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Old 05-28-2009, 04:52 PM   #1
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My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Please, anyone who can offer any input or information. My husband had a high PSA level a month ago (over 5). I wanted him to get a level b/c of his frequent trips to the bathroom. The report came back today, I'm not a doctor, but it shows 4 out of 6 specimens positive: specimen b: malignant (3+3) =6 PTI: 20% specimen c: Malignant (3+3)= 6 30% specimen e: malignant (3+3)= 6 20% specimen f maligant (3+3)=6 15%

based on the above, and the his age (he will be 44 this Aug), should he have his prostate removed or radiation? Has anyone know or personally experienced prostate ca at this age? Please help with any information, thank you.

 
Old 05-29-2009, 09:42 AM   #2
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Firstly, I'm very sorry to hear the distressing news of your husband's diagnosis. 43 is a young age for you both to have to deal with this...and it is something to deal with together. You said you just received the biopsy report "today" (yesterday), and so if he is like me he is in a state of shock right now, and perhaps you are both just realizing that you have a steep learning curve in front of you. One good thing to note here is that prostate cancer is generally a slow growing cancer, and so you have some time to study, ask, and learn before making decisions. I had a very similar diagnosis less than 6 months ago, and an identical Gleason (3+3=6). I am 49.

I, too, found this board very early after diagnosis, and have found many of the postings to be very valuable in learning a wide range of information about the road ahead. A Chinese proverb says: "If you want to learn about the road ahead, speak to those on the return path." There are many good people regularly reviewing and inputting on this board who have been down the road, and you will likely get a range of responses to your question, although many will be based largely on the path that they have choosen (as is mine).

To fully take advantage of this board as a learning tool, I would recommend taking time to scan through past postings. I had several books recommended to me (on this board) that I would pass on to you. Both of these take a balanced view of all options. The first is "A Primer on Prostate Cancer: The Empowered Patient's Guide" by Dr Stephen Strum and Donna Pogliano. The second is "Guide to Surviving Prostate Cancer" by Dr Patrick Walsh. I ordered the books online via a national bookseller and received them within days. They are both outstanding...and balanced. I recommend placing an order today.

As you have already begun to learn, generally at 43 there is more than one treatment option available. No two people have exactly the same circumstances and conditions, but since the purpose of this board is to share information and share personal experiences, I'll share some of my thought processes which led to my decision to have surgery last month (Apr09) to remove my cancerous prostate.

In your 40's, and with a Gleason of 3+3=6, you have very likely "caught it early." Through all the clinical testing (the pre-treatment testing), I eventually learned that there was a strong indication that my cancer was contained only within the prostate, and probably had not spread beyond the prostate walls (one is never 100.0% certain). If there was any indication of spread or even a higher liklihood of spread...a much higher PSA or higher Gleason score, or indications of irregular surface from a DRE, or other clinical test results...then the surgery option would have been either 'off the table' or at least less favorable. However, in my situation, every indication was that it was fully contained and indeed "caught early."

At my young age, one of my desires was to get the cancer out. Again, having "caught it early", I realized that I had the potential for having it removed and never having to deal with it again. I have kids, a busy job, and a life I wanted to get on with. One of my considerations for radiation was that it doesn't remove the cancer...it delays progression; it slows the cancer down. I learned that taking the radiation approach in my 40's would probably lead to having to deal with it again later in life. If I was two decades older and in otherwise the same general circumstances, I would have likely selected radiation or "active survelance'; one decade older and it would have been a tougher decision between surgery and radiation.

Both treatments have side effects. With surgery, incontenence and impotence set in with essentially everyone immediately after surgery, and there is a lengthy side-effect recovery period requiring much patience. (This is where I'm at now...having my patience tested regularly.) Generally, however, I learned that those who had good sexual function before surgery (again, often correlated to younger age) will generally recover best from the impotence (there are some statistics on recovery; but usually not age-weighted differentiation). My experience so far is that I am making progress in each area a little bit week-by-week...noticable improvement; however, the rule of thumb is generally considered to be 1-year.

There are different modes of radiation, but none are a "silver bullet" either; my experineces in this area are from what I learned, not lived. Incontenence and impotence are reported, but in a much smaller percentage of men than surgery...but for me one of the issues was that it's onset comes later, over time, and is generally not reversed. Also, sometimes the radiation stimulates other problems, such as bladder cancer, pelvic bone weakness, or rectum problems (depending on the mode of radiation treatment), and again these are all problems which come later, over time, as a result of the radiation. Certainly, let me stress, that these are radiation side effects that do NOT impact everyone...but the these are some of the considerations that I weighed in my decision.

Again, with my factors, my age, my having "caught it early" and the possibility to never have to deal with it again, I chose surgery over radiation. In my mind, I wanted to get it behind me, then fight my way back with better things ahead of me, rather than ongoing anxiety about the possiblilty of a worsening outlook...this was my personal perspective. Pre-operatively, I was in good health, exercised regularly and ate a good diet.

With surgery there are multiple options...the "open" or the "minimally invasive", which is mostly done today with a robot to hold tools while the doctor manipulates the end-effectors from a console/monitor. Doctors generally do one method or the other. Generally, the common advise is to get the best, most experienced doctor you can find to operate, irrespective of the method. I found a doctor I was comfortable with who had performed many hundreds of robotic surgeries at a nearby University Medical Center.

Post-operatively, I began cardio exercise 11 days after surgery. By 3 weeks after surgery I was doing 5 miles on the elliptical trainer. After 6 weeks, I started doing "core" workouts, albeit lighter than I was doing pre-operatively.

I am still on the path to recovery, but my recollections of where you are at right now are still fresh. Study, ask and learn is my advise to you. Order the books. Review more posts on this board. Stay strong for each other.

Best wishes...

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Old 05-29-2009, 11:55 AM   #3
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

kcon, first, thank you very much for taking the time to respond to my post. I am sorry to hear of your dx., 49 is young, but I find your spirit strong and uplifting. As hard as this is to accept at the moment, I found comfort and enlightment in your response. I intend to get the books you recommended. The information you provided is extremely helpful. It will be extremely helpful to us we consider all the options. Like you, my husband is busy in his work, kids, etc. and seems to have the same outlook about his life as you. I had a question for you about your dx. You mentioned that all your pre-clinical testing showed that the prostate cancer had not spread and was localized. Did you have a lymph node biopsy? or x-rays? My husband's urologist didn't think it was necessary for him to get further testing, and based on the pathology findings, felt that it is localized. I am wondering whether he should undergo additional work-up to r/o the possibility of metastatis. I feel pretty good that it hasn't, but I guess I'm being extra cautious. I'm sure I will have more questions for you, I will think of them as I discuss this further with my husband. Stay strong.

 
Old 05-29-2009, 02:33 PM   #4
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Quote:
Originally Posted by sbear1102 View Post
... It will be extremely helpful to us we consider all the options. ... I had a question for you about your dx. You mentioned that all your pre-clinical testing showed that the prostate cancer had not spread and was localized. Did you have a lymph node biopsy? or x-rays? My husband's urologist didn't think it was necessary for him to get further testing, and based on the pathology findings, felt that it is localized. I am wondering whether he should undergo additional work-up to r/o the possibility of metastatis. I feel pretty good that it hasn't, but I guess I'm being extra cautious. I'm sure I will have more questions for you, I will think of them as I discuss this further with my husband. Stay strong.
Hi sbear,

I too would like to welcome you and your husband to this board that all of us would have liked to have been an area of no concern and irrelevant in our lives.

kcon has written such a fine post, from the mind as well as from the heart, covering so much of what needs to be said. He also has the perspective of a young patient.

There is one comment in his response where the radiation doctors could probably make a convincing argument in their favor. It's where kcon wrote: "One of my considerations for radiation was that it doesn't remove the cancer...it delays progression; it slows the cancer down. I learned that taking the radiation approach in my 40's would probably lead to having to deal with it again later in life. " Research for more recent radiation technology can claim to destroy the cancer potential of the tissue it attacks with an adequate dose, though the tissue itself is not destroyed (in contrast to a technology like cryo therapy). If all the cancer is in the range of the radiation, and if an adequate dose is given, research very strongly indicates that that cancer is gone and will not be a further problem. One of the reasons for what kcon said is that there was a problem with earlier external beam radiation as a dose around 60 Gy would not always kill all the cancer even when it was on target, though it would slow it down as kcon said. Now, radiation doctors know that higher doses are needed to assure that targeted cancer in the prostate is killed, and now it is a rare prostate cancer indeed that can escape an appropriate dose of properly delivered radiation, if that cancer is all in the range of the radiation. (You may also hear about a newcomer - CyberKnife with Stereotactic Body Radiotherapy (SBRT) dosing; that uses a much lower dose, about 37 Gy, but it is delivered more intensely in five sessions, which seems to make it about as effective as conventional radiation.)

By the way, "more recent" does not mean "yesterday." Dr. Dattoli now has follow-up results in the 14 to 20 year range, and many years of successful followup data are available from other researchers too. Much of the radiation research has survival and recurrence tables with a very nice characteristic: while the rates of success decline a bit as years pass, (similar to rates for any other therapy), the patterns tend strongly to flatten out after a certain number of years have passed. In other words, you see very few additional failures after those times. That's a strong indicator of success over the long-term, over the rest of our lives.

There are a number of good books on radiation that make this point effectively based on published studies. The one I know best is by Dr. Michael Dattoli and his co-authors, "Surviving Prostate Cancer Without Surgery - The New Gold Standard Treatment That Can Save Your Life and Lifestyle." The two books kcon recommended are great for an overview and orientation on key empowering aspects for all therapies and decision making (the Primer) and for surgery (the Walsh book, also covers aspects beyond surgery), but a good book by a radiation doctor like Dattoli would give you key information about radiation.

You mentioned that you were still looking at all the options; do you know that cryo therapy is another option that is now established? Dr. Gary Onik, one of the world's experts in cryo, and Dr. Centeno wrote a book that covers cryo well.

You asked about whether to strive for more information about the nature and extent of your husband's cancer. Dr. Strum, medical co-author of the Primer, represents the physicians who like to get as much information as they can in order to do the optimal tailoring of the therapy to the patient. For instance, he would like all new patients to have a PAP (not the one you know, rather Prostatic Acid Phosphatase) test run. (It's a simple blood test, like a PSA test, and the needed vial of blood can be drawn when blood is drawn for other tests with the same needle stick.) He cites research behind his recommendation in the Primer. Dr. Dattoli also feels that test is important for indicating whether radiation will be successful. (Other research shows that it helps predict the success of surgery too.) I believe Drs. Strum and Dattoli. On the other hand, I respect other doctors who feel that the PAP test does not add information that is independent of what you get from other tests. This is typical of the issues that are judgement calls, though calls informed by research, experience and reason.

Bone and CT scans, though, are on Dr. Strum's bad list if patients have low-risk case characteristics, and it appears your doctor has not recommended them, which is a good thing in my layman's opinion. (I'm a now savvy survivor in my tenth year with a challenging case, so I've learned a lot, but I've had no enrolled medical education.) Fortunately, the respected American Urological Association (AUA) has weighed in on the issue, also recommending that they add little or no value for men with low risk cases. You can see a recently updated thread about these tests.

As far as sampling lymph nodes, either in advance or at the time of surgery, the AUA has weighed in on that too, also advising that neither be done for low-risk men. These AUA recommendations are available to us in an 82 page document entitled: "Prostate-Specific Antigen Best Practice Statement." You are in luck as they update this document about every ten years, and they just updated it last month.

Your husband's case statistics look good, but there are at least a couple of steps you both could take. What seems like the most important is to make sure that Gleason Score was developed by a pathologist who specializes in prostate cancer, as contrasted with a general pathologist who handles tissue samples from boys and men, girls and women, for cancer and all other comers. If not, then it is really wise and important to get that sample reviewed by a lab that is expert in prostate cancer pathology. The Primer makes recommendations.

A second step is a low-chance-of-reward but high-payoff-if-successful tactic: a leading-edge-of-the-art Combidex scan of lymph nodes. That scan is excellent at finding metastasis to lymph nodes - far superior to surgical sampling of nodes. On the other hand, (1) it's unlikely that nodes will have metastases for low risk cases, and (2) competent Combidex scanning is now only available in the Netherlands. I'm not sure whether insurance would cover the expense for a case that appears so far to be low risk. One of us vets should start a thread about Combidex. Till that happens, you can get great information from the Prostate Cancer Research Institute, a non-profit organization, which devoted much of a recent issue of its newsletter (free, but they depend on voluntary contributions) to Combidex.

Be sure to checkout some of the posts on lifestyle tactics to help counter PC on this board. These tactics involve nutrition, supplements, diet, exercise (aerobic and strength) and stress reduction.

Take care, and I hope you don't have too bad a case of information overload !

Jim

 
Old 05-29-2009, 07:35 PM   #5
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

IADT3since2000, it is good to hear from you, thanks for all this information. We are just starting to research, I got a few books today to read. The pathologist who read the results is and MD Board Certified in Anatomic Pathology and Clinical Pathology. There is a number to call, I'm wondering now if his reading is accurate. How would we go about having a Pathologist certified in Prostate CA read the biopspy?

 
Old 05-30-2009, 05:21 AM   #6
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

I know you have lots of reading to do with the excellent suggestions you've received to date. One treatment that you might want to put on your list to evaluate is proton beam radiation, which has been effective due to its extremely targeted nature- and generally that results in fewer side effects than other forms of radiation and surgery. My treatment for a Gleason 7 was completed about 1 1/2 years ago at the University of Florida Proton Therapy Institute in Jacksonville. An acquaintance, who is 50, just completed his treatment about two weeks ago, and was very pleased he looked into it and chose this route vs surgery.

One of the benefits in submitting your info to this center is a review of your biopsy slides. They do a lot to make sure people have had the necessary tests and that the slides have been read accurately before. You might want to contact them- if nothing else just to learn a little more. The book that starts most of us on this route is Robert Marckini's "You Can Beat Prostate Cancer". It's a worthwhile perspective to gain-- available from online booksellers (where you can read dozens of reviews of the book and the treatment) and also provided as part of the package that Univ of Flor Proton sends to interested potential patients.

 
Old 05-30-2009, 06:45 AM   #7
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Thank you for this information. I will look in to this. Is this a procedure covered by insurance?

 
Old 05-30-2009, 09:40 AM   #8
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Quote:
Originally Posted by sbear1102 View Post
Thank you for this information. I will look in to this. Is this a procedure covered by insurance?
In most cases it is- since it's covered by Medicare (not applicable to you obviously), but this forms the basis for much of the reimbursement amounts paid for the doctors and facility costs. I was covered under a CIGNA plan, and the doctors were actually in-network for me (I travelled from North Carolina to Jacksonville for my treatment, sublet a place for two months, and had my dog to keep me company, plus occasional weekend visits from my wife who was working and my children). Some that were there were able to carry out their business via computer- the time required each day for the treatments was brief, and one doesn't feel tired- so can pretty much carry on with whatever.

In what part of the country do you live?

 
Old 05-30-2009, 10:57 AM   #9
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Hi again…following up to your questions back to me from yesterday about my pre-treatment testing. Also saw your other post from this morning in a separate thread, and so I will weave in additional info based on my personal experiences into this response.

You already have one access to one tool for predicting whether the PC is an organ-confined disease (OCD), and maybe your doctor has already spoken to you about this. Two doctors (including Patrick Walsh, author of one of the books I recommended) developed what they call the Partin Tables (named after the other doctor, Alan Partin) to statistically predict OCD. The only inputs needed are: (i) PSA, (ii) Gleason score, and (iii) estimated clinical stage. The look-up tables are found in the appendix of the “Primer” book I recommended, and also online (just search “Partin table”; we can’t give non-governmental URL links on this board).

My urologist sent my biopsy core samples to Bostwick Labs, which is one of the most recognized pathology labs specifically for PC analysis. Bostwick has developed their own proprietary probability tables which includes all the factors in Partin Tables, plus the additional factors of age and focus (which would have probably been part of your husband’s biopsy report). With the additional 2 inputs, the Bostwick tool, called UroPredict, is reported (Journal of Urology article) to be a more accurate predictor than Partin Tables. If you can find the Bostwick site online and the UroPredict link, then you can enter your own data and get an instant response.

By the way, my surgeon had the pathology lab (at the University hospital he works at) re-read my biopsy slides. They confirmed the Bostwick results. All I had to do was to call Bostwick and have the slides sent to me at my home, then I delivered to the hospital pathology lab.

After my biopsy, I had a PAP test, a simple blood test. Interestingly, I learned that going back several decades before the PSA test was more fully developed as the best-available screening for PC, the PAP test was the primary screen. Today, it’s very common after initial dx to help clinically determine the likelihood of whether the PC is confined to the prostate gland or not. High PAP is a clue that PC is more aggressive and less likely to be OCD.

My doctor also recommended CT scan and bone scan, both of which I had done and both of which were negative. Jim (IADT3since2000) has commented below that the AUA has deemed these unnecessary for low risk patients. I have since also read this many other places, and much of the discussion has been about unnecessarily driving up healthcare costs. Out of curiosity, I just looked up my bills and found that my insurance was billed about $7.5K for these tests. Had I been more informed at the time I might have questioned my doctor about the need for these two tests, but probably would have gone with the flow if he felt strongly about them.

These were the tests I had. My relatively low PSA, my clinical Gleason, my age, my “normal” DRE results, and these other results helped to give me confidence, with the statistical backing, that I had OCD and that surgery was a biologically appropriate treatment for me.

You also specifically asked about a lymph node biopsy. I spoke to several surgeons before deciding my path. The surgical protocol for surgeon “A” is to perform a “surgical biopsy”; that is, after initially accessing the pelvic area in surgery, he dissects lymph node specimens and sends them directly to the hospital’s pathology lab for a quick analysis before progressing further in the surgery…they basically sit and wait for the results in the OR. If the nodes contain cancer, then the surgery is typically stopped before the prostate removal (RP, or radical prostatectomy) is performed…because it wouldn’t do a lot of good to remove the prostate surgically when the patient is going to need some other treatment (probably radiation, if the patient was initially a surgery candidate) to address the cancer spread.

Protocol for surgeon “B” does not include analyzing lymph nodes during surgery if the clinical analysis shows likelihood of spread is very low (low risk case). However, lymph node samples are taken during surgery and analyzed as part of the post-surgery pathological testing. I ended up going with surgeon “B”, but not based on this or any one single factor. My post-surgical pathology report indicated my lymph node specimens were negative for cancer. By the way, Jim (IADT3since2000) also commented below that “As far as sampling lymph nodes, either in advance or at the time of surgery, the AUA has weighed in on that too, also advising that neither be done for low-risk men”...in other words, they agreed with surgeon "B" approach for my low-risk case. I was, however, unaware of this AUA advisement prior to my surgery.

One final "by the way" comment, as part of the post-surgery pathological testing, the Gleason score is re-assessed based on a thorough cross-sectioning analysis—more detailed than the small number of sample cores taken clinically. My clinical Gleason was 3+3=6, and my pathological Gleason was 3+4=7.

Well, I know that you are "drinking from a firehose" right now, but I hope that my inputs have added clarity rather than added confusion.

Best wishes...

 
Old 05-30-2009, 02:45 PM   #10
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Quote:
Originally Posted by sbear1102 View Post
IADT3since2000, it is good to hear from you, thanks for all this information. We are just starting to research, I got a few books today to read. The pathologist who read the results is and MD Board Certified in Anatomic Pathology and Clinical Pathology. There is a number to call, I'm wondering now if his reading is accurate. How would we go about having a Pathologist certified in Prostate CA read the biopspy?
[response #5 on this thread]

You're welcome for the help. I think a lot of us are "paying it forward" for great help we got in the early months of our journeys. That's definitely the case with me! We also continue to learn from each other. A few minutes ago I learned from kcon's reply of Dr. Bostwick's UroPredict formula. I'm looking forward to finding out the details as Dr. Bostwick is one of the geniuses in this field.

Your husband's pathologist certainly has the credential he needs to serve as a pathologist, but that does not tell you what you need to know about whether he has the desirable special expertise with prostate cancer biopsies. You might be able to tell from the pathologist's role and position: if he is a general pathologist for a hospital or general urology practice, he is unlikely to have that special expertise. If your husband's urologist specializes only in prostate cancer or has a high percentage of prostate cancer patients in his practice, that would suggest that he has found a pathologist that gives him reliable results. Your husband's current pathologist's analysis might still be right on target even if he does not have special expertise in prostate cancer, but research indicates that there are a substantial number of undergradings, and fewer, but still a significant number, of overgradings.

While there is no certification for special expertise in prostate cancer biopsies, doctors who do specialize in prostate cancer have come to some opinions about what pathologists and labs are especially good. I believe the Prostate Cancer Research Institute has published a list. I know that Dr. Strum, the medical co-author of the Primer that kcon mentioned, has a recommended list of eight pathologists or labs on page 50. No doubt there are some others, but that is one list I would trust.

Take care,

Jim

 
Old 05-30-2009, 06:49 PM   #11
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

We live in central NJ. I can appreciate the protocol for surgeon A and surgeon b approach, very good to know. I do think that my husband should get add'l diagnostic work-up prior to scheduling surgery (if that is that path to be taken). Being all too familiar with cancer (mother had recto-colon CA 3 yrs ago- went through rounds of radiation, chemo, and finally surgery. The surgeon biopsied the surrounding lymph nodes FOLLOWING Surgery- all negative. Approach B is all together new to me. One step at a time.

 
Old 06-06-2009, 10:04 AM   #12
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Hi again,

Thanks for your kind note of recognition on my own (separate) thread. I wanted to touch base with you again because I know you are at a difficult stage. Very glad to hear you are continuing to move forward with your learnings, and that you have a second opinion scheduled for later this month.

You mentioned “We basically have just a few clinical pieces to go on: biopsy report, PSA's, DRE”, but keep in mind that these are the MAJOR building blocks of information. And then keep in mind that these MAJOR building blocks all indicate that you have caught this early, which can allow the greatest range of treatment options and very high likelihood of complete cure.

This might not quite be where you & your husband are at mentally just yet, but about a month after diagnosis my mind started shifting. The first few weeks, like everyone who hears the “big-C” word, I was thinking about “getting my affairs in order”, and generally depressed and in tears about thinking the worst. But as I continued to learn more, I came to realize (and I literally said this to my wife, and then to other close friends & family) that “I realize this thing isn’t going to kill me; it’s just going to mess me up for a while.”

Well the prospect of being “messed up for a while” isn’t great, but it’s better than the alternative. I attended my first-born’s high school graduation last weekend, 7-weeks after surgery and unless they knew this in advance, nobody in attendance would know that I had major surgery in early April and defeated cancer.

To be sure, there are side effects which I spoke of earlier, but I am getting on with my life, making progress & working through those effects, and looking forward to putting them behind me.

I hope you can find some comfort through my experiences that from the current feelings of darkness there will be another side of this to emerge to, but one has to endure the passage.

best wishes...

 
Old 06-06-2009, 06:48 PM   #13
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

I guess I say "just a few pieces to go on" b/c I'm wondering what lies ahead. I'm thinking of having him get a PAP test, bone scan, and pelvic scan as well as another PSA test (I've seen on here and elsewhere that it can spike in a matter of weeks). I have a nursing background, so I can help my husband with the aftercare should he decide to go the surgery route. Did you say you had laproscopic surgery? The other thing is we haven't even gone back to the urologist who did the biopsy in the first place. An appointment for a second opinion is scheduled with a specialist at the end of this month. My husband thinks it is ok to delay treatment for awhile, until at least beginning of next year but I feel like, to refer to another thread on this board "he is carrying a rattlesnake in his pocket". He is so busy with work, we were planning on moving, and a baby due in October, everything all at once. In the midst of all this craziness, I don't want to lose sight of the most important thing, his health. He is making statements like, "if anything happens to me..." It bothers me to hear that kind of talk and told him that his kids and I need him around, to help raise them and that the most important thing is to stay alive, and we can deal with the side effects. The side effects you mentioned, do they get a little better with each day? It seems like they vary from one person to the next. I know this is on his mind. From your own experience, is their any advice you can give me on how to help him cope with his diagnosis- I'm trying to be as optimistic as possible, while still considering it serious enough to not delay treatment. I'm worried that waiting until after October is risky. His urologist told him it is a slow growing cancer, however, he has a Gleason of 6, 4 out of 6 cores were positive for cancer, ranging from 15%- 30%, and his last PSA reading from April was 5.03. The reading before that was 3.7 in july of 2007. I know you are not a physician, but are there any recommendations you can give as far as his upcoming appointment with his urologist? things to mention, request, etc. Thanks kcon.

 
Old 06-07-2009, 03:23 PM   #14
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kcon HB Userkcon HB User
Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Some comments embedded in blue...

Quote:
Originally Posted by sbear1102 View Post
I guess I say "just a few pieces to go on" b/c I'm wondering what lies ahead. I'm thinking of having him get a PAP test, bone scan, and pelvic scan as well as another PSA test (I've seen on here and elsewhere that it can spike in a matter of weeks).

Don't be surprised if your urologist does not recommend the bone scan. Refer back to post #4 in this thread; the AUA has published in their "best practices" guidelines that they are of little value in low-risk cases. The arguement is generally that our health care dollars would be better spent elsewhere. Also see the very informative thread started & updated by Jim (IADT3since2000): http://www.healthboards.com/boards/showthread.php?t=615403

I have a nursing background, so I can help my husband with the aftercare should he decide to go the surgery route.

Excellent.

Did you say you had laproscopic surgery?

Yes I did; I had the robotic laproscopic surgery. It's a lengthy surgery (4 hours for me), and the robot basically holds the tools for the surgeon...the robot's arms don't tire.

The other thing is we haven't even gone back to the urologist who did the biopsy in the first place. An appointment for a second opinion is scheduled with a specialist at the end of this month.

Which kind of "specialist" are you seeing at the end of the month?

My husband thinks it is ok to delay treatment for awhile, until at least beginning of next year but I feel like, to refer to another thread on this board "he is carrying a rattlesnake in his pocket".

I had injected that Charlie Daniels quote in a different thread about PC being "like a rattlesnake in your pocket", but when Charlie said that (and when I quoted him), it was in a little different context. Charlie was promoting awareness, encouraging men to get tested (PSA). You'd be surprised how many don't. I re-used it to encourage someone to not hesitate about the next possible step...a biopsy. Your husband is past both those stages; PC is confirmed with biopsy results. I suppose the quote still applies, though, in that he needs to take some action.

Now, to your question about consideration to "delay treatment" (and also later in this posting), this is where I would call upon other, more learned board-readers to contribute, because I am not well versed on the mechanisms that might possibly trigger an acceleration of progression. You do already know that it is generally a slow-growing cancer in it's early stages. Everywhere I've read, the doctor's say to take your time in understanding the disease and exploring options. I just don't know when it starts to be too long.

While "Active Surveillance" is generally not considered the best option for patients your husband's age, there is probably a part of the answer to this question (about delayed treatment) that might be more well known by those who are intimate with AS. For example, what are the triggers that tell AS patients it is time to do something more aggressive? I don't know.


He is so busy with work, we were planning on moving, and a baby due in October, everything all at once.

Wow, that is a lot.

In the midst of all this craziness, I don't want to lose sight of the most important thing, his health. He is making statements like, "if anything happens to me..." It bothers me to hear that kind of talk and told him that his kids and I need him around, to help raise them and that the most important thing is to stay alive,...

I was certainly thinking the same thing in those first few scary weeks...as I discussed below.

...and we can deal with the side effects. The side effects you mentioned, do they get a little better with each day? It seems like they vary from one person to the next. I know this is on his mind.

Definitely varies from person to person, but there are some trends to follow. Regarding incontenence, I posted this earlier elsewhere: http://www.healthboards.com/boards/showpost.php?p=3980637&postcount=23. A tiny little better each day, but a year is a long time when you are going day-by-day, so it seems very SLOW. Regarding impotence, I understand there to be a little greater person-to-person variation here than with incontence, but as I mentioned earlier the pre-surgery capabilities tend to strongly influence the post-surgery outcomes...generally younger men fare better. In both of these situations, it's not a "1" or a "0"...well, one might say it starts at a "0", but there is an incremental amount of progress along the way. You might estimate that for a 1-year recovery, there is about 1/365th improvement per day...hardly noticable, but some improvement nontheless. Can be frustrating. You've probably seen other posts on this board with some who are very frustrated with it. Some people do not fully recover, but I have good odds in my favor. Let me know if you want more details. I'm still in the middle of this, but moving forward.

From your own experience, is their any advice you can give me on how to help him cope with his diagnosis- I'm trying to be as optimistic as possible, while still considering it serious enough to not delay treatment. I'm worried that waiting until after October is risky. His urologist told him it is a slow growing cancer, however, he has a Gleason of 6, 4 out of 6 cores were positive for cancer, ranging from 15%- 30%, and his last PSA reading from April was 5.03.

Repeating my comment above. Any other readers out there that can speak knowledgably about the mechanisms of growth/acceleration?

The reading before that was 3.7 in july of 2007. I know you are not a physician, but are there any recommendations you can give as far as his upcoming appointment with his urologist? things to mention, request, etc.

I think that this whole question about how long a delay in treatment is possible would be appropriate. With a doctor fully versed in the knowledge of your upcoming delivery, I'm thinking that you might open a discussion about a quasi-Active Surveillance for a year or so, maybe more. On the other hand, I had my surgery 3 months after my biopsy reading results. And on yet another point, I read that people undergoing radiation treatment for PC hardly feel the impact on in their day-to-day...again, perhaps others will comment.

This paragraph in orange text inserted later as a post-script: Also be sure to discuss the symptoms of frequent/urgent need to pee. I believe in an earlier post you said this wasn't previously discussed. Also, in relation to possible delay, Jim previously posted you about your husband's favorable PSAV (velocity); this is one of the key indicators about whether one needs to act less or more quickly. Refer back to that old post for a refresh.

I really feel for your situation with so much at once but as I previously said, if you are at all like me you will SOON (not yet, but soon) feel like you are gaining confidence as you move toward, and make, a treatment decision.

Thanks kcon.
You're welcome. Hopefully you'll get some other good inputs here.

best wishes...

Last edited by kcon; 06-08-2009 at 08:25 AM.

 
Old 06-08-2009, 05:43 PM   #15
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Re: My Husband, 43 yrs. old was just dx with prostate ca, gleason score of 6

Hi again sbear,

kcon has already done a great job of responding to your concerns in this post, so I'll just add some comments to an excerpt of your post #13 in green where you might be helped by other thoughts or for emphasis of what he said. Jim


Quote:
Originally Posted by sbear1102 View Post
... I'm thinking of having him get a PAP test,

Great plan! I have had one, but it was well into my therapy, and it might have been reassuring if I had had one near the start back in 1999. The PAP at "baseline" is a very handy piece of information to have!

bone scan, and pelvic scan

kcon (response to your #13) and I are both really doubtful about the value of these in your husband's case. Here's some information you probably do not know yet: neither scan is much good at catching very small metastases, which is highly likely to be the worst case now for your husband, with the normal case being no mets at all! The bone scan is more sensitive than the CT scan, but it still takes about 10% of cancer in an area of bone for it to show up as possible cancer in the scan. If you have 8% cancer in that area, for example, it is likely not to show up at all. The CT scan takes a rather large tumor in the lymph nodes, typically, to show up at all. That means you can have a fair amount of cancer in a node, but it won't show up on the scan unless it is large enough. Again, that's really unlikely in your husband's case.

Another aspect of deciding about the worth of these scans in your husband's case is what difference results would make in decision making. If your husband and you would want some kind of local therapy even if the scans were positive, with the reasonable objective, for instance, of "debulking" the cancer, then that diminishes the potential impact of positive scan results. On the other hand, if you both would reject surgery but turn to radiation if one of the scans were positive, that outcome of a positive scan, though highly unlikely, would enhance the worth of the scan results.

By the way, both these scans are excellent staging tools for cases with high risks of metastases, like my own case. However, even though I started with a PSA of 113.6 (flared to 125), a Gleason 4+3=7, all biopsy cores positive and most 100% cancer, perineural invasion, and stage 3 with suspected involvement of the seminal vesicles, both my bone and CT scans were negative. That's not that unusual, even in high risk cases.


as well as another PSA test (I've seen on here and elsewhere that it can spike in a matter of weeks).

PSAs are not a big deal to do and not expensive, and one now would help confirm what appears to be a fairly low-risk trajectory or, if a clear increase occurred, call for added urgency. The test should be done at the same lab with the same kind of test, and your husband should follow the usual preparation routine. However, a spike in a matter of weeks would be highly unusual in view of the reasonably low PSAV to date. Also, spikes are usually due to infection. Spikes due to prostate cancer, such as can sometimes be associated with PSA doubling times as short as a couple of weeks, are rare.

Unlike breast cancer patients who have no equivalent of the PSA, we prostate cancer patients have this wonderful blood test that is an excellent indicator of the status of the disease once we are diagnosed, provided our Gleason Score is not in the 8 to 10 range. (In very unusual cases, it can be unreliable with a lower Gleason, and my impression is that fairly often it is still fairly useful in the higher 8 - 10 range.) This is worth repeating: while PSA is not all that great a sign of prostate cancer since it doubles in brass in detecting BPH and infection, PSA is really good as a marker once we have the disease. All this means it is quite unlikely that aggressive prostate cancer is going to be able to make a big move on us that is undetected along the way.

Your husband could also add the PAP test at the same time as well as a 25-hydroxy vitamin D test. It's unlikely he's deficient in vitamin D at his age, but it's worth checking in my opinion because so many of us prostate cancer patients are deficient in vitamin D.


... An appointment for a second opinion is scheduled with a specialist at the end of this month. My husband thinks it is ok to delay treatment for awhile, until at least beginning of next year but I feel like, to refer to another thread on this board "he is carrying a rattlesnake in his pocket".

I'll just underline kcon's response about the rattlesnake for emphasis. IF you both decide to hold off on treatment, or even if you decide to go ahead, he would be very likely to increase his odds of success by implementing lifestyle tactics involving nutrition/diet/supplements, exercise and stress reduction - the last no easy task with all you both have on your plate at this time.

While the evidence is not yet conclusive for these tactics, it is pretty persuasive, enough to have motivated many of us to radically change our diets, to start popping a few pills, to pump some iron, and to log some miles on the treadmill or at the track. For a quick orientation take a look at the thread I started on 3/6/2008, "Nutrition & lifestyle tactics - books, resources, and a quick summary." I've also initiated threads on some elements of a lifestyle program including lycopene &/versus soy (12/8/2007), soy (12/15/2007), selenium (1/17/2008), pomegranate juice and extract (4/22/2008), selenium (SELECT Trial - 10/28/2008), soy and pomegranate (1/25/2009), a long response about vitamin D in a thread on calcium and vitamin D (5/23/2009), exercise (3/5/2009), and chondroitin (TO AVOID! - 3/7/2009).

Has your husband cut out red meat, pork, and flaxseed (or canola) oil yet, all of which look like bad bets for prostate cancer patients? (As you may know, flaxseed oil may well be helpful for women and for people with cardiovascular issues, but the evidence looks bad for consuming it if you are a prostate cancer patient. ) Unlike many cancers, for prostate cancer sugar does not seem to be a significant adverse factor in our diets, unless we have very aggressive cases. That's probably why many studies show that diets with ample fruit and some red wine appear to be beneficial to prostate cancer patients. Saturated fat appears to be the culprit that provides most of the energy for prostate cancer.

Is your husband taking a statin drug? Apparently there are very few significant muscle problems for those taking those drugs, and they appear to substantially reduce the risk of lethal prostate cancer, especially when taken for at least three years, as well as giving the well-known cardiovascular benefit, of course. Taking 50 mg of Co Q 10 helps eliminate a minor side effect when taking a statin.

It is possible that the green tea, pomegranate juice or extract, vitamin D3 etc. will be enough to counteract your husband's prostate cancer, slowing it down, or stabilizing it, or even decreasing it. His response to a lifestyle program in fact has value in assessing the seriousness of the case, helping indicate whether the case is mild or not. It's quite possible that your husband's PSA may decline! This is like what the allergists do when they "challenge" a patient with various possible allergens to see how the patient responds. In this case, the challenge is to see what happens to the PSA. However, while the lifestyle tactics probably help almost all of us, many of us will need something more. Also, patients do not have to do all the tactics in the lifestyle programs; the more they can do, the better.

Taking finasteride or Avodart is another option. Finasteride has mild proven effectiveness against prostate cancer, and it is highly likely that Avodart will also be proven to have similar impact. We should know within the next few weeks or months as two major clinical trials are due to report. For most of us, these drugs are virtually without negative side effects, unless you count growing more hair in male-pattern baldness areas as negative, which most of us don't. In the quite unusual case that a patient does experience diminished libido, erectile function or breast irritation, these are apparently all highly reversible when the medication is stopped. Because both drugs reduce the size of the prostate by about a third, ejaculate will be somewhat reduced. Because of this and possible other affects on trying to have a baby, the leading doctors I follow advise men to bank sperm if they and their wives want more children.


He is so busy with work, we were planning on moving, and a baby due in October, everything all at once.

This probably sounds nuts, but do you think you both could work in a short period of meditation each day? It could help.

...I'm trying to be as optimistic as possible, while still considering it serious enough to not delay treatment. I'm worried that waiting until after October is risky. His urologist told him it is a slow growing cancer,

My layman's estimate is that your husband's cancer would not grow much in the next few months and would be quite unlikely to cross any key thresholds. As related above, you may even find that lifestyle tactics are able to knock the cancer back a bit or halt it in its tracks.

however, he has a Gleason of 6, 4 out of 6 cores were positive for cancer, ranging from 15%- 30%, and his last PSA reading from April was 5.03. The reading before that was 3.7 in july of 2007.

Those exact PSA scores are even better than what I had indicated as the likely worst case earlier - an increase of just 1.33 in about two years. I really think you would find some reassurance if you would take a look at the Dattoli groups' papers on a PSA velocity of up to 2.0 or greater in the year before diagnosis. While 2.0 turned out to be the most productive "cut point" in the studies, the lower the better, and your husband's annual PSAV appears to be fairly low, near the 0.5 per year mark.

The Gleason Score is on the encouraging side, as are the percentages of cancer in each core. While having more than 50% of the cores positive is a concern, it's quite possible that no more cores would have been positive if 8, 10, 12 or more cores had been sampled. With 6 cores sampled, just one positive core is making the difference between higher than 50% positive (4 of 6) and 50% positive (3 of 6). Usually, there seems to be less concern by doctors at the 50% point. You have good reason to be concerned and motivated, but you do not have to rush wildly into this.


I know you are not a physician,

"NOT" for me and most of us, unless you count degrees from the School of Hard Knocks.

but are there any recommendations you can give as far as his upcoming appointment with his urologist? things to mention, request, etc. Thanks kcon.
I believe daff recommended this before, but its worth making sure the urologist will use numbing agents and other anesthetics, and also that he will give a drug to prevent infection, such as a few Cipro pills. You might also want to ask about the advisability of taking finasteride or Avodart, especially if one or both of the Avodart trials for prostate cancer have been reported. If either of you is still interested in a bone or CT scan, you might want to ask the odds of a positive result for a case lie his (probably less than 1 in 200, as I recall) and how either negative or positive results would affect decision making in your husband's circumstances.

Take care,

Jim

 
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