My Story

This is great halbert, I think the more of these "Chronicles" we put out, the more valuable it will be to newbies, because everyone is different, and everyone approaches this differently.

And sorry you like me, had to see your dad taken by this garbage disease.

Part 2

I turned 40 in 1998. Starting that year, I requested my PCP to order PSA tests and to do a DRE during my annual physical exam. He felt it was too early, but after discussing my family history, he agreed. I'll admit that I've wondered myself if that was overkill, but ultimately, it's not a big deal, and bore fruit this year.

During the intervening years, my daughters all grew up, went through adolescence and college, two earned advanced degrees, and have started their own lives. In the summer of 2006, during a routine medical screening at work, the screening physician found two suspicious moles on my back. I had them biopsied later that year, and had surgery for Malignant Melanoma in November of 2006. They traced the lymph path to my axillary nodes (armpits), removed nodes from both sides, and the final diagnosis was 1 in situ MM, and 1 stage 1B with clear nodes. I felt I truly dodged the bullet there, and actually moved into a sort of denial, that while I qualified for the title "cancer survivor", I've always felt like I kind of cheated the definition.

Also, in the spring of 2007, when my middle daughter was getting ready for graduate school, a medical exam found that she had Papillary thyroid cancer. She had surgery that summer, learned how to eat iodine free, had a single radioactive iodine treatment, and has been cancer free for going on 8 years.

Backtracking, in 2001 my mother was found with breast cancer, at the age of 72, as a member of the group of women who developed breast cancer after years of hormone therapy.

All that is to say that I have the monster of Cancer throughout my family, and my diagnosis is not really a surprise. (end of part 2)

Part 4
My wife and I went down to St Louis on Jan 2 to visit BCJ and meet with Dr. Figenshau. During that visit, we got all our questions answered, and requested a referral from him to his RO team at BJC. Additionally, the pathologist as Wash U looked at my slides and concurred with the diagnosis. My bone scan and cat scan were clean, showing a small hiatal hernia and bone deterioration in my left knee and both shoulders (welcome to the arthritis club).

Ultimately, I've chosen to go with RALP for the common reasons. The biggest are wanting actual confirmation of the margins, and the psychological effect of knowing right away, not months in the future. I am concerned about the SEs, to be sure. However, I see the stats and they are relatively the same either way, and I'm deciding that I'm going to be in the "good" group, not the problem group.

My local URO is going to handle my follow up care (already confirmed and agreed to). They generally start low dose cialis treatment a few weeks post surgery to get the blood flowing down there, and generally get good results.

Next move: schedule the surgery and get ready for it.

You have had a lot of friggin' cancer in your life and your family. Always sorry to hear that. I lost both my parent to cancer--mom to colon and dad to pancreatic. Older brother also had PC and now he's just been diagnosed with leukemia and needs a bone marrow transplant. If I'm a match, I hope to step up in that regard, but this dang PC thing may disqualify me.

Thank you very much for sharing your story and I wish you the best of luck on your journey!

halbert, you and Prato have really raised the bar in terms of sharing your journey, and yes "Paying Forward." Thank you both for that, just awesome stuff for the newbies.

Regarding choosing the practitioner - as you've seen there's tons of studies and statistics out there about the various modalities in terms of success rates, risk of SE's and so on. Now that you've made your choice of treatment - I would encourage you to ask each specific practitioner what their specific results are for patients they have treated with your specific PCa stats. They all have them, and if they don't or aren't willing to share that would be a red flag for me.

Again, thanks for sharing your story and continued best to you!

Ok, time for the next installment: As of this afternoon (Monday, Jan 19) my daughter is admitted to the maternity ward and is in labor. So, grandparent status begins in the next 24 hours! The next week or so will involve a trip to the Shenandoah/New River valley region of Virginia to meet the grandson and a call to the surgical team at BJC west in St Louis to schedule my surgery. Once the surgery is scheduled, I'll be adding that date to my sig file.

I'm reasonably certain I'll have at least one pre-op trip to BJC. Are there any members in the St. Louis area who would be interested in meeting for coffee or an adult beverage when I make the pre-op trip? My email is in my profile.

Halbert,
I am in St.Louis and will gladly meet for a cup of coffee and share my journey with you.
I checked your profile in order to get your email address but it is unavailable. Mine is so feel free to contact me.
Put coffee in the subject line.
All the best.

So I've made my first trip to Walgreens for post surgery supplies. Donut cushion and absorbent pad for the bed. I've never wandered in that part of the store, just a bit weird.

Several of the recent newcomer posts have reminded me of what I'm starting to call my personal D-day (diagnosis day).

It was Friday, December 5, 2014. I had a 12 core biopsy on December 2, and they told me "it will be about a week" for results. It was, as I recall, a normal work day. I got home from work, fed the cat, took off my steel toe boots, brought in the mail...and noticed the red flashing light on the answering machine. Assuming it was some kind of robo-call, I pushed the play button and half attended for the first part until I heard, "This is ___ at Dr. N's office. Please call as soon as you get this message, and ask to be connected to me"

So, I called the office, got through voice mail jail, and asked for her. She informed me that my biopsy was back, and 3 of 12 cores were positive for cancer. I had enough presence of mind to ask what my Gleason was, and to ask what happens next. She asked me which days the next week would work for bone and cat scans, I gave some sort of answer, and she said she'd schedule the scans and get back to me on Monday.

It was about 4:30 in the afternoon when I hung up the phone. I sat in the chair, the TV was on, but I couldn't say what was on. The cat jumped up to join me...and promptly left when he wasn't getting what he liked. I don't think I moved for the next hour and a half. My wife got home from work a bit after six, came in to say hello, and asked what was wrong. I told her the news. After a minute or two of silence, she said, OK, we can't do anything about it now. What needs to happen now is a meal. Let's go get something. I don't know where we went, or what I had.

The whole weekend was like that. I floated through, did the things that had to be done, but no connection to them. We did talk a little about when and how we'd let the kids and my mother know. We agreed there was no point to saying much until we had the scan results back and evaluated.

By Dec 16, we had the scans back (no signs of mets) and had met with the local Uro, who went through everything with us. He arranged the visit to Barnes-Jewish in St. Louis to talk to the RALP surgeon, and via him, to talk to the RO group there.

Christmas was rough, no doubt about it. And, the good things also have come into much sharper relief. One daughter graduated from Nursing school in Rochester NY in mid-December. She's passed her boards and has a job. Another daughter gave birth last week (Jan 20), and I'll be heading out there at the end of this week for a visit.

TO LIFE!

OK, time for a bump and a 'week to go till surgery' comment.

To the newcomers: my experience with THE PHONE CALL is probably not unusual. Ultimately, an 800 lb gorilla has moved into my head, and he's thumping his chest and throwing things around and generally trying to get attention and frequently succeeding.

As mentioned before, my surgery is scheduled for Tuesday, Feb 17, at Barnes-Jewish hospital in St. Louis. I'm happy with my decision, and happy with my team. The most encouraging recent thought happened last Friday, when I went down there for my pre-op assessment. The anesthesia Nurse Practitioner said to me, "I see you're having Dr. Figenshau for your surgery. He's the best. If my husband needed what you're having, he's the guy I'd want." That is a great endorsement.

My daughters are all being supportive, my mother wishes she could be here, and my wife is going to take all week off work next week to be home. This group has also been a great resource. I've learned a lot from you guys (and a few ladies as well).

I'll be posting regularly on this thread as things get close, and afterwards from the other side.

Thanks to all of you!

Halbert, we'll all be thinking of you on the 17th, and looking forward to seeing you "on the other side".

Well halbert it looks like you are all set to go and countdown has started.

Good luck with your surgery. We will all be here waiting when you join us on the other side. You are going to do just fine.