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Kicked out of the Club

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Well Just got the news from the Doctor's office and I am no longer a member of the 0 club.

My PSA came back at .1 at the 10 month mark following my Surgery. I have a follow up appointment with the Doctor on June 25th to discuss.

I knew this would be a possibility since I did have a positive margin on my Path report.

Had been informed in the past that if I hit .2 then would most likely need follow up so time will tell.

Larry

Trew
Posts: 892
Joined: Jan 2010

Larry, I will be praying for you. I just don't understand how the medical people label bad things "positive" like in "positive margins." Sure sounds like a negative to me.

The pellet in my belly from the last Eligard shot is almost gone- I can hardly feel it this morning. So the six month shot can still be felt 8 months later. But it is disolving quickly now. My next PSA is in mid-July. I can hardly wait.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Are you going to consult with Dr. Smith at Vanderbelt? THIS BEAST SUCKS! WE are all praying for you!

Randy

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I'm seeing my local Urologist on June 25 to discuss with him first. He was the Doc that referred me to Dr Smith at Vandy so have complete trust in my local urologist opinion. My guess is that he will most likely retest in 3 months to see if it stays at .1 goes up or goes down. I knew I was in a higher risk with the Gleason 7 and with the positive margin post surgery.

Dr. Smith had told me at my post surgery consult that in his opinion that if I hit .2 then I should start radiation treatments so don't really see a need to go back up to see him at this point.

Oh the nature of this beast. Test, wait, test, wait.

At least I'm still a member of the 'woody wood pecker club' and the 0 pad club and having great sucess with both of those!

Larry

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Larry, so sorry to hear that your PSA is back. I know you know all the stats and options, you're very well informed and you have a very positive outlook on life and how to deal with this disease.

Just hoping and praying that your next step is successful and easily accomplished.

mrspjd
Posts: 693
Joined: Apr 2010

Larry,
I warmly consider you as the "unoffical one-man welcoming committee" for this site. I am sad that you received the news of your PSA rise. You are well educated about this PCa beast, have done your homework, and trust that along with your up-beat personality, your knowledge will empower you to move forward making the right decisions. Wishing you all the best.
mrs pjd

bdhilton
Posts: 759
Joined: Jan 2010

Larry…There are next steps and this is why I, like you choose this path with radiation as a follow-up/next step. Like you I choice to wait and see (and I will get my results early next week) instead of adjunct therapy…but the silver lining here is that your body has had 10 months to heal because of your decision to wait and see and salvage follow up has great long term results and statistics …I understand the best results for salavage are .2 or under....

I will keep you in my prayers for the best…

Peace

JR1949
Posts: 230
Joined: Jun 2009

Larry, I am so sorry to hear the news that your PSA increased. You are the rock for this discussion board. You always have a positive attitude.
You keep the faith and keep on keeping on. It's not a large increase and perhaps it is just a fluke. I will be praying for you. Remember, doctors treat, but GOD HEALS.

PEACE,
JR

NM
Posts: 214
Joined: Jul 2009

Larry you and I went through this together,kinda,I will always be grateful for your kind words and knowing advice.

Never give up and my prayers are with you and your family both.

Beat it and then post your victory.....Nick

BRONX52
Posts: 156
Joined: Apr 2010

MY THOUGHTS AND PRAYERS ARE WITH YOU--- HANG IN THERE !!!!

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

Sorry Larry.. we are not allowing you to be kicked out. To good of a man for us to let you go. (: Instead, lets hope this reading is inaccurate and that the next one is better. The 1 is right on the edge..so maybe?

In any event, my thoughts and prayers will stay with you.

Be well my friend,

Frank

chitown
Posts: 90
Joined: Mar 2010

Larry - On my surgery day on 6/15 one of my friend, a radiation oncologist, visited me in the hospital. I told him the dark cloud of pathology and recurrence still is over my head despite having a good surgery. He told me not to worry as the key is successful surgery as there is a proven protocol for every pathology and every indication of recurrence. Realize this is not the desired news and keeps the chapter open, but you are still a front runner. Our prayers and wishes for the 6/25 review and closure

tdorman
Posts: 21
Joined: Jun 2010

I got kicked out of the club 7 years after surgery. Had IMRT radiation and now have been a happy member of the club for the past 7+ years.

Ted

TonyJr
Posts: 33
Joined: Feb 2010

We're all here for you, You beat it once I'm sure you'll conquer it again. My prayers and thoughts are with you.

TonyJr.

hopeful and opt...
Posts: 1360
Joined: Apr 2009

I wish you the best............Ira

lion1
Posts: 240
Joined: May 2007

We need you...you keep us all strong.

Lion1

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Thank you all for your kind encouraging words! It really means tons to both me an my wife.
I will keep you posted as to the next step after meeting with my urologist this coming Friday.
I imagine that there will be a 'few more' PSA tests before we make up our minds as to the next step. Others have been down this road of this new club that I'm in and even though it may be less travelled now its my turn to start the first steps.

Larry

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

I have been away from the board for a bit, was so shocked to read your news. But, as someone said, you beat it once, will do again. Jesse and I send prayers and best wishes. Keep us posted, and we are grateful for all your help to us.
Jesse is 7 weeks postop, just a wee bit of dribble (drops!) here 'n there. Not even enough to use one pad - he uses the really thin ones already. Not even close in the woody club yet but we're working on it! lol I think the nerves are still asleep...

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

The last month has been really good for me on the erection front at 10months post surgery! So just enjoy all that foreplay leading up to LAUNCH OFF!

larry

zakpaga
Posts: 66
Joined: Jan 2010

Larry,

I am so sorry to hear the news. But your outlook on life will help defeat the beast. I will keep you in my prayers.

Victor

klauren
Posts: 1
Joined: May 2010

Hi Larry,
I'm fairly new to this site, but i see entries by you in here all the time. I am the wife of a 55 year old man who was diagnosed last October at age 54. His post-op PSA was 50. Had a RP on Jan. 4, 2010. Recovery went very well. Surgical biopsy revealed bi-lateral positive margins, gleason 4+4 and pentration of capsule and invasion of seminal vesicles. Staging T3b. 3 month post op PSA was 0.34. six weeks later PSA was 35.0! surgeon was shocked. talk about doubling time! He started him on Lupron and Casodex therapy. Had his first injection in May and his quality of life has been severely diminished. Terrible hot flashes (almost constant) sweats, weakness of muscles (mostly his legs) and diminished cognitive abilities and loss of drive. awful, awful therapy for him. But it seems this is all he can do. Apparently it's doing its job since he just had another PSA last week and it is now immeasurable (does that put him in the "zero club"?! But he is still in a terrible dilemma as far as whether he wants to continue this protocol. Any advice? He's leaning toward opting for some quality rather than quality. no one seems to be able to give us a straight answer as to whether this protocol will actually extend life.
You seem to be very well read and versed on this dreadful disease. Please write me with your input when you can. Sorry to hear your PSA is on the rise. You'll beat it!
my prayers are with you.
klauren

Trew
Posts: 892
Joined: Jan 2010

The hormone treatment is a nightmare existence in many ways. Mrs. Trew told me this morning something about looking on the positive side- I am still with her. I will hold to that thought for now.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Klauren,,Sorry to hear about your husband....Actually right now my PSA is 0...The nurse told me the psa level wrong on the phone...When I saw the doc he said it was 0...So good for now with my positive margin.

Yes...I'm on this forum lots! I love to help others...So many helped me last year when I went through the diagnosis, surgery, etc. so just trying to help likewise.

Yes also I have read tons! My Dad had PC back around 1997 and he is still doing great so when the cancer struck me....learned even more!

On the Harder cases though I've not read much about them...Are they sure on the PSA of 35 and not .35 or some other number? From what i read I would suggest the following...
see if they can do the test where they put in sometype of radioactive material that will go to the cancer site...forget the name of the test...But that would show if it has mestacised in our area.
Also I would strongly, strongly suggest you check out healing well prostate cancer forum on the web. They have a very, very active group over there with men, women that have tons of experience with this beast. I check both forums frequently. I personally like the format here better but the other one will get you QUICK answers since they have a larger membership base.

Good luck and keep in touch!

Larry age 55 PSA 0
Gleason 3+4 7
one positive margin

gumbyrun's picture
gumbyrun
Posts: 52
Joined: Dec 2009

Welcome back to the club! I would like to use a club on that nurse! Oh well, all's well that ends well?!

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