keep positive? or being real

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qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 11/13/2009 10:02 PM (GMT -6)   
There were pretty good feed back from doctors or people who have some knowledge on pc such as: PC is slow growing cancer, at your stage, your numbers, you have great chance of not have recurrence in many years., etc

There are also status I read from here: pathology report done after surgery many times showing the cancer is more advanced than original DX; PSA evaluated soon(er or later) after surgery, need more treatment than original planed. .etc

At this point, I think the most important task for a surgeon on a PC surgery is cut clean and leave no cancer cells behind. Then is save the nerves. Radiation, HT or Chemo is much worse than ED.

Well, I admit that I am not so believe what doctor or surgery has told us. They don’t have to make us feel better but also should give us the whole picture of PC that we will facing.

Keep positive is one thing, but at same time have to being real. I have to mentally prepare accept bad news.

Just feel little down these days and concern about my husband’s surgery next week. I really really really hope surgeon is going to clean up all the cancer cells.

wesd40
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 11/13/2009 10:42 PM (GMT -6)   
well put qjenxu,
That is exactly what i hope my surgeon did on Sept 17th.
My first psa test is Dec 11th and then I will know for sure. Good luck, Wes

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 11/13/2009 10:46 PM (GMT -6)   
That is exactly what we all want. Your post is very well composed.

Thanks
Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 11/13/2009 11:01 PM (GMT -6)   
Jennifer --- it would be wrong, and foolish, to tell you not to worry. But, your priorities for your surgeon are pretty much exactly the same ones I gave my surgeon and we agreed on. Going in they said I had a 90% plus chance of never having cancer bother me again. Coming out they still say the same thing. Yes, there is the ten percent, but you have to focus on the 90%. You know about the PCa, so that's what you're worried about. Put it into perspective though. We all face risks as along as we're alive, be it H1N1 flu, heart attacks, or being hit by a bus.

You're husband is going into a lottery with a fist full of winning tickets. He's already a winner. Unlike thousands and thousands of other men out there, he knows he has PCa and is about to be treated and very likely cured. Celebrate!

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week. 
Feel free to email me at:  sheldonprostate@yahoo.com    


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/13/2009 11:28 PM (GMT -6)   
Jennifer,

Your feelings are real right now and not to be unexpected. Allow yourself permission to have them. From the time we are diagnosed, we seem to live in a constant flux between confident comfort and frightening fear. It is to be expected.

Being positive or real are not mutually exclusive when we deal with cancer. I have much experience in that arena as you know.

While we maintain our vigilance however, we can't allow it to take away our living every day. To expect the worse on a daily basis robs us of the opportunity to celebrate the little joys and pleasures that we encounter. If we go from day to day with our heads hanging low we miss some beautiful sites.

None of us entering into this fight hope to attain a state of merely existing. Existing is not true living. We wake up every day and vow to take the most from it as we can. That is how we LIVE for the day. That is how we handle the setbacks. That is how we renew our energies to face the next battle.

We are always prepared to do battle, but once prepared we continue to live and live it well.

I know you guys are sick of seeing it, but I believe it every day, and lately more than ever.

"Every Day Is a Bonus". Spend it wisely and suck the life from it.

So dear Jen, you can both stay positive and real at the same time. Some days will be better than others but they all will be spent in the sunshine and in life's enjoyment.

Of course this is all just in my humble opinion,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/13/2009 11:58 PM (GMT -6)   
Jennifer,

I wondered where you went. Haven't seen your posts for a while.

You are going to one of the best doctors in this part of the country, and one of the top hospitals in the world.

The nomograms that predict success rates for cancer cures, are in your favor. As high as 90 % of men are treated successfully.

It's ok to be a little nervous, but really, you have a lot of factors with early detection, good doctors, good hospitals, and lots of options for a long and happy life together.

Be sure and smile around your husband. He is one having some nit so nice things done to his body next week.

Good luck !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/14/2009 12:05 AM (GMT -6)   
PC is among the most "beatable" of cancers. The odds are good for your husband. It is hard to stay positive with the word CANCER but as others have said live life as it comes. Remember that the majority of people here go away cured!

Hold onto each other -- that is the part of life that matters.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/14/2009 8:46 AM (GMT -6)   
Jennifer, glad you came back to keep us informed. I know exactly what you are feeling as the wife of a PCa patient. There is simply no way to know exactly what your husband's situation is until that surgical pathology report comes in.

I know that reading some of the stories is very scary ... but, realistically, the statistics are greatly in your husband's favor. If you look at the statistics, roughly 30% of men who have surgery need follow-up treatment whether it be adjuvant or salvage. That means that 7 out of 10 men are doing just fine. When you think about it, that may be the best odds you can get with any type of cancer.

I know it is far easier said than done to tell you not to worry. What you are going through is perfectly normal, and I suspect that the waiting and wondering is harder on the partner than on the patient. My husband wasn't worried - and still isn't - but there is rarely a day that goes by when I don't worry about his next PSA test. But, worrying gets us no where and accomplishes nothing.

Right now, focus on getting your husband and yourself through the surgery and recuperation. The future will take care of itself.

Sonny and Sheldon have given you excellent advice. Try, please, not to worry about what might be as hard as this might be.

Anytime you feel the need to vent, come back ... we're all here for you and your husband. And, many of us will continue to pray this his surgery is a blazing success, and that his life is filled with those little donuts (zeros)!
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4 SA. PSA: 0.0 til July 2009. August 2009 PSA was 0.1, in September it was 0.3 Met with radiation oncologist, CT scan and bone scan clean. Third PSA on October 16 - PSA BACK TO UNDETECTABLE! Next PSA scheduled for early December. No radiation treatment at this time!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/14/2009 9:27 AM (GMT -6)   
Jennifer,

Glad you came back to us, wondered where you went. Not much I can add, except my obvious 100% support to you and your husband, you guys are part of us, so you get all of us!

Your current "mixed" feelings are all normal and expected. There is always an element of fear associated with not only cancer, but a pending major medical event. As far as being told there's a 90% chance he will be cured, consider yourself in that group until facts one day (and I hope that never comes) puts you into the 10% group. If you study probability,statistics, and logic, that 90% range is pretty likely.

No one can promise you any particular results. Not even the finest surgeons and doctors, every cancer case is different, prostate cancer is a fickled beast, you know that from reading here. But the priority will be the same: get the cancer first, lessen incontinence, and try to make ED minimal or not long lasting. That is the typical priority list.

We are here for you all the way. You can count on us for support outside your family and friends in your real lives.

Please keep us posted regular.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 11/14/2009 9:27 AM (GMT -6)   
Jennifer,

I was active on this board a few years ago, and have recently started following again (I got on the other day to record my last GOOD check up).

Just remember, it ain't over 'til its over. PCa is no death sentence, bad pathology isn't either. Neither are positive margins, PSA recurrence after surgery, or long-term PSA recurrence after all local treatment is exhausted. THere are many, many people who've had all these things and are still walking around. I look at cancer as a cosmic crap shoot. THere are pople who have initally good prognosis that don't fare well, and there are people with pretty bad initial numbers that are doing just fine (I'm in that category). THere are people like Mike Milken who were told they'd be dead in 2 years that are alive and well 24 years later. You just don't know.

I think its important to understand what various bad outcomes your hubby might face. Being mentally prepared to face bad news is important. Face time with our doctors is a precious commodity, and you'd rather use this time asking questions and seeking guidance that sobbing and saying "oh, My God", over and over (been there...done THAT!)

Being realistic is good, but being positive is better. Its so easy to drive yourself nuts with all this stuff (been there, done THAT, too!)

Fortunately, you're at the right place on this forum to keep yourself centerd....GOOD LUCK!
Sterd82
Age 49 - pre-surgery PSA 39 (at age 45)
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
PSA as of November 25, 2008 undetectable
PSA as of May 22, 2009 undetectable


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 11/14/2009 9:30 AM (GMT -6)   
Correction.....Mike Milken was diagnosed 14 years ago...little math error there... Maybe that kind of math is what got Mike in troubel with his junk bonds!
Sterd82
Age 49 - pre-surgery PSA 39 (at age 45)
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
PSA as of November 25, 2008 undetectable
PSA as of May 22, 2009 undetectable


qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 11/14/2009 9:59 PM (GMT -6)   
Thanks so much for everyone ‘s comfort and encouragements. By reading your comments again and again, I feel lot stronger now.

I didn’t go away from this site these days and never will, because you guys/gals are the best! I was trying to finish up my work before I take one week off from work next week. That means less goof off time during the work. I read your posts every day but haven’t have time or mood to post anything.

Well, last Wednesday afternoon I got a call from hospital saying they haven’t receive the biopsy slides yet that they couldn’t do the surgery if they don’t have it. It was totally due to miscommunications between lab A labB and hospital. After a heart attack kind of shock, I pulled each lab medical records staff together managed re-request and finally sent slides out. By Friday afternoon, being told nothing canceled next week. Learned lesson here: never trust those people, do hundreds of follow up if something is really important.

Well, I kind of having those fear feelings for a while just you guys said it is perfectly normal. I didn’t say anything here because I don’t want add negative post here but last night, I was truly need your shoulders and you guys/gals again, gave me the support as always; now I can face my husband with reloaded confidence and strongness.

Today, I told my husband that we should have a celebration for your up-coming surgery by empty your prostate well (learned from here smilewinkgrin ). He looked at me thought I was crazy, saying you don’t celebrate surgery or celebrate give up the prostate. I answered of course it is celebration, because you will be much healthier and we are formally on the path of reaching success. He was very much agreed.


Thanks my dear brothers and sisters for your wonderful heart, soul, and your strong mind. Once again, I regained myself from your words.

I will keep you posted. Monday is the pre-op. Tuesday is the surgery.

Your Jennifer

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/14/2009 10:11 PM (GMT -6)   
Jennifer
Got to love your approach to your husband. Us males are clearly deficient in many ways which is why we bond with females. Yes, drain that sucker of a prostate, but remember that there is still potential for fun on the other side.

Stay positive and stay with us -- PC is beatable!
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/14/2009 10:21 PM (GMT -6)   
Way to go Jennifer, I think you sound very together about the whole situation. Will be ever so glad when you tell us that your husband is safely on the other side of surgery, on the recovery side.

Keep your hope, keep your faith.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/14/2009 10:28 PM (GMT -6)   
Jennifer,

They have computers on the floors by the elevators that you can use if you don't have a laptop.

Sure hope you let us know how things are doing.

It will be ok. Now go back to that celebration thing.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/14/2009 10:40 PM (GMT -6)   
Jennifer,

It is so great to see that SMILE back on your face. I am so glad that things are moving along for you and your husband.

However, as much as we are so glad to see you here, don't you have another job to be doing. It can take a while to empty a prostate. Besides, tell your husband it's the last time you get to argue over who sleeps on the wet spot. LOL

We are all sending you our love and support. We look forward to the good news that we know awaits us after the surgery. Please find the time to let us know, don't leave us hanging here.

Bless you and your husband,

Sonny

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 11/14/2009 11:01 PM (GMT -6)   
Jennifer, Do keep us posted. We will be thinking about the 2 of you. I can tell by your post you will be like many of our wonderful wives. So supportive and strong for us.

Good luck.

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 11/14/2009 11:39 PM (GMT -6)   
Jennifer, when I read this: "I answered of course it is celebration, because you will be much healthier and we are formally on the path of reaching success. He was very much agreed." I grinned from ear to ear.

Any sane, sensible, rational, assessment has to come to the conclusion that Tuesday is a banner day for you and your husband (John, if memory serves.) Tuesday morning he wakes up with PCa and a couple of hours later, bingo, chances are excellent PCa is history.

I too will be anxiously awaiting news on Tuesday.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week. 
Feel free to email me at:  sheldonprostate@yahoo.com    


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/15/2009 8:54 AM (GMT -6)   
Jennifer, so glad that everyone's words brought you comfort and added strength ... that's what makes this forum the absolute best!!

You and your husband (John?) will continue in all our thoughts. If you ever need to "chat" with me personally - wife to wife - let me know. I'd be happy to listen, share, empathize, and just generally be there for you.

On to the next chapter in your life ... be well, be strong, we'll all be waiting for you here next week.

Love,

Sephie from NY
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4 SA. PSA: 0.0 til July 2009. August 2009 PSA was 0.1, in September it was 0.3 Met with radiation oncologist, CT scan and bone scan clean. Third PSA on October 16 - PSA BACK TO UNDETECTABLE! Next PSA scheduled for early December. No radiation treatment at this time!

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