Thank you all!

My first post was entitled "freaking out." Its not a good phone call to get - I was convinced there was some kind of mistake in the PSA tests. It was no mistake. Since I posted last, I have been reading, seeking mentors, speaking with doctors and researching various options and surgeons. It has been pretty non-stop (other than my normal work responsibilities). The "freak out" phase is over. I'm proud to be part of this new club (but not happy to be), because I realize you all have had to go through this - many of you on the other side of what I have in front of me. So - thank you for the good advice and quick support.

I was very prepared for my follow-up meeting with the urologist, which was yesterday. I had a lot of questions. He actually had the nerve to interrupt me every time and tell me that the questions I was asking didn't matter and that I needed to come to grips with the fact that I needed surgery. Needless to say, I am changing doctors. I am heading into Dana Faber to get a team of specialists in this area that can assess my situation in a holistic manner. If I need surgery - so be it. I'm ready for this; I feel strong and have grounded faith & family. Given what happened in this city (Boston) recently, I would have to be completely self-absorbed to complain about my situation.

Your feedback was very helpful. Thank you all. I'm sorry if I stirred the pot in some manner - I did not mean to do that. I did learn at my meeting yesterday that of the 10 cores taken in the biopsy, 6 (from the same lobe) were cancerous and 80% of the tissue from those six cores were cancerous. So apparently, that points more to surgery versus watching the disease. I'm not messing around with this thing - my entire focus at this point is to find the best team I can find; then, if it is surgery - what kind of surgery, when and with whom.

God bless ...

Best of luck in your journey.

Don't worry about stirring the pot here - sometimes it's self-stirring. ;)
Just ask what you need to.

You really need a doctor that will listen and answer your questions. If he won't do that, you don't need him. Getting a good medical team on your side is what matters the most.

All the best,
Andrew

Hi John, and good to hear from you again. Well, certainly appears you've got yourself uprighted and moving forward - good for you!!!! We all go through or have gone through those various stages after hearing the "C" word - being completely stunned, to denial, anger, and so on - right on up to, o.k., I got it, time to start learning and then kicking the beast's @$$!!!

Keep your options open as you meet with, and learn more, both from the medical community as well as published reports and studies, and from those of us that have been there, done that.

You're on the right track brother, keep it going and let us know what we can do to help.

Hi there,

Yes, with the biopsy stats, you should definitely kiss off any thoughts of AS. Time to consult with radiation oncologists & uro/surgeons to see if surgery or radiation would be best for you. Although I often lean toward da Vinci, there are pros & cons with both major forms of treatment (surgery and radiation).

But, with whatever treatment you ultimately choose, you should be just fine! :)

Here's a little story about freaking out when you get the diagnosis. I did not go crazy, but I sure felt absolutely suckerpunched in the gut and in the back at the same time.

I had my biopsy on a Tuesday and, afterward, my doctor said he saw nothing suspicious on the ultrasound screen as he took 20 cores. I felt pretty confident that the results would be benign.

So three days later, on Friday, the uro's office called while I was out. I saw their message and went down to my desk to call them and was thinking about how the rest of my life could be mapped out in the next couple minutes.

So I called the office sitting at my desk and feeling rather nervous. The woman I was speaking with checked the reports and, as I held my breath, said the word .... BENIGN! I cannot describe how I felt the relief coursing through my veins and was saying a silent, "Thank God!"

But then, suddenly, she said, "Oh, wait a minute." I sat there confused & was then put on hold for a moment. When she came back on, I could hear her shuffling papers and then saying to me, "Sorry, I was reading someone else's report. Yours is ..... MALIGNANT!"

Likewise, I cannot tell you how it felt when that cool pouring of relief going through me suddenly reversed direction and morphed into absolute shock.

She then said, "I can set up an appointment for you to see the doctor next Thursday." And I was thinking how crazy it was that they expected me to wait a week to get the prognosis. Then she suddenly changed her thinking and said, "Wait, maybe you'd rather see the doctor sooner?" I almost replied, "No $hit!!"

So she changed it to Monday. And I spent the whole weekend through late Monday afternoon drifting in thought of "was it something found in time or will I be receiving a death sentence, etc." Fortunately it turned out to be okay.

But I realized very quickly -- especially the way it happened to me -- the kind of terror a person goes through when diagnosed with any form of cancer.

I was unaware of PC forums such as this one, and did not discover them until AFTER my surgery.

And that is one of the reasons I am here and also another PC forum -- just to try & alleviate any unnecessary fears that someone else might be experiencing, ESPECIALLY if they cannot see their doctor right away & are left alone with their thoughts.

Everyone who posts here helps make this forum a Godsend to those who suddenly find themselves deposited at the beginning of this road.

Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.

Post Edited (HighlanderCFH) : 4/26/2013 2:46:12 PM (GMT-6)

Chuck, I remember that Friday call too. That was a long weekend before I went in for the last appointment on Monday. Do they schedule people who get bad news last in the day to make sure the office is empty? I couldn't get a single word out while he told me. I think it was a momentary moment of complete madness.