathology. Tumor grade still t2b. They have a multidisciplinary team that collectively reviewed the case. The surgeon on the team that day was Dr. Partin himself and he couldn't have been any nicer though his news wasn't so great. Sometimes they come back with alternatives for the patient, i.e. surgery or radiation. In this case, they collectively agreed that surgery was not an option. Dr. Partin said that the tables don't always tell the whole story and things like tumor size, palpability, etc. also factor into the decision. The recommendation was wide range radiation (i.e. pelvic and lymph nodes) along with hormonal therapy for two years.

My husbands prostate is very large to start with. 80gm vs. the typical 30-40 gm. The tumor is also very large already taking up 80% of one lobe and can be felt during an exam. I didn't ask them this question but I have a feeling they think it's likely to have already spread outside the prostate. Probably more likely than the figures in the Partin tables. I think that's what Dr. Partin was trying to tell us when he said the tables don't tell the whole story and goes to show you that every case is different. Even with similar Gleason scores, tumor grade, etc. there are still differences.

Overall it wasn't the best news we could have heard. The Gleason being an 8 to start with was bad enough but when they upgrade it to a 9 I was somewhat devastated. Though looking on the positive side it's a 4+5 instead of a 5+4 so it could have been worse.

Looks like he's going to opt for the radiation at Hopkins and we'll go from there. The radiation oncologist said they still plan to go for a cure but that the odds are probably 50% or slightly less. My husband has an incredibly positive attitude and I think this will help greatly. Who knows...they may come up with new therapies next month, next year, etc.

The biggest concern I have right now is the radiation and praying that it doesn't damage any other organs. The fact that they have to go wide range doesn't give me a good feeling but I know they're doing this to try to get all the cancer. It's going to be the IG/IMRT so hopefully that will decrease the likelihood of damage to other organs. What was most interesting to me is that they said it will take at least a week for their team to build a radiation plan. For some reason I thought you just went there and they started to radiate you after focusing the beam on the prostate. Shows how much we don't know.

I know there may be better places he could go for the radiation but not sure there would be any around here and I know he's not going to go anywhere else. He seems to have a great deal of confidence in Hopkins so that's what the plan is.

The radiation won't start for another four weeks or so. They said they wouldn't start until 8 weeks after his first hormone shot. They also gave him Casodex which the urologist hadn't given him when he gave him the shot.

My thoughts and prayers are with everyone on this board.
Dear BlueH:

I am going to consult with Dr. Ted DeWeese, the chairman of radiation oncology at Hopkins, on November 12, it will be interesting to hear what he says. He is widely published on the use of radiation for prostate cancer. Before opting for surgery, I consulted with Sean Collins at the Georgetown University Hospital, he is the person who does Cyberknife (high beam radiation). This is the radiation that they first insert gold fiducials in the prostate to guide the beam (since the prostate moves around during radiation). John Lynch is the person at Georgetown who would have most likely inserted the fiducials. I was impressed with Dr. Collins who spent about two hours with me explaining what they could do if I opted for radiation rather than surgery. I also had a chance to talk with an urologist from Pennsylvania about prostate cancer, just as a friendly conversation. He said that if chemo therapy was recommended, he would make sure that it was carried out over a two year period, rather than just one year, so it seems that your Hopkins physicians and my friend agree.

My prostate was not enlarged, so that is a difference between your husband and me. I find that it is not uncommon for Gleason scores to be elevated when tissue is examined by the pathologist after surgery. Did you husband have a second biopsy? I was a bit distressed when I found that my Gleason score was elevated to a nine, but like your husband I find that my attitude is very good. I got a coin from one of my brothers that I carry around with me, it says: "Cancer cannot defeat the soul, shatter hope, depress faith, destroy homes, limit humanity, kill friendships, silence courage, ruin the soul, or reduce the spirit, and it can be overcome." I trust that your husband and I will both beat the odds.
[QUOTE=hopkins;4112257]
...
I am going to consult with Dr. Ted DeWeese, the chairman of radiation oncology at Hopkins, on November 12, it will be interesting to hear what he says. He is widely published on the use of radiation for prostate cancer.
...
[/QUOTE]

It's a great idea to explore the many choices available- so when you make your selection it will be after a reasonable amount of due diligence. I was initially going to have robotic-assisted surgery about 2 years ago, but came upon proton beam radiation and did considerable investigation into that treatment alternative (it's been around since 1990, but not known too well because of limited availability, location-wise; I went to Univ of Florida Proton Therapy Institute in Jacksonville where I was successfully treated for what was a Gleason 7 at age 64).

It might be useful for you to read the book by Robert Marckini entitled "You Can Beat Prostate Cancer" prior to your consultation on Nov 12. If nothing else, you'll have more questions to ask. The newest proton center, a $150 million facility, was scheduled to open at the Univ of Pennslyvania late in 2009. It's the Roberts Center. I don't know if they are still on track with the opening date.

Proton beam treatment is highly targeted, and thousands of prostates have received this. Because of the precise targeting, there is less damage to nearby tissue. (Ted Kennedy received this form of radiation for his brain tumor at Mass General.)
[QUOTE=BlueHydrangea;4094400]My husband is 60 years old. After a higher than normal PSA score he was sent to a urologist for a biopsy. He got the call from the urologist last week that we needed to come in so we knew it wasn't going to be good news. I was prepared for the worst after the urologist ordered a bone scane prior to us coming in to talk to him. 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 and we don't have a lot of time to sit around figuring out options.

The urologist said "watchful waiting" was definitely not an option and he also would not recommend surgery due to the aggressive nature of the cancer. His suggestion was radiation for 8 weeks and hormone therapy for 2 years. The bone scane and MRI did not show any spread of the cancer outside of the prostate so that was the good news.

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 go...plus 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.

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?

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.

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]
Hi,

My dad was diagnosed with prostate cancer nearly three years ago, p.s.a. 32. He had a radical prostectomy and cancer had spread to lymph nodes. He has been on zoladex for nearly three years now and his p.s.a. has remained at 0.01. He is due to come off Zoladex early next year and then they will see how his p.s.a. goes.

So if it hasnt spread outside the prostate then the docs should operate.

Hope this helps.
[QUOTE=suzanneemma;4126142]Hi,

My dad was diagnosed with prostate cancer nearly three years ago, p.s.a. 32. He had a radical prostectomy and cancer had spread to lymph nodes. He has been on zoladex for nearly three years now and his p.s.a. has remained at 0.01. He is due to come off Zoladex early next year and then they will see how his p.s.a. goes.

So if it hasnt spread outside the prostate then the docs should operate.

hope this helps.[/QUOTE]
Had exactly the same numbers. My urologist wanted to cut because that's what they do.i am a little surprised and alot impressed that your husbad's urologist recommended radiation. There is a table called the "Partin Tables" that calculate the likelyhood of the cancer re-occuring. With those numbers it is around 70-75 %. I learned this with a lot of research and opted for radiation. I contacted the "Dattoli Clinic" in Sarasota, Fl., a recognized forerunner in radiation therapy. I have had 30 external beam radiation sessions, a seed implantation, and will return in three weeks for another 10 EBRT sessions. All the while I have been on a triple-hormone blockade program which I will continue for another 8 months. How do I feel.?? Pretty good. Bouyed up knowing I am approaching the end of the treatment. AM I CURED??? Don't know. They'll give me all that in December. They gave me a 92% chance of a cure. Pretty good odds! I hope this helps.





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