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Old 05-23-2008, 03:37 PM   #1
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Gleason 9

This is my first time on the message board - I've read the rules but please bear with me if some of this has been covered already. Today the doctors told us that my husband has prostate cancer. He was in for a regular physical May 2nd (after not having one for 5 years). He had been complaining of a lower back ache for over a month but we put if off to his job (heavy equipment operator). His PSA level was 44.4. We saw a urologist on May 13th for a biopsy (8 samples) and today we were told his Gleason grade is 9. We had a CT scan and bone scan today but haven't gotten results yet. On May 29th we have a consultation with his urologist again - can anyone tell me what to expect or any ideas on what lies ahead for us?

Thanks in advance for any help you can provide - My Dan is only 56.

Mary

 
Old 05-23-2008, 06:06 PM   #2
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Re: Gleason 9 - Question on Stage

Quote:
Originally Posted by MyDan View Post
This is my first time on the message board - I've read the rules but please bear with me if some of this has been covered already. Today the doctors told us that my husband has prostate cancer. He was in for a regular physical May 2nd (after not having one for 5 years). He had been complaining of a lower back ache for over a month but we put if off to his job (heavy equipment operator). His PSA level was 44.4. We saw a urologist on May 13th for a biopsy (8 samples) and today we were told his Gleason grade is 9. We had a CT scan and bone scan today but haven't gotten results yet. On May 29th we have a consultation with his urologist again - can anyone tell me what to expect or any ideas on what lies ahead for us?

Thanks in advance for any help you can provide - My Dan is only 56.

Mary
Mary- While this is obviously not the kind of news anyone wants to hear, you can now learn about the options for treatment. The results of the tests will certainly help guide what the doctors believe are the best choices. I don't have personal knowledge of what one might expect with a Gleason 9, but might suggest that you do some reading to understand more about this disease and what it means when the doctors talk about the clinical stage of his cancer (non-palpable, palpable- and these are called by T1C or T2A and other designations) in conjunction with his PSA figure.

One good general book is called Guide to Surviving Prostate Cancer by Patrick Walsh. There are certainly others- another I recommend to those who might be treated by radiation (specifically proton beam therapy, possibly in conjunction with hormone treatments) is Robert Marckini's book You Can Beat Prostate Cancer. There's also a lot of information on the internet.

You may hear from others on this board who can offer more direct information, but anything we say is based on our own readings and experience- as we're not doctors. One of the benefits of doing some reading now is that you'll learn what questions to ask when you meet the doctor on May 29. I'd also suggest you write these questions down and bring a notebook.

Please write more and we'll try to help in any way we can. Good luck on
this journey that so many of us have taken.

 
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Old 05-24-2008, 12:54 PM   #3
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Re: Gleason 9 - Question on Stage

Mary,

I'm so sorry you and your husband have been so rudely recruited into our club of prostate cancer survivors. While we have fine members, none of us wants to be here. This post is long, but I've been on some of the paths you and your husband will be on soon, and I think that your knowing about some of what I've experienced will be helpful.

You deserve extra credit for getting right into researching the disease. It took my wife and I a few days just to get over the stunning news, in circumstances that were eerily like those you describe; we did not react so quickly. I too was "only 56" (back in December 1999), and I was also way overdue for a physical, probably at least five years. (That seems really strange now as I see doctors so frequently!) I too had a high PSA, 113.6 - my first ever. (I had to insist on the PSA - the doctor did not think I needed one after he completed the routine physical. I could tell he was embarrassed, as he well should have been, when he gave me the bad news a few days later.)

The circumstances you describe mean that your husband's case will be challenging, but I'll give you some important good news: there has been great progress in managing challenging cases of prostate cancer in the past decade, though it is still far from a cake walk and there is no guarantee of survival, especially for those of us with difficult cases. Even for those of us with challenging cases, years of enjoyable life with a fair shot at outliving the disease are in store for us, except for rare cases, less than 1% of all prostate cancer cases as I recall it. Having a Gleason 9 or even a 10 is not enough to put you in that unfortunate group, which includes rare cases like "small cell" and endometrial prostate cancer (so named because the cells resemble the condition some women experience). (There has even been some progress for their cases.)

Here's an important caution and something you both might want to get familiar with: if the doctor wants to give your husband a hormonal therapy shot, it is very important in the circumstances you describe that your husband first go on "antiandrogen" pills for a week or so before getting the shot. The shots, probably either Zoladex or Lupron, act by shutting down production of testosterone by the testes. They do it by first boosting testosterone production, which makes the body realize it's getting too much, so it then shuts down production and keeps it down. However, that brief boost, known as testosterone "flare," is dangerous for some men. If a man has prostate cancer metastases in his spine, the flare can cause the metastases to suddenly grow enough to fuse the spine and criple the patient, often irreversibly.

Using an antiandrogen, typically either the drug Casodex or the drug flutamide, for a week (or more likely two weeks) before getting the shot will prevent this flare and will also start fighting the cancer. While flare for many of us who do not already have spinal metastases is a minor matter, prevention is wise for those who might be at risk. Your husband is at risk (in my layman's opinion - no enrolled medical education), because of his symptom of back pain. That symptom might be due to spinal metastases.

It's likely your husband's doctor is aware of the potential problems from flare, but in 2000 probably the majority of doctors were unaware, and I'm not sure how much the situation has improved. You or your husband might want to call the doctor's office in advance and talk to him or his staff about the issue of flare. If it were me, knowing what I do now but newly diagnosed and with a PSA of 44 and back pain, I would not accept a hormonal therapy shot without getting antiandrogen protection first!

Another way to shut down testicular production of testosterone is through the surgery known as "orchiectomy." This method does not result in flare. This is the fastest, and by far the least expensive method, but it is also irreversible. Many of us, like me, are glad we are on intermittent hormonal blockade therapy, achieved with medicines instead of surgery.

I hope I haven't scared you by raising the prospect of spinal metastases. Hopefully that back pain is just due to your husband's construction work. Once again there is some very good news that separates prostate cancer today from what our fathers and grandfathers faced. First, hormonal blockade therapy is usually highly effective at decreasing the impact of prostate cancer metastases throughout the body, at least for a time, the length of time depending mainly on how widespread the cancer is in the bones, lymph nodes and elsewhere. (Many doctors who are not experts in hormonal blockade therapy greatly underestimate its effectiveness and the length of time it works well to control the cancer.) But there is another important class of medicines to use as well known as bisphosphonates. I'm now on one of them, Boniva, and was previously on Fosamax (no detectable bone mets for me, but used to rebuild bone density and help protect against mets). Zometa is a much more powerful intravenous bisphosphonate that can actually reverse some bone metastases. For the right patient, it is a miracle drug!

To me there is one book that every survivor with a challenging case of prostate cancer should study: "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, well-known PC activist and wife of a survivor. It is the best on issues like flare, staging of the disease, the tests, scans, and exams that can be done, and medications like bisphosphonates. It also has an appendix with many forms that you can use to record all the key medical data you will be getting in an organized way. The forms will also help you see when the doctor hasn't given you all the information that you should have, so you can remind him when he might still remember or can easily access samples and scan films.

Bone scans and CT scans are usually not worth doing for low-risk cases, but they are highly worthwhile for challenging cases like mine and your husbands. (Mine were surprisingly negative.) If they turn out negative, then a more expensive but highly useful fusion ProstaScint scan probably will need to be done, though many doctors are still not up to speed on that scan. (The Primer describes it well, as well as the older version ProstaScint without fusion which I had - also turned out, again surprisingly, essentially negative.) The fusion ProstaScint is excellent at detecting and displaying prostate cancer metastases in soft tissue, including lymph nodes, throughout the body. It is capable of detecting much smaller deposits of cancer in nodes than a CT scan can detect.

Before you leave the doctor's office, be sure you know at least this information:
- the stage (mentioned by daff);
- any prior PSA results and dates of the tests (with actual reports of the tests if possible so you have a record of the lab that did the test and what kind of PSA test was done - there are several, using different parts of the PSA molecule, and results vary somewhat though not greatly).
- copies of the biopsy, bone scan, CT scan, and doctor's notes (your husband has a right to them). Among other purposes, those can be very useful in talking with other doctors, including second opinion doctors. Second opinions are par for the course in prostate cancer, as the disease is too complex for one doctor to master it all and to master more than one or two of the treatments, in my opinion. (Counting my initial, surprised family medicine doctor who reluctantly did the PSA at my insistence, I had at least ten face-to-face consultations before settling on a therapy.)

The books that daff and I have mentioned list other questions to get answered at the consultation.

Here's another tip from my own School of Hard Knocks. Before he starts therapy, probably about at next week's appointment would be wise, your husband should get another PSA test from the same lab/same test as on May 2, and with no romance, bicycle riding or horseback riding for a couple of days before. That will give you and your husband a fairly good idea of an important statistic: the PSA doubling time (PSADT). I started treatment within about three weeks of my first ever PSA test and never was able to determine my baseline PSADT. That statistic can be tied in to a number of research studies that bear on our prospects and tactics/strategies for managing our cases. It's particularly helpful if you know the PSA velocity in the year prior to diagnosis: if it's 2.0 or less, that indicates a case that is less challenging than it would otherwise appear, and vice versa. Even if you don't know about the year prior PSA, as seems likely as your husband was overdue for a physical, knowing the PSADT and projecting for a year at this time would probably enable you to judge what group he falls in.

IF the cancer is clearly contained in the prostate, which regretably is unlikely in your husband's circumstances but still possible for a minority of patients with Gleason 9 disease and a PSA over 10 (compare to cases in the "Partin Tables"), then a local attempt at cure could still be possible and reasonable, most likely with other therapy (such as hormonal therapy) as a backup. Even if it is not contained, a local therapy might be advisable to knock down the cancer as much as possible, but that call is harder to make, as you have to consider how much it is worth in view of likely side effects. I went straight by local therapies to hormonal blockade and have done well, but without a real shot at a cure.

"Medical oncologists" are the class of doctor most experienced with non-local therapies, and it would be a good thing to ask your husband's urologist if he can recommend one who is experienced with prostate cancer in order to get that viewpoint, and perhaps to take over management of your husband's case. From my viewpoint, most urologists are just not as effective in dealing with challenging cases as medical oncologists.

There's another wonderful book that is especially good for those of us facing difficult cases: "Beating Prostate Cancer - Hormonal Therapy & Diet," by Dr. Charles Myers, MD. It starts out with a section on the importance of hope and optimism, and that is what most of us need, at the beginning more than ever. It covers many key topics, and it includes awesome success stories for some men with horrible cases - PSAs in the thousands. It is also easy to read. (It helps that Dr. Myers has and is facing his own challenging case of metastatic prostate cancer, diagnosed in 1999; he's doing very well.)

I hope this helps. Both of you hang in there and keep your spirits up!

Jim

Quote:
Originally Posted by MyDan View Post
This is my first time on the message board - I've read the rules but please bear with me if some of this has been covered already. Today the doctors told us that my husband has prostate cancer. He was in for a regular physical May 2nd (after not having one for 5 years). He had been complaining of a lower back ache for over a month but we put if off to his job (heavy equipment operator). His PSA level was 44.4. We saw a urologist on May 13th for a biopsy (8 samples) and today we were told his Gleason grade is 9. We had a CT scan and bone scan today but haven't gotten results yet. On May 29th we have a consultation with his urologist again - can anyone tell me what to expect or any ideas on what lies ahead for us?

Thanks in advance for any help you can provide - My Dan is only 56.

Mary

 
Old 05-24-2008, 12:58 PM   #4
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Re: Gleason 9 - Question on Stage

Daff - thanks for the response. I'm in the process of reading Dr. Peter Scardino's Prostate Book and am so overwhelmed. It seems the more I read the more I cry, then the harder it gets to focus on the book. Everything came up so fast that I'm only half way through the book and just don't feel like I'll be very prepared for Dan's doctors appointment. Unfortunately his urologist (GREAT Doctor) is going out of the country for the entire month of June so at our meeting next Thursday we'll be introduced to a new doctor who will try and lead us through Dan's treatments in the beginning. I'm so scared of what lies ahead of us. Please know that I appreciate having someplace to help me through this. We have two adult son's (21 and 26) and aren't really sure on how much to tell them. The 26 year old had already had a few prostate exams due to his constant use of the bathroom and he's ok - the 21 year old is extremely emotional and I'm worried on how this will affect him. Any help?

 
Old 05-24-2008, 01:16 PM   #5
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Re: Gleason 9 - Question on Stage

Dear Jim - thank you for your reply - very helpful but also a bit over my head right now. I'll be heading to Barnes and Noble this afternoon to purchase the books you mentioned. I'm no stranger to cancer as my sister has been waging her own war for over 9 years now - started with breast and COPD and has spread to multiple areas in her body-she's currently still fighting but hasn't had any forward momentum (no backward either Thank God). I've seen what this dastardly desease can do and it terrifies me. I'm trying not to read too much into this until we get the CT and Bone scan results but it's hard not to and I also want to be prepared for our appointment next week. I need to hook up my printer and print off your thread so I'll lbe reading to prepare my questions for Dan's doctors. Thank you soo much for being here. I'll be in touch next Thursday if not sooner.

Mary

 
Old 05-24-2008, 01:54 PM   #6
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Re: Gleason 9 - Question on Stage

Hi again Mary,

You're welcome! We are all here to help each other.

It's normal to feel snowed under by all the information at the start, and it takes a while to sort your way through to what is important for you.

Take care,

Jim

 
Old 05-26-2008, 08:19 AM   #7
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Re: Gleason 9

I went into my urologist for a routine check and had a psa test....the results were 4.2 which I didn't think was too bad, but that was up from 2.7 the year before....he suggested that I have a biopsy....I had 24 sticks, 12 came back with 25% adenocarcinoma and with a gleason score of 8...he suggested I have surgery or brachytherapy. I opted for da vinci surgery which had a post pathology of a positive margin, no lymph node involvement and one seminal vesicle involved with cancer. The post path was a gleason 9..... I have since had 35 IMRT treatments and started Lupron shots shortly after it was realized that I had a failed surgery with my first post op psa reading of .62. Since my radiation therapy and three month Lupron shots my psa has dropped to .05, that is as low as the labs equipment will check. .1 or less is considered to be indetectable. Before my surgery I had a bone scan which was negative. I feel fine and am continent however do have ED problems which I attribute to the doctor taking both nerve bundles and also taking lupron. He said that after the completion of my Lupron therapy, another year to go that I could possibly have a return of erections. I have tried all the pills and only feel a little chubbiness with viagra....keep hoping...Anyway that has been the course of my illness and treatment. Hope this helps you a little. JWB

 
Old 05-27-2008, 03:25 PM   #8
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Re: Gleason 9

Dear Mary:
I'm so sorry about your difficult news. However you've received excellant advice and info from Jim and you're researching one of the best books on the subject. I'm a little prejudiced as Dr. Scardino was my surgeon who performed a radical prostatectomy on me over 6 years ago with excellant outcome.
Thsi leads me to the advice I'll offer for your consideration. After all the tests are done and the results explained you'll need to decide on treatment options. Whatevever treatment you and your husband elect I advise you to go to the best specialised institutions for that particular treament and use the best Dr's you can get. All practitioners are not equal and the best and most qualified are usually found in the best known teaching hospitals in the largest cities.
You have an outstanding institution in your state, the Mayo Clinicwhich is a great place to start. It has some of the best Dr's in the world. If they don't believe they're the best for a particular treatment they'll tell you and advise where you should go.I recommend you avail yourselves of their or comparable expertise rather than get treatment locally even thouigh you know and respect the urologist and its most convenient.
Best of Luck, Bob

Last edited by shs50; 05-27-2008 at 03:35 PM.

 
Old 06-02-2008, 12:44 PM   #9
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Re: Gleason 9

Hi all - thanks for your posts. We saw the urologist on Friday afternoon and found out good and bad news. The good is that the cancer hasn't spread to his bones and spinal area - that in itself is another issue (deteriorating back muscles and bone spurs created by his job). Unfortunately the cancer is not contained in the prostate only but has spread to his pelvic lymph nodes and abdominal area. The pelvic area is most common and the doctor has seen and dealt with this before but he hasn't seen the abdominal area before. Our first course of action is the drug Casodex ($500.00/round). This helps to start fighting the cancer but also to help reduce the possibility of "flare". Flare can be caused by the shot Lupron (which Dan is scheduled to have June 9th) that helps to shrink the cancer. Casodex tells his brain that his body has too much testosterone so it quits making it all together (PC feeds on testosterone). If Lupron is given without Casodex first, it can cause this flare to make his body create massive amounts of testosterone which can cause the cancer to spread quickly and instantly. We also need to monitor his liver functions as Casosdex has it's own set of side affects and affecting the liver is one of them - but of course you probably know all of this. Dr. Emme - his urologist has set us up to see and oncologist on June 17th that may or may not decide to add radiation or chemo to the drug regiment - won't know until then. If there is any other information anyone can share or help with - please do - your comments so far have been biggest support and help at Dan's doctors appointments.

M

 
Old 06-02-2008, 04:44 PM   #10
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Re: Gleason 9

Hi Mary,

That's good news on the absence of detectable cancer in the bones and spine! That absence alone puts your husband in a better prognostic category!

Did the doctor address the issue of assessing bone mineral density and then protecting it while on Lupron? You did not mention this, and it's very important. Back in 2000, my excellent urologist team was not familiar with that need, but the medical oncologist to whom they referred me understood it right away. I think I mentioned before that a qCT scan is apparently much better than the more common DEXA scan if there is a likelihood of arthritis or calcification of the blood vessels, as could well be the case with your husband. Be sure this issue is addressed by one of the doctors! I'm thinking the medical oncologist would be your husband's best bet for this.

About the Lupron and Casodex, both of which I've been on and off for eight years now, you have it almost right. Actually it's the Lupron that makes the body think it's getting too much testosterone so that it shuts down production. The Casodex acts mainly to block the "androgen receptors" for the cancer cells so that testosterone can't dock at the receptors and initiate the cell growth process (simplified view).

Monitoring the liver when you're on Casodex is very important so that you can cope with a serious complication if it starts developing. Fortunately, that complication is rare - nearly all of us are completely unaffected. Even if a patient does start developing it, there are medications that may enable him to continue with the Casodex, or continue after suspending until his system gets back in shape. One of those medications is known as Ursodial. Also, provided the complication is not yet well established, it is reversible by stopping the Casodex or with Ursodial in some cases, as I understand it as a layman. If Casodex just isn't tolerable, there are similar therapies that don't have the same problem.

Using Casodex and following shortly with Lupron now seems a wise strategy to me. Those drugs should put the cancer back on its heels. I personally believe that adding Avodart, or finasteride, is also wise, but many doctors are reluctant to do that as the medical community is not yet up to speed on the value of those drugs in addition to the main drugs. A few research papers have been published about that, and there is much more less formal information based on observations in the practices of individual doctors.

Be sure you and your husband learn about countermeasures for the side effects of Lupron. There is a lot that can be done to make it more tolerable!

Radiation in combination with hormonal blockade is often quite effective. Adding a course of chemotherapy at this point instead of much later is investigational, but it is not a rare approach for challenging cases. It was recommended to me in 2000, in fact, and I would have done that except that shortly after the recommendation my PSA responded so well to triple hormonal blockade (Lupron, 50 mg Casodex, Proscar - now available generically as finasteride).

Take care,

Jim

 
Old 06-04-2008, 11:09 AM   #11
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Re: Gleason 9

Thanks Jim - your an invaluable asset to helping me understand Dan's treatments moving forward and I'll never be able to thank you enough. Additionally, your story has been an inspiration to both of us - giving us promise for the future (originally we felt little or no hope in the beginning - cancer is such a scary word). We won't be seeing an oncologist until June 17 but Dan's urologist did mention the monitoring of his bone density. Dr. Emme wants the oncologist's input too. As for monitoring the liver function, we have the test from his original appointment with his general physician on May 2nd, then another urinalysis from his uroloigist (Dr. Emme) on May 13th and we are set to have another CBC and urinalysis on June 9th when he goes for his first Lupron shot - I hope that's a good start. Any thoughts on how often he should have the liver function checked? Also, can you explain a little more about Avodart or finasteride and what they help with? As for Dan's back, his general practioner wants him to have an MRI which is also scheduled for June 17th prior to seeing the oncologist.

Again Jim - thank you for all your information and support. Due to your original post I felt like I was very prepared when I walked into the original findnings consultion with the urologist. This doctor (who we like VERY much) took the time to answer all the questions I had written down and was very pleased that I had been doing my reading and was up to speed on what he was talking to us about.

Please continue to help us through this - again, your input is invaluable.

Mary

 
Old 06-04-2008, 07:43 PM   #12
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Re: Gleason 9

Mary,

You are most welcome, and I appreciate your kind comments, and kind comments from our board buddies. We all contribute from our own experience and from our own store of common sense. I'll insert some comments in green in excerpts of your post below. - Jim

Quote:
Originally Posted by MyDan View Post
... We won't be seeing an oncologist until June 17 but Dan's urologist did mention the monitoring of his bone density. Dr. Emme wants the oncologist's input too.

I'm very glad for that. To me it's a good piece of evidence that the doctor is up to speed, that he is keeping up with the field. Many doctors do not, something that surprised the heck out of me when I realized it a couple of years after starting on this journey. A great many of us on hormonal blockade will lose bone density as a result of the blockade unless that is counteracted with a bisphosphonate drug coupled with calcium and vitamin D3 supplementation (or prescription vitamin D3 - calcitriol, though that seems to have decreased in favor as a general tactic - still useful for some patients; I'm not real knowledgeable about the use of calcitriol related to bone density; maybe another board participant knows).

As for monitoring the liver function, we have the test from his original appointment with his general physician on May 2nd, then another urinalysis from his uroloigist (Dr. Emme) on May 13th and we are set to have another CBC and urinalysis on June 9th when he goes for his first Lupron shot - I hope that's a good start. Any thoughts on how often he should have the liver function checked?

I believe that monthly "LFT" (Liver Function Test) checks are the standard until it is clear that the patient's liver handles the drug well; that will probably take several months. I haven't had an LFT for a long time as it's clear I do just fine with Casodex.

Also, can you explain a little more about Avodart or finasteride and what they help with?

They do several things, but the main thing is to prevent the conversion of testosterone into dihydrotestosterone, known as DHT. Preventing conversion is good, because DHT is several times more potent than testosterone as a fuel for prostate cancer; in some men DHT is apparently ten times more potent.

Even after hormonal blockade with Lupron and Casodex, there is still some testosterone remaining, and that can be converted into DHT. When testosterone is inadequately blocked, as happens infrequently but too often with many doctors not even checking it, a lot more DHT results from conversion.

Another thing finasteride and Avodart do is decrease blood supply to tumors in the prostate. There are probably other anti-prostate cancer things they do that have not yet been discovered. Of course, both drugs are known for and approved for their ability to help control BPH, so that is a "side" benefit for prostate cancer patients who still have their prostates (like me). Another side effect, this time a welcome one, is that they restore some hair in some (not all) of the male pattern baldness areas (again me). Many doctors have been slow to realize the role and value of these drugs against prostate cancer, but that is changing; just today NBC ran a feature saying that follow-up analysis had shown that finasteride SAFELY prevented 25% of prostate cancer and did not promote high grade disease in a few men.

...
Mary

 
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