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Old 04-05-2009, 06:28 PM   #1
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Husband just diagnosed

Hello everyone. I'm very new to this type of chat boards but I'm giving this a try. This past week has been terrible as we just found out that my husband's biopsy has come back positive for cancer. Okay so here is the history. My husband is 50 and in January our doctor suggested it was time for some blood tests! His PSA came back at a 5 so she sent him for a second test which again came back in the 5 range. With the second test high she sent him to a Urologist. The wait wasn't too long so in February he had an exam and the doctor didn't feel any enlargement and said it felt normal but seeing as my husband's father had had Prostate Cancer 17 years ago that it best to have a biopsy done. Again the wait wasn't too long so on March 12 he had the biopsy. What a terrible things that is!

So April 1 was the big day. Here are his results. Of the 12 samples #6 left Apex had cancer with a Gleason result of 6 and the sample was 25%. The right Apex showed suspicious cells I think it also said ASAP which I read some place meant something! They gave us a whole bunch of books and stuff to read and another appointment on the 15th when he will spend more time with us explaining procedures etc so we can decide what to do. Now is when we want to decide not in two weeks! I'm really getting tired of reading and I'm so confused and getting more worried. I've been reading this board and we've found it helpful but still can't decided. My husband really doesn't want to do radiation so we are trying to decide between radical open or robotic. What we need to find out is the wait time and do we have time to wait. The doctor had said in passing that the wait for robotic could be 3 to 6 months because there are only two in Ontario. From what I have read this is really the best choice as there is less chance of nerve damage. But then I've also read that if you had erection problems before the surgery then you have an even less chance of erections after even if the nerves are saved.

Should we even do anything right now and do watchful waiting. I hate this idea and I think he does too. The problem with the robotic is we have to go out of town (3 hours away) and that means that I don't have any support but really that's okay I'll get through it plus I'm not the one having surgery. Oh my I'm so worried. First it's the cancer then everything else that might or will happen. My husbands worst fear is the thought of 2 weeks with a catheter. So any thoughts any help. Anyone out there with the same levels. Anyone know wait times in London?

 
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Old 04-05-2009, 07:15 PM   #2
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Re: Husband just diagnosed

Hi,

Your husband's cancer sounds minimal at this time. So, inhale a deep breath and exhale! You have time to explore your options. This board is a great way to explore opinons and experiences.

I was 48 at the time of my prostatectomy (RRP). I had a very experienced surgeon perform the surgery and erections are back, cancer is gone, and I had no problems with continence. I owe this to the experience of the surgeron.

I asked this group before about the robot procedure and erections and did not get much response back.

I hope others will offer you advice to.. You are not alone and things will be ok. It looks like it is early.

Best wishes

 
Old 04-05-2009, 07:49 PM   #3
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Re: Husband just diagnosed

Quote:
Originally Posted by CM63 View Post
... Now is when we want to decide not in two weeks! I'm really getting tired of reading and I'm so confused and getting more worried.
...
Sorry you have to join this little board, but you are going to get so much good info from it. And while this is all scary right now and you want to make a choice of "something" just to feel you're being proactive, I'd say to step back and cautiously review the alternatives. I'm not a doctor, but my guess is that there is no immediate need to choose. It's really valuable to review the options (and not necessarily reject radiation) and speak to as many people as you can. And read the books. And question the doctors, as they usually have very definite biases.

I was never a fan of radiation, and thought, with my Gleason 7 that I would do robotic surgery. After much questioning and discussions with former patients, I chose proton beam radiation. I've recently been doing some reading on the subject of delaying immediate treatment where the cancer is not aggressive nor near the edge of the prostate. I've mentioned something I read on this board, an article in last Tuesday's (March 31) Wall Street Journal, where a new 3-D mapping methodology is now available to show the location of the cancer. If it's small and well-contained away from the
edge of the prostate, chances are very good that no immediate action is needed at all. You might want to read that article.

While it obviously doesn't seem like good news that you've discovered this when your husband is so young, it really is. At least you have realized what's going on, and can take steps to watch it or deal with it. Please continue to read some of the past posts on this board, and continue to ask questions.

 
Old 04-06-2009, 10:56 AM   #4
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Re: Husband just diagnosed

Quote:
Originally Posted by CM63 View Post
...
So April 1 was the big day. Here are his results. Of the 12 samples #6 left Apex had cancer with a Gleason result of 6 and the sample was 25%. The right Apex showed suspicious cells I think it also said ASAP which I read some place meant something! They gave us a whole bunch of books and stuff to read and another appointment on the 15th when he will spend more time with us explaining procedures etc so we can decide what to do. Now is when we want to decide not in two weeks! I'm really getting tired of reading and I'm so confused and getting more worried. I've been reading this board and we've found it helpful but still can't decided. My husband really doesn't want to do radiation so we are trying to decide between radical open or robotic. What we need to find out is the wait time and do we have time to wait. ...

Should we even do anything right now and do watchful waiting. I hate this idea and I think he does too. ... Oh my I'm so worried....
Hello CM63,

Your reaction to your husband's cancer puts in words what so many of us have felt - basically recoilling from the very idea of having cancer and wanting to get rid of it and out of your lives as soon as possible, not even wanting to have to learn another fact about it , about its treatment options, and about complications and side effects of treatment!

Here's are a few facts that may offer some comfort: you have only been facing the diagnosis for less than one week, and most of us find that we regain our balance and can better put things in perspective as days pass. It may take a few more days though, or even weeks, or a month or so. It should help if you and your husband realize that his case has low risk features, that prostate cancer is usually a slow growing disease, and that Canada, especially including Ontario, has some superb resources for combatting prostate cancer.

I too want to welcome you to this board that all of us wish we would never have had a reason to use. But it's a good board, as you probably already know, and you've already had some helpful responses. A word about me - like almost all of us who participate here, I have had no enrolled medical education, but I've learned a lot in coping wih my own challenging case.

Here's what strikes me about the low risk aspects of your husband's case: a fairly low PSA of 5, well below the threshold of above 10 that suggests higher risk; a Gleason Score of 6, which is the most common score for patients diagnosed these days, a score that suggests a lower level of aggressiveness; a 12 core biopsy, which is a pretty good probing of possible trouble sites; a finding of only one positive core of the twelve, though another had some suspicious cells - even up to three positive cores of twelve would not raise the risk much and your husband had only one; only 25% cells positive for cancer in the one positive core, well below the level of 50% positive that would suggest some higher risk, and with added emphasis here since no cancer was found in any other core; and a normal DRE. Overall, if you have to have a positive diagnosis, these are the results you would want to have!

Here is the only elevated risk characteristic I see: location of the cancer in the left apex. That suggests some added risk because the membrane that surrounds the prostate - the prostate capsule - is thinner at the apex, so it is a bit easier for cancer to penetrate the capsule there. It might be useful to get a saturation biopsy to see the exact extent and location of the cancer, or to get a color Doppler ultrasound guided biopsy from an expert (may not be any in Canada, though there is one in Michigan or Minnesota - Dr. Fred Lee), but with such an overall low-risk case and an already known location risk, I'm not sure that doctors would think you would be getting much added useful knowledge from one of those staging procedures. Still, it could be reassuring. (I'm hoping to read those Wall Street Journal articles on saturation biopsies that daff has mentioned.)

I hope you, and perhaps your husband, can overcome your abhorrence of this disease, or at least tone it down enough so it doesn't interfere with your decision making and basic peace of mind. That may be a difficult challenge for you, as your post suggests you like to be able to make decisions quickly and get issues behind you. Here are some points that may help, in addition to the slow-growing nature of the vast majority of prostate cancers and the low-risk characteristics of your husband's case.

First, by the time prostate cancer is discovered, most of us have had it for years. In fact, quite a few prostate cancers are so slow growing that it takes more than 100 years for the tumors to double in size. That means we already know how to live with cancer; we just need to learn how to live with knowing we have it.

Second, we are not "abnormal" when we have prostate cancer - "unhealthy" yes, but not abnormal. When very detailed autopsy exams were done on prostates of men with no signs of prostate cancer at various ages, researchers found that about 50% of men in their 50s had the disease, and that percentage increased to virtually 100% for men who were about 100 years old, with the percentage increasing about 10% for every added decade of life. That means that a high majority of men have the disease but are unaware of it, suffer no ill consequences during their lifetimes, and die of something else. It's the other guys, those who truly do not have the disease, that are abnormal - meaning not "typical", as we get older.

Third, while the "big C" scares us , other health threats are or should be taken more seriously. (Take appendicitis: untreated, that can kill us in days. But we are comfortable living with an appendix because we know it can be taken care of with high effectiveness and efficiency if that becomes necessary. It may help if you can think of prostate cancer more like that.) Dr. Charles "Snuffy" Myers, a leading medical oncologist specializing in prostate cancer, compares a diagnosis of prostate cancer to the canary in the mine that dies because of bad air: it's a warning that other things may be amiss. Heart disease and diabetes are prime suspects. You and your husband may have extra worry because of whatever experiences his dad had with prostate cancer seventeen years ago. However, this is no longer "our father's disease." Prostate cancer technology from prevention, to diagnosis, to case assessment, to treatment, to follow-up have improved by leaps and bounds since then. Survival is much better, and complications and side effects are becoming milder, on average.

There are at least two options open to your husband that will completely or mostly preserve his and your present quality of life: active surveillance and one-time advanced hormonal blockade. The latter is still highly investigational and involves triple hormonal therapy with follow-up maintenance, so I won't go into it unless you ask; I know a lot about it because I've been on the intermittent version of that therapy (not one-time) for over nine years now. Just briefly, your husband would probably experience loss of libido and some ED for about a year, as well as some other side effects, but would then almost certainly recover virtually to where he was before therapy while enjoying outstanding control of the cancer and preserving his options for other therapies, such as surgery or radiation.

Active Surveillance (AS) is a much better form of watchful waiting, though many of us use the terms interchangeably. Basically, AS is open to men with truly low-risk diseased, determined after careful assessment, and usually involves a follow-up biopsy at about the first and second year points to confirm that the patient is on a good course. Of course, there is other monitoring, particularly with PSA tests, which are highly meaningful for case monitoring, with a very small chance for being misleading if a man has a Gleason 6 cancer. The goal is to defer major therapy like surgery or radiation, hopefully forever but at least gaining a few to more years with your current quality of life, and keeping the option for cure wide open by jumping on the disease promptly and with high and proven effectiveness if it proves more aggressive than was thought. That hidden aggressiveness and need for curative therapy happen roughly one third of the time. But, it's looking like about two thirds of the patients do not need therapy!!!

Fortunately for you and your husband, the man who is arguably the world's leader in AS is Dr. Laurence Klotz, who leads his AS program at the U. of Toronto, Sunnybrook, a couple of hours from you. You might want to have a consultation there, or at least try to talk to his office by phone. That one higher risk indicator - the location of the cancer in the apex, along with your husband's young age, might suggest to the AS team that your husband would run too high a risk as an AS patient. At least a consultation would enable you to rule AS in or out as a reasonable option.

Both AS and one-time advanced hormonal therapy would also gain you and your husband TIME - time to enjoy your current quality of life and freedom from the burdens of care for any consequences of therapy, and time for therapy technologies, knowledge of lifestyle countermeasures, and mild medications to improve. These are not small considerations; to me they are big deal items.

This is already getting quite long, and you are already tired of reading about PC. But I want to add one more point - something you can do now to help your husband. It appears that lifestyle tactics - diet/nutrition/supplements, exercise (especially including strength exercise) and stress reduction (not so easy after a diagnosis, but possible), and mild medications (finasteride or Avodart), help control prostate cancer, especially for low-risk cases. Research results are mixed and somewhat confusing, but we now have a fair idea of fairly easy tactics that can help. Vitamin D3 is highly likely to be important for most of us, especially for those who live as far north as you and your husband do; related to vitamin D3, he should probably get a Bone Mineral Density scan (not for cancer, for bone density) and a 25-hydroxy vitamin D level blood test. There are several books on lifestyle tactics; the one I like best (very easy to read), is "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers. I've posted some highlight information in a thread on this board: "Nutrition & lifestyletactics - books, resources and a quick summary." I've also posted information about lycopene, soy, pomogranate juice/extract pills, selenium, and vitamin E. Finasteride is now available (a generic version of Proscar), and it's sister drug is the widely advertized Avodart. It appears that both are somewhat useful in combatting prostate cancer.

Good luck to you both, and keep your spirits up!

Take care,

Jim

 
Old 04-06-2009, 12:01 PM   #5
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Re: Husband just diagnosed

It is difficult coming to terms with the news one has cancer. However given your husband’s case it appears that it may be less serious than many. I am not sure where your regional cancer center is, perhaps Brampton or Orillia but Jim’s suggestion of having it reviewed in Toronto is a good one. I just got back from Canada and while there met with a friend who is being treated in Mississuaga. He seems to be getting excellent treatment and advice. (BTW I am a Canadian ex pat living in Guam now)

I found Dr Snuffy Myers book (recommended by Jim and others) to be most helpful although my friend had difficulty finding it

My own case is much more aggressive than what you have described for your husband nevertheless Dr Myers book made me feel much better about combating my disease and also made my wife feel better.

Many of the guys I talked to on the mainland US while undergoing some of my treatments there found support groups helpful.
I wish you and your husband all of the best. God bless you or if memory seves me right and it applies Dieu vous bénisse

Last edited by moderator2; 04-06-2009 at 03:00 PM. Reason: posted disallowed website(s) - please read the posting rules

 
Old 04-06-2009, 06:33 PM   #6
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Re: Husband just diagnosed

Thank you for all your thoughts and advice. Don't get me wrong we might be tired of reading but will continue to read and learn as much as we can to enable us to make the right decision for us. One thing for sure we really will never know if the choice we make is the right one as really you can only do one surgery because once it's done it's done and you can't go back and try a different way. We know too that everyone is different and you really don't know how it will turn out until you are post surgery or post treatment.

What I have realized with all your replies is that we maybe have some time and not rush here. It's just so scary and the initial thought is to get it out. I guess the two week wait to go back to talk to the doctor was for a reason and he does know what he is doing! I guess the part the worries me is the location in the apex as I have read this is a thinner area therefore you run the chance of it "getting out". I know his father's was in the same area and he ended up having to have radiation after surgery just to make sure. If this happens then again we'll deal with that too. At least we have his father's successful results to give us hope that we too can be cancer free. He is going strong at 77 and cancer free 17 years post surgery.

So deep breath and exhale and we'll wait for the 15th to see what more the doctor has to say.

 
Old 04-07-2009, 12:47 PM   #7
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Re: Husband just diagnosed

Let me add my encouragement also. I was 48 when diagnosed in 2005 with a PSA of 4.6, 2 cores positive out of 12 and Gleason 3+3=6. I had a non-robotic prostatectomy (the robot came to West Virginia a year later) and am doing fine with erections and continence.

For me being only 48 with a low PSA, surgery was the only thing I considered. I wanted it out ASAP and got it done about 2 months after diagnosis, but you do have some time given the numbers. Good luck and God bless....
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I'm not a doctor, just a guy who used to have a cancerous prostate....but I got over it...

 
Old 04-09-2009, 09:39 AM   #8
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Re: Husband just diagnosed

Three very significant advantages of surgery over the other treatment options are:
1. Post operatic pathology which enables microscopic study of the entire prostate,seminal vesicles and peri-neural nerves and sheaths (if removed) to determine if all surgical margins are clear of any cancer cells.
2.Pelvic lymph node dissection,"PLND", which is the removal and dissection of the pelvic lymph nodes to determine if any cancer cells have drained into the lymph system.
3. If either 1. or 2. indicate that the cancer was not completely contained in the prostate capsule with clear margins and negative lymph node biopsy results then adjuvant treatment to eradicate any remaining cancer is both possible and usually effective. This is accomplished by radiation of the prostate bed if any surgical margins were positive plus hormonal blockade if there are positive lymph nodes.
These fall back options aren't possible if radiation is the primary treatment although salvage surgery can be accomplished if primary radiation isn't successful.
The advantages I cited for surgery may be of particular value to your husband because of the location of the tumor near the apex which increases the risk that there may be extra-capsular extension or invasion beyond the prostate capsule. The more extensive studies and prognostic ability of pathologic staging after surgery vs clinical or histologic staging which is much more limited through biopsy could make a critical difference in your husband's case.
Best of Luck, Bob

 
Old 04-09-2009, 01:18 PM   #9
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Re: Husband just diagnosed

Quote:
Originally Posted by shs50 View Post
..If...the cancer was not completely contained in the prostate capsule with clear margins and negative lymph node biopsy results then adjuvant treatment to eradicate any remaining cancer is both possible and usually effective. This is accomplished by radiation of the prostate bed if any surgical margins were positive plus hormonal blockade if there are positive lymph nodes.
...
Bob- I know you generally recommend surgery, and I, proton radiation (but I do agree with you that each case is different and each one of us is different, so I usually try to suggest that people just check into all the options before deciding-- instead of just listening to the first doctor's opinion, whatever that may be).

I do recognize the benefit of post-surgical biopsies, but one thing has bugged me-- if one starts with radiation, the treatment margins can be designed to go a little beyond the prostate and would therefore be treating both the prostate and part of the "bed". So unless one feels that radiation just doesn't work well, isn't this an argument in favor of radiation-- skip the middleman and not have both surgery and then possibly radiation too- when radiation can be chosen at the outset?

 
Old 04-09-2009, 02:06 PM   #10
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Re: Husband just diagnosed

Hi Daff:
Interesting thought, but from what I understand not necessarily valid. Targeted high intensity radiation such as Proton Beam or IMRT are exactly that,targeted high intensity radiation aimed with use of highly sophisicated imaging systems to hit and eradicate the "visible" tumor. However, I've been told (by the top prostate surgeon at Sloan Kettering) that there can be no assurance that the Proton Beam or IMRT has reached every miscroscopic cancer cell cluster which may not be visible.. Its not possible or safe to obliterate the entire prostate by high intensity radiation. With surgery the entire prostate is removed. This is why the surgical goal is an undetectable PSA whereas the radiation goal or success measure is an ultimate nadir of 0.2 since some live prostate tissue remains after radiation which can still harbor errant cancer cells.
If adjuvant radiation therapy of the prostate bed becomes necessary due to surgical failure, while highly effective, its a control measure rather than cure. Obviously no treatment options come with guarantees but surgery when pathologically successful comes closer to certainty with lower long term recurrance rates than any other treatment modality. I've not seen any papers by radiation oncologists that dispute these facts.
Bob

Last edited by shs50; 04-09-2009 at 02:17 PM.

 
Old 04-09-2009, 02:22 PM   #11
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Re: Husband just diagnosed

Quote:
Originally Posted by shs50 View Post
....Targeted high intensity radiation such as Proton Beam or IMRT are exactly that,targeted high intensity radiation aimed with use of highly sophisicated imaging systems to hit and eradicate the "visible" tumor. However, I've been told (by the top prostate surgeon at Sloan Kettering) that there can be no assurance that the Proton Beam or IMRT has reached every miscroscopic cancer cell cluster which may not be visible.. Its not possible or safe to obliterate the entire prostate by high intensity radiation....
Bob- As I understand it, the entire prostate is targeted in radiation, not just an assumed visable tumor area. Both healthy cells and cancerous cells are radiated, but the cells that become "disabled" are the cancerous ones. You're correct that the prostate itself is not obliterated. I'm told that the non-cancerous cells react in such a way that it becomes very unlikely for new cancers to form. I'll ask more questions along these lines when I have my next followup, which is in May. The PSA levels sought in external beam radiation are not as low as you stated. The objective is for PSA to continue to fall over the first two years and reach a low point (nadir) and then stay there forever. It's not better if it's at 0.4 or 0.7-- just the idea that it's level going forward. I'll admit that it's stressful around the time of each PSA test- but probably the same is true of those having had surgery too.

 
Old 04-09-2009, 08:13 PM   #12
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Re: Husband just diagnosed

DAFF;
The PSA value of 0.2ng/ml I referred to is the criteria used for 10 year cure rates by Dr. Critz the director of the CROG clinic in Georgia which uses ProstRcision to treat Prostate Cancer. They've been around and advertising for fifteen or twenty years and use a combination of brachytherapy and external beam therapy to treat P.C. Their claimed cure rates are based on a PSA nadir of 0.2 after ten years. Loma Linda may use a higher PSA cut off as their treatment goal.
I wasn't aware that Proton Beam targeted the entire prostate rather than the tumor area. If thats the case then why why wouldn't the PSA become undetectable as with surgery if the entire prostate is destroyed?

Last edited by shs50; 04-09-2009 at 08:18 PM.

 
Old 04-09-2009, 08:34 PM   #13
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Re: Husband just diagnosed

Daff:
After the above post I went on to the Loma Linda Proton Beam website which said that Proton Beam Radiation uses conformal technology to target the tumor area with high intensity proton beams in order to spare healthy surrounding tissue.

Last edited by shs50; 04-09-2009 at 08:35 PM.

 
Old 04-10-2009, 05:04 AM   #14
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Re: Husband just diagnosed

Quote:
Originally Posted by shs50 View Post
Daff:
After the above post I went on to the Loma Linda Proton Beam website which said that Proton Beam Radiation uses conformal technology to target the tumor area with high intensity proton beams in order to spare healthy surrounding tissue.
That's correct. But "healthy tissue" doesn't refer to what's inside the prostate or the capsule just around it. Proton therapy lacks an "exit dose" and has a lower entrance dose than conventional X-rays, so it's damage to delicate tissue near the prostate that is reduced, lessening the likelihood of side effects like impotence, incontinence and gastrointestinal disorders. The entire prostate receives the radiation dose.

 
Old 04-10-2009, 08:36 AM   #15
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Re: Husband just diagnosed

O.K. But why then is the criteria for Proton post treatment PSA levels not comparable to curative post surgical criteria which is an undetectable PSA? It still seems to me that the more prostate tissue that survives the Proton Beam as evidenced by detectable PSA, the greater the likelihood that some cancer cells have also survived with the tissue.

 
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