August Surgeries

Hi All,

Been busy the last week, though I have been reading the posts when I've had a chance. First, An-I also would go for the study-anything researeachers can learn is a good thing. Geoff signed up for one with Global Robotics where he had his surgery. Ed-sounds like you had a great Labor Day weekend and are back on the road to a normal life. And Aimzee, I can't believe Ron is still having so much pain. Like Ed, I think I would call the doctor and ask for something stronger.

We went to Orlando yesterday for Geoff's 4 week check up. The doctor was very happy to hear he is pad-free and the cialis is working. He told him he could start trying intercourse and lifting more weight. He goes for his first psa in a couple of weeks-I refuse to worry about it (easy to say now!). I'm sure I'll start worrying once the blood is drawn.

Ger-glad to hear like your surgery might be back on track. And Judy-hope you're finding the answers you need. I'm sending positive thoughts your way and hope that your husband is doing well.

Renee

rhb47 said...
HI TDK,

NO, it's not too late and welcome to the forum. We always hate to get new members because we know what it means, but I think we're a pretty positive bunch and are a great help to each other. The negative margins are very good-maybe you could post more of your stats like psa at diagnose, pre and post op gleason ect.

Renee

Thanks for your kind response. OK let's see what I know.

Current age 54

PSA has been up and down since age 50 from a low of 4.01 to high of 7. It was odd (to me) that my scores from the past 4 years would go:

4.8 5.86 4.36 4.24 4.01 6.71 5.12 5.86 5.48 7.0 (I was on and off CIPRO over that time period which my urologist suggested caused those ups & downs and the reason for the watchful waiting period).

As a point of reference, at age 45 PSA was 3.7 at age 50 it was 4.8.

Finally decided to combine a biopsy while having another procedure which resulted in a Gleason of 3+3=6 on 4/5/10
Of all biopsy samples, highest involvement was 30% (1 sample) all other were 10% - 0%

Waited till 8/31 for the LRP (wanted to have some summer)

Don't know what my post op Gleason is. Should my urologist have told me?? Would they have done another Gleason after the LRP?

Just got off the catheter today and got the word that margins were negative.

Scheduled for my Post-op PSA on 10/7.

All-in-all I'm thinking I should consider myself lucky given I have nothing to compare myself to other than what I'm reading on this board.

Now in the healing phase and dealing with these wonderful incontinence issues.

That's my story and I'm sticking to it.

Hi An,

Thank you for thnking of M. His fever was gone in 3 days and still not sure what caused it but he has actually been out of the house a bit each day. He even drove us somewhere yesterday locally and that helps with feeling empowered. He gets tired easily but has no pain anywhere just a bit of tenderness still around his testicles. He knows exactly when he has to use the bathroom and so he goes on his own but cannot stop his good regular flow yet. He does drip upon standing and coughing. I think he's doing pretty well. He has had no erections and I am keeping him away from thinking about that as I had heard it's too early to consider?

We are making an appointment today with a medical oncologist to discuss the treatment going forward as we know there will be some combination of radiation and hormone therapy and want to get this specialists take on the protocol. We are looking to have the slides re-read by the lab at Memorial sloan kettering where she works. The treatment will more likely be done at home since we are a good 75 minutes from NYC and it will be easier to do it at the cancer center of excellence 20 min away.

I am so happy to hear of everyone's progress. And, keep you in my thoughts and prayers always. Welcome TDK. Sounds like you are on your way.
Judy

Ger,
Glad you finally have a surgery date-we'll be watching for your results, so keep us up to date. Maybe you could start an Oct. surgery thread as it would make it easier for us to follow you and all the other Oct. folks.

Judy,
Glad to hear that M's feeling a bit better and getting around. We'll all be anxious to hear about your visit with the medical oncologist-you're very lucky to live near good doctors and hospitals.

An,
Will be waiting to hear how Paul does on the cialis. Geoff's doctor had him take 10mg twice a week and he got headaches and backaches. When he went to 5mg every other day it got much better. Now the doctor wants him to try the 10mg twice a week again. He says the side effects often go away. We'll see-it is working not only for the healing but for erections so he is willing to keep taking it.


TDK,
An is absolutely right-the final gleason does matter. As we found out here on this thread many of our members bumped up:3 from 3+3 to 3+4 and 1 from 3+4 to 4+3. The other things An mentioned are equally important in where you stand now and in the future.

Aimzee,
Hope Ron is continueing to heal and that his pain is getting better. Pain really does drain you and I know that it's probably not helping his recovery. Still, it sounds like the leaking is doing pretty well-hopefully he can kiss those pads goodbye pretty soon.

Renee

An38 rhb47 Trying:

Thanks for your feedback. Trying to understand as much as I can. Sounds like my urologist needs to provide me with some post-op info I should be aware of.

He seems to be very capable, but not a big explainer. He seemed very "matter-of-fact" about what to do, but left the final decision to me. All the info I have I had to drag out of him. Most of my knowledge came from the book "100 Questions & Answers about Prostate Cancer" by Pamela Ellsworth, John Heaney and Cliff Gill. I made all my treatment decisions based on this book.

From DX/biopsy to LRP went so quickly that I could not absorb everything I probably should have known. Wish I had discovered this board sooner, would have helped with my learning curve.

Up to this point though, I think/hope I've made the right calls for me along the way. Time will tell.....

Thanks.....

Renee,

Thanks for the book suggestion. Picked it up on HotBookSale.com for $5.91 free shipping too.

Thanks for the info, planning to get my detailed pathology report from my urologist. Looks like everyone posts their "stats" in their signature line. Not that I understand what all those stats mean.....been using the "Prostate Cancer Abbreviations" post to help me understand what y'all are talking about.

Thanks again and bear with me while I get my arms around this disease.....

Hi Tim!

Welcome to the August thread!  There is a lot of information here and throughout the entire HealingWell Forum.  You are already in a better stage since the catheter has been taken out.  YAY!  Ron's Gleason score went from  3+3 to 3+4  so surgery was the right decision to make.  Good luck with your pathology report.  Please return!

I still haven't completed the rest of my husband's signature.  I'm not really sure what to write, although I did write something when we got the path report.

An, maybe Ron's surgeon didn't give him anything for ED because of the pain he has been dealing with?  We'll see what he says on 9/28.  I just feel so helpless here.  I haven't watched the Grandbabes at our house, but go to my daughter's home.

Ed, he did call the doctor, and was prescribed Darvocet for pain.  He seems a little bit edgy, but it does help for about 6 hours.  Still dry at night, but he wears the Depends during the day.  Those are down to 2 or 3 for the entire 24 hours.

Friends, the reason Ron doesn't use the pads is because he wears the boxer type shorts.  They won't stay put. 

Renee, everything sounds so good for Geoff!  May they continue to be that way.

Ger, at least you have a better idea for your surgery date and hopefully will be able to work things out with your son.  We'll check on you, and wish you the very best!

Judy, wishing your husband the very best as he meets with the medical oncologist!  May the right answers be out there for M.

These posts seem out of order.  I am keeping up with all of you, though.

Best regards and peace!

Aimzee

Aimzee said...
 An, maybe Ron's surgeon didn't give him anything for ED because of the pain he has been dealing with?  We'll see what he says on 9/28.  I just feel so helpless here.  I haven't watched the Grandbabes at our house, but go to my daughter's home.

Hi Aimzee,

I imagine the first thing has to be the pain and working out what the underlying cause of this pain is so that it can be fixed. I understand the pain was there before the surgery. I was thinking about this yesterday and was wondering if the urologist that is used to dealing with Da Vinci's is the right guy to work out the root cause of the testicle pain. It might not be his area of specialisation. Maybe you need an internist to help work out what it could be? I just feel so bad for Ron, having to wait for over 2 weeks with this pain (and for you having to watch him in pain). The ED can wait for sure.

An

Thank you, An for the suggestion!

Hi David!

Our August Surgery guys are nearing the end of their JOURNEY (we hope), and the best stuff has already been written - except the sex parts.  So, this is almost the end of the thread.

What I see here is the PERFECT thread and an example of how GREAT the HealingWell.com Forums are.  Most of us gathered here right at the beginning with the diagnosis of Prostate Cancer.  Over the past 6-7 weeks we have formed Forum Friendships.  However, several participants have started their own topic thread regarding a specific concern.  I started out on "A Date With a Robot", but not many were following the thread.

Please don't be upset with me for disagreeing.  I really wouldn't start a thread for Ron.    

It is my belief Judy, An, Renee, Tim, and others do have additional threads started.

Best wishes for you,

Aimzee

Hi All,

Yes, I have started other threads and received some good feedback, but I think there are 2 kinds of threads.

This one, has been a collective sharing of people in relatively the same spot in their diagnosis, treatment, recovery.

The other types of threads are for specific concerns. Those where you may want a wider, broader section of people responding with their experiences, strengths and hopes.

I am game to keep posting anywhere and follow the progress all over the boards of the people who have offered me their support  as well as newbies who need to feel support from me!

Judy

This thread is the biggest reason I log on lately.  It feels very personel to me and has been very useful as information and therapy.  I will be sad to see it end but I know eventually it will.  Thanks to everyone in the August club for making these weeks easier for my recovery and it most certainly has done that.

Ed

OH, Aimzee, I was so happy to read your post this morning. I know that Ron is still having the pain but it must have cheered him up to play with the grandkids ( we have a 3 year old also, but as they live up north we only see them a couple of times a year.)

We're off on a little trip Friday to Monday to Sanibel Island to celebrate our 30th anniversary. Last year (spring 2009) I started talking about a trip to Italy for our 30th. Geoff said " Why wait, you never know what's going to happen." So, we went last fall for two weeks and had a fabulous time. Thank heavens we did because we would have never gone this year-between our medical out of pocket expenses and hotel in Orlando where we stayed for the surgery our vacation money would have been seriously dimished. I keep teasing Geoff and sayin, "What, you didn't like that nice hotel we went to in Orlando last month?" This whole experience has really re-inforced the idea that you should never wait to live your life and that the most important thing is the people you care about.

Renee

Aimzee, so glad Ron enjoyed his visit with the grandkiddies... it's so important for his recovery to enjoy as much as he can. I'm still so sorry he has the kind of pain and fatigues he does. Hoping that gets better quickly.

Renee, congrats to you and Geoff on your 30th. Sanibel will be a wonderful weekend away. Put the C word on the shelf for the weekend. No matter where you go you will have a wonderfully restful time together. Enjoy!

Ejn, I enjoy checking in on this thread too.. And, still so glad it's here.
Judy