HealingWell
Search Close Search
☰

Freaking Out

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/23/2013 12:56 AM (GMT 0)

david in sc said...
But that is for a doctor to decide

I think we may have a basic disagreement over the role of patient and doctor. I see the doctor as adviser to and collaborator with the patient, and ultimately, the executor of the patient's decision. I believe that in these days of increasing specialization, we can't expect any one doctor to have all the pieces of the puzzle. So it falls to each of us to become our own advocate. To do that, we must educate ourselves, using all resources at our disposal, including this one.

I know that not everyone sees the patient/doctor relationship the way I do. My parents would never have thought of questioning the "doctor's orders." I went through 6 doctors to find the two I liked (a Uro and an RO) and communicate best with, and often go along on doctor's visits with members of my support group. Like you, some doctors are put off by me, but most, I've found, are very bright engaging people who appreciate an interesting discussion about topics of mutual interest. Often, I've found, doctors are relieved to not have to play God.

I apologize for lumping you in with davidg about your opinion on AS.
Posted 4/23/2013 12:58 AM (GMT 0)
John,
I was considered to be young at dx, although nowhere nearly as young as you. Nothing that you have shared suggests that surgery is a 'no brainer'. Frankly, that suggestion is alarming although not surprising. My uro also strongly suggested surgery. No surprise there since he was/is a surgeon.
I would never tell you that your cancer is 'insignificant', but mine was, and I did AS for nearly 2 years. At that point, things changed for me, and I had a 'significant' cancer. I quickly learned that there were numerous treatments that would rid me of the disease. My concern was choosing the one that would allow me to continue the life that I wanted to lead. I did so, and I couldn't be happier with the results.
Do yourself a favor and explore your options before making a decision, and whatever you do, don't allow someone else to make your decision.
God bless you, Brother.
Posted 4/23/2013 1:01 AM (GMT 0)
Allen, for what it's worth you were wrong about my opinion on AS too (as with most other things stated here).

AS is great if the person qualifies for it medically and mentally. two things you have no idea about with regards to John and which his medical professionals should advise him about.

I know you mean well, but you come across as an activist in my opinion. This is not the best environment for that in my opinion.
Posted 4/23/2013 1:03 AM (GMT 0)
John-

Welcome. Sorry you have to meet us here. I was in your shoes quite recently. I had surgery less than 3 weeks ago and I'm doing great. (Aside from a few tiny healing incisions, occasional urine dribbles and ED rehab, it is nearly impossible for me to tell that I had surgery 19 days ago!)

I suspect that pretty soon you'll meet with a surgeon and perhaps with a Brachytherapy (radioactive seed implant) specialist. You may find these two links helpful. They contain the complete list of questions that I asked each doctor before making my decision of which course of therapy to pursue.

Important questions to ask your **LARP/RALP/RRP** doc
Important questions to ask your **Brachy** doc

-Gedman
Posted 4/23/2013 1:21 AM (GMT 0)
JohnMF, take a deep breath. Another 40something here. 41 at dx. 42 just 3 months at surgery. I was G6 on biopsy and remained that way after open surgery at Hopkins in Baltimore. Organ confined, clear margins, clear lymph nodes and seminal vesicles. I'm now a father of three kids, 5 and under. My wife told me she was preggo with our third the day after I had my consult with the uro. Talk about head spinning.

You'll be alright. Have a talk with another uro if you like. If not, don't. Do what you think is best not what statistics mongers and agendanistas might direct you toward. You are the Captain of your own ship and there are NO wrong moves.

Personally, I wrestled with surgery vs. brachy. I chose surgery because I was uncertain about exposing myself to radiation at 42 not knowing if I'd need more for this or something else down the road. Others here would disagree with that fear and downplay it. That's fine. I did what I thought best. It was surgically removed November 5, 2011.

I have not had any difficulties with incontinence. Erections remain a work in progress, but I'm back to about 70% of my capability naturally now nearly 18 months out... and with a pill I have the same ability and performance as I did prior to surgery. You'll hopefully hear from other 40somethings that can give you some further encouragement and assuage your fears.

To thine own heart be true. Good luck.
Posted 4/23/2013 3:19 AM (GMT 0)
John sorry you are now a member of our club. Based on your information you have time to explore all your options. In the end you have to do make a decision that is best for you. I am not going to try and influence you one way or the other. I would not want someone to regret a decision they made because I convinced them my way is the right way. I carefully considered all my options and for me surgery was the answer since there was no option of simply not having cancer. If asked I will gladly tell you and anyone why I chose my path and why I have no regrets. But for now gather as much information as you can, seek a second and if need be a third opinion. Good luck!
Jim
Posted 4/23/2013 3:31 AM (GMT 0)
Tall Allen,

You are hijacking the thread to push a personal preference.

All,

No more comments of the like, or I'll lock the thread. Please post something useful to the original poster, or nothing at all.

Posted 4/23/2013 3:39 AM (GMT 0)
John....sorry you have to be here.....but glad you found the place. Its nice to communicate with guys who have been there, done that. I think with your numbers you have some time to relax and learn as much as possible.

It really is you who has to make the final call on your treatment so you need to be as smart as possible about your disease. a gleason 6 is very curable and has a great prognosis....I think you also know many Docs will not always have your best interest at heart and are out to make money....that's just a fact with anything in life.;....which is all the more reason to do background checks on your doctors.....Good luck in whatever you choose...chris
Posted 4/23/2013 10:17 AM (GMT 0)
Hi John,
Sorry that you have to be here but welcome! I have have been lurking around here for years and this is my first post.

I was diagnosed @ age 45. I managed a 2 year active surveillance routine before I had my Da vinci RP surgery. So, this thing usually grows slowly. You have good Gleason score of 6. You'll want to take note of how many pins in your biopsy were found with cancer and to what percent. I had 3 pins out of 12 2<2% and 1<4% and a Gleason 3+3=6. I sought a second opinion and had my slides read again to confirm. I was looking to confirm the low Gleason Score because I wanted to make sure it wasn't more aggressive than what I was told. Also start looking for a Urologist that you are comfortable with, he is going to be your new partner for a long time.

This is life changing stuff, but with a little adapting and educating yourself, you are going to be fine! The bright side is that you have identified this now, you may not think so now, but you have caught this with enough time to have treatment and possibly be cured (the numbers are on your side!).

Bryan
Posted 4/23/2013 10:41 AM (GMT 0)
How often do we see the first doc to see a prospective patient advising him that everything is asap and don't seek other opinions is hardly mentioned. The wisest thing you can do is find out what you are dealing with, via education, opinions, nomograms, reviewed pathology by real experts, find out what side effects and trade offs come with each type of treatment or does A.S./W.W. actually make sense or is it doable for some duration??? Or you can rush into whatever with doc #1 and it might be all good, but do learn about your life changes that are part of the process.
Posted 4/23/2013 11:36 AM (GMT 0)
I'll add to my previous post by saying I got a second opinion. I went right to who I thought the experts were at Hopkins. I liked their confidence far more than the first uro I was referred to by my GP. I almost always get a second opinion... on just about anything of any concern, health or otherwise. But that is not always the way of others and I don't think people who stick with their first guy should be denigrated in anyway or mocked for doing so. Furthermore, to characterize doctors who tell you that you have a problem and should have it taken care of, merely out of their own desire to make money, is shameful. Not saying that doesn't happen, but painting doctors with such a wide brush is patently unfair.

This thread is a train-wreck of personal opinion, particularly for a first time poster who is clearly scared, to sift thru.
Posted 4/23/2013 11:39 AM (GMT 0)
John, welcome, I'm another 40 something guy with 2 kids. Scary stuff, isn't it? You've got some reading to do. You'll be fine. This is a life changing event, you will have new normal that's all. You seem to have a great attitude about obtaining knowledge. (You're here aren't you).
Don't be scared off by the spirited debate. IMO that is a good thing. You can learn why people are so passionate about their treatments. There are a lot of knowledge people here. Ask questions. Say how you are feeling. Vent if you want. Its OK. Knowing what your thinking helps people give advice (or more so, helps people that feel similar to jump in).
I read here everyday. I can't respond to every post, I don't have that kind of time... ( I have 2 busy kids who have normal lives to fulfill.). I do try to jump in when us 40's guys show up. I know exactly how you feel.
There has been some great advice given. Take a deep breath. Drop back and let us know how you're doing.
All the best!
Posted 4/23/2013 12:56 PM (GMT 0)
John,
Deep Breaths, take your time, and do your research. You are the one that has to live with your decision. Most specialists believe that their specialty is the "gold standard". Prostate cancer is serious and can be a lifetime battle. Good luck with what ever treatment you choose and remember that we are all here for you.
Regards,
Kris
Posted 4/23/2013 1:09 PM (GMT 0)
John, you're getting alot of opinions here, some of them will work for you and some of them won't.

Unfortunately, while much of what you are being told here has some merit, the final decision of how you would like to "take care" of your prostate cancer is 100% yours (and your wife's). If you're not comfortable with surgery (which many urologists suggest and may even say is the "gold standard" for treating prostate cancer), then don't rush into it. If you feel that radiation might be the better option for you (physically and emotionally), go for it. The important thing at this point (and this is the hard part) is to remove the emotion from your decision-making...you stand an excellent chance of eliminating prostate cancer from your body with either surgery or radiation...it's the side effects that each carries that you'll need to come to terms with.

I wish you well as you begin this journey. Remember to stay positive because it appears that you have every reason to be.
Posted 4/23/2013 1:31 PM (GMT 0)
Hi John, and welcome to our little corner of the world. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on. (You've also noticed some pretty "spirited" debate - that's just folks being passionate about their own choice of treatment so please, keep that in perspective!) Also understand that with your statistics you have time - time to learn about PCa and the various treatment options - so don't panic!

One of the early things to do at this point would be to get a 2nd read on your biopsy slides. Labs such as Bostwick and Epstein are two of the best and a 2nd opinion is usually a good thing to add to your dossier.

Along with forums such as this where you can learn from people that have and are going through what you are, do as much internet research as you can. When I was at your point in my journey I encountered the "paralysis by analysis" syndrome as I was spending several hours a day doing all of the research and reading as much as I could - but that's o.k. as it will put you in a better place in terms of deciding your choice of treatment.

There are a number of great books out there as well - Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchers" are two that I found incredibly helpful during that part of my journey.

You will also want to talk to and if possible meet with as many of the medical experts in the different treatment approaches as you can. When you do, be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining") same goes with ED. They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me.

As part of my journey to learn about the various treatment options I downloaded, purchased, and copied a number of studies and results that I would also be happy to share with you, so again if you are interested shoot an e-mail my way and I'll reply right away.

We are all out here to help - my very best wishes to you in this journey.
Posted 4/23/2013 4:52 PM (GMT 0)
John:

The problem with PC is that there are so many grey areas. There is no right or wrong answer much of the time.

When I got dx., I went to Umich Comprehensive Cancer Center. Maybe you have a similar facility near you. I met with a top-notch surgeon and a top-notch radiology expert. I was then scheduled to meet with a top-notch midical oncologist but I cancelled that meeting as all of my questions were answered based on my reading and the the meetings that day. I would suggest you read as much as possible and schedule meetings with some top-notch people in the field. In my case, AS was not an option as I was a G4+3. The next day I also met with a second surgeon (Dr. Menon and his team). I ended up doing surgery, based on all sorts of considerations. For me, I felt it afforded me a backup plan (radiation) if surgery fails. It also allowed me to get a complete pathology after the surgery so that I knew exactly what I was dealing with. I also preferred to have the surgery SE up front with the hope that it would improve. The radiation SE often appear 1-3 years after the treatments and can stay around. In my case, the surgery was not curative and the subsequent radiation was not curative so I am now on HT. However, my decisions were well thought out and I have no regrets whatsoever. Incidentally, after surgery I had incontinence that cleared up totally within maybe 2 weeks. There has been a degree of ED too.

In your case, AS may be an option, but it depends on how you view things. For me, even if it had been an option, I don't think my mentality would allow me to do it. I'm a "get it out" kind of person. But that is a very individualistic choice. AS does NOT mean doing nothing. It would mean frequent PSA tests and I assume occassional subsequent biopsies. Another aspect that would have disuaded me is seeing too many people getting a worse Gleason score after surgery than they had before surgery. If you TRULY have a G6, the odds are overwhelming that it is indolent. Very very few of the g6 cancers metasticize. The problem is that you don't know for sure that it is a G6.

Another thing you can do is get a second opinion on the slides. I sent mine in to Dr. Jonathon Epstein at Hopkins. He is one of the foremost experts in the field. He actually called me personally, confirming the Umich biopsy report. Oddly enough, when I decided to have my surgery done at Ford Hospital in Detroit, they reread my slides and said it was a G3+4. But post-surgery it again was a 4+3.

It sure would be nice to get a definitive answer in terms of what to do. There is none. You have to find youw own way. Read a lot. I also read a lot on this Forum. It was clear that some people just had a particular axe to grind. I could read the name and know exactly what they were going to say. But, eventually, if you read enough of these threads, you will get a good spectrum of information.

Good luck to you

Mel 

Post Edited (compiler) : 4/23/2013 10:56:59 AM (GMT-6)

Posted 4/23/2013 5:06 PM (GMT 0)
great advice Mel. Subtle and constructive post imo.
✚ New Topic ✚ Reply
12