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Posted 7/7/2015 5:48 PM (GMT 0)
Hi to all,
I got my Dx mid-June (Signature below). Leaning-- 90% decided-- to go with RA prostatectomy. I'm 56 years old.

I am located in the Raleigh/Durham area of the US, and am pretty close to UNC-Chapel Hill and Duke. It's probably a good problem to have, deciding between those two institutions. Eric Wallen is the surgeon at UNC, and appears to be very experienced in prostatectomy surgery generally, but also does a lot of renal/bladder. Seeing Duke people at the end of the week. I know Duke has the national reputation, but I like what I've seen at UNC, and UNC is VERY close to where I live. Are there favorites or anecdotes about these respective urological teams from anyone out there who may be in this area?

A complicating factor: about 2 weeks post biopsy I began to get some urinary symptoms, mainly retention, so now I'm on Flomax, which makes exercise hard. Does this bode ill (or well) for post-surgery?

Another complicating factor: I'm a runner (with heavy cross-training on the elliptical), and sometimes I'd get slight and fleeting pain in right hip (when running only) for about the past two + years. Now, for a week, right hip is sore, but don't think I overdid anything. I google 'hip pain' and 'prostate', the Internet says...well, you all know what it says. Bone scan is currently not being scheduled by UNC, maybe because of my clinical staging-- I don't know. How routine are the scans? Should I demand one? I don't want to go through surgery if the horse has already left the barn.

Too many questions, I know. But I am nervous as a cat. It's like having someone jump out and shout BOO to me about 100 times a day.

Thanks in advance-- this is a great forum and I appreciate all of you.
-------------------
Dx June, 2015
Abnormal DRE,
Clinical: PSA 5.0, T2a, 5 of 12 cores positive,
3 @ Gleason 6(3+3), (95%)
2 @ Gleason 7(3+4). (60%)

Post Edited (TheNative) : 7/7/2015 11:53:29 AM (GMT-6)

Posted 7/7/2015 6:26 PM (GMT 0)
Hi the Native:

Sorry to hear of your diagnosis.  My husband received his diagnosis last June.  I am sure many of the guys will be along to help you out, but I wanted to comment on the Flomax question as well as your hip pain question.

My husband used to be a marathon runner and still runs and works out heavily, although at this point we are talking like 3-4 miles a week, weights and the eliptical machine.  At 63, he has quite the list of orthopaedic problems at this point including lots of lower back and hip pain, groin pain, shoulder problems, etc. (he actually had back surgery a few years back).  It is very hard not to get frightened by the pain, but it does come with the territory of aging and being physically active.  You've already had it, so it isn't new.  It gets worse and more frequent with the years - at least that has been my husband's experience and comes out of nowhere or from something that never used to cause pain.    Scans are not the protocol at all with your numbers - neither doctor my husband consulted prior to his surgery (and his PSA was slightly higher than yours) would even consider it.  One went as far as to say that the days of insurance covering these tests at these numbers will be coming to an end as Medicare is about to quit paying for them and commercial insurance follows Medicare most of the time.   Some of these tests open up more problems than they solve because you may well have lots of ortho related problems that will show up on these different tests that will then need followed up on and you will cause yourself even more grief only to find out that it is probably just the years catching up with you.

My husband was on Flomax prior to his surgery.  It didn't impact him while he was on it and it wasn't a hint of post surgery things to come.  He was walking 4 miles a day on rather hilly terrain about 2 weeks post surgery.  It is a journey and it took him awhile to fully get his energy back, but he was determined to keep active and he has.

Good luck with everything. 

Posted 7/7/2015 6:29 PM (GMT 0)
Native, I got my Dx at 57 years old.  It's a shocker, and I've learned that the mental struggles are sometimes more difficult than the physical issues.  My biggest anxiety was waiting for the CT, Bone and MRI scans after the biopsy.  Based on your numbers I'm very certain the you'll be fine, nothing to worry about, except your treatment decision.  And you'll have plenty of time to make the right choice for you.  Others will weigh in on RT vs. RP.  My choice was surgery and I'm still happy with my choice.  Although, RT will likely provide the same rate of success.  The Bone scan is very likely NOT necessary, but if it'll give you comfort you could ask for one. 
Posted 7/7/2015 6:40 PM (GMT 0)
You really should spend appropriate time considering radiation treatments as well. Generally they offer the same cancer control with less severe side effects compared to surgery. Brachytherapy (both High Dose rate and permanent seeds) and SBRT can do wonders for you based on your initial diagnosis.
Posted 7/7/2015 6:48 PM (GMT 0)
Welcome to HW, sorry you need to be here.

It's a shock to learn you have PC. Sends the brain to bad places. You'll get through it. Won't be fun and normal will change.

Surgery is a good option for you. The various forms of radiation might work too.

Retention after biopsy happens, but after a couple of weeks I would have expected that to clear up. I doubt it would affect your surgery outcome - in fact it would likely improve if the prostate is removed.

As to the hip pain... Well, 56 year-old runner with hip pain... hmmm... More likely it's due to a 56 year-old running on purpose and the stress that that activity puts on a body. You're PSA isn't high enough to be worried about mets and I'd be very surprised if your PC has spread beyond the prostate. In your case a bone scan isn't worth the time or money as it likely won't show anything of importance. You might want to see an orthopedist and get a CT/MRI of you hip to see what might be wrong.

Hang in there and keep us updated on your progress,
Andrew
Posted 7/7/2015 6:53 PM (GMT 0)
So sorry you have to be here. But we'll try to help make the going as easy as possible for you.

I'd bet that close to 90% of us here worried every time we had an unexplained bone pain around the time we received our diagnosis--it's pretty logical for the human mind to make that connection. But the reality by the time anything spread to your bones you'd be looking at a PSA reading that dwarfs yours. With your numbers, it's just not likely. I also think that's probably why you weren't referred to for a bone scan.

I would agree with JNF that you shouldn't limit yourself to just seeing surgeons. Again, with your numbers the chances of a cure from ANY treatment are excellent, so I'd recommend that you do some due diligence on the brachytherapy and SBRT side as well. In general, urologists are not familiar with the ins and outs of radiation so you would need to branch out. You're fortunate that you have a lot of resources where you are.

Good luck and let us know how we can help!
Posted 7/7/2015 7:01 PM (GMT 0)
I thought I just posted a reply, but don't see it.
Dr. Wallen did my husband's surgery in 2010 and we were very pleased. He has lots of experience, has a good personality and spent as much time as we needed with us during appointments. He also has a very good infrastructure at UNC, including a nurse navigator. She was my first call with any questions, from "can I stay in my husband's room the night of surgery" to getting same day PSA results five years later. He also has a team of residents who will answer questions related to surgery or issues for the few days after release from the hospital. My husband had radiation after surgery, also at UNC. We were very happy with Dr. Chen his RO. If you have any questions about Dr. Wallen and our experience, feel free to contact me via email.
I doubt that Dr. Wallen will do a bone scan with a PSA of 5. My husband had PSA of 4.8 and had a bone scan by a previous urologist, but Dr. Wallen said he wouldn't have ordered it.
Good luck!
Posted 7/7/2015 7:02 PM (GMT 0)
I had 10 of 12 positive and my Uro said I didn’t need a bone scan or other imaging studies. I talked my private physician into doing some studies and had to pay for my MRI out of pocket; Guess what… The Uro was correct, it was a waste of time and money. Now 5 ½ years out, I’m pulling zeros without issues. At about 9 months out I did a difficult solo backpacking trip in the Bob Marshall Wilderness area in Montana. I’m going back this August for my 4th trip. My quality of life is good, my jump-shot not so much. I did 30 miles on my bike last Friday, and I can walk all day with a backpack. The newest info being published regarding long term success with the various radiation modalities does occasionally make me envious. However I’m very happy with where I’m at and wish the best for you.
Hero
Posted 7/7/2015 7:20 PM (GMT 0)
Sciatica!
Posted 7/7/2015 8:13 PM (GMT 0)
Wow. My day has been completely made. Thanks to all of you for your good advice and kind words. My goal, beyond getting through this, is to be as helpful to someone else as you all are to me.
Thank you!!
Posted 7/7/2015 8:31 PM (GMT 0)
Glad you found the site. I know since my diagnosis just a little bit over a year ago - at 56 also, followed by surgery last August, I have found great advice.

I run about 100 miles a month and did a half marathon in April - first one post surgery and only added about 5 minutes to my time from last year in the same run. If pain persists I would definitely get it checked out, but like others have said every little ache or pain becomes a worry at times.

After I had surgery, I was back to running very slowly after three weeks and am back to 5 or 6 times per week and usually do 4 miles. It does get somewhat back to normal.

Good luck in whatever option you select. Each person just needs to research and find out what is best for you. Once your decision is made, there is a huge sigh of relief; at least there was in my case.

Wishing you the best of luck!
Posted 7/7/2015 9:44 PM (GMT 0)
Native, welcome to the club nobody wants to join. You're getting some great suggestions already. I think you'll be in good hands anywhere you wind up in the Research Triangle. It's ok, even recommended, to ask your surgeon specifically how many RALP surgeries he's done, and what his personal "cure" and "trifecta" rate are.

I'm almost 5 months since RALP, and I'm glad to say that I'm all the way back. No ED issues at all. I drip a little under stress, but I barely notice it. If you're in great physical condition before surgery, that makes a huge difference. Just be willing to build back up slowly. There are some runners in here who will surely share their stories with you.

Absolutely keep coming around afterwards. I figure I owe the newbies for what I gained from the experienced guys in here.

I found it helpful to keep a diary, along with an accordion folder for all the freaking PAPER.
Posted 7/7/2015 9:59 PM (GMT 0)
Welcome aboard Native!

We all know how you feel right now having all been through it before.

Which ever treatment plan you decide, you should be able to beat this with no problem.

Be sure you pick a doctor that has had a lot of experience in his or her field even if you have to travel to get it done. There are no do overs!

As you can see by some of the comments so far, most of us favor OUR treatment of choice. I don't like to push it. You need to investigate all options and decide what is best for you.

Good Luck

Bill from Florida cool
Posted 7/8/2015 12:31 AM (GMT 0)
Hey Native,
I don't have much to add but wanted to extend a welcome to the site. Lots of smart guys here that can help you navigate this new part of your life. Just a small point to add that your current fitness level will be an advantage to your recovery but would like to caution you to take time to heal regardless of your choice of treatments. It may sound counterintuitive to your nature but your body will need its rest,especially if you decide on surgery. Best wishes to you on whatever treatment otion you choose.
Posted 7/8/2015 12:43 AM (GMT 0)
Welcome to HealingWell, and I'm glad you were already able to find some good information and reassurance here. This is a great place for both.

I'll just throw in with those who said that your PSA score makes mets pretty unlikely; I wouldn't lose any sleep over it. You're at a center of excellence and I'm sure they'd recommend scans if they were appropriate.

I also agree with those who said to consider other treatment options. You've got some time with this, so use it to become better informed. I suggest you not dismiss any treatment option before really investigating it. Keep an open mind, read up, and get second and third opinions. I suggest you talk to a surgeon, a radiation doc and a medical oncologist who specializes in prostate cancer. You'll get different perspectives and a lot of good information from knowledgeable people. If nothing else, it will give you some assurance that you're doing the right thing when you do select a course of treatment.

Finally, I'll say that even at a center of excellence some docs are more experienced than others. Asking a doc how many prostatectomies he's done is not inappropriate, it's vital information. The correct answer is several hundred or more.

Whatever you choose, good luck with your course of treatment and let us know how you make out. And don't freak out. This is a scary thing and your mind will haunt you if you let it. This is a very treatable condition, you're otherwise very healthy, you're at a world class medical center and you're going to be fine. Let that be your mantra.

Best,

Jonathan
Posted 7/8/2015 12:46 AM (GMT 0)
Not much to add from me either Native, but welcome to the forum.
I used to run. In my 30s and 40s, not crazy but about 25-30 miles a week. But 2 knee surgeries finally put a stop to that, so I walk now, mostly. And it helped immensely with my recovery.

Whatever treatment you decide, you'll do well. There is life after PC. And it's great that you are already looking forward to sticking around to help others,

Good luck, keep the faith
Posted 7/8/2015 3:10 AM (GMT 0)
Hello Native. Welcome to the forum.

As others have said it is unlikely that your hip pain has anything to do with your prostate cancer. If you ask around to some of the other 56 year old runners you know you will find that they all have something that hurts. Based on your relatively low PSA and your middle-of-the-road biopsy result it would be odd if you turned out to have bone metastases. Not that it''s impossible, mind you, but not at all likely.

You and I are apparently neighbors, at least from a world geography point of view. I also live in the Raleigh/Durham area (on the Apex side of Cary.) If you send me an email I will be glad to de-cloak (click the envelope icon to the left of this message.) Who knows, I might turn out to be your next door neighbor. I might be that guy you've always disliked since his dog got loose and had a poo on your driveway.
Posted 7/8/2015 5:02 PM (GMT 0)
Thanks again, everyone.
jay1957, I may have some running related questions later on. I hope I do!
Posted 7/8/2015 6:12 PM (GMT 0)

TheNative said...

Too many questions, I know. But I am nervous as a cat. It's like having someone jump out and shout BOO to me about 100 times a day.

Sorry to see you here, but glad you found us.

I know just what you mean about that sensation! Great way to express it. Every time your mind circles back to this, the butterflies in your stomach take flight again.

You'll probably find over a couple of weeks that this will happen less and less, and once into the treatment phase it's no longer common. Once the enemy stops scaring you, and you start fighting the battle, the emotional side seems to settle down quite a bit.

I think you're going to have a really good outcome no matter what treatment you end up deciding on. Hang in there man, you can do this!
Posted 7/8/2015 7:51 PM (GMT 0)
Hey Native...

I was having lower back and hip pain when diagnosed as well. (Scary stuff...a PC diagnosis and the Internet are a dangerous combo!).

I had every scan known to man. They'll point out .."Possible this..." "Possible that...". (Even more scary!). Then...that leads to further testing...etc...

I'd submit that, not unlike myself, you've begun the aches and pains process of aging...which is a new thing for us middle 50ish guys.

I'd do as my doc suggests (I did not, which just led to unnecessary worry and anxiety.) I demanded the scans against their recommendations.

With your PSA..a scan wouldn't show anything even if it's already gone (which I highly doubt).

Such is the nature of this beast. But, my money is on youll be just fine...because thats where the smart money is.

Good luck...
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