HealingWell
Search Close Search
☰

"Lurker" coming out

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/5/2015 5:39 AM (GMT 0)
Hello everyone. I'm 50 y.o. who was diagnosed in March on a DRE with a PSA of 4.5, and had a robotic prostatectomy done in April by Brian Miles at Houston Methodist. Gleason at diagnosis was 7(4+3), and with a family history of aggressive PC (father) I opted for surgery. Surgery resulted in a G 8(4+4) so it was the right choice. Negative margins, SVI and PNI both negative, no EPE so the surgical outcome was excellent.

Recovery has gone well, though ED is still an issue, and I just don't have the physical stamina overall I had before. I know it will come back, as will the performance issue as both nerves were fully spared and Dr. Miles said they both "looked in excellent shape", so I'm being patient. I was fully continent too within 4 weeks of the surgery - closer to 3 weeks but I still used a pad for a week just to be sure. The only other recovery issues I have are knee pain, and tailbone pain if I sit too long in one place.

I've been reading over some of these posts about guys not doing nearly as well and it breaks my heart. Sue, Sammy's Wife, just to name 2 of them. Even though it's been 18 years I still remember all too well what my dad went through, and my experience dove tails with your experiences pretty closely. Taking care of him (my mom had died of a MI 2 years earlier) was the hardest and most loving thing I've ever done, but there was a purpose in me doing so because it taught me this was going to be a matter of when and not if so I was ready for it.

You all have my prayers. Enjoy the time you have left with your husband/significant other/father - you may have more time with him than you expect and you don't want to waste a second of it. Please feel free to ask if there is anything at all I can do for you. Thank you.
Posted 9/5/2015 2:16 PM (GMT 0)
ST, great first post, welcome to active participation in the forum. Hate to see a guy as young as you show up here, but it sounds like you are doing well.
I'm 4 months ahead of you, having had surgery in January, and I can tell you, the stamina comes back, it just takes time. I have as much energy as ever.
Posted 9/5/2015 2:50 PM (GMT 0)
I have been a lurker to some of the more dire posts on this forum. I am most impressed with the volume of love and dedication families and friends show during the difficult times. The amount of support on this forum is phenomenal. I've learned so much. My husband has relied on me to be the researcher and this has been the go to place. We would not have half the knowledge without this great site.
Posted 9/5/2015 3:56 PM (GMT 0)
Thanks Protoman. It's good to hear from someone further down the road there are brighter days ahead. I've really been feeling blessed about the recovery and wish there were some way I could share some of this.

The whole experience has been a testament to the power of screening and early detection, so it amazes me to no end when I read medical professionals wanting to cut down on PSA screenings. Those screenings saved my life, but PSA alone isn't enough. I had no discernible PSA elevation when the doctor felt the lump during the DRE - in fact it had gone down a little. I know it naturally fluctuates, but the point is it hadn't changed much at all, and it was found only because it became palpable on the DRE - necessitating the biopsy. In the post op the doctor said since the tumor was a higher grade waiting 6 months even would have likely been a problem. Now that I think about it, after my dad died (I was 32 at the time) we started PSA monitoring, and DRE's starting about age 40, so I've effectively been under Active Surveillance up until this year?

Sorry if I'm rambling but I guess I've been bottling up a lot since my diagnosis because it's a little hard to talk to others who haven't gone through it. My friends see how great I'm doing after surgery and think it's no big deal - but it is, and I know everyone here knows that. Also, I've read some comments by people indicating they have friends (and some themselves) who think PC is always a slowly progressing disease and it's best left alone. This is true - in a lot of cases. However, the times it's not you are in for a long, agonizing journey that with modern medicine never ends well (that I've heard). I know because I've seen it firsthand with my dad, and what I've been reading here sounds all too familiar. His PSA was in the 2000's and he had lymph and bone mets by the time he started having problems bad enough to get it checked, and 18 months later I let him go (long story there) and he died. Even now, 18 1/2 years later I cry as I remember what he went through.

Point is, if you have a family history of PC be diligent, be aggressive, and be informed - just don't be scared. This can be beat but it's up to you.
Posted 9/5/2015 6:34 PM (GMT 0)
I am happy you have made such great progress and agree with you on PSA testing. I was 48 when diagnosed and it was the PSA that caught it. Like you, I chose Methodist hospital for my surgery. We are fortunate to be in a city that offered so many options.
Posted 9/5/2015 10:23 PM (GMT 0)
Welcome to this side of the forum.

Glad you came out of lurker mode.

Keep us updated on your progress.

Andrew
Posted 9/6/2015 2:18 AM (GMT 0)
Tex,
What a kind and considerate offer and support for those of us who are fighting for their lives or the life of their loved ones. I know I appreciate all those prayers and supportive comments, and I'm sure others do as well!
Posted 9/6/2015 1:34 PM (GMT 0)
I am up in The Woodlands and was in Memorial Hermann here for my surgery last August. I know there were days when it was tough to not have someone to talk with. Feel free to contact me via email if you ever need someone. There is a support group that meets in Houston also - once a month. I have not been, but get their emails and can send them to you if you wish to attend. One day I hope to attend, but they are about 35 miles or so from me.

Best of luck as you continue to recover, it gets easier bit by bit.
Posted 9/6/2015 1:44 PM (GMT 0)
Texan, I'm also just a few months ahead of you, having had my surgery in February. I feel good also, and I'm pretty much able to do whatever I want, as long as I remind myself that I'm not 18 anymore.

We've had numerous discussions in here about screening and education. I'm glad you took the time and possibly forced the issue for early screening in your case. I did the same thing, starting PSA and DRE in my early 40's, for the same reasons. I'm glad you have a primary care doctor who was willing to support you in your early efforts.

It will get better, day by day. You don't mention what your SE's are (if any). If they are minimal, I for one am always glad to hear another surgical "success story" that belies the meme of "Don't do surgery, you're guaranteed perpetual leakage and ED".
Posted 9/7/2015 1:37 PM (GMT 0)
So, where do "skiing Texans" do their skiing? It obviously involves some travel.

I'm a ski instructor in New England, so welcome, from one skier to another. Sorry you have to be here though.
Posted 5/3/2017 3:49 AM (GMT 0)
I just happened upon this post from 2015 and thought I should update it - I got busy and realized I was spending WAAAAAY too much time on the computer so I stepped away for a bit, but the PC situation has been fairly uneventful. PSA continues to be non-detectable, and the ED is no longer a problem. about the only SE I'm seeing is a little dribble after I go to the bathroom, but I can deal with it. Doctor feels good enough about the pathology and continued ND PSA results that he agreed to let me back on TRT so I'm feeling starting to feel good again.

I do come to HW when I can and try to keep up with as many folks as possible, but I don't participate much because when I'm here I spend most of my time reading the amazingly well-educated responses of all you guys who have poured so much of your lives in to being the best resources possible. I always know the first place to go when I have questions! Thank you all, and I'll try to be more active going forward.

BTW dmlvt: "Skiing Texans" have to climb in to an airplane and fly 2 hours minimum to do any skiing. ABQ is the closest, but then there is another 2 hour drive to get to the really good NM skiing. If you want to fly further there is of course CO, CA, UT, WY, and MT. At my height I was getting out on average 10 to 12 days a year. Stayed in some real "down home" places to feed my habit, too. LOL
Posted 5/3/2017 8:55 AM (GMT 0)
What a nice, life-loving and positive thread!
✚ New Topic ✚ Reply