myman - Our Prostate Cancer Odyssey - PSA UPDATE

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myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/4/2007 6:56 AM (GMT -7)   
This is late in coming but I couldn’t make myself do it any sooner. We’ve move past that pain now and like Bluebird says, it helps to write about it.
My name is Susan – I post under the name “myman”.

Our Prostate Cancer Odyssey

Discovery 11/2005: Florida is home for us but our work takes us to many different locations, so at the time we were at work on a construction project in Maine. When we work these projects 12 to 14 hour days are required and anything resembling a normal life is not possible. After being without health insurance for a few years (long story – Enron) we’d just gotten coverage and Don went for a physical. He was feeling well but for a few age related aches and pains. The doctor, an internist, took a complete history and did a through exam. I stepped out while the DRE was done and when I returned he was telling Don he found hardness to the prostate and his blood workup would include a PSA test. We didn’t worry at that point as he had NO symptoms. Prostate cancer, well, we knew nothing about it.

A day later we got the results - his PSA was 7.76 and an appointment was being made with an urologist. We were away from home and didn’t know where we should go so we were grateful for the direction from this kind young doctor.

Within a few days we were meeting with the Dr. Gregory Adey, who did a DRE and wanted another PSA test. Once that came back at 7.96, he requested Don’s medical records and scheduled him for a biopsy. He called Don a day later with the results - positive for cancer – he brought us in the next day. He spent a long time with us going over the biopsy (GL 4+3) and the treatments available with surgery being the best choice for him. Don agreed he wanted it out, out, out! Dr. Adey called Moffitt Cancer Center in Tampa and had all Don’s records sent there for our first appointment. Dr. Adey was wonderful to us and that was exactly what we needed…being away from home and hearing such devastating news was extremely difficult.
Don & I agreed we needed to wait until we got home to tell our children in person. My God, that was hard – there was no way to be prepared for the fear and sorrow they felt. So after we cried and comforted each other we decided to get on with it. I think Don’s resoluteness gave them courage – I know it did me.

The Wait: We met with Dr. Julio Pow-Sang at Moffitt Cancer Center on 12/14/05. He examined Don, went over his records and talked with us in detail about LRP and recovery expectations. With Don’s numbers he seemed confident he would have a good outcome and he would spare the nerves, if possible. A surgery date was set and we settled in to wait until 2/09/06 . Yes, it seemed forever. I was fortunate to find Dr. Patrick Walsh’s book that helped us immensely. We kept ourselves busy with the holidays, fishing every chance we got and planning our daughters' upcoming wedding. Don was determined to walk our youngest down the aisle in early April.


2/09/06 LRP: Surgery went well – Dr. Pow-Sang felt the cancer was confined (the path report concurred) and he was able to spare one nerve bundle. Typical issues with the hatred of Mr. Hang, bladder spasms and the emotional impact (relief, disbelief and some sadness) were worked through and Don regained continence by April. Next came sexual function and as soon as he could he worked at that with some success! The doctors were very pleased with his recovery. So, all in all, we thought, “Yep, surgery was the right decision and holy cow…that darned cancer is g..o..n..e!” Don walked our daughter down the isle on April 8th and it was a beautiful sight to behold! Things were going right!

4/14/06 PSA: Don wanted to get back to work so asked if he could schedule his first PSA a little early and the doc agreed. I was upset by Friday thinking we didn’t have the results yet and even called the hospital to find out what the problem was...how could they make us wait like this??? I had to leave a message but I had no idea Don had received a call on Thursday but didn’t want to tell me. That Sunday was Easter and on the way home from a family dinner he told me…I’ll never forget it. PSA – 11.8 - it seemed unbelievable to me, to us. How could that be? It must be a mistake, I said, crying my heart out. Don tried to reassure me and said he has an appointment tomorrow for another PSA and an appointment with the doctor.

4/17/06 PSA: 12.9 Another meeting and tests ordered to be done immediately: bone scan, MRI of prostate bed, CT of pelvis, chest x-ray.
All tests results negative and Don’s case was brought before a group of doctors at Moffitt.

4/26/06 PSA: 13.9 Another meeting and the decision is this: not to treat until we see where it is. This made sense to us. How do you radiate what you can’t see? Don had just had surgery anyway. Hormone Therapy is mentioned and again…why begin a treatment when you don’t know what’s going on? It’s in his future but the decision is made to wait. By now Don needs to go back to work…anything to get some normalcy back in our lives.
Moffitt is in contact with Dr. Adey in Maine – he will continue testing Don and start HT when the time is right. So, we leave for Maine to work. Things are tough but work does help to distract and sometimes to be distracted is a good thing.

Dr. Adey makes appointments with an Oncologist and a Radiation Oncologist for Don. The Radiation Dr. tells us he’s sorry but there is nothing he can do at this time. The Oncologist spends an hour with us (we had copies of all records sent from Moffitt) very through and detailed. He, too, thinks it best to wait to start HT until necessary.

I understood but remember thinking “This is terrible – we’re letting this grow.”

6/26/06 PSA: 13.76 - Oh, it’s down a bit! But we realize that is such a slight difference, not enough to make any difference, really. More tests and some lymph nodes look slightly enlarged. Could be inflammation.

8/23/06 PSA: 18.85 – CAT scan of abdomen and pelvis show multiple distant lymph nodes are definitely enlarged – Dr. Adey shows us the test results and it’s obvious. The cancer is systemic and it’s time – the first 3-month Lupron shot is administered. Not knowing how this will affect Don and the difficult work schedule we have, the decision is made to go home. The first 3 months the symptoms don’t appear and we think – this is not as bad as we were told!

12/05/06 PSA: 0.8 The side effects kick in but Don is managing.

3/06/07 PSA: 0.3 Side effects are obvious – all of them. At times there’s a sadness, and how couldn’t there be? Still, Don is determined and he fights.

6/06/07 PSA: Once again - The Wait.

Yes, we’ve looked at different options, as you all know. We’re not second-guessing…we believe surgery was the right move for where we stood at that time. We’ve consulted with 7 doctors and they did not vary on what they said. It is what it is and it’s HT for now. We are okay with that.
But we’re not sitting around…Don plays bass guitar with our sons – one a guitar player & one a drummer. They built a recording studio. He works out 4 days a week. Don is an avid photographer and shoots video.
I was able to do my work from home, thanks to an understanding boss.
And did I mention we go fishing…a lot!

For a time we couldn’t talk about where we were in our odyssey…it was too difficult but we’ve gotten past that and here we are.

Swim, thank you for your counsel.

So, is life what we hoped for? Yes and no.
No – because who of us would ever have thought prostate cancer would be a part of our lives. But only a part of our lives…not all.
Yes – because we do have so much – a great family that’s growing and we’re involved in their lives. A loving marriage and a very good partnership. It takes some serious work but we’re getting through it.

So, we’re living by choice.

We wish everyone a full life and safe odyssey of their own,

Don and Susan (myman)
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows distant lymph node involvement
Restage IV Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3
06/06/07 - 0.1

Post Edited (myman) : 6/6/2007 4:19:09 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/4/2007 7:38 AM (GMT -7)   

  :-)   Dear Don & Susan… 

Sending you so many thoughts from the heart,   wishing you sunshine and cheer,

And lovingly hoping it brightens your spirits to know  you’re so special and dear.

Thank you for your wonderful sharing of the heart!!!

It truly is warmly received by all.    Warm Hugs and Gentle Thoughts from Lee & Buddy

 

“God Bless You”

 

It's a little prayer  ~  "God Bless You"  ...but it means so much each day,

It means may angels guard you and guide you on your way.

 

Your Illness Does Not Define You

It marks some of the thousands of days and experiences

that make up the intricate, unique fabric of your life.

True Freedom comes from small steps forward  ~ every step counts.

…passage from Caring Path


mama bluebird - Lee & Buddy… from North Carolina

J  We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 6/4/2007 11:05 AM (GMT -7)   
His Susan and Don,

Thank you so much for you story. Your courage and attitude in the face of trouble is exceptional and your journey will help those that follow us.

All of our hopes and prayers are with you...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/18/07.
 
 "I have cancer but cancer does not have me."


drmartin
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 6/4/2007 12:21 PM (GMT -7)   
Hello Susan and Don,

Thank you for sharing your hard and arduous journey!
May you continue down the positive path of healing!

Very Sincerely,

David M.
Age: 52
Male, Hispanic   
 
11/10/2006
PSA 10.2 - Discovered during Annual Physical with Family Doctor
Referred to Urologist Surgeon specialist
Free and total PSA - 10.9
 
Biopsy ( sent to John Hopkins pathology) - 2 of 16 positive on left and right apex of prostate
Left - GS 3+3=6, Right - GS 3+3=6
 
Davinci assisted laparoscopy radical prostatectomy on Apr. 17, 2007 -Complications due to extreme unusual size of prostate. Normal Prostate = 20 to 31 grams. Mine = 120 grams (not enlarged, but genetic growth large)
Nerves on right side spared.
All Lab's clear.  No Cancer outside prostate
 
Cystogram Apr. 24 2007- Slight leakage at anastomosi negligible.
Catheter in for 1 week  Removed Apr. 24, 2007
 
Second post op office visit on set  for May 30th.
 
 
    


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 6/4/2007 12:32 PM (GMT -7)   
Hi Susan and Don,
My trek is staying the course. HT has begun and I will do the radiation. I know that your trek is similar without the radiation. Yours and Don's strength and courage is something I have drawn on over the past 8 months since my disease was discovered. You are my friends even though we have never met. I hope to maintain the positive attitude that I keep as it allows me to enjoy my life here. The music for me is monumental in helping me do that. I know Don has to be loving this time with his sons. My prayers continue that you remain positive, live life as you best can, and become a haven for good healing.

May God Bless us all here at Healingwell.com. We don't choose to be here, but I am glad your are here for me.

Tony
Age 44
pT3b, N0, Mx
Pre-op PSA 19.8
Gleason 7 (4+3)
LRP on February 16, 2007 (daVinci at the City of Hope)
Started Lupron on May 15, 2007
Started IMRT on June 6,2007

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/5/2007 4:55 AM (GMT -7)   
Bluebird, Jim and Dave - We count on your positive energy and warm wishes - I really don't know how I personally handle all of this if I hadn't stumbled across this board when I did. So, I thank you from the bottom of my heart.

Tony & Ruth - So glad to see you here. I feel we are friends also - that's what I mean about this place.
The music - that has become a haven that gives Don peace and joy or whatever he needs at the time, as it does for you. Isn't it a beautiful thing?
You keep up the good fight, enjoying he great outdoors and loving your Ruth. We're here for you.

I don't know that attitude will cure us but I do know it can heal us.

Susan

GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 6/6/2007 5:50 AM (GMT -7)   
Hi, Susan. You have no idea how much of an impact this thread will make. There are some of us who may one day follow in your footsteps and it's folks here like you (and Tony and Ruth and many others) who will be the inspiration to carry on with the fight. You've had such excellent guidance from physicians; that's something some of us did not have in the beginning. And, of course, that's where HealingWell came in.

Thank you for putting it all into words.
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 4/17/07
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/6/2007 3:22 PM (GMT -7)   
Hi All - just wanted to bump this up ...so exciting! yes, yes, yes! This pushes Don's PSA nadir lower which is just what he needed!

Thanks for all your prayers & good thoughts!

Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows distant lymph node involvement
Restage IV Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3
06/06/07 - 0.1


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/6/2007 4:51 PM (GMT -7)   

 

06/06/07 - 0.1      Definitely deserved a “bump up”….

 

Yea !  ~   Don &  Susan,

 

  PSA…   !!!~~~~>>>  Woo~Hoo  <<<~~~~!!!  undetectable

 

Cause  for   celebration!!!!!

     What a wonderful day it is ~ each and every-day….

          Enjoy it to the fullest ~ friend.

 

Yippeeeee!!!!!! From  Lee & Buddy

 

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met….

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.  

J  Caring is Sharing ~  Thank You for Sharing  J


B&B's World
Regular Member


Date Joined Mar 2007
Total Posts : 120
   Posted 6/6/2007 10:08 PM (GMT -7)   
Dear Susan,

Your wonderfully concise, moving and heartfelt words describing your and Don's experience allow me to put myself in your shoes, and your ability is a real gift for us all. I rejoice in your wonderful report, and thank you for sharing in such a way. My heart opens to you and I send continuing thoughts of strength and recovery your way.

Becky

Age 51

Gleason 3+3

PSA from 3.2 to 4.3 in one yr

Biopsy 11/06

DRE negative

4 of 12 cores positive, one lobe, less than 10%

Inflammation only second lobe

Stage T1C Clinical Dx

PSA prior to surgery: 3.9

Da Vinci Prostatectomy 2/27/07:

PCa in BOTH lobes 5-10% of gland

Gleason 3+3

Negative tissue margins

Bladder, seminal ves, vas deferntia negative

Two inguinal hernia repairs

Catheter removed 1 wk after surgery

Full continence (no pad needed) 1 wk after surgery, then intermittent drips 4 wks out

Full erection, 12th day after surgery

2 mo’s post-op, some ED after penetration

3 month PSA 0.03

 


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 6/7/2007 4:13 AM (GMT -7)   
Don and Susan, YEAH on the 0.1 PSA! thank you for sharing your story. it brought tears to my eyes and warmth to my heart. you have everything you need to beat this and enjoy life. God bless, kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump


veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/7/2007 7:10 PM (GMT -7)   
Don and Susan

Thank you for sharing your beautiful and loving Oddessy. Your courage and positive
"can do" attitude is truly inspirational.

And I will read the book by Dr. Myers that you mentioned.

Bless you both,

Vet1

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/8/2007 1:28 PM (GMT -7)   
Bluebird, Becky, Kat & Vet1...thank you for sharing our good news - it's amazing to use that phrase!

The idea that others are sending us good, strong positive thoughts is a gift to us. We here at this forum know this to be true, don't we: it gives a person real strength to know others wish them well and truly know how they feel. They are not just words uttered out of pity - they're words given as a gift of strength and power. I fully believe that. And when I say it to someone I mean it with all my being.

I wish us all well.

Susan

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/9/2007 6:04 PM (GMT -7)   
GreenAcres- It does help to know where others have been...it took me a while to realize that. When I first came to this sight I didn't see anyone in the same situation, with a PSA so high post op. I was reluctant to post too much about it - but we've been so welcomed here and we get such support from good people like you - it's a huge help.

Thank you for the kind words. Good Health to you both,

Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows distant lymph node involvement
Restage IV Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3
06/06/07 - 0.1


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 12/13/2007 9:11 PM (GMT -7)   
MySusan,

You are such a thoughtful and encouraging giver.

Your posts are so valuable to all of us.
Take some thanks from me.

All Mybest to you and Don.

CCedar
ICTHUS!



2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
Nine month PSA <.008
:)
At 9 months, ED treated with Pump Exercises & 100mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 12/16/2007 1:50 PM (GMT -7)   
I was surprised to see Don's Odessy pop back up - thanks for the kind words!
I always read your posts, Cedar - the way you make a point and your willingness to put yourself out there is exactly what we need here. It's funny how we've never "met" but each one of us has something to offer, we just need to contribute.

Don's road hasn't been an easy one as far as how things came about but still he amazes me...right now he's building a koi pond in the yard. Maybe that in itself isn't so amazing but the fact that he's dealing with some major side effects from the HT and other issues that are a result of pc says much about how he's decided to handle this.
It IS Don's decision to live his life as he sees fit for as long as he can. I'm proud of him. I'm glad we're in this together. I'm thankful for this place and for friends like you.

Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
3 mo. PSA Post LRP Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
09/06/06: 6 mo. PSA: 18.8 Distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
09/05/07: PSA 0.1
11/27/07: PSA 0.1

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