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Old 12-03-2008, 07:32 PM   #1
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My husband was just diagnosed with Prostate Cancer.

He was referred to a urologist who found that my husband's prostate was not smooth on one side. His PSA was drawn and it was low but the Dr still did a biopsy. The biopsy is positive for Cancer. My husband has to have a bone scan and a CT scan this Friday. It sounds like the Urologist wants to remove the prostate. My husband is not so sure he wants that. I have no idea what his PSA level is nor do I know his Gleason scores. My husband is 49y/o. Any advice would be greatly appreciated. Thank you!!

 
Old 12-03-2008, 10:32 PM   #2
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Re: My husband was just diagnosed with Porstate Cancer.

Trace, Your husbands Urologist may be right but be sure to get at least 1 more opinion from another Urologist and do a lot of research. There are a lot of ways to treat PCa but you and your husband need to decide which is best for him. Good luck on your journey.

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Old 12-04-2008, 04:54 AM   #3
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Re: My husband was just diagnosed with Porstate Cancer.

Quote:
Originally Posted by Trace212 View Post
... I have no idea what his PSA level is nor do I know his Gleason scores. My husband is 49y/o. Any advice would be greatly appreciated...
While it's obviously a shock to get this news, there are many very good alternative treatments. You will need to learn more so you can better understand what the doctors tell you- it is not easy to take it all in without having done some reading first. While this board can help, I'd suggest you immediately get a couple good books on prostate cancer and learn what your husband's PSA and Gleason scores are.

One very good book is a recent one written by Dr. Patrick Walsh. Besides some good education, you'll learn what questions to ask and you'll get a summary of different treatments (Walsh is a noted surgeon, so the emphasis is on this form of treatment).

Urologists, if I may generalize, usually recommend surgery- as that's what they do, or brachytherapy, in conjunction with another doctor. And for someone as young as your husband, that may be the best approach. But you really need to understand the pros and cons of all the well-known treatments, including the latest radiation ones. I chose proton beam radiation (in Jacksonville, FL) as that's a highly targeted form of radiation.
If you want a book that discusses that, it's "you can beat prostate cancer" by Robert Marckini.

There's so much to learn at the outset, but it's not an impossible task. The cure rates for various treatments seem to be very similar, but the side effects are different in type and severity. Your husband's PSA and Gleason score are very important in figuring out what to do. Again, I'd say that you
both need to do some good research and get involved in the process.

Hopefully you'll hear from others with their thoughts too. And it would be good to get a summary of your husband's health, PSA, and Gleason scores as well. That does play into the various choices.

 
Old 12-04-2008, 11:03 AM   #4
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Re: My husband was just diagnosed with Porstate Cancer.

Quote:
Originally Posted by Trace212 View Post
...It sounds like the Urologist wants to remove the prostate. My husband is not so sure he wants that. I have no idea what his PSA level is nor do I know his Gleason scores. My husband is 49y/o. ...
Hi Trace,

With daff and our other posters. I would like to welcome you and your husband to this club of those directly involved with prostate cancer that none of us wanted to join. While the disease can be quite a burden, at least for a while for many of us, the members of the club are great people!

Prostate cancer has some built-in blessings and curses for patients and their wives, especially for those who have just faced the diagnosis. Among the blessings: it is slow growing for most of us, allowing us time to make a sound treatment decision if we will just put in the effort, and may even allow us to defer any treatment indefinitely while we work to counteract the cancer and monitor it diligently; there is also an abundance of information about it, and there are multiple treatment options, as daff indicated. Among the curses: partly the same as the blessings - the abundance of information and options - makes it hard to get a handle on what to do! This isn't like getting your appendix out where you are able to find a competent doctor easily and fast and have the routine surgery performed while you leave the thinking to the doctor without having to learn anything yourself.

In addition to the books already mentioned, the book I consider the best resource is "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum and Donna Pogliano (who is the wife of a prostate cancer survivor and a very active prostate cancer educator in her own right). I like it for many reasons, including the objective approach, outstanding expertise, clear organization, clear writing, outstanding graphics and images, index, sources for those who want to dig further, and forms.

Some of those forms in the Primer are ideal for you and your husband at this stage for recording key information. Here are some absolutely key points to find out - call the doctor, and get copies of reports if you can: the latest PSA and Gleason (as daff mentioned), plus the "stage" (T1, T2b, T2c, T3, etc.), and previous PSAs, especially during the year or two prior to diagnosis. This is like name, rank and serial number information. It's so key to everything else. Of course, ask for copies of the CT and bone scan reports as well. My understanding is that you are legally entitled to this information, though Connecticut law may be different. Having it will aid your understanding and will facilitate any communication with other doctors.

Here are other very important pieces of information to get: details of the Gleason (3+3=6, or 3+4=7, or 4+3=7, or 3+4+5 (if what is known as a tertiary Gleason Grade 5 was recorded - a slowly growing but important trend), etc.), including who reviewed it, and whether they are expert in reading prostate cancer biopsies and determining Gleason Scores or are general pathologists without special expertise in prostate cancer. Find out as much as is available about how many biopsy cores were taken, which ones (by location in the prostate) were positive, as well as the number that were positive and the percent of total cores that were positive, what the Gleason Score was for each if possible, and what percentage of each positive biopsy core was cancer.

There is other information that is useful, probably more useful than the bone and CT scans that are so rarely positive for low-PSA patients like your husband (assuming that his Gleason Score is not high). While your husband is fairly young for prostate cancer, decreased bone density is virtually epidemic among prostate cancer patients, and the vitamin D3 level (25-hydroxy vitamin D is the test) is often much lower than for our age-group peers who do not have the disease. If that score is low, a bone mineral density scan, which is not the same thing as a bone scan for cancer, is probably wise, but it may be tough to get insurance coverage. Hopefully your husband is young enough that his skin is still making all the vitamin D that he needs for the warm months plus a stored supply for the cold months in Connecticut when the sun's rays are too slanted to enable the skin to make much vitamin D. The Primer gives information about other tests as well. Vitamin D deficiency appears to contribute to development of several major conditions and diseases, including prostate cancer.

I want to join daff's choir about getting a second opinion, third opinion, etc., hopefully including a second pathologist opinion if the first biopsy review was not done by an expert. When you go to almost all urologists, per a study, you will get a recommendation of surgery for prostate cancer. Same thing for radiation doctors. Learning for yourselves and consulting with several doctors, the more expert in PC the better, are the ways around this to get the best treatment for your husband. There are several forms of surgery and several forms of radiation available, in addition to cryo surgery, emerging HIFU, and other approaches. Also, and this may be key if your husband has a low risk case, active surveillance with deferred therapy may be a sound choice and the one your husband and you like best. While most doctors would say he is too young for that and should have treatment, perhaps the world's leading expert in active surveillance for prostate cancer - Dr. Laurence Klotz, feels that patients of any age should be eligible provided they have the right case characteristics and are monitored appropriately.

This is loading you up already - part of that information burden mentioned above - so I better stop for now. But before I do, I want to mention that there are things you can do now: diet/nutrition/supplement, exercise, and stress reduction tactics your husband can implement. These tactics seem to help us defeat prostate cancer. (I started a thread about those tactics entitled "Nutrition and lifestyle tactics - books, resources and a quick summary," back on March 6, 2008. That thread is locked for new posts I believe, but you can still read it.

Take care and good luck to you both in coping with this ,

Jim

 
Old 12-04-2008, 04:13 PM   #5
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Re: My husband was just diagnosed with Porstate Cancer.

Thank you very much for your advice everyone. Yes it is a lot to accept at once but I am trying to learn as much as I can so we can make the best decision for his treatment. ( removed ) I am not real familiar with PC and all of the treatments. I told my husband to get his PSA levels and the pathology report. We will be picking those up tomorrow after his scans. My sister works at a hospital near us in the cancer research department so she is able to help explain the Gleason Scores an pathology reports. We made an appointment for a second opinion already. The group we have the second opinion with does not perform the robotic surgery. I thought it would be good to get an opinion from them as well. If they say go with the robotics then we just may do that.

My biggest concern is that it is not isolated to the prostate. I pray it is because I know then he is better off. I know it will be a tough road but it will be a better prognosis. It is nice to have this board for advice and support. I truly appreciate your help and kindness. I am sure my husband will pop in also. He is watching tv now with his son.

Last edited by moderator2; 12-04-2008 at 05:17 PM. Reason: please read our posting rules so that you will not be posting in violation of them

 
Old 12-04-2008, 04:54 PM   #6
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Re: My husband was just diagnosed with Porstate Cancer.

Quote:
Originally Posted by Trace212 View Post
...
The group we have the second opinion with does not perform the robotic surgery. I thought it would be good to get an opinion from them as well. If they say go with the robotics then we just may do that.....
Do you know what it is that the second opinion people do? It's such a major decision to make with as limited information you seem to have right now. I realize not everyone has a need to go overboard in researching and thinking about the various options, but it seems to me that you need some time to reflect on the recommendations and do some reading before going with whatever is suggested.

If your husband has a very aggressive cancer, which would be evidenced by a combination of the physical exam, PSA progression, Gleason score, number of cores that were positive in the biopsy sample-- then maybe a quicker decision is required as it takes some time to schedule treatment. If not super-aggressive, you may have enough time to reflect on the alternatives, unless you are both very passive and just want to do "something" and get it over with (this wasn't how I felt, but I realize that many others just want to accept what the doctors say).

Doctors unfortunately do have their own biases and they tend to recommend what they practice. Even with surgery, there are considerations as to how many procedures your doctor has performed. For robotic surgery, you can find doctors that have the experience of having performed 1,000 or more procedures. Or whether you want to choose open vs robotic surgery (there are pros and cons to each). There's so much ground that can be covered in choosing- and one of the things reading a book or two will do is help frame some questions.

Sorry if I sound like I'm lecturing... I just know that I started out feeling I needed to make a decision and scheduled a robotic procedure, but it wasn't too long afterwards that I felt I wasn't being given straight-talk on the alternatives. So I cancelled that initial surgery date and ended up as a self-referral to get treated with proton beam radiation. But I didn't do that without a lot of research-- I spoke with many who had had the treatment and had a personal consultation.

Whatever you choose needs to feel right for you and your husband- and you may end up doing exactly what is recommended now. But if you do it without understanding the other options and the possibilities of side effects of each, later on you may wish you had been more proactive.

 
Old 12-04-2008, 05:08 PM   #7
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Re: My husband was just diagnosed with Porstate Cancer.

Hi again Trace,

I'm inserting some comments in green.


Quote:
Originally Posted by Trace212 View Post
... I am not real familiar with PC and all of the treatments.... My sister works at a hospital near us in the cancer research department so she is able to help explain the Gleason Scores an pathology reports.

Help from your sister will be a huge boost in getting up to speed and sorting things out. By the way, a healthy prostate cancer diet is also a healthy diet for cardiac health, though keeping the dose of vitamin E at around 200 or below is wise from a cardiac standpoint, from what I understand. I suspect you have heard the same thing. Also, a lot of us are now taking a statin drug not so much for its cardiac benefits but because it also cuts the risks of metastatic and lethal prostate cancer by a lot, especially when a statin is taken for three years or longer. Have you heard about that? I think it has only been known for several years - fairly recent.

So much is happening in prostate cancer treatments and research these days. Over 5,000 papers were published in medical journals in just the past year. Please feel free to bounce ideas of us, then you can check in with your sister, and vice versa.


We made an appointment for a second opinion already.

I'm really glad to read that.

...

I am sure my husband will pop in also. He is watching tv now with his son.
Good for him! Prostate cancer is just a part of our lives; it is not our identity and does not define us. (Sometimes my wife would disagree as far as my own involvement. )

Take care,

Jim

Last edited by moderator2; 12-04-2008 at 05:16 PM. Reason: please do not quote posting rules violations so that you are not making more work for the moderators

 
Old 12-05-2008, 05:15 PM   #8
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Re: My husband was just diagnosed with Prostate Cancer.

He had his bone and CT scans done today. What a long day that was. I have to tell you I didn't realize it would take so long. We didn't read up on the procedures and the MD didn't give my husband any info on the procedures. ( removed ) I was not familiar with a bone scan and how it is done until today. So now we wait for those results. We have copies of the scans already. We were supposed to pick up his blood work results and pathology report but it was in a different office. Now they are being sent to us

Daff I am not sure how the urologists that we are seeing for a second opinion treat prostate cancer. I will have to look into that a bit more. I will also buy the book you suggested. My husband is still a bit overwhelmed by this whole thing. We are both trying to educate ourselves but he is having a harder time reading information on the subject. I will read the book and share it with him. Thank you for all of your information. I really appreciate it.

IADT Thank you also for your information. My husband already eats a very healthy diet. I did not realize statins were being used for cancer patients. That is very interesting. Those are not without side effects though. A lot of people can't take statins.

Last edited by moderator2; 12-05-2008 at 05:27 PM. Reason: please read our posting rules so that you will not be posting in violation of them

 
Old 12-05-2008, 06:53 PM   #9
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Re: My husband was just diagnosed with Prostate Cancer.

Quote:
Originally Posted by Trace212 View Post

...Daff I am not sure how the urologists that we are seeing for a second opinion treat prostate cancer. I will have to look into that a bit more. I will also buy the book you suggested. My husband is still a bit overwhelmed by this whole thing. We are both trying to educate ourselves but he is having a harder time reading information on the subject....
Hopefully it will be easier once you give yourselves a little time to digest all that's being thrown at you. While it's important to act expeditiously in many cases, there is time to survey what's out there. You really don't need to come to a complete understanding in a matter of days. I think I took a couple months before getting fully comfortable with the treatment I eventually chose.

So try to do some reading and write down notes as you go- that way when you meet with docs you'll cover what you need to. Several of the books on prostate cancer will help educate you- and you're not competing in a race to see how quickly you can make a decision. It does take some time and thinking, but you'll get there, just as we all have.

 
Old 12-06-2008, 08:11 AM   #10
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Re: My husband was just diagnosed with Prostate Cancer.

I hope we have time to decide so we make the best decision we can. We are just worried about the results of the scan.

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Old 12-06-2008, 10:22 AM   #11
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Re: My husband was just diagnosed with Prostate Cancer.

Quote:
Originally Posted by Trace212 View Post
I hope we have time to decide so we make the best decision we can. We are just worried about the results of the scan....
Assuming the scans were just done to be overly cautious, the results are most likely not going to show any problem there. And again, unless it's a high PSA, high Gleason score-- you should have a good amount of time to make a decision. If you want to post what the PSA and Gleason scores are when you learn- we can add to the posts made to date.

 
Old 12-07-2008, 12:45 AM   #12
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Re: My husband was just diagnosed with Prostate Cancer.

I would get at least two more opinions. Just to give you an example, I had two lumps in my testicles. They were always getting tender and hurt. They had become a chronic source of pain and discomfort. It got to the point where pain killers didn't help. None of the doctors thought it was cancer because of the location. One Urologist wanted operate and remove them. Another wanted to operate on the blood vessels leading to my testicles. A third gave me antibiotics and 1600mg anti inflammatories (8 Aleve a day.) I choose the third one and that solved the problem. That was 8 years ago. What scares me is that I might have had needless operations. There are so many new treatments now that removing the prostate seems to be the last resort now a days. Cryosurgery, freezing the prostate, HIFU heating the prostate and Proton Beam are the latest technology to kill cancer cells with a lot less side effects. HIFU has been done in Europe, Canada, Mexico and Japan with good success for 10 years. The FDA has not approved it yet in the USA but clinical trials are going on now. I know sometimes it takes a long time to get in to see agood doctor, but I'm sure if you tell them your husbands condition, they would see him right away. Good Luck

 
Old 12-07-2008, 06:02 AM   #13
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Re: My husband was just diagnosed with Prostate Cancer.

Quote:
Originally Posted by csyleen View Post
....There are so many new treatments now that removing the prostate seems to be the last resort now a days. Cryosurgery, freezing the prostate, HIFU heating the prostate and Proton Beam are the latest technology to kill cancer cells with a lot less side effects....
While I agree that more than one opinion is useful, at this point we don't know the PSA or Gleason score associated with this cancer. We obviously have our own opinions on what's out there now, but to lump proton beam treatment, a fully-approved form of radiation having been done in the U.S. for nearly 20 years, with cyro and HIFU- both of which have potentially severe side-effects- is not how I see it.

Cryo can work but it will likely mean impotency and HIFU requires the patient to travel outside the U.S. (and side effects include incontinence and impotency as well, at a higher level than many other available treatments).

Trace212 is just now starting to learn about the basics of prostate cancer, so probably needs to get that done. It's certainly reasonable to read about HIFU and cryo at some point, but I'd say that doesn't need to be high on the list quite yet.

 
Old 12-07-2008, 07:02 AM   #14
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Re: My husband was just diagnosed with Prostate Cancer.

All of this is overwhelming to say the least and I know I am just getting started on all the research. I am going to buy "You can beat prostate cancer" today. My sister sent us info about PC yesterday. My husband told me he is going to let me decide what he should do. I think he is too overwhelmed by this whole thing right now. He has been reading some stories on another site and had to stop reading. He just couldn't deal with it. I need to be strong and as informed as I can be to help him make the right decision. I think we are going to see two more MDs after we see his urologist.

He is most worried about the ED and the incontinence. I can't say I blame him. We want him to be treated for the cancer but we want to prevent those two side effects if at all possilbe. I know most everyone has that goal in mind. I just want him to survive but I know he will be miserable if he ends up with those side effects.

I hope to have the path report and PSA levels on Monday. I was hoping they would be in the mailbox yesterday but no such luck.

Thanks again for all of your help. I really appreciate it.

 
Old 12-07-2008, 08:15 AM   #15
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Re: My husband was just diagnosed with Prostate Cancer.

Quote:
Originally Posted by Trace212 View Post
...
He is most worried about the ED and the incontinence....
I hope to have the path report and PSA levels on Monday.
...
It's good your husband has you to sort all this out. Hopefully he'll be able to
address it himself once he learns that many, many of us go through this and the outcome is very often excellent. The two side effects are the ones most of us worry about. One thing in your husband's favor with respect to ED is his young age. When you do some reading, a lot of this will likely make more sense to you. (You'll have to weigh what's said in each book, as the tendency is for an author/doctor to overstate the case for what he's recommending and understate the benefits of other treatments-- so a urologist that does surgery will guide the reader to why that's best and a recommender of radiation will guide the reader as to why that's best. This is the same for meetings with doctors-- it can be frustrating because there's not one overwhelming choice for all, even though a specific recommendation may make it seem that way.)

I'll write again after you post PSAs, Gleason score, and stage of cancer (if that's reported to you). If you know how many cores were biopsied and of those, how many had an indication of cancer (and what percent of the core had the cancer), that would be good too, as there are predictive tools available where you can plug in that info and get helpful feedback. More on that later...

 
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