Okay, so I have cancer. THAT's different.

[VaNurse]

Chad, I'm no doctor nor specialist in this but, as a nurse with my minimal direct knowledge of prostate cancer, I fully agree with getting a 2nd opinion. I would think if your PSA is between 2 and 3, even with the biopsy, I would be looking at less invasive procedures than a complete prostatectomy. Here are a couple of very informative links from reputable sources:
National Cancer Institute
The Cleveland Clinic

Some recommendations from the National Cancer Institute (NCI):

* There are treatment options--be sure to know them all.
* Treatments and medical procedures have improved over the past 10 years.
* You must make the decision that is right for you--not your doctor.
* Seek the opinions of several different doctors since some may only recommend the option they know the most about.
* Take the time you need to research your options before making your decision. There's usually no need to rush.
* Your spouse or partner has an important role in your decision and will be affected by your choice.
* Try to be open and honest with each other about your concerns.
* Organizations and support groups can help you learn more about what others in your situation are doing for their prostate cancer.
* It is possible to live a full life after prostate cancer.


From a community standpoint, I appreciate that you came forward and shared this with us MadJackers. As you face this challenge please know that there are many out here sending good karma, prayers, good juju or whatever. No matter how we differ, this is something that brings this community together. There are many sitting behind their keyboards saying "There but for the grace of God..." and, hopefully, thinking about asking their doc for a PSA baseline at their next physical.

Guys, quit bitching about the digital exam. We gals have had to put up with poking and prodding by doctors in embarassing places for years and, to be totally blunt, we've probably heard more than once from lovers how much we'd love it if we'd let them insert something a bit more substantial than a finger into the same orifice for a more sustained period of time! But... that's enough of that. My point is to all of you. It's not "gay" to have a standard medical procedure once a year, so don't avoid it.

Chadman, your having shared your fear, confusion, determination and confidence in opinions from us, "message board avatars", may help countless others become informed about a disease that's not discussed or promoted like breast cancer.

Navigating the medical system is difficult under the best of circumstances. Doing it with the increased stress of a life-threatening diagnosis and uncertainty of insurance or ability to pay must be absolute Hell!! I'm more than happy to continue to try to research this for you and sort of act as your "virtual case manager", helping with pertinent questions you want to ask of your doctor or help with explaining your options in "normal" language. Just ask Jack for my e-mail. I'm happy to help in any way I can!

I'm listing the questions that, according to NCI, you should have answered before you ever consider the treatment:

You may want to ask your doctor these questions before choosing your treatment:

What is the grade of the tumor?


What is the stage of the disease? Has the cancer spread? Do any lymph nodes show signs of cancer?


What is the goal of treatment? What are my treatment choices? Which do you recommend for me? Why?


What are the expected benefits of each type of treatment?


What are the risks and possible side effects of each treatment? How can side effects be managed?


What can I do to prepare for treatment?


Will I need to stay in the hospital? If so, for how long?


How will treatment affect my normal activities? Will it affect my sex life? Will I have urinary problems? Will I have bowel problems?


What will the treatment cost? Will my insurance cover it?


Would a clinical trial (research study) be appropriate for me?


Can you recommend other doctors who could give me a second opinion about my treatment options?

I hope this helps some as you and your family move forward!

Marsha

 

[DOGS THAT BARK]

Chad have had 2 close friends had prostate removed --both concur on erection but none were ever in danger of the diapers.

--the diff is both were older and sex life was not that important.

You are certainly in a diff circumstance considering your age--I think one very important key is the nature of this type of cancer--as your Dr said very slow moving. In fact have had several clients diagnosed in mid to late 70's and their Dr did not recommend surgury saying they would die of other causes 1st.

With that in mind I do not believe I would opt for complete removal at this time.

I would check into Mexico procedure at length and ask for references of those that have had procedure and speak with them-- then check on any time frame for anticipated fda approval in U.S.

--The one factor leaning in your favor is time-it is not type of cancer you have to do something today. I don't know if you asked him--but one question I'd have for doctor is his opinion on time frame on expected growth of cancer--eg condition now vs year from now. I am certainly no expert on this but somehow would think- considering 2% and PSA that removal of prostrate would be a bit drastic measure to consider at this point and would get 2nd and 3rd opinions if necessary.

Hang tough buddy

 

[SixFive]

Chad, I love to read that u r considering all options and not just toeing the line ur doctor marks on the floor. I've been a nurse a long time, and I know/have known a lot of surgeons. No matter how nice and great a surgeon is, surgeons make their money doing surgery... That's what they like to do!

Considering incontinence and impotence is also very important. Sure, the surgeon can carve u up and get all the cancer, but maybe that leaves u with 2 new problems that will be permanent and totally mentally incapacitating. To b absolutely frank, if ur a man and u can't have an erection, ur not gonna b happy. Some things are worse than cancer. That's one of the main reasons people with diagnosed and treated hypertension still have strokes. The meds cause impotence sometimes, so guys don't take them.

I didn't read anything here about it, but even in our relatively small town, a couple of our urologists do a robot assisted prostate surgery that is very successful and has a lower rate of impotence. Check into that for sure.


Best wishes to u, and I hope u get some good news about treatment and insurance. Lastly, our FDA limits and excludes treatments that are proven elsewhere. It would not scare me at all to consider a non-approved treatment elsewhere!! In simpler words, eff the FDA!

 

[jr11]

I think I read through most of this, having gone through this (cancer) with my wife for 10 years, losing her 2 years ago, there are a few things I would like to say that 6-5 and Va Nurse and others already stated....

Get multiple opinions, is surgery the only option, given the low percentage (which I dont know what this means for this type of cancer) do you have time to explore something else in a less invasive manner first or alternative approach somewhere else or abroad. ie the path of least resistance first falling on surgery afterwards if needed. The ramifications from this surgery may be difficult, but also may save and prolong your life too.

Stay strong and positive as much as possible, easy to say, but I am a firm believer in this. My wife lost her dad and grandfather and mother in a span of a year, that stress greiving depression and mourning made a lump in the neck and armpit explode to her lungs, never seen anything like it when I read the films. My point, have the kick ass attitude and do your best to think you can beat this in a convincing fashion.

I am sure you have great support from your family and friends, and many of us here too. Utilize this, that is what makes this community here great. I for one appreciate you sharing, you will be in my thoughts and prayers. Please keep us updated.

jr11

 

[dr. freeze]

If it were me, I would think about getting a second opinion on the biopsy interpretation. Prostate cancer can be difficult to diagnose and 2% of one out of 12 specimens is not always clear cut. I have heard of prostatectomies for mis-diagnoses.

Second, I would consider radiation and talk to an experienced radiation oncologist for his opinion.

Third I would not undergo surgery at any small institution or from any urologist who is not well-seasoned in the latest and greatest surgery and who does not do surgery often. I would also not undergo surgery from a urologist who does not at least tell me to consider radiation as an option.

Fourth, I would consider the grade of the cancer in my decisions and would have the doctor include that in the decision making process.

These are only things that I would consider if it were me and should not and do not constitute any kind of medical advice.

 

[Jaxx]

If it were me, I would think about getting a second opinion on the biopsy interpretation. Prostate cancer can be difficult to diagnose and 2% of one out of 12 specimens is not always clear cut. I have heard of prostatectomies for mis-diagnoses.

Second, I would consider radiation and talk to an experienced radiation oncologist for his opinion.

Third I would not undergo surgery at any small institution or from any urologist who is not well-seasoned in the latest and greatest surgery and who does not do surgery often. I would also not undergo surgery from a urologist who does not at least tell me to consider radiation as an option.

Fourth, I would consider the grade of the cancer in my decisions and would have the doctor include that in the decision making process.

These are only things that I would consider if it were me and should not and do not constitute any kind of medical advice.

Where the hell you been?

 

[saint]

Seems like a lot of red flags as others have pointed out. I'd get a 2nd opinion asap. See what Dr Freeze said, he is right on.

 

[gardenweasel]

If it were me, I would think about getting a second opinion on the biopsy interpretation. Prostate cancer can be difficult to diagnose and 2% of one out of 12 specimens is not always clear cut. I have heard of prostatectomies for mis-diagnoses.

Second, I would consider radiation and talk to an experienced radiation oncologist for his opinion.

Third I would not undergo surgery at any small institution or from any urologist who is not well-seasoned in the latest and greatest surgery and who does not do surgery often. I would also not undergo surgery from a urologist who does not at least tell me to consider radiation as an option.

Fourth, I would consider the grade of the cancer in my decisions and would have the doctor include that in the decision making process.

These are only things that I would consider if it were me and should not and do not constitute any kind of medical advice.

i thought it felt cold in here.....:toast:

 

[The Joker]

I post all this, not to keep the sympathy train going (which I do appreciate - thanks to all of you for your well wishes), but to gain information and knowledge from the MadJack's community.

Keep in mind that you are increasing the knowledge of the MJ community and who knows, possibly encouraging others to be more preventative and schedule yearly screenings - no joke, you could be saving lives here......I for one, appreciate your posts for all reasons including these.

may God bless you.........

 

[gardenweasel]

Keep in mind that you are increasing the knowledge of the MJ community and who knows, possibly encouraging others to be more preventative and schedule yearly screenings - no joke, you could be saving lives here......I for one, appreciate your posts for all reasons including these.

may God bless you.........

well said...and why not use the forum for a little moral support?....going through something like this,it`s good to utilize all your resources informationally and support-wise...

lots of us have been here for a good while....agreeing,disagreeing,laughing,kicking shins....

many of us have quite a bit of history together on this board....:toast:

 

[The Joker]

Chad, I love to read that u r considering all options and not just toeing the line ur doctor marks on the floor. I've been a nurse a long time, and I know/have known a lot of surgeons. No matter how nice and great a surgeon is, surgeons make their money doing surgery... That's what they like to do!

If it were me, I would think about getting a second opinion on the biopsy interpretation. Prostate cancer can be difficult to diagnose and 2% of one out of 12 specimens is not always clear cut. I have heard of prostatectomies for mis-diagnoses.

Second, I would consider radiation and talk to an experienced radiation oncologist for his opinion.

Chadman - this is good advice and insight.......

 

[Chadman]

Okay, guys and gals, I'm gonna post a time or two on this, since it's been so long and I've dealt with plenty over the past couple of months. For starters - again - thanks SO MUCH for all of your thoughts and posts, I can't tell you how much that means to me. Second, I apologize for getting everyone up in a dander, and then letting this thread go for so long. Update coming immediately.

 

[Chadman]

Okay, here is the official update. I was able to spend some time with a VERY respected urologist that works in a wonderful group in my area, and works out of one of the two top urology cancer hospitals in MN, the other is the Mayo Clinic. These two are listed in the Top 50 in the country, and I've researched this urologist and the group he works with extensively. He's terrific. And he has a wonderful manner about him, he's extremely knowledgeable about various procedures, does many of them himself, and shares his information nationwide in an exclusive group that is devoted to studying these procedures and forwarding options for patients. I've spoken to some of his patients, others who have been to him for other things than cancer, and every single person speaks incredibly highly of him. Small point that to me counts for something - my new urologist spends much of his vacation and free time going to Haiti and working on patients there. Something about that tells me the man might be a very caring and thoughtful person, let alone a good surgeon.

This urologist spent a great deal of time with my wife and I going over multiple options. Some he performed himself, some he didn't, but others in his group did. My first urologist did NONE of this, and gave us NONE of the information this one did. I cannot stress enough for anyone who could possibly go through this in the future - PLEASE spend some time considering multiple options for a Urologist, or any doctor, I suppose. While I could be completely snowed by this man, I can tell you that I am a pretty good judge of character and personality, and this man was just a good man. He has an impeccable record, but more importantly, he listened, answered, and laid out every possible option and the plusses and minuses. He was a true partner in the process. He had nowhere else to go. He was there for us. I can't say any more about that... he is just the right man for me. Good or bad. Sorry for the extended explanation - but for me, this was almost the ultimate thing. I had to be sure I "thought" I was going to be in good hands. I think I am.

Many of you are very plugged in to the medical issues and what goes on with all of this. I don't feel like spending a lot of time tonight with the specifics of all of this, as there are a ton of them. I plan to spend more time here moving forward, and talking about this more specifically, as I can only hope this helps the MadJackers to be more aware, and some of you to take steps to make sure you get things checked out. So, I'll give you my own personal quick plan and go from there.

After considering Cryotherapy (freezing the bad parts) for one part of my prostate and hoping for the best, I decided to have the prostate removed with a surgical procedure that does not include the robotic procedure. In short, I am having a cut and removal of my prostate, hopefully protecting the nerves that attach to it, and quickly retain my urination and relatively regain my (um) erection capabilities. My surgeon has a wonderful record of regaining both for his patients, and he gave me some sensible expectations of what to expect for both. Let's just say that the percentages and numbers this urologist is giving me are much better than the last one, and he was always quick to point out that anything can happen. Maybe I'm stupid, but I don't think so. He's very successful, gives his time to support groups and his vacation time to treating patients in Haiti, so I don't think he needs my money or time all that much. Of course I could be wrong, but we all have to make tough decisions.

I considered many things. I considered my present, my future, my options, and the people who were talking to me. Right or wrong, I love my urologist/surgeon. I am happy to have my situation in his hands, and can live with the decisions I've made - with my wife, and with the input and thoughts of others.

I start another semester (one of my last) towards my teaching degree on Monday. I'm going to attack that with everything I have. I'm having my surgery just before Spring Break, and hopefully will be back in classes soon after. And if all goes well, the rest is history. If things go bad - we'll deal with those things when they come up.

Again, thanks for ALL of the input here, and the support. You are all my friends. Some of you more than you can know. I don't know of many places I visit on a daily basis. I visit this place every day. NO doubt there will be ups and downs in my process. For this one day, we are going through a sort of "up." I may not have made the right decision, but for me, today, I think I have. Thanks to all of you.

 

[Chadman]

If anyone has any specific questions about the procedures and information about possible treatments other than what I've mentioned, just ask. I don't know much, but I can tell you what I was told - for my situation. I didn't spend much time on them, because they didn't make too much sense from what I could see.

 

[dunclock]

best of luck Chad and your reporting will definitely help any others with questions in the future...wishing you the best bud :0074

 

[UGA12]

It sounds like you have you have made a well informed decision that you are comfortable with. I wish you nothing but the best, it sounds like you are in very good hands. Keep us posted!

 

[gardenweasel]

sounds like you have good people involved.....

my urologist said the chances of retaining full function are very favorable...

really happy that you found the right doctor and have your head wrapped around the issue and are ready to move forward....

don`t be too hard on the first dr.....think how fortunate you are that the problem was diagnosed early...



g.l.,brother....

 

[the addict]

god bless ya chadman....my grandma is fighting cancer currently, and i keep tellin her chin up. This is just a bump in the road on the path your taking to a long blessed life! best of luck with everything including school!

 

[kellyindallas]

Good luck, Chadman. I've never talked to you, but have always been impressed with your posts. You sound like a very good guy. Will be thinking the best for you...:0074

 

[Jake DeNiro]

Good luck Chadman and stay positive....:0074