Daughter scared to death

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southerndrawal72
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/13/2008 11:58 PM (GMT -7)   
I'm from North Carolina.  My father was recently diagnosed with prostate cancer.  I am unsure of his PSA, but I think upper teens.  His Gleason score is 4+5=9.  I am so worried for him.  I don't want to lose my dad, but this word "cancer" is keeping me up and turning my world upside down.  Can anyone here give me some good news?  Will I lose my dad in 5 or less years?  I'm not ready to count his time down yet? 
 
He is 65 and in pretty good health.  He has been experiencing bone pain, but it is in his upper body, maybe associated with artheritis.  But, from what I've been reading, it could be prostate cancer in his bones.  Can anyone shed light on this for me?  Could it be prostate cancer in his wrist and shoulder? Or, is it normally in the pelvis and thighs and lower back? 
 
Please, can anyone give me some information?  I'm sick to death over all of this and have no idea what to expect.  He has surgery on June 25.  Your prayers would also be appreciated.  I love him so much.
 
Thank you all in advance and I wish you all well.
 
Southerndrawal72

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 6/14/2008 4:12 AM (GMT -7)   
Welcome to the site Southerndrawal72, I can understand your concern for your dad. Gleason 9 is idicitive of an aggressive cancer, however if it is still confined to the prostate it can be treated. This isn't the end of the book, but it will be a new chapter that is for sure. Please educate yourself to all aspects of PCa and encourage your dad to do the same. In metastatic diesease prostate cancer is known for moving into larger bones, but this may not be the pain your dad is experiencing, only some scans will tell that. Remain positive, yet concerned, ask plenty of questions, and please know that everyone at this site will walk with you, your dad, and the family all the way. If you would like to email me we can discuss this more one on one.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
cancer in 4 of 6 cores
92%
80%
37%
28%
 


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 6/14/2008 5:50 AM (GMT -7)   
Hey SouthernDrawl and i am sorry to se you here ,
Usually before surgery the Urologist suggests a Cat Scan and full Bone scan to make sure that the cancer is confined to prostate and operation can be perform , oppose to other treatment choices.
However in general prostate cancer is a very slow moving one , my PSA was high for 2 years before i was diagnosed with Gleason 6 cancer.
Many on here had a similar Gleason 9 , and it is certainly not the end of the world ... treatment is necessary right away BUT the odds are most are successful in battling the disease....
Good Luck and keep us posted !!

GB :-)
April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Went for open RP with Dr. Christopher Johnson at St. Francis Hospital NY. with nerve sparing of both sides.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence next to nothing, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response for 6 months.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE: 5/12/2008 ED:
With Viagra Usable erection for intercourse after about 11 months out !!!woooohooooo


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/14/2008 5:57 AM (GMT -7)   
                                                  tongue    Hi ~ southerndrawl72 and Loved Ones,

 

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James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/14/2008 6:01 AM (GMT -7)   

Welcome to the forum, sorry you have to be here under these circumstances. 

If you can gather all the info your father has received and put it into a signature file to use when posting, it would help others when replying to your posts. 

Several folks here have similar situations as your father, so they can give you better insight.  The rest may be along shortly...


James C.
Co-Forum Moderator- Prostate Cancer

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
5/7/08 ED- Viagra, pump, no response- Trimix .075ml continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 6/14/2008 7:54 AM (GMT -7)   

southerndrawl72,

Hey.  I am originally from SC and lived in NC a couple of times.  Now live in Texas.

More important for this discussion, my pre-op Gleason was 8...post-op 9.....PSA 14 after being 1.8 the prior year.  I was very fortunate in that my cancer seems to have been confined to the prostate.  Despite that, the high Gleason and PSA indicate a strong likelihood (48%) that cancer will return within 10 years, so I am probably going to have radiation later this year.

Not sure that this helps, but hope it does some.

As JamesC said, if you include more details about your father's situation it is more likely that people can offer their thoughts or compare notes.

Good luck to you and your family.

DanMan



Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 6/14/2008 8:11 AM (GMT -7)   

southerndrawl72

I am so sorry to hear about your dad.  A high Gleason score is not the end of the world.  Mine was a 10 and I am undergoing treatment at the Proton Therapy Institute in Jacksonville, FL.  Just don't panic,  rather help your dad do his research into the best treatment for him.  Our friendly folks here have seen just about everything at one time or the other and are here to help as much as they can.  I have a website www.gleason10.com and it's sole purpose is to assist others in similar situations. My Journey is in this forum under Richard's Journey. 

Please stay with us and share your dad's journey with us.  Ask any and all questions you need as there are never any that one needs to keep to themselves.

Richard yeah tongue yeah


Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
Jan & Feb & Mar all tests clear
MD Anderson = No surgery and No Proton only Hormone and IMRT
Contacted with Loma Linda and UFPTI in FL
May 2, 20008 LUPRON & Casodex
IMRT to started  5/27/2008 Will get 42 treatments 19 IMRT and then 23 Proton
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 6/14/2008 8:52 AM (GMT -7)   

Hi southerndrawl,

Welcome to our little group.  Please consider yourself as if you've always been here.  I'm sorry to hear about your Dad's diagnosis.  The good news is that there are many treatment options for this scary disease.

You'll see as you participate in this forum, that there are many with varied biopsy results who are doing well.  Also, there are others who have terrific challenges in their journey who provide us with an example of great courage and positive thinking.

Our diversity of treatment choices and results in this forum adds to the richness of the discussion and, I believe, helps us to develop respect and appreciation for each other when considering our own lot in life.

Keep asking all the questions you like and again, a very warm welcome to you.

 


Barry ~ (a.k.a. "Idaho") - Prostate Cancer Forum Moderator

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA  09/11/2007  <0.04 (undetectable)

2nd PSA 12/10/2007  <0.04

3rd PSA  03/17/2008  <0.04

My web site: http://pca-info.blogspot.com

Post Edited (IdahoSurvivor) : 6/14/2008 10:19:43 AM (GMT-6)


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/14/2008 8:57 AM (GMT -7)   
SD72-

There are three books, each by a different doctor, at least one of which you should read. The books are by Walsh, Strum and Scardino. You can order them through this website or directly from Amazon.

In addition, it is vitally important that you seek out the best doctors and hospitals you can afford, through insurance or otherwise. There are doctors and there are great doctors. And there are doctors whom, after encountering them, you may choose to "fire" and seek another. Don't hesitate to do it - it's done all the time. This is probably the most important battle you'll ever fight and it's up to you and your dad to guide it through to it's successful conclusion. And it can very well have a successful conclusion, but you two have to be strong, confident and informed.

It might give you comfort to read my signature below. I'm still going strong and am confident about my future.

I wish you both the best of luck.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - PSA undetectable, T is 20 and only one nodule has grown (from 8mm to 12mm). Felling much more confident than after 2/2208 reports

Post Edited (Gordy) : 6/14/2008 10:01:41 AM (GMT-6)


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 6/14/2008 9:22 AM (GMT -7)   

You da man, Les!  tongue

Thanks for your strength.

Barry


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/14/2008 9:31 AM (GMT -7)   
Thanks Barry. Just doing the best I can. One step at a time.

BTW - I'm not one, but Happy Father's Day to all you guys who are.
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - PSA undetectable, T is 20 and only one nodule has grown (from 8mm to 12mm). Feeling much more confident than after 2/2008 reports


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 6/14/2008 9:54 AM (GMT -7)   
Hi southerndrawl

I am also from North Carolina. Sorry you have to be here but you came to the right place. I did a lot of research and had open surgery at Duke Medical Center in Durham last May. Duke has a multidciplinary approach to treating PC. My advise to you would be to make an appointment with them so you can have expert information as to how to approach this. My Dr. is Judd Moul and I had a wonderful experience with he and his team at Duke. Let me know if you need to talk with me or your father in person. Good luck to you.

Mika
age at dx 54 now 56
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
wear one for insurance now
ED still a problem
last PSA undetectable
 


southerndrawal72
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/14/2008 11:41 AM (GMT -7)   
Thank you all for your input.

I spent time with dad today and got some more information from him. His PSA was a 5 and his Gleason Score is a 4+5=9 as I thought. The pain he is experiencing is in his leg, hip and lower back and from what I've read so far, that is a sign of metastasis in the bones. I am praying not. Dad didn't tell his surgeon about the pain. Dad is going to the VA in Asheville to have the surgery by a doctor from Duke who works for the VA. The doctor is Dr. Fitzsimmons, I believe is what I saw this morning.

The sad part is, as I ate breakfast with my dad, he looked so distant and sad. I don't think he knows enough about what to expect. I think he, like I, automatically thought death sentence. I don't think he had been given enough information to know anything about what is going on with him. I want to give him some good materials with some hope in them so that he can at least get his spirits up. I know that mental health as well as physical health help with the recovery process. Dad is a proud guy and his concern, besides thinking his clock is ticking down quickly, doesn't want to be incontinent. I told him that the percentages are lower these days.

I'm not sure what good information I could pass on to him for him to read. Any ideas on PCa and treatment literature.

Has anyone heard of Dr. Fitzsimmons from Duke? I'm going to google him to get some information. They have already scheduled dad for surgery on June 25 and then will let him know if more treatment needs to be done.

When I start to talk with Dad about this stuff, I almost want to cry. I can't think of life without him yet and I am scared.

Thank you all so much for your kind and welcoming words. I will be here every day for knowledge and companionship for both me and my dad. He doesn't have a computer, so, if you would like to leave him some messages of hope, I will print them and take them to him to read.

Blessings to you all,
Southerndrawal72
 
 
______________________
about my Dad:
 
PSA 5
Gleason Score 4+5=9
Scheduled for surgery at Asheville VA on June 25
Surgeon:  Dr. Fitzsimmons (from Duke)
Father's Age: 65
Hip, leg and back pain.
 
 

Post Edited (southerndrawal72) : 6/14/2008 12:44:19 PM (GMT-6)


hopemylove
Regular Member


Date Joined Apr 2008
Total Posts : 65
   Posted 6/14/2008 3:47 PM (GMT -7)   

hi southerndraw72,

from all my research, i have found that surgery is not preformed with metatasis. the treatment would be hormone therapy. has your dad had any cts or bone scans to check for mets-- i would request them before surgery is preformed.

i will keep you and your dad in my prayers

karen eyes


Karen--New York
Husbands Info:
Age of diagnosis--62
2/28/08--PSA 279   DRE--positive/rock hard
Flomax and Casadex started
Biopsy--3/7/08--187cc--Gleason 10--12 of 12 positive--Perineural and LV invasion identified
T4 bone met.--hydroureteronephrosis/right kidney
3/28/08--Lupron Inj. started
4/7/08--Zometa IV started
5/15/08--PSA 12
5/20/08--Tubes placed in kidneys (through back)
5/21/08--diagnosed Neuro Endocrine Prostate carcinoma
5/28-30/08--1st Chemo
 
 
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 6/14/2008 4:15 PM (GMT -7)   

My pre-op figures were very similar to your dad's. PSA 5.7 (slowly rising) and Gleason 4+5=9. I had a bone scan pre-op, apparently standard practice with my uro for high Gleason scores. So I think it would be a good idea for your dad to also have a bone scan, and to be upfront about his pains, especially as you are worried about them.

I had surgery 3 months ago, and after the pathology, my Gleason was downgraded to 4+4=8. The cancer was confined to the prostate.  I also had a bone mets scare, but it turned out that I was worrying needlessly. My uro told me that my PSA would be "in the hundreds" before I would notice any physical symptoms from PCa metastasis.

I also at one time thought that I might have had only a year to live -- we always think the worst at times like this, just after diagnosis. I have had two brushes with cancer, and thought the same both times. Wrong both times!  

My uro is confident of a "cure" -- I'm still not so sure. But I now realize that even if the worst happened, and my PSA started to rise again, there are other treatments still possible, so I should still be able to survive for at least another 10 years, which will take me beyond the traditional three-score-and-ten. And in that time, medical science may find some new treatments.

Before my brushes with cancer, I was afraid of getting cancer. Now, after treatment, I'm still afraid of getting cancer. So nothing has changed! In fact I am now better off than before, because I no longer have two bits that are very susceptible to cancer, and I will have better monitoring than I would have otherwise.

Yes, it's normal to feel down for at least a few days after a cancer diagnosis. But we do come out the other side of this, and fortunately, nearly always things turn out a lot better than we first feared. So chin up and keep us posted :-)


Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week PSA: 0 


Been there
Regular Member


Date Joined Jun 2008
Total Posts : 22
   Posted 6/14/2008 10:29 PM (GMT -7)   
Your father is very lucky that he has a daughter like you that is going to be there for him. Support from a child is comforting to a parent and it is the best kind of healing therapy. The battle against PC isn't easy but it is very winnable and you and your father will win this battle. Your father has you in his corner and his desire to win will be stronger because you are there with him.
 
 

mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 6/15/2008 5:51 AM (GMT -7)   
Dear Southerndrawal72

Do you live in Asheville? I live in Marion and just went through this last May. If you need or your father need to talk just let me know and I'll give you my phone number.

Mika
age at dx 54 now 56
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
wear one for insurance now
ED still a problem
last PSA undetectable
 


southerndrawal72
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/15/2008 5:54 AM (GMT -7)   
Thank you for your input. It's good to hear of all of the people here that are fighting and winning this battle. This place is a Godsend to know there are people who have and are dealing with this.

I am going to take my dad some literature from the wonderful page listed here as resources to help educate him. I will also talk with my dad about discussing his pain with the surgeon. If he doesn't, I will mention it.

Blessings to you,

Southerndrawal72


_________________________
PSA 5
Gleason Score 4+5=9
Scheduled for surgery at Asheville VA on June 25
Surgeon: Dr. Fitzsimmons (from Duke)
Father's Age: 65
Hip, leg and back pain.
About my Dad:
 
PSA 5
Gleason Score 4+5=9
Scheduled for surgery at Asheville VA on June 25
Surgeon:  Dr. Fitzsimmons (from Duke)
Father's Age: 65
Hip, leg and back pain.


tom'swife
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/15/2008 10:40 AM (GMT -7)   

Hi Southerndrawl:

My husband's surgery was just this last Monday (June 9, 2008). We found out he had an enlarged prostate in March. PSA and biopsy in April. Diagnosis 5.01.08. There were some really difficult moments in between. I have read so much information and researched as much as I can about this disease. While you may feel out of control and wish to get off the roller coaster ride you now find yourself on, please know that education is your best ally. Read! Read! Read! Your father will begin to trust your knowledge. My husband only was hearing 1/2 of what doctors said. I had to be his ears and his eyes. Go with your Dad to any doctor's appointments. Get his permission to be involved in his treatment. Ask his medical providers to provide a HIPPA form and get your dad to sign it so you can know detailed information. Again, Read! Read! Read! Advocate for your father and also for yourself. This disease effects a man and all of those in his life. We are fortunate so far, but know we have a long road ahead of us. My husband was performing kegel exercised one full month prior to surgery. He has a very good outlook also and being positive going into this is very, very important. My southern born and bred heart goes out to you. Please let me know if I can help you in any way.

Husband Tom's Info:

PSA 6.7; 5 of 12 cores positive; t2b stage; 3+3=6 on left; 3+4=7 on right; DaVinci on 6.09.08 (6 days ago); lost right nerve bundle; Margins verified on Friday were clean. (Great news) Doctor: Jean Joseph, M.D. of University Urology; Surgery at Strong Memorial Hospital, Rochester, NY. (Dr. Joseph: top 10 DaVinci surgeons in country)


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 6/15/2008 9:59 PM (GMT -7)   
Gordy,

That "Happy Father's Day" means a lot to me from you, buddy.

We continue to have you in our thoughts and prayers.

In friendship,

Barry

Barry ~ (a.k.a. "Idaho") - Prostate Cancer Forum Moderator

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA  09/11/2007  <0.04 (undetectable)

2nd PSA 12/10/2007  <0.04

3rd PSA  03/17/2008  <0.04

My web site: http://pca-info.blogspot.com


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 6/15/2008 10:05 PM (GMT -7)   
I have started to post a number of times and keep getting pulled away from the computer. Anyways, I know EXACTLY what you are going through. As you can see from my signature, my father was dx and had treatment this year. He is currently on HT and completed surgery and radiation. I have MANY, MANY, sleepless nights and would be happy to help. Similar to you, I was doing a the research for my father and somewhat took the wheel as he and my mom absorbed the shock of cancer. Feel free to contact me anytime if you have questions or want to chat. Hang in there and stay strong. You will have good days and bad days, my prayer for you is that the good days far outnumber the bad. HW is an incredible site as you have probably already noticed. Keep asking away and keep holding on!! Sending both you and your dad my best!
Doting
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
Praying for a cured dad. First PSA 3 months!


Co-Moderator Prostate Cancer Forum

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