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Old 06-25-2010, 12:36 PM   #1
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Newly Diagnosed

I just turned 50 and I've always been in excellent health and physical condition. During a routine physical, my first ever PSA came back at 3.5 and then 2.8 from the same blood sample.

My physician sent me to a urologist. We waited six months and did another PSA test. That one came back at 3.0. The urologist recommended a biopsy. I didn't want to have an unnecessary biopsy so I got a second opinion from another highly recommended urologist. This urologist also said "do the biopsy."

I liked the bed side manner of the the second doctor better than the first so I proceeded. Today, I learned that I had a positive biopsy report. I was floored.

The Gleason score in three of the 12 core samples is 3+3=6. Apparently, this is confined to the prostate and, according to the urologist, is on the low end for needle biopsies.

The urologist recommended robotic surgery and gave me two guys who've done a lot of them. According to my urologist, radioactive seeds are not the best option because of my age. The side effects of the radiation later on in life are unknown.

I don't even really know what questions to ask. But, here's a start:


1. Could the positive result be a false positive? Is there a chance that I don't really have cancer?

2. Does it make sense to repeat the biopsy?

3. Is removal by robotic surgery truly the best option for a fit and healthy 50 year old?


4. What questions should I be asking at this point?


Many thanks for any input you can provide.

 
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Old 06-25-2010, 04:47 PM   #2
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Re: Newly Diagnosed

Hi,
I have found this a good site to get some helpful answers...and to firm up important questions for consultation with the doctors. Some guys on this site (like IADT3since2000) really put in lots of time in research on this topic and are very generous in individualizing questions. You will be glad you came on board.
From what little I know (as a surviving prostate cancer patient), I would think your age, good general health and modest PSA & Gleason numbers give an encouraging prognosis. I would guess the lab had no question about the presence of cancer. I read some people suggesting ...not another biopsy (although some doctors due more than 12 cores)...but have another lab look at it. Jim (the IADT guy) and others know what labs might merit another review.
Some questions to which you may already have answers, but did not mention are the following: 1) Did the DRE show anything? 2) Did the pathology report show the percentage of cancer in the three cores? 3) What is the basis of the doctor thinking it was organ contained? 4) What does it show on the Partin table (that uses a combination, as I understand it, of Gleason score, PSA and staging) to get a probability of organ-contained disease (I found vagueness about this question as a frustrating thing...if prostate cancer tends to start on the fringe and move out...rather than being in the middle or moving inward...I worried about the cancer penetrating the walls of the prostate). 5) Did he give you a staging assessment? 6) I guess he gave you some information about the pros and cons of surgery vs radiation...and robotic vs other surgery, but your research is going to give you information about the details of all the options...with more details than your doctor has time to give you. Then you will end up being able to choose between a number of excellent treatment procedutes.
You ..with some help from good doctors (some doctors don't bother with PSA tests for a healthy 50 year old guy)...and have detected this EARLY. That and having taken good care of yourself--are going to have good results (I just thought of another question...not for your doctor...but for father, uncles, grandparents: is there a family history of prostate cancer...and have they had DRE and PSA tests in the past year?). Good luck to you. Take notes on the stuff you get here. Jim has been involved in conferences with high level professionals as our (cancer patients) ambassador. It is good for the rest of us that he...from his own expertise...has survived to help others on this site. This site can help you help yourself..and be a better "consumer" of cancer diagnosis and treatment. Good luck.
Dale

 
Old 06-25-2010, 05:12 PM   #3
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Re: Newly Diagnosed

You do not need to get another biopsy, you just need to have your slides reread by an expert pathologist like Epstien at Hopkins or Boswitch at Boswitch labs. Your doctor can request a 2nd opinion on the pathology and have the lab send the slides.
If a Gleason 6 is confirmed then every treatment option, surgery, radiation, brachytherapy have the exact same cure rate. Death at 10 years with a Gleason 6 is very rare, even if left untreated.
You should investigate every treatment option and get 2nd opinions from a radiologist, brachytherapist and a surgeon, recognizing that all will have their own bias. A medical oncologist specializing in prostate cancer may give you the most unbiased recommendation.
Since the cure rates for a G6 is similar for all treatment options you need to put a lot of time in investigating the side affects of each option. Surgery has the most immediate side affects and the highest chance for permanent side affects, brachytherapy has the least. Radiation has changed a lot in the last few years and is much more accurrate, meaning fewer side affects and long term issues. Many of the old ideas such as it is only for older guys are no longer valid.
The real fact is that the doctor you choose to do your treatment will have a much greater impact on you than the treatment option you choose.
JohnT

 
Old 06-25-2010, 07:11 PM   #4
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Re: Newly Diagnosed

Thanks very much for the information.

Last edited by Mr.M; 07-05-2010 at 07:57 PM. Reason: Too much information

 
Old 06-25-2010, 07:44 PM   #5
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Re: Newly Diagnosed

Hi ,

Welcome to the board! Also, kudos to you for asking your questions on the same day you got the news. As of this moment, Dale and JohnT have both provided responses that should help you a lot. (Also, thanks for the kind words, guys!) I'll add some comments in green to an excerpt from your original post.


Quote:
Originally Posted by Mr.M View Post
I just turned 50 and I've always been in excellent health and physical condition. During a routine physical, my first ever PSA came back at 3.5 and then 2.8 from the same blood sample.

My physician sent me to a urologist. We waited six months and did another PSA test. That one came back at 3.0. The urologist recommended a biopsy. I didn't want to have an unnecessary biopsy so I got a second opinion from another highly recommended urologist. This urologist also said "do the biopsy."

You are benefiting from the modern understanding of PSA as it relates to age and other factors, such as the size of the prostate. Not long ago, your PSA levels would not have raised concern.

I liked the bed side manner of the the second doctor better than the first so I proceeded. Today, I learned that I had a positive biopsy report. I was floored.

Welcome to the club! That rough initiation is common.

The Gleason score in three of the 12 core samples is 3+3=6.

Gleason 6 is the most common score for newly diagnosed men, and it indicates fairly unaggressive prostate cancer. That's a good thing, and the fact that it was based on twelve cores gives reassurance that it is a sound sample and in line with current practice. Your Gleason score is an important indicator of "low-risk" prostate cancer.

The fact that three of twelve cores were positive yields a 25% of cores positive figure. That's important, because it is another low-risk indicator, below the 34% positive that would indicate higher risk.


Apparently, this is confined to the prostate and, according to the urologist, is on the low end for needle biopsies.

Both Dale and JohnT asked good questions about the stage, etc., that you need to get from your doctor. Another important piece of data is the size of the prostate; the best estimate is based on the ultrasound used at the time of biopsy, but estimates based on DREs are also reasonably reliable. Do you have results and dates of previous PSA tests? Those would help indicate the velocity you are dealing with. (That 2.8 and 3.0 suggest the velocity is low, but more data points would help.)

The urologist recommended robotic surgery and gave me two guys who've done a lot of them. According to my urologist, radioactive seeds are not the best option because of my age. The side effects of the radiation later on in life are unknown.

Now, as Dale and JohnT have suggested, you are getting a biased and not so accurate sales pitch. Unfortunately, it is also a fairly common sales pitch from urologists. I'll join Dale and JohnT in a chorus saying that other options, especially including radiation, have at least as good a claim to being best for you, based on what you have posted. It is important to consider circumstances that can elevate or depress the worth of a therapy in your particular case. For instance, if you are already having urinary trouble, radiation loses some appeal; if you are having some cardio issues (apparently not in your case), then surgery loses some appeal).

Actually, radiation has more sound studies done for longer periods of follow-up with greater average success than surgery. The Prostate Cancer Treatment Center in Seattle, a brachytherapy center, has published a paper on that in its collection of items on "prostate cancer." There is a thread on this board that talks about that study entitled "Choosing a therapy - lessons from the Prostate Cancer Results Study Group, started on 5/22/2010.


I don't even really know what questions to ask. But, here's a start:


1. Could the positive result be a false positive? Is there a chance that I don't really have cancer?

Unfortunately, no.

2. Does it make sense to repeat the biopsy?

JohnT's comment on a a second biopsy opinion is right on the money.

3. Is removal by robotic surgery truly the best option for a fit and healthy 50 year old?

No. It may become the most attractive option to you, but there is no reason why it is the best option. One option you could quite reasonably consider, based on what you have posted so far, is "active surveillance" (AS). For men with low-risk case characteristics across the board, even with age as young as 50, AS is an option. (That said, some leading AS centers are a lot more comfortable with AS for older men.) Personally, I believe AS will be offered to most truly low-risk men no matter what their ages, in a few years, as favorable study results accumulate. There have been a number of threads featuring AS on the board. It involves quite active surveillance (at least two follow-up biopsies at the second and third year points, plus periodic PSA and DRE checks. It should involve, I think, lifestyle tactics (nutrition/diet/supplements, exercise, stress reduction as well as perhaps mild medications (a low dose statin, Avodart or finasteride). It could very well prove out that such a robust AS program will be all you will need to control the cancer throughout your life, freeing you from the burden of potential side effects of major treatment. (Those side effects are far more outweighed by the benefit of curing or controlling cancer for those of us who really need that, but many of us don't need major treatment. That's really become clear only in recent years of this decade.) However, these are my thoughts as a layman with no enrolled medical education behind them. Please consider these thoughts as leads for discussions with aware doctors.

4. What questions should I be asking at this point?

I believe the best book to orient new patients is "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano. Dale and JohnT have both listed some key questions, and the Primer will help you think of others. Dr. Strum was a co-founder of the Prostate Cancer Research Institute, a non-profit organization dedicated to educating patients. PCRI has many publications to help patients.



Many thanks for any input you can provide.

Even though your doctors may not be giving you the best advice by trying so strongly to steer you toward surgery and away from radiation or other options, they did you a real service by finding that cancer early! That's key!

Good luck to you in sorting out what is best for you.

Take care,

Jim


Last edited by Administrator; 12-15-2010 at 08:46 AM.

 
Old 06-25-2010, 08:08 PM   #6
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Re: Newly Diagnosed

Many, many thanks for your generous counsel.

The Partin Table from my pathology report showed the following:

Organ confined: 88 (86-90)
Extraprostatic extension: 11 (10-13)
Seminal Vesicle Invasion: 1 (0-1)
Lymph Node Invasion: 0 (0-0)

All numbers represent predictive probabilities with a 95 percent confidence interval; ellipses indicate lack of sufficient data to calculate probability.

Although the report did not indicate a staging assessment, I backed into this by using my Partin numbers and the Johns Hopkins website - T1c. Four DRE's have all been normal.

Last edited by Mr.M; 07-05-2010 at 08:00 PM.

 
Old 06-26-2010, 08:24 PM   #7
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viperfred HB User
Re: Newly Diagnosed

Hi,

Suggest you also consider radio therapy. I selected the CyberKnife which is high dose external beam radio therapy. Treatment is done in 4-5 out patient sessions, most of us worked during and after therapy with some short term increase in urination and bowel activity.

Knowledge about all options will serve you well!

Hope you have a good outcome with whatever option you select.

Last edited by Administrator; 12-15-2010 at 08:46 AM.

 
Old 06-27-2010, 07:07 AM   #8
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Re: Newly Diagnosed

Hello Friend, and welcome.

While none of the guys here actually WANTED to be here, you will find that all are willing to share their experiences to help others like yourself. You have taken positive steps to educating yourself about prostate cancer (PC), and I would encourage you to continue so that you have the confidence of knowledge behind your eventual treatment decisions. I, too, recommend ordering the Strum book previously mentioned.

You and I are the same age (50), although I was diagnosed at 49 (in Jan-09, 17 months ago). There is an old Chinese proverb which says that if you want to know about the road ahead, speak to someone on the return route. If you wish to know more about the surgery route as a possible choice for yourself, I would be glad to provide you insight through my experiences.

My case was nearly identical to yours: biopsy Gleason 3+3 (later raised to 3+4 by the post-surgery pathology study), 4 cancerous cores, moderately low PSA, no DRE, high likelihood (Partin tables) of organ-contained PC (and it was, according to the pathology report).

I will offer up two of my own previous posts at this site for possible reading material:

1. My own thread, which I began in Feb-09 when I found this site. My thread is called: "PC, and I'm only 49!", and can be found here: http://www.healthboards.com/boards/showthread.php?t=670728

2. Through a discussion in someone else's thread, someone asked me about my path to decide on surgery; here's a link to what I wrote in response: http://www.healthboards.com/boards/showpost.php?p=4085673&postcount=8


You are undoubtedly in "drinking from a firehose" mode now, and I wish you patience to wade your way through it all. Again, I recommend the Strum book as a reliable source of info. It's a journey; take it a step at a time. As you go down the path, let me know if you have other specific questions on surgery; I will offer my case as an "open book."

best regards

 
Old 06-27-2010, 09:01 AM   #9
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Re: Newly Diagnosed

Many thanks.

I was in a hurry for information and the Strum book wasn't available locally so I purchased the following book: Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. It was mentioned along with the Strum book in a few of the threads here. I've found it helpful in answering my questions regarding the pathology results which is what my focus has been for the past 24 hours.

Will I gain anything from reading the Strum book too?

I'm also wondering if there is a concise "pro con" article about the various therapies. I've very good descriptions of each, but nothing that does a side by side comparison.

Last edited by Mr.M; 06-27-2010 at 10:02 AM. Reason: added question

 
Old 06-27-2010, 02:38 PM   #10
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Re: Newly Diagnosed

Hi,

I'll insert some comments in green.


Quote:
Originally Posted by Mr.M View Post
Many thanks.

I was in a hurry for information and the Strum book wasn't available locally so I purchased the following book: Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. It was mentioned along with the Strum book in a few of the threads here. I've found it helpful in answering my questions regarding the pathology results which is what my focus has been for the past 24 hours.

Dr. Walsh's book is excellent for the surgery/urology point of view, and it is excellent on the basics. However, the last edition I checked, it was weak on hormonal therapy.

Will I gain anything from reading the Strum book too?

Oh yes! The Strum/Pogliano book has a high level of expertise, it's remarkably comprehensive, and it combines that with extraordinary objectivity, something that cannot be said about many of the other leading guides. It's statements are firmly based in research, and for those who are interested, the research is identified with citations, enabling you to find and examine the specific papers cited. In my opinion it is head and shoulders above other sources as a guide to decision making and as a resource for empowering patients. However, the latest edition was published in 2005, and there are some new areas of technology that are not addressed, such as CyberKnife/Stereotactic Body Radiotherapy. That said, as the book was well ahead of the field of practice, it is still quite current. Other books, including Dr. Walsh's, are superior on the side effects of surgery, going into much detail about what the experience is like and detailed preparations; perhaps that's true for radiation too in the Walsh book, but I'm not sure.

Among other things, the Strum/Pogliano book has many photos and color graphics that help us learn what we need to know.


I'm also wondering if there is a concise "pro con" article about the various therapies. I've very good descriptions of each, but nothing that does a side by side comparison.

The Strum/Pogliano Primer gives you pros and cons, though not side by side.

Dr. Strum was a co-founder of the Prostate Cancer Research Institute, PCRI, a non-profit organization, and papers published by PCRI, including its newsletter (back copies are available - all free) are outstanding on various therapies. It also has resources covering the recent National Conferences on Prostate Cancer, allowing us to get the views of leading experts. The next conference in the series is coming up soon, in September in LA again.

The book by Dr. Sheldon Marks is outstanding on the basics, but it is highly biased toward surgery and presents an obsolete view of radiation and some other therapies.

The paper by the Prostate Cancer Results Study Group, described in the thread "Choosing a therapy - lessons from the Prostate Cancer Results Study Group," thread initiated on 5/22/10, is outstanding on relative effectiveness of therapies using the best practical apples-to-apples comparison methods, and it also is good on side effects. Have you looked at that paper yet?

Take care and good luck with your searching,

Jim

Last edited by Administrator; 12-15-2010 at 08:47 AM.

 
Old 06-27-2010, 03:33 PM   #11
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Re: Newly Diagnosed

Hi again,

I also bought both the Strum book and the Walsh book, and read both. Both are outstanding. As Jim points out, the Walsh book is said to be a little weak on the hormone treatment section, but frankly that was not an area I had an immediate concern for (nor do you, I imagine). With your case characteristics, you have a very high likelihood for a fully curative outcome through your primary treatment choice. It's always possible that you might need it (hormone therapy, or HT) later—I guess one should never say never—but I'd cross that bridge if/when needed (I doubt it would be ever needed).

Walsh's book has some excellent pictures (drawings; perhaps you've already seen some of these) which help visualize what's going on...as Jim pointed out, he is a top prostate surgeon. Some folks wouldn't be so interested in the details...I was fascinated. I truly believed in my own case that I wanted to be as educated and knowledgeable about my cancer as possible to make informed decisions, and I would recommend that approach to absolutely everyone. One can really "drink from the firehose" on information from the internet, but the Strum and Walsh books are valuable, reliable sources. Pop for the extra $30 and order the Strum book...that's my recommendation.

Building on what Jim said, I think the pro/con that you can draw from either or both of these books is better than any article because there are lots of differences in different men's cases which make one treatment good for some, but another treatment better for someone else. The books handle the details better than any generalized "article" I've seen.

I've heard good thinks about the U of Mich center, and the Henry Ford Hospital has an excellent reputation for prostate cancer surgery...very thorough protocols from what I've heard. The leading doctors are usually found in a university/teaching hospital setting versus a community hospital setting.

I'm going to Michigan next weekend, to Marshall (near crossroads of I-94 and I-69). They have a wonderful small town July 4th celebration (on the 3rd). I lived there when I was small.

I also saw your private messages sent to me, and will respond there shortly.

best regards

Last edited by Administrator; 12-15-2010 at 08:47 AM.

 
Old 07-01-2010, 06:44 PM   #12
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Re: Newly Diagnosed

I continue to discover more information. I've now confirmed that my particular case would be a candidate for watchful waiting if I were 65 years old. In fact, it seems likely that even at 50 I can live a long life with this cancer inside of my prostate. (the volume is 5% in each of the three of 12 cores and my prostate is within normal size range with no bumps or hard spots).

I'm more confused than ever now. So far the professional advice I've received is that now is the time to get this out of my body and that I should proceed with a cure. But, if it's not going to kill me, I'm wondering whether I should just monitor it so that I don't have to deal with the risks of the various treatments or the side effects.

Last edited by Mr.M; 07-01-2010 at 07:07 PM.

 
Old 07-01-2010, 09:20 PM   #13
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Re: Newly Diagnosed

Hi,

There are many considerations (life expectancy being a major consideration) and opinions for management of PCa. Studies compare recurrence vs cancer stage. In every study that I recall the rate of recurrence increases with stage of treatment. There is no test that can tell if a cancer is indolent or a killer. Personally I do not see a reason to not be treated. If one is on their last year of life then there is no need to have a PSA or DRE and add stress.

Keep on learning about PCa and the options for management and treatment. Let knowledge guide you to make an informed decision.

Good Luck and Best Wishes.

Last edited by Administrator; 12-15-2010 at 08:48 AM.

 
Old 07-01-2010, 11:38 PM   #14
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Re: Newly Diagnosed

Hi,
Glad to hear you are confused resulting from increased information. Some of us have been confused from insufficient information. I don't know what I would have done in your situation (being young and learning of PC at such an early stage). I think I would have been nervous about surgery with it being at an early stage, even if smart people recommended it and I had read of smart people selecting that treatment. I have read that they felt good getting the cancer removed. Nevertheless, I would wonder if I had selected major surgery when maybe it was not necessary. Watchful waiting would be appealing if I knew the pace of the advance of cancer. I would be worrying that the 5% was moving to a higher percentage and in areas outside the three cores. You seem very capable of assessing all this complex data and could monitor the rate of increase with more precision and confidence than a less informed patient. With highly probable to be organ contained, you could watch it ACTIVELY and could later select a treatment procedure when it was still at an early stage with a comparable prognosis.
My situation was not comparable to yours. My very smart cousin had some things in common (3 cores with 5% cancer in each...very good general health...a little older than you). He looked like a good candidate for active watching, but he said he wanted to take care of it. He elected to have proton therapy at Jacksonville. He thought radiation would have as good a chance to kill the cancer with less damage to healthy tissue.
You seem to be getting a good handle on this confusing information since you are getting information from multiple sources. Dr. Walsh (who gets such great reviews on his book by readers AND on his treatment by his patients) covers many areas thoroughly. One patient liked his book, but said the book did "not mention" the treatment that had helped him (hormone therapy). He spends some time on most topics. He has three or four paragraphs on prayer and spiritual benefits. He mentioned the treatment chosen by my cousin, proton therapy, but devoted only a couple paragraphs to it. Some books that devote more space to that treatment (which is what I had) may be regarded by some readers as overly enthusiastic. They are building more centers. I remember hearing the Michigan governor saying she wanting two proton therapy centers. I have not checked the status of that commitment. It takes a couple years to get them in operation.
Good luck on your ongoing study. Your information and experience will be of great value to other patients who are young and fortunate enough to have an early diagnosis. I hope you come back later...you will be a big help to newly diagnosed patients who are confused and anxious.
Dale

Last edited by Administrator; 12-15-2010 at 08:48 AM.

 
Old 07-02-2010, 06:19 PM   #15
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Re: Newly Diagnosed

Hi,

I'm sorry you're having to go through this, and you'll certainly find many knowlegeable, supportive and helpful people here, as all the previous postings show.

We've been in a similar situation as you. My husband (61) was diagnosed 2 months ago with a Gleason score 6 (3+3), PSA 9.75 and normal DRE. We set about reading and asking others that have been through a similar expericne. All the information can start to overwhelm you, but I started to realise that most books give the same thoughts regarding individual treatments, so you slowly begin to form what will work best for you.

My husband felt he couldn't cope with watch and wait, as he'd not be able to deal with knowing this cancer was inside his body. I was lucky to work with the wife of one of our regions top oncoligsts, and he subsequently set up an appointment with a highly regarded radiation oncologist, who specialises in prostate cancer. She was absolutely marvellous. She gave my husband a thorough examination,(far better than the urologist), and then came up with what she felt were his best options.

As his prostate is extremely enlarged, she felt brachytherapy was not a good option. She said that he'd have to have hormone treatment for 6 months, and there was no guarantee at the end of that time the prostate would've shrunk enough for this treatment. In fact felt that was highly unlikely. She also told us they're now finding the side effects of hormone treatment for many men, are worse than they realised.

As someone mentioned, you will often get a biased opinion - e.g. a urologist will suggest surgery as that is what he does. A radiation oncologist will suggest radiation and so on.

However this wonderul woman said once again, due to the enlarged prostate, she felt radiation was not really the best treatment option. In order to get good clearance, 7cm of the rectum was in danger of permanent damage, causing lifelong bowel problems. She said 2 - 3cm men can cope with, but felt 7cm was too big a risk.

So while radiation is her field, she felt open prostatectomy was the most viable option in this case. Robotic suergery is not done in our hospital. She also pointed out that you can't have surgery after radiation, whereas you can have radiation after surgery, so she could always do a 'mop up' if that was required in time.

It will slowly start to unfold for you. Read the books, talk to people, give yourself a break then go back to it, and you'll come up with your own answer. Whatever you choose there'll be unpleasant side effects, but as my husband said, they're all better than the alternative.

I'n not sure if you have a wife or partner, but between you both, you can work through the options as each couple will have different needs.

Jude

Last edited by Administrator; 12-15-2010 at 08:49 AM.

 
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