New Member - Treatment Decission

PC52-
Welcome to the club no one wants to be a member of.
You have said alot about yourself in your letter and sorry to hear that you are "frozen".

-with your stats -gleason 6 - you have time to search all your options and find the BEST Doctor - the BEST hospital - and the BEST treatment for you... and also, the BEST quality of life post-op (I usually don't include the last bit, but am responding to your "working parts" comment).

-that may be a key part in your decisions, but do keep in mind, what is stated at the pretreatment stage may not be the end result.
-we are all different and respond to different treatments (even with similar stats).

-your final decision is what is best for you - and what you are content with - there aren't any do-overs....

-HW is a great place for research, support and a good place to rant - about PCa, personal and family reactions, doctors, confusion about treatments and the "twilight zone" of having cancer.

-wishing you all the best and keep us updated.

hugs,
Bronson

Sorry for your diagnosis, but I’m glad you found this forum. I’ve gotten a lot of information and encouragement from the people here. They are very knowledgeable and caring.

I thought surgery was my only option, because I was told by my Uro, at 53 I am too young for the other treatments. Then I went for my second and third opinions at two major cancer centers. There I found out that surgery, brachytherapy, IMRT, and Active Surveillance are all good options for me. In fact the rad onc recommended that I do AS but stressed the “Active” part.

This is slow growing cancer, so you have time to do your research and weigh your options. It took me about 6 months to make my decision. I agonized over whether to do seeds or surgery for quite a while. So I know what you are going though on being frozen; a lot of us were.

I would also encourage you to get a second opinion on your biopsy slides. My slides got slightly upgraded: stayed at Gleason 6, but the percentage of cancer went up. I also heard of the pathology results being downgraded.

When you go for your consults, be sure to have a list of questions and take notes. You might also consider recording the conversation (with the doctor’s permission) as you can’t write down everything. I wish I had done this.

Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer is an excellent book and a good starting point.

Don’t know much about PBT, but someone will probably chime in with some information for you, or you can do a search for some threads on the topic.

Good luck on your journey.

Thanks for the replies and support guys.

It's hard to sit and not "get something done". I seem to get lots of family pressure (too much) as well as the dxing Dr to not sit and wait. I have two friends (51 and 43) who got dx with breast cancer in Dec and have already had surgery and are undergoing chemo. I know PC is quite different in it's growth, but I kind of admire them for just jumping in and getting rid of it as soon as they could. I'm a R&D engineer w a med device company who develops new stent drug coating technologies for cardiac disease and I'm very analytical in my approach to doing anything. I'm very, very statistically oriented and in my brief exposure to PC have literally read hundreds of clinical studies on the efficacy of the different therapies and am starting to conclude that the main outcomes (morbidity and or re-occurrence) of the major therapies are all fairly equal once you sort through the stages and ages of the patients. Although the main goal of most men (and others w cancer) are to be "cured" and free from cancer, I do rank quality of life (QOL) to be as important to me. I have told my wife (of 25 yrs) that I'm seriously considering quitting work, selling the house and hopping on my motorcycle and just riding around the country, doing what I want, when I want. Jokingly (half...), I've told a few friends that "while it still works", I want to hit every knot hole in the forest, every gopher hole in the field, every ice hole in the lake, every hole on the golf course! The Mrs is presently moving all her stuff down into the basement until I "get my _hit together" and get through my "Transition". At 54 She's gone through cervical cancer and thyroid cancer and can't see why I would be so selfish as to risk not being around for our kids (4, all over age 20). She doesn't really care about the potential side effects of PC treatment, but I do! When I read all the recent literature out there about over treatment of low grade PC and the statistics on the % of indolent tumors found after RP, I really think I want to wait until I "have" to do something about the PC, after it has progressed.

Just confused about what to do, which for me is kind of a newer deal when it comes to clinical decisions like this. I will continue to research and get more medical opinions in the near future (as well as stay away from the temptations to hit the stray holes... ;-)

Tom

Tom – we all shot for the trifecta: cure the cancer, cure the incontinence, cure the ED. Usually in that order of priority. Curing the cancer of course is paramount, resolving incontinence comes next, because that’s something you live with everyday of your life, and lastly is fixing the ED. Don’t get me wrong they’re all important.

Looking at your stats you probably are not a candidate for Active Surveillance. Even if they ok’d it you would need to be very active; and that would mean frequent PSA tests and frequent biopsies. The problem with waiting until you “have” to do something … is once the cancer gets out of your prostate it’s a whole new ball game. If it spreads to the lymph nodes or bone, it can rarely be cured; the best that can be done is control it. And there is no way to predict when that will happen; even with AS there is the risk of missing the window of opportunity. Also this is something to consider, if you are healthy now you will probably tolerate and recover from the treatment more quickly.

You do have time to gather information, but the bottom line is you have to make the decision that’s best for you. What ever you decide, make sure you get a doctor with a lot of experience. Outcomes are mostly dependent upon the experience of the doctors doing the procedure.

Best of luck to you.

PC@52

I have been on this forum for five years- I do not ever remember any first time responder quite like this. The vast majority of individuals are looking for information that will help them and their significant others make good treatment decisions. They want to be "here" for their wives, children, grandchildren. From what I have seen here and in other forums- PC is a very long terrible way to die.
Many individuals here have great cognitive skills and are willing, in fact eager to share their knowledge. They have used their brains to survive and flourish. Those that have used their male body parts to think with have not faired so well and are no longer here.

From what you have written about yourself, I concur with your wife. "While it still works", I am talking about your brain and your heart, get treated. She deserves that, your children want you around to be the grandfather their children need. I want you around to develop that perfect stent to keep me from having open heart surgery again! Heart surgery twenty years ago @ 41- doing fine

Follow the wise words of Kwai Chang Caine who said, "I seek not to know all the answers but to understand the questions."   With your statistical background (I have a similar technical background), this quote will have added significance. If (and that should be a BIG “IF”) you choose to seek treatment for your low risk PC, one of the questions for someone your (young) age to understand is about what they call the “ late-term ” side effects of radiation treatments…this is perhaps the question Kwai Chang Caine would seek to understand about his life 5-, 6-, or 8- years down the road.   You have absolutely no reason to believe that you won't be around for decades, and while it might be difficult (now) to think of yourself having sex at age 60, you should ask some of the active 60- and 70-year olds (or older) about it.  (don't ask me; the "59" in my username refers to the year I was born, not my age) Most treatment outcome studies are focused on short-term side effects.   Surgery will, with high certainty, cause some initial loss of erectile function.   But if you select an experienced surgeon, and if your pre-surgery erectile function is very good, and if your case characteristic indicate a likely lack of complications, then the probability is high that your erectile function will return and your overall results will likely be much better than the broader population reported in most studies.   The total population of men undergoing PC treatments includes mostly older men who have (quite naturally) already experienced some forms of ED.   The late-term ED which is not uncommon 5 or more years after PC  radiation treatment is not covered in the short-term published studies. Sorry to hear of the “cancer hysteria” you are currently going through; we’ve all been there.   You appear to have low risk PC…one can say with high confidence that you are not going to die from it.   Please don’t rush any treatment decision; you certainly don’t appear to need to…   edit:   fixed typo Post Edited (Casey59) : 1/19/2012 9:20:32 AM (GMT-7)

PC@52 - I am in a similar position in terms of age and numbers. When I got the results last month I went through the same questions you're talking about. I do have a lot of experience with helping my parents make major medical decisions and when my case hit I thought I could figure out in a snap. Well that didn't work. I was so shocked for a couple of weeks that I could barely function. My wife helped me pull out of it and I've moved on.

It's easy to second and even third guess the decision but at some point you just have to give it your best shot and do something. I had hoped I'd get a pass to the active surveillance department but it didn't take the doc long to prove to me with the pathology report that that wasn't a good option.

I've chosen external beam radiation from my local clinic (PBT isn't covered under my health plan) for my primary treatment. Quality of life issues concern me as does knocking out the cancer. I lost my mother to cancer and have a brother with PC. At 52 I figure I've got two or three decades left at least and am if I am anything like my father was I'll likely run into worse problems than a little ED and having to get up during the night to pee. Sure I don't want those problems now but they are all treatable.

So in the end it was a trade off between dealing with the cancer and minimizing the side effects. I've also considered that I may need to do a different treatment later if this one fails. I got to a point where I decided to ignore all that and just focus on doing one thing right and pray for the best.

It's hard to describe how much more at peace I am not that I've just made a choice and given up on if it is the "right' choice.

and my wife is on the computer today planning our trip to Paris this summer.

At the risk of info over-load, I'll pick up the books by Walsh and Scholtz ;-) . Saw a new Urologist (surgeon) today who is the head of the prostate cancer center at one of our better hospitals here, he's done 100's+ of robotic surgeries and teaches it also and was a very great resource to tap. Of course because of my age, stage and health, he recommends that surgery is my "best" option... he did make me feel much more comfortable in his description of his actual technique as well as how chances of ED are increased during the surgery and how the surgeon's skill and methods can usually cause/avoid some issues. He did tell me that I should not rush into any decision, that I have a couple of months to decide, and that at my PSA level, G score, ect, that it is improbable that anything will change much over the next few months. Also got an appointment with a rad onco for next week and I'll discuss that route with him. Interested to see if he is at all knowledgeable with proton rad or if he dismisses it as "too new" like most drs I've talked to. I did ask today's Uro about PBT and he said it was only about two years old and no one really knows what the long term outcomes are from it, which of course is wrong, as Loma Linda has been doing it for over 20 years and have treated over 15k patients.

I do have the urge to just pick a therapy and be done with it, it would be a huge relief I think, but it's in my nature to over think everything and this "thing" is going to keep me going for a while.

And thanks for the encouragement Amizee, I know my wife loves and supports me but we are not in a very good place right now (we just moved her parents off the farm into assisted care on Monday and that along with some other marital issues is a little too much for her at this point). So, I kind of on this by myself. It's very nice to have the support of people here.

"I haven't seen many posts from guys who have had PBT (proton beam) here and I am skeptical of the "wonderful results and no side effects" that are testified to on some of the pro-PBT website."

PC@52,

First, I'm sorry to hear about your "battles" and now you have an new one - sometimes it feels that life isn't fair.

Next, I don't want to sound like a Proton "fan boy", because choice of treatment is very much an individual decision. And if only one treatment was the very best, then there would be only one treatment.

I had PBT at UFTPI Feb-Apr 2010. As for side effects, my experience is that there are very, very few. For the first month after treatment, I had urinary burning, urgency, etc. but that quickly subsided. Then about the 18 month mark, I had some very slight blood streaks in my stools - radiation proctitis or bleeding hemorrhoids? I don't know, but it quickly resolved. On the Proton forums I participate in rectal bleeding seems to be the most common complaint - but very few "serious" bleeding issues. I don't think I've heard a single person complain of incontinence. There are some ED complaints, but they seem to be related to problems before PBT.

Now, the problem is no one has done a rigorus, peer reviewed study to confirm this although the science seems solid and the anectdotal reports are good.

I don't what to scare you with the following: but in my case, PBT didn't get the all the cancer - the theory is the cancer had become systemic prior to treatment (you can read about this in my signature image). No treatments work 100% of the time - just read this forum with all the folks with other forms of primary treatement that has failed. Also, I was at Gleason 4+3 & Stage T2a with perinural invasion.

So, hope that helps,
...Jerry

Wow. This site always impresses me with the incredible thoughtfulness and sharing of its members. It was my best support resource when I went through this 5 years ago. I have not been here in a very long time, but came on to post that I am at zero 5 years past my surgery, and reading through some of the threads, felt compelled to respond to yours.

[email protected] your name here resonates to me how similarly I felt 5 years ago when I named myself 41diagnosed. And as I read your post, I recalled how similarly I felt to what you expressed..."Everything currently "works" just the way I like it and I'm not sure I'd trade extra years if it didn't." I seriously told my wife that I might rather die than be incontinent or impotent at age 41. My twins were 9 a the time. My wife is in healthcare, was scared crapless for my health, and all I could think of was losing my erection or having to wear diapers/pads forever.

You can search on my threads from back then...I hope they are still around...I wrote numerous on my decision process. I read and analyzed data and made spreadsheets of statistics and pros and cons lists, etc. I made my wife bring me the full studies from the hospital library for which I could only find the blurbs on PubMed.

I will tell you that I wanted like hell for my answer to be PBT. I went to Loma Linda and was fitted for a "pod", had a start date, and had it pre-approved by my insurance company (today they are not covering PBT at all). I had read all the popular PCa books including Bob Marckini's book. I wanted it to be my treatment bible. Go on a "vacation" and be cured of PCa. What better way to be treated?

Unfortunately, for me, I had all these family and friends who were physicians and/or medical professionals...my uncle and my 2 closest friends from both HS and college and my wife who had been an oncology nurse. They would not leave me alone in my analysis paralysis. My wife gave me three months to get treatment or what I'll never know, as I didn't challenge it. I figured I had to do something, so I agreed to do something within 3 months. I scheduled PBT, RRP and robotic surgery, all for 3 months from my diagnosis date, and all with the top docs or centers of excellence I could find. Then I waffled back and forth until the very end of the 3 months.

I went to Loma Linda, Mass General, University of Chicago and Northwestern University Hospitals. I talked to the Oncology Radiaologists and many Urologists (who knew they were all surgeons?). I got conflicting information almost everywhere and no one definitively would tell me what they felt I should do...or maybe I just didn't want to hear what they were telling me because I wanted to do PBT.

In the end, I could not gather enough tangible data on PBT to bet my life on it. I had to wonder why the PBT docs had been so lax in publishing more recent studies. I think today there are some more recent studies that came out in 2009, but there was no current data when I was looking 5 years ago. And the literature was so incredibly propogandized it made my head spin. "No side effects," they said, but no mention of the failures either. Well, call a spade a spade, recurrence is a pretty lousy side effect regardless of which route you take. And since the literature would only say that PBT "was at least as effective as surgery", there had to be as many recurrences with PBT as with surgery, so therefore plenty of negative side effects. And there were never any randomized studies done between surgery and PBT, which is somewhat understandable given that people today can choose.

My surgeon, Dr. Catlona, was the first doc who I felt talked to me with conviction and was able to calmly discuss the pros and cons with me. He was neither defensive nor preachy, nor arrogant; he was simply matter-of-fact about answering my questions. In response to whether I should pursue treatment or do watchful waiting, he said..."At 41, we know you have prostate cancer. Even if it is a very slow growing cancer, it is very unlikely that it won't cause you a major problem in your lifetime. If that is 15 years from now, and it is unlikely it would take even that long to cause you problems, will you feel like that was enough time?"

With respect to surgery vs. PBT (or any form of radiation), he said, "Cancer is like termites...you have to eradicate every last cell, or it will keep on multiplying and growing. If you remove your prostate, you have more chance of removing all the cancer and decreasing your risk of recurrence." He went on to say..."Assume you do have success with radiation and all the cancer is killed. You still have healthy prostate cells and a predisposition to prostate cancer. You therefore have a higher risk of a recurrence that could be from a recurrence in healthy prostate cells, not necessarily from leaving cancer behind. If that happens and you've had radiation, there is little that can be done that has good outcomes." I did the research and he is right.

So in the end, despite my deepest desire for PBT to be my "friendly" answer to my problem, I chose RRP. I chose Catalona as my surgeon as he had done the most surgeries of any surgeon I could find, and his own patient group had amongst the highest survival rates and lowest recurrence rates of of any studies I could find. I also researched robotic vs. open surgery. For me personally, the open surgery was a better option.

So here I am 5 years later, zero PSA, continent, and potent with 10 mg. Levitra as often as I chose to take it. My kids are 14 and neither they nor my wife think much about my having had PCa. I myself think less and less about it as time goes by. The scars are there, and I wish I still ejaculated when I had an orgasm, and I wish I never had cancer, but you adjust.

I wish you the best of luck in your decision. You are not selfish, nor crazy, and your fears are justified. Cancer is scary. You just have to figure out in your own mind whether, if you wait to do treatment, you really believe you will be able to catch it when it progresses, which it will, because that is what cancer does, and do treatment before it spreads beyond the prostate. Because once that happens, it's a whole different ball game. So don't wait too long, and know the other side of treatment is not necessarily so dark and terrible.

I too thought about doing nothing and enjoying the years I had left without pads or ED. Even the night before my procedure (I choose seeds) I said to my wife "Everything works so well right now, I'm not sure I want to go through with this." She responded "You have cancer. You need to do something." I was fortunate to have had her support through the whole ordeal.

So far so good with me and no one has a crystal ball. It's a tough decision to make and you have time. You read the problems that people here have, but maybe they are here because they have problems. There is just no good way to know how many people go through treatment and move on without SE or returning cancer.

In the end, you need to do what is right for you. I will say that I felt a lot better after I had made my decision and got treatment. I stopped me from dwelling on it.

This is a good place to express your honest feelings and get some good feedback. You will get a variety of responses. People here do care.
You can read my journey in my signature.

Good luck to you.

PC@52,
Good luck and God Bless, I also am going through this journey alone. My wife of 17 years decided she wanted a divorce before I was diagnosed. And since the diagnosis she has not changed her mind so it is what it is. But having this forum has taken a lot of my fears and trepidations away, here you can post can get honest feedback on your PC. It has taken the place of me having a wife to run things and procedures through. But while you still have someone who cares for you I would not take that for granted... Good luck in your decision making process.