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Old 02-21-2009, 02:31 PM   #1
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Unhappy Husband just diagnosed...

I just found this board while trying to research more info about PC.

My husband is 68. He had a Gleason score of 9 with 12 out of 12 cores positive for cancer. The cancer is Stage 2 T2cMo. His bone scan was clear.
Otherwise my husband is in good health, slightly elevated blood pressure, non smoker, active & pretty fit for age 68.

The doctor stressed to us that his cancer is very aggressive. He said he'd only had 2 other cases in 15 yrs with numbers this high. He said there is 50%chance that it has spread to the seminal vesicles & other tissues.

A Radical Retropubic Prostatectomy with Pelvic Lymphnode Disection is scheduled for March 9th the soonest date available.

We understand what we've been told but we're still reeling from this information. We are concerned about the possible spread of the cancer to bladder or bowel. Any comments welcome...

 
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Old 02-21-2009, 04:09 PM   #2
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Re: Husband just diagnosed...

Quote:
Originally Posted by prius 2008 View Post
...

My husband is 68. He had a Gleason score of 9 with 12 out of 12 cores positive for cancer. The cancer is Stage 2 T2cMo. His bone scan was clear.
Otherwise my husband is in good health, slightly elevated blood pressure, non smoker, active & pretty fit for age 68.

The doctor stressed to us that his cancer is very aggressive. He said he'd only had 2 other cases in 15 yrs with numbers this high. He said there is 50%chance that it has spread to the seminal vesicles & other tissues.

A Radical Retropubic Prostatectomy with Pelvic Lymphnode Disection is scheduled for March 9th the soonest date available.

We understand what we've been told but we're still reeling from this information. We are concerned about the possible spread of the cancer to bladder or bowel. Any comments welcome...
Hello prius 2008,

Welcome to the board , though I'm sorry you and your husband have had to seek us out.

I will have more time to respond later, but I wanted to give you a few quick comments. I too have had a very challenging case, though my Gleason was "only" a 4+3=7; all cores were positive, most 100% with perineural invasion noted, and my PSA, first ever, was 113.6. Surprisingly, scans were negative. I'm in my tenth year since diagnosis with intermittent triple hormonal blockade as my therapy - no surgery or radiation; I'm doing well and feeling fine, though I have some quite tolerable side effects.

Would you mind giving us your husband's recent PSA history - dates and scores - for the past couple of years? That is an important clue to round out the picture you have given.

You and your husband may want to get a better look at his situation before going ahead with the surgery, especially since he is near the point where the personal costs are considered to balance out benefits, especially with a highly aggressive case. There are two existing scans that can give a far better idea of what is going on beyond the immediate area of the prostate. (The ProstaScint is not normally done with low-risk cases because of the expense and low-likelihood of finding metastases.)

One has been around for many years and is known as the ProstaScint scan, or as the Fusion ProstaScint scan in its much improved form where it is linked with a CT and or PET scan. That scan can detect prostate cancer metastasis to soft tissue anywhere in the body if the tumor is larger than a fairly minimal size, though it is not so hot for metastasis to bone, where other scans are superior. Usually a much less expensive bone scan like the one your husband had is done first, because if there is spread to bone, it's obvious just from that that surgery alone is going to be inadequate and the ProstaScint's added information may not then make much of a difference in treatment decision making. I had a ProstaScint scan in early 2000, and, surprisingly, it was negative.

The other scan is quite new and not yet approved by the FDA. It is known now as Combidex, and in simplest terms, it is excellent at determining spread to lymph nodes, though apparently not to other soft tissue beyond the prostate. It is also good to excellent (not sure which) at indicating the location of prostate cancer within the prostate. Actually, samplying lymph nodes surgically gives only rough assurance, as only easy to reach nodes are sampled; in contrast, Combidex permits a scan of all nodes; it appears to be far, far superior to laparoscopic sampling. Unfortunately for Combidex, the only site I know of that is regarded as highly competent with that scan is in the Netherlands. That imaging clinic does take US patients.

Both scans are described in the outstanding book "A Primer on Prostate Cancer - The Empowered Patient's Guide, by Dr. Stephen B. Strum and Donna Pogliano. In my opinion, that book is on the absolute "MUST HAVE" list for patients with challenging cases. The second but not the first edition describes the Combidex scan (both cover ProstaScint and Fusion ProstaScint, including great color images). If I were you, I would get that book as soon as possible.

The Prostate Cancer Research Institute and the Life Extension Foundation (LEF) both have newsletters that I get, and both have recently featured great articles on the Combidex scan, with color images. (Dr. Strum, an early proponent of Combidex scanning and author of the Primer, is associated with both institutions. Incidentally, the LEF does a lot of good work in my opinion, but they hype their products to the sky often based on what I consider very preliminary animal and laboratory work. On the other hand, a lot of us think that some of their products are outstanding.) (I hope to review the articles on Combidex for the board but haven't gotten to it yet and haven't seen a review from anyone else.)

Prostate cancer's first metastatic targets are predominantly the bones and lymph nodes. Spread to the bladder and bowel are certainly possible, but are not that likely.

I strongly recommend you get some "second" (and third, fourth, etc.) opinions before going through with the surgery. That may be your and your husband's final decision, but it should be an informed one. I admire your doctor's candor in saying that he was not that familiar with challenging cases, but on the other hand, that warrants talking to some doctors used to working with challenging cases. A medical oncologist, especially one with ample experience with prostate cancer, ideally one who specializes in prostate cancer (rare), and a radiation oncologist are bases you both really need to touch.

Based on my experience as a layman whose been at this for more than nine years now, I think there's a high likelihood that you both may turn away from surgery, or at least combine it with radiation, with hormonal blockade, or both.

Finally, I recommend you get one other book: "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers. Even if your husband does not use hormonal blockade, even if he does not use some of the great diet, nutrition and supplement advice, you will both get a tremendous dose of well-based, well-supported optimism from reading that book. Incidentally, Dr. Myers is a ten year veteran of his own challenging case of prostate cancer. He is a world reknown medical oncologist who specializes in prostate cancer, and he publishes a newsletter, the Prostate Forum, that I regard as gold for patients with challenging cases. (It's also highly informative for the rest of us.)

Please feel free to ask any questions. We have participants here whose experience covers a wide range of what happens involving prostate cancer.

It's very hard to keep a positive outlook when you are reeling from news of the diagnosis, especially one that is challenging, but I hope that you will soon again find joy in life. Keep your spirits up!

Jim

Last edited by IADT3since2000; 02-21-2009 at 04:14 PM. Reason: Right after posting - comment on not doing ProstaScint for low-risk cases.

 
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Old 02-21-2009, 05:11 PM   #3
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Re: Husband just diagnosed...

Quote:
Originally Posted by IADT3since2000 View Post
Hello prius 2008,

Welcome to the board , though I'm sorry you and your husband have had to seek us out.

I will have more time to respond later, but I wanted to give you a few quick comments. I too have had a very challenging case, though my Gleason was "only" a 4+3=7; all cores were positive, most 100% with perineural invasion noted, and my PSA, first ever, was 113.6. Surprisingly, scans were negative. I'm in my tenth year since diagnosis with intermittent triple hormonal blockade as my therapy - no surgery or radiation; I'm doing well and feeling fine, though I have some quite tolerable side effects.

Would you mind giving us your husband's recent PSA history - dates and scores - for the past couple of years? That is an important clue to round out the picture you have given.

You and your husband may want to get a better look at his situation before going ahead with the surgery, especially since he is near the point where the personal costs are considered to balance out benefits, especially with a highly aggressive case. There are two existing scans that can give a far better idea of what is going on beyond the immediate area of the prostate. (The ProstaScint is not normally done with low-risk cases because of the expense and low-likelihood of finding metastases.)

One has been around for many years and is known as the ProstaScint scan, or as the Fusion ProstaScint scan in its much improved form where it is linked with a CT and or PET scan. That scan can detect prostate cancer metastasis to soft tissue anywhere in the body if the tumor is larger than a fairly minimal size, though it is not so hot for metastasis to bone, where other scans are superior. Usually a much less expensive bone scan like the one your husband had is done first, because if there is spread to bone, it's obvious just from that that surgery alone is going to be inadequate and the ProstaScint's added information may not then make much of a difference in treatment decision making. I had a ProstaScint scan in early 2000, and, surprisingly, it was negative.

The other scan is quite new and not yet approved by the FDA. It is known now as Combidex, and in simplest terms, it is excellent at determining spread to lymph nodes, though apparently not to other soft tissue beyond the prostate. It is also good to excellent (not sure which) at indicating the location of prostate cancer within the prostate. Actually, samplying lymph nodes surgically gives only rough assurance, as only easy to reach nodes are sampled; in contrast, Combidex permits a scan of all nodes; it appears to be far, far superior to laparoscopic sampling. Unfortunately for Combidex, the only site I know of that is regarded as highly competent with that scan is in the Netherlands. That imaging clinic does take US patients.

Both scans are described in the outstanding book "A Primer on Prostate Cancer - The Empowered Patient's Guide, by Dr. Stephen B. Strum and Donna Pogliano. In my opinion, that book is on the absolute "MUST HAVE" list for patients with challenging cases. The second but not the first edition describes the Combidex scan (both cover ProstaScint and Fusion ProstaScint, including great color images). If I were you, I would get that book as soon as possible.

The Prostate Cancer Research Institute and the Life Extension Foundation (LEF) both have newsletters that I get, and both have recently featured great articles on the Combidex scan, with color images. (Dr. Strum, an early proponent of Combidex scanning and author of the Primer, is associated with both institutions. Incidentally, the LEF does a lot of good work in my opinion, but they hype their products to the sky often based on what I consider very preliminary animal and laboratory work. On the other hand, a lot of us think that some of their products are outstanding.) (I hope to review the articles on Combidex for the board but haven't gotten to it yet and haven't seen a review from anyone else.)

Prostate cancer's first metastatic targets are predominantly the bones and lymph nodes. Spread to the bladder and bowel are certainly possible, but are not that likely.

I strongly recommend you get some "second" (and third, fourth, etc.) opinions before going through with the surgery. That may be your and your husband's final decision, but it should be an informed one. I admire your doctor's candor in saying that he was not that familiar with challenging cases, but on the other hand, that warrants talking to some doctors used to working with challenging cases. A medical oncologist, especially one with ample experience with prostate cancer, ideally one who specializes in prostate cancer (rare), and a radiation oncologist are bases you both really need to touch.

Based on my experience as a layman whose been at this for more than nine years now, I think there's a high likelihood that you both may turn away from surgery, or at least combine it with radiation, with hormonal blockade, or both.

Finally, I recommend you get one other book: "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers. Even if your husband does not use hormonal blockade, even if he does not use some of the great diet, nutrition and supplement advice, you will both get a tremendous dose of well-based, well-supported optimism from reading that book. Incidentally, Dr. Myers is a ten year veteran of his own challenging case of prostate cancer. He is a world reknown medical oncologist who specializes in prostate cancer, and he publishes a newsletter, the Prostate Forum, that I regard as gold for patients with challenging cases. (It's also highly informative for the rest of us.)

Please feel free to ask any questions. We have participants here whose experience covers a wide range of what happens involving prostate cancer.

It's very hard to keep a positive outlook when you are reeling from news of the diagnosis, especially one that is challenging, but I hope that you will soon again find joy in life. Keep your spirits up!

Jim
Jim-
Thank you so much for your reply and all the additional info you provided. Both my husband & I feel surgery is the right step. I should have mentioned that the doctor recommended both radiation & hormone therapy following the surgery. Of course, this would be based on lab examination of the prostate & lymph nodes after surgery. Thanks for the reassurance that the cancer is not so likely to spread to the bladder & bowel. The doctor said the clear bone scan was just huge for my husband.

Our PSA story is kind of sad. My husband had a PSA of 3.02 in 2002 and another PSA after that for which we do not have the score but it was reported to him to be "OK". In 2007 the PSA was 5.32 but the doctor at our rural med clinic never called to tell my husband the results of that test. Unfortunately my husband thought that meant everything was still "OK". In 2008 his PSA was 7.69. A different doc at the clinic recommended that he see a urologist ASAP. One & a half years passed between the 2007 test and the 2008 test. So much for early detection! We're so sorry that we lost that time but it does little good to look back.

 
Old 02-21-2009, 06:44 PM   #4
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Re: Husband just diagnosed...

Quote:
Originally Posted by prius 2008 View Post
...
The doctor stressed to us that his cancer is very aggressive. He said he'd only had 2 other cases in 15 yrs with numbers this high. He said there is 50%chance that it has spread to the seminal vesicles & other tissues.

A Radical Retropubic Prostatectomy with Pelvic Lymphnode Disection is scheduled for March 9th the soonest date available.
...
Sorry you have to be here- but there is still a very good chance that you will be able to control this. You've heard from Jim, probably the most knowledgeable person I've encountered in the time since I first joined this board in 2007- I will only add a few comments.

I just plugged in the figures on your husband in the Sloan Kettering online nomogram predictive tool, with the information you've provided. I obviously don't have the full set of data that your doctor has, but the nomogram said there was a 14% chance that the disease would have spread to the lymph nodes. That's less than the figure your doctor mentioned. Also, there was no information provided after radical prostatectomy, but there were figures that indicated radiation (and I used 80 Grey as an input) would result in a reasonably good chance of effectiveness. So I'm not sure that this means they don't recommend the surgery or if there just isn't enough info in their data base for someone with the characteristics presented.

In my case, which was a Gleason 7, I was advised to get surgery, which I scheduled. But I later changed to proton beam radiation after a lot of reading and talking with patients. I know there were some challenging cases when I was being treated (at the University of Florida Proton Therapy Institute in Jacksonville) but I don't know if this is an appropriate first level treatment or not in this case. It's a very highly targeted form of radiation and the treatment area can be widened to cover a margin a little outside the prostate too. Maybe this is something to at least check out. I'm not saying that this is the best choice, just that it might be something to look into- especially if the doctors say you need radiation following the surgery. Maybe you could skip the surgery and go directly to some very effective radiation. Just a thought. (The book that discusses proton radiation that got me started down this path is "you can beat prostate cancer" by Robert Marckini.) I know there is often a waiting time to have a consultation in Jacksonville, but in urgent situations like yours, they could very likely see your husband very soon (and you wouldn't have to change the date scheduled for surgery- you'd just be getting another opinion from some very skilled radiation oncologists).

I just checked a list of over 3,000 proton patients who provide quite a few details, including their Gleason scores prior to treatment. Most of these would have been treated at Loma Linda, California, since that center has been treating patients since 1990. I did find a number of Gleason 9's and even Gleason 10's who have been treated with proton beam radiation.

Lastly, there might be some very helpful information provided by an endorectal MRI with spectroscopy-- only done in limited places (mine at the Jacksonville branch of Mayo Clinic). Again- just an idea. I found that a lot
of what I did was not on my urologist's checklist- but things I learned through communication with others that have been through this, and of course, several books. I actually learned a lot about this by communicating via email with a patient who had begun his proton treatment in California about a month before I was about to begin mine in Florida.

 
Old 02-21-2009, 09:05 PM   #5
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Re: Husband just diagnosed...

Hi again prius 2008,

I'm inserting some comments in green to help keep them straight. That's a bummer that the doctor never called with that suspicious PSA result. I'm guessing he was a family doctor, and so many such doctors just do not know that much about prostate cancer. I've got some more comments on that below.


Quote:
Originally Posted by prius 2008 View Post
Jim-
Thank you so much for your reply and all the additional info you provided.

You're welcome, and I'm sure I speak for daff too when I say that we are glad to be able to help. Many folks have helped us, and it's good to be able to give something back. You and your husband will be able to do that some day.

Both my husband & I feel surgery is the right step. I should have mentioned that the doctor recommended both radiation & hormone therapy following the surgery.

I'm really glad to learn that the doctor wasn't counting only on surgery. A combined program could be the best choice, but I hope you both have input from radiation and medical oncology doctors before having the operation. By the way, I too was all for surgery before the excellent doctors at Johns Hopkins rejected me , quite rightly in the circumstances .

Who would be managing your husband's care, overseeing the whole show? In my opinion, a medical oncologist would probably be the best choice, especially if the surgeon has limited experience with challenging cases. I have come to a strong opinion that urologists (surgeons) just don't know enough about hormonal therapy to do what their patients really need from that part of the total program.

Unfortunately, urologists often think they know to manage hormonal therapy (and some of them do know). For instance, has the surgeon or other doctor ordered a Bone Mineral Density scan? Lower than normal bone density is epidemic among prostate cancer patients, and main forms of hormonal therapy tend to decrease bone density even further. That's a fundamental reason why I and my excellent team of urologists concluded I would be better served by a medical oncologist they knew well. While they were really not familiar with the bone density issue, despite my concern from the reading I was doing, the medical oncologist appreciated the situation immediately and prescribed a bisphosphonate drug (Fosamax) plus calcium and vitamin D3 in support even before getting BMD results, which he also ordered at once (result was osteopenia, well on the way toward osteoporosis, now better). That was back in 2000, but it is very clear that urologists as a group have been slow to pick up on this threat, which can be countered quite effectively.


Of course, this would be based on lab examination of the prostate & lymph nodes after surgery.

I hope you both have a chance to read about staging with Combidex or with Fusion ProstaScint. The problem is that sampling lymph nodes just isn't that reliable. The danger is that the sampled nodes might be negative, prompting a decision to dispense with radiation and hormonal followup, when cancer actually exists in other, harder-to-reach, unsampled nodes. The article on Combidex in the LEF magazine (March 2009) says that "30-40% of [positive] nodes can be missed by surgical exploration itself. Up to a decade or so ago, node sampling was about all we had to work with, but that has radically changed. In one study, Combidex had a negative predictive value of 96%. That means there is only a 4% chance of missing a positive node if the Combidex report is negative.

Thanks for the reassurance that the cancer is not so likely to spread to the bladder & bowel.

I remember being glad when I learned that myself.

The doctor said the clear bone scan was just huge for my husband.

It really is huge, based on what I have learned. I remember how happy and surprised I was when I learned my bone scan was negative. Since your husband has a challenging case, however, it is worth knowing that bone scans only detect cancer when 10% or more of the bone is involved. They are not perfect. However, you are fully entitled to enjoy the rights and benefits of a negative scan for predicting success. Even if the scan missed small pockets of cancer, it still has documented that there are no large pockets. That matters!

As daff suggested, an endo-rectal MRI, especially with spectroscopy, could also be a big help in picking the best approach. I did not think of that because that is more for the local picture and I was thinking of farther off mets.


Our PSA story is kind of sad. My husband had a PSA of 3.02 in 2002 and another PSA after that for which we do not have the score but it was reported to him to be "OK". In 2007 the PSA was 5.32 but the doctor at our rural med clinic never called to tell my husband the results of that test. Unfortunately my husband thought that meant everything was still "OK". In 2008 his PSA was 7.69. A different doc at the clinic recommended that he see a urologist ASAP. One & a half years passed between the 2007 test and the 2008 test. So much for early detection! We're so sorry that we lost that time but it does little good to look back.
My own story was nearly a lot like that. I had a routine physical in December 1999, and, despite my father's death from prostate cancer noted on my history form, and despite the fact that I was 56 years old, the doctor said he did not feel I needed a PSA test when I asked about it (my first ever). Fortunately, I insisted. Was he ever embarrassed when the report came back at 113.6 a few days later!

But it is so fortunate that your husband was tested then, even if it was not reported. That's because you now have a good idea of the rate of increase for the year before diagnosis, and that gives you vital forewarning so you can adjust the strategy. Unfortunately, that increase for your husband is greater than 2.0 , and a team led by the highly respected prostate cancer researcher Dr. Anthony D'Amico, MD, determined that risk is substantially higher for such men, in addition to risk indicated by the current PSA level, Gleason, and staging, unless the cancer cannot be felt during the DRE (papers from 2004 and 2005). With the forewarning provided by the D'Amico team, patients can now realize they are at ground zero and can do more to move away. The D'Amico papers have been rapidly incorporated in the thinking of many doctors. They really are a very big deal! I'm confident they will be incorporated into the Memorial Sloan Kettering nomograms before long. (They are not there yet.) On the other hand, it's important to remember that some of the discouraging outcomes they document are with patients whose doctors were not forewarned of the added risk, and who were treated in years before the more modern approaches of today were available. That will make a difference for the good.

Take care,

Jim

 
Old 02-22-2009, 01:23 AM   #6
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Re: Husband just diagnosed...

Quote:
Originally Posted by prius 2008 View Post
I just found this board while trying to research more info about PC.

My husband is 68. He had a Gleason score of 9 with 12 out of 12 cores positive for cancer. The cancer is Stage 2 T2cMo. His bone scan was clear.
Otherwise my husband is in good health, slightly elevated blood pressure, non smoker, active & pretty fit for age 68.

The doctor stressed to us that his cancer is very aggressive. He said he'd only had 2 other cases in 15 yrs with numbers this high. He said there is 50%chance that it has spread to the seminal vesicles & other tissues.

A Radical Retropubic Prostatectomy with Pelvic Lymphnode Disection is scheduled for March 9th the soonest date available.

We understand what we've been told but we're still reeling from this information. We are concerned about the possible spread of the cancer to bladder or bowel. Any comments welcome...

 
Old 02-22-2009, 02:33 AM   #7
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Re: Husband just diagnosed...

Hi, Prius 2008,
I bet the sharing by Jim and Daff provide some support and comfort. The provide so much information that helps challenging as well as unchallenging situations.
The entire situation can be overwhelming. It is good to have a couple concerned friends like that with whom you can check as things evolve. They are laymen, as they often point out, but they have researched extensively books and articles of the experts. Our own doctors (like my beloved GP and urologist) have to be experts in many areas. I have great affection for and trust in them. The advise they gave was probably excellent. However, after doing some research, I arrived at what I thought was a better plan. One doctor recommended surgery. Another recommended a combination of hormone therapy and radiation.
My prejudice going in was that surgery was best. I was most interested in survival. Side effects were a lesser concern. Surgery would get rid of the problem, I reasoned. Important well connected well advised celebrities had selected surgery (John Kerry, Bob Dole, Colan Powell, Norman Schwartkof). Even though their cancer and situation are different from mine, they could have had any treatment available. I considered the recommendation of surgery indicated the urologist's confidence in my good health. Like your husband, I do not smoke, am active and generally healthy. This is major surgery and recommended less often for older and/or unhealthy men. So, I figure, we can feel good about that recommendation.
My prejudice before the research was not positive toward radiation or hormonal. They sounded like efforts to slow the growth of the cancer and reduce the impact of the existing cancer--more palliative than curative. From the research, I learned this is not correct. IADTsince2000 apparently developed great precision in being treated with hormones and is getting optimum benefit without radiation or surgery. So it is reassuring to know that hormone and diet can be effective. I think the program tailored for me by the Irvine Cancer Center would have been effective. It included a combination of hormonal therapy, seed therapy and external radiation.
I decided to have proton therapy. Daff has given you information that sounds helpful to me, including the disclaimers indicating this worked well for him, but he does not know if it is appropriate for your husband. My old school, Washington University, where I did graduate work in social work, started construction in October for a minature version of a proton center, but they think will be as effective. It is planned to be ready in October. I mention this because it indicates an outstanding cancer center sees the value of having this option in the St. Louis area. The closest one in operation is in Bloomington, IN. This facility associated with Indiana University treats only 15 people per day so some patients may not be accepted for treatment or have a long wait. Even if interested in exploring this, a patient in Missouri might not be able to travel to Indiana, Florida or California (the center in Houston apparently does not treat challenging prostates with Gleason 9 scores; Boston uses it slots for children, brain, nervous system, lung, and cancers other than prostate and this is the anticipated model for the proton center being constructed in St. Louis).
I had 45 proton therapy treatments at Loma Linda. My Gleason score was 7 (4+3). I did not get information on many other patients, but one optimistic rugged looking patient getting treatment had a Gleason 9. If I had a Gleason 9 and wanted to be evaluated for proton therapy, I would check out Jacksonville and/or Loma Linda. I could not manage to stay for two months in Jacksonville or Loma Linda, CA, I would not check out proton therapy. I would evaluate other radiation or surgery/hormone blocking. I would start by researching the plan proposed by my GP, urologist and the oncologist experts they recommended...and, if I lived in Missouri, I would get a second opinion at the Siteman Cancer Center in St. Louis. One thing I would ask them about is whether the precise radiation techniques that protect the surrounding tissues is appropriate for your situation. What are the advantages/disadvantages? You can let them know that you are not trying to be the doctor...and ask the doctors if Trilogy or TomoTherapy have more value than other radiation. You can tell them that a prostate cancer patient in California had heard good things about Trilogy, TomoTherapy and Barnes Jewish Hospital--if radiation is an acceptable option and a patient can't spend two months in Florida or California.
One last point. If the final treatment involved hormonal therapy, I would check out several threads for postings by Jim and take advantage of his extensive research and experience.
Dale2035

 
Old 02-22-2009, 12:25 PM   #8
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Re: Husband just diagnosed...

Hi Dale and thank you for your reply. At this point we feel that surgery along with radiation & hormone therapy is right for husband's case. The doc estimated that the cancer may have been ongoing for as long as 3 yrs. Now that we know more about PSA levels and see a score of 3.02 in 2002, it makes us think that there may have been a problem way back then. Anyway we feel a sense of urgency now and mostly we want to get that cancer ridden prostate OUT sooner rather than later.

We feel confident with our choice of doctor too. You mentioned Washington University in St. Louis. Our doc was trained in urology surgery there and at Barnes Jewish. His area of special interest & experience are in "urologic oncology including the diagnosis and surgical management of prostate cancer" as stated in his brochure. The doctor who will assist with the surgery was trained at the Mayo Clinic in urology.

We are learning as we read the replies we've received here and we need to learn much more about the radiation & hormone therapy which will follow my husband's surgery. Only a week ago we were mostly oblivious about PC. Thank you so much for your help.

 
Old 02-22-2009, 01:17 PM   #9
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Re: Husband just diagnosed...

Quote:
Originally Posted by prius 2008 View Post
Hi Dale and thank you for your reply. At this point we feel that surgery along with radiation & hormone therapy is right for husband's case. ...
We feel confident with our choice of doctor too. You mentioned Washington University in St. Louis. Our doc was trained in urology surgery there and at Barnes Jewish. His area of special interest & experience are in "urologic oncology including the diagnosis and surgical management of prostate cancer" as stated in his brochure. The doctor who will assist with the surgery was trained at the Mayo Clinic in urology.

...
First to Dale, thanks for your kind words.

Prius 2008 - I'm thinking you and your husband are probably in very good hands. If recollection is serving me well, Dr. William Catalona was the urology leader at both Washington University and Barnes Jewish for many years, and it's likely your husband's urologist worked with him and or trained under his guidance. Dr. Catalona is practically the dean of American urologists, was and continues to be a leader in PSA research, and is still considered a leading prostate cancer surgeon. Several years ago Dr. Catalona left St. Louis and moved to his current post to the north at Northwestern University.

At the Mayo Clinic, Dr. Horst Zincke, a leading prostate cancer surgeon, pioneered a combination treatment of surgery and hormonal blockade therapy for node positive prostate cancer, a type that many surgeons would not touch as surgery alone would not be curative. He and his team had remarkable success, and the doctor who will assist in your husband's case is almost surely aware of Dr. Zincke's work. He may have been on his team.

I'm relieved to learn that your husband's main doctor has had the kind of background you describe. His remark about seeing only a couple of such challenging cases concerned me, but all considered, he probably is a good choice, at least for the surgery part.

I'm not sure you are ready for the key to access to medical research studies yet, but here it is, for use if and when you should want it: [url]www.pubmed.gov[/url] . That's a site we are permitted to use on this board since it is Government sponsored. You can go there and search for combinations like " prostate cancer AND zincke h [au] ", then either read a resulting abstract, if there is only one, or click on hypertext authors' lists to read the abstract.

Take care,

Jim

Take care,

Jim

 
Old 02-22-2009, 03:57 PM   #10
Senior Member
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Join Date: Sep 2008
Location: Irvine,CA
Posts: 156
dale2035 HB User
Re: Husband just diagnosed...

Quote:
Originally Posted by IADT3since2000 View Post
First to Dale, thanks for your kind words.

Prius 2008 - I'm thinking you and your husband are probably in very good hands. If recollection is serving me well, Dr. William Catalona was the urology leader at both Washington University and Barnes Jewish for many years, and it's likely your husband's urologist worked with him and or trained under his guidance. Dr. Catalona is practically the dean of American urologists, was and continues to be a leader in PSA research, and is still considered a leading prostate cancer surgeon. Several years ago Dr. Catalona left St. Louis and moved to his current post to the north at Northwestern University.

At the Mayo Clinic, Dr. Horst Zincke, a leading prostate cancer surgeon, pioneered a combination treatment of surgery and hormonal blockade therapy for node positive prostate cancer, a type that many surgeons would not touch as surgery alone would not be curative. He and his team had remarkable success, and the doctor who will assist in your husband's case is almost surely aware of Dr. Zincke's work. He may have been on his team.

I'm relieved to learn that your husband's main doctor has had the kind of background you describe. His remark about seeing only a couple of such challenging cases concerned me, but all considered, he probably is a good choice, at least for the surgery part.

I'm not sure you are ready for the key to access to medical research studies yet, but here it is, for use if and when you should want it: [url]www.pubmed.gov[/url] . That's a site we are permitted to use on this board since it is Government sponsored. You can go there and search for combinations like " prostate cancer AND zincke h [au] ", then either read a resulting abstract, if there is only one, or click on hypertext authors' lists to read the abstract.

Take care,

Jim

Take care,

Jim
Hi, Prius 2008,
That is reassuring information. I got a little carried away connecting some dots from a few of your comments. What seemed to be casual handling (or non-handling) of PSA information of earlier doctors, the one doctor saying he had not seen many challenging cases and your mentioning a rural setting. Maybe that was it. I recalled my impressions from living for several years in rural Southern Illinois, Southern Indiana and my being stationed for a short time at Fort Leonard Wood. I feel the medical services at Washington U and Barnes Jewish deserve the high national reputation it enjoys. I am a little embarrassed that I was imaging you depending on doctors who did not have the rich experiences and qualifications you describe.
Your husband must feel a bit of comfort that he has these highly skilled doctors in his corner. ...and he has another special healing force: you. Some guys face comparable tough challenges without that level of medical competence and emotional support. ...and one more thing he has: this log. The focus right now seems to moving ahead with the plan you have had recommended to you by doctors who have your trust. Letting this log know about the good results will be of help to other men who are facing some discouraging news arising from not detecting the condition as early as they would if their doctors had been more attentive. Sharing that good news, I bet, will have value for your husband. If the road of recovery has some bumps, you can come with any questions/concerns that you have at that time. Even if a person has the best doctors in the world, I think he can get even better care from them if he has the information available for patients such as IADT3since2000. Having information from his exhaustive research (he serves as patient rep on professional study groups) equips a person to get the best care from his doctors, even when they are great. I am new to this, but I see that even highly qualified doctors put crucial decisions up to the patient. If that happens to us in the future, Jim and Daff will be here. That's reassuring (even though, like your husband, I have great doctors and a really great wife). Dale2035

 
Old 02-22-2009, 06:53 PM   #11
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Join Date: Feb 2009
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phleb1 HB User
Re: Husband just diagnosed...

Hi, I'm sorry you are in this situation. My husband was diagnosed at the age of 42. Surgery almost two years ago and doing well. I just wanted to say hello and to give you a couple more places to gather info. Their is a women's only forum, just google prostate ladies only forum. The women on that site are unbelievable informative about different treatments and have been a great emotional support. I'm glad that you are wasting no more time and starting with surgery. If I didn't work in healthcare our story would be similar to yours. I demanded my husband see a urologist after his first PSA was 2.7. His md told me he would placate me and send him to one. 6 months later, he is dx with Pca, gleason of 7. I understand your frustration and pain. Please let me know if I can help at all.

 
Old 02-23-2009, 08:42 AM   #12
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Join Date: Feb 2009
Location: missouri
Posts: 5
prius 2008 HB User
Re: Husband just diagnosed...

Thanks and I will definitely check out the ladies only forum.
Best wishes to you & your husband.

 
Old 02-23-2009, 09:09 AM   #13
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Join Date: Feb 2009
Location: missouri
Posts: 5
prius 2008 HB User
Re: Husband just diagnosed...

Jim & Dale-
I think you were both very correct in your initial impression of our local doctor & local med clinic. We live in a town of about 2200. We think of our local clinic as a "band-aid station", good for colds & coughs & minor things. But we have been going there once a year for a blood test to screen for cholesterol, diabetes, etc. & PSA for my husband. We do depend on our local doctor to tell us if something is wrong & direct us about what to do next.

OK-here's the really horrible part about my husband's 2007 PSA test. Not only did the doctor NOT phone to report a high result (5.32) but after we obtained a copy of the results we found a note jotted by the doctor next to the PSA numbers. It stated: "Urology consult recommended. PT wants to think about it & will let me know." We can't explain that. We just know that the doc NEVER called so my husband didn't have warning until 1 1/2 yrs later when he had another PSA which was by that time even higher. I get extremely angry thinking about that but I know it is a waste of our energy.

Our urologist is located in Columbia, Mo about a 45-50 min drive for us. Columbia is known for having very good medical facilities which we've used in the past for other procedures.

 
Old 02-23-2009, 02:14 PM   #14
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Join Date: Sep 2008
Location: Irvine,CA
Posts: 156
dale2035 HB User
Re: Husband just diagnosed...

Quote:
Originally Posted by prius 2008 View Post
Jim & Dale-
I think you were both very correct in your initial impression of our local doctor & local med clinic. We live in a town of about 2200. We think of our local clinic as a "band-aid station", good for colds & coughs & minor things. But we have been going there once a year for a blood test to screen for cholesterol, diabetes, etc. & PSA for my husband. We do depend on our local doctor to tell us if something is wrong & direct us about what to do next.

OK-here's the really horrible part about my husband's 2007 PSA test. Not only did the doctor NOT phone to report a high result (5.32) but after we obtained a copy of the results we found a note jotted by the doctor next to the PSA numbers. It stated: "Urology consult recommended. PT wants to think about it & will let me know." We can't explain that. We just know that the doc NEVER called so my husband didn't have warning until 1 1/2 yrs later when he had another PSA which was by that time even higher. I get extremely angry thinking about that but I know it is a waste of our energy.

Our urologist is located in Columbia, Mo about a 45-50 min drive for us. Columbia is known for having very good medical facilities which we've used in the past for other procedures.
Hi, Prius2008,
I really did not have enough information to be prejudiced against medical facilities in a small Missouri town. Thanks for not being offended. I grew up in a small town of 5000 and am aware of many positives and advantages not always enjoyed by larger towns. However, I worried that you were not getting help from health care providers who have SUCCESSFULLY seen large number of diverse prostate cancer patients. I join you in being positive about the care you are getting. My prejudice is positive toward Columbia medical care. With all the up-to-date resources in a large university setting, Columbia would, in my bias, be up on things.
I have positive feelings about Columbia resources in a different area of expertise. I was limping through Missouri driving a sick car (my wife of a few hours was driving the healthy one). The car developed problems after getting lumpy gas at an Illinois station. I switched to driving it when it stalled when my wife was passing a truck. I did not get any help at two small towns, but I perspiring finally made it to Columbia. They fixed the car (fuel filter clogged)!!! So my prejudice is that Columbia doctors AND MECHANICS are going to repair prostate problems and car problems or referred you or your car to someone who can fix things.
Hope you will be running as smoothly as my wife's car did on its way to California after getting some efficient care in Columbia.
Dale

 
Old 02-23-2009, 02:42 PM   #15
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Join Date: Feb 2009
Posts: 5
BDJC HB User
Re: Husband just diagnosed...

prius, you really need to get a second opinion from a radiation oncologist. Given your husband's pre-treatment records, there is a strong possibility of microscopic capsule penetration (cancer cell leakage). In the event that microscopic capsule penetration has occurred, a radical prostatectomy would not cure your husband's prostate cancer. You would know whether this has occurred or not almost immediately after surgery, first by the post-surgical review of the dissected prostate from the pathologists report, and then after your husband's first PSA test post-surgery. That PSA test should be PSA 0.2 ng/ml - if it is not, then there still are lingering prostate cancer cells.

There are some additional options to consider:

1) external beam radiation following a radical prostatectomy. This is used more frequently as men fail to achieve PSA 0.2 ng/ml following DaVinci radical prostatectomies. This can be somewhat effective; however, there is difficulty precisely targeting the cancer cells that are left over.

2) IMRT external beam treatment followed by brachytherapy - this is a fairly effective treatment, with a 65% overall cure rate. The radiation from the external beam works to destroy the cancer cells that have leaked outside the prostate, while the seeds then work to destroy the cancer cells inside the prostate.

3) brachytherapy followed by IMRT external beam. This is a procedure called ProstRcision that was developed by Dr. Frank Critz at Radiotherapy Clinics of Georgia. This procedure has better documented cure rates than beam followed by seeds - currently they demonstrate an overall cure rate of 83%. I recommend you contact them - they offer free phone consultations with one of their board-certified radiation oncologists and will also get you a free second opinion of your husband's pathology report. They will also match your husband's records against every other man of the 12,000 they've treated with similar records and tell you precisely the percentage of those men achieved PSA 0.2 ng/ml 10 years after treatment.

Remember, ultimately the choice is yours, not your docs - you have to be comfortable with the choice you make. Best of luck to you.

Last edited by moderator2; 02-24-2009 at 12:15 PM. Reason: posted disallowed website(s)

 
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