Late Diagnosis

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DanielleS
Regular Member


Date Joined Jul 2007
Total Posts : 57
   Posted 7/7/2007 12:48 PM (GMT -6)   
I am new here and see that there are many who were diagnosed in their late 40's or early 50's.  Unfortunately my husband was diagnosed a few months ago at age 53 at a more advanced stage with a PSA of 174, Gleason 9.  Bone scan is negative but there is suspected abdominal lymph node invovement. 
 
He began having some ED symtoms 3 or 4 years ago.  Saw family doctor who prescribed Viagra, no further testing.  Had physical with blood work and colonoscopy January of 2006, no PSA ordered.  Mention of urinary weak stream was dismissed by this doctor as part of getting older at another appointment.  PSA was finally ordered with this year's physical. 
 
I am having a hard time accepting the fact that a PSA test was never discussed or ordered until this year.  My husband saw this doctor many times over the years.  I know we bear some responsibility in this; I only wish we had had the knowledge to specifically request the PSA test.  I try not to dwell on this but it's hard not to think the difference that diagnosis even a year earlier might have made. 
 
We are warning friends and relatives to specifically request the test; don't assume like we did that this is being checked as part of a "physical".  We live in a small town and this is the only medical clinic so we cannot cut our ties completely.  I am having a hard time placing complete confidence in the two urologists we are now seeing - I hope we will get to the point of feeling that comfortable with a doctor's advice. 
 
Thanks for the opportunity to vent. 

Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 7/7/2007 1:53 PM (GMT -6)   

DanielleS,

Let us know what part of the world you are in and some member nearby may have some helpful information about treatment facilities and experienced physicians.

It is unfortunate that no annual PSA check-up was done since before age 50 - at least!

As you start this fight from where you are, keep posting and many with similar medical circumstances can give you a heads up on options your physicains might not review with you.
My experience is that once a physician is nervous about a situation / apparent oversight, they become so careful about what they say and do that it hinders things a little. 

Be clear about this:  YOU NEED A SECOND OPINION!  Just because you are from a small town does not preclude this.  Any good physician (and almost all insurance) will welcome this.

Examine all of your options.  If radiation is recommended, at least investigate Proton Therapy. as an alternative.

May God's Love be with you, always - in the Son!

CCedar 



~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*
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:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?

Post Edited (Cedar Chopper) : 7/8/2007 7:24:32 PM (GMT-6)


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 7/7/2007 5:03 PM (GMT -6)   
DanielleS,

First of all, I'm so sorry for you both. I'm glad you found this sight.

You don't mention any treatment - what was prescribed? My husband has systemic pc (in distant lymph nodes) and is on hormone therapy. Many men have lived for years on HT and thats what we're planning on!

Yes, Cedar Chopper is correct - a second opinion IS called for. Get a copy of all your records as soon as possible - make sure if do you send them to another doctor for review, you keep a copy for yourself. There are other doc's/hospitals who will go over your records. We were able to contact a great hospital and send FedX all of my husband's records to them. We corresponded with them via email & phone. It's easier than you might think.

I know you must be overwhelmed but there is lots of info out there and some help for you. Please come back and ask any questions you have. We don't know all the answers (we don't claim to be "experts") but we all speak from a place of understanding and concern. There are great people here who will stand by you.

All the best 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


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 7/7/2007 5:41 PM (GMT -6)   

You could find the book by Dr Myers worth reading. "Beating Prostate Cancer: Hormonal Therapy & Diet"

Dr Myers underwent radiation and hormone treatment for his PC some time ago. His book is very comprehensive and covers various treatments, diet, supplements, lifestyle, myths of hormone treatment, case studies etc.

Another good source of information is the yananow.net site which has lots of stories from men who have used all kinds of treatments. Look under mentors experiences.

John


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/7/2007 5:55 PM (GMT -6)   
DanielleS,
I for one will stand by you. If not for a physical this year I could easily have ended up in a year with your husbands numbers. I am late stage III and my pre-op PSA was 19.8. The Gleason is 4+3=7. My doctor here in Vegas was "aggressive" in ordering a PSA even though I was only 44. Thank goodness he did. Susan and Cedar are wonderfull contributers here and as several others are we certainly feel bad to welcome you but you can vent all you want. And I hope you do. Your husband is blessed to have you searching a place to do so out. This is a great site that helped me when in need. I truly care about all the responders here and believe that there is reason to stay upbeat at any stage of this disease. It's always a "one treatment might not work so well but another might" mentality, but I believe everyone here should have it. I hope you come back here and let us try to enforce that mentality. God bless and be diligent.

Tony
 
Excellent call by AUS, I just read that book and it is loaded with great information.

Post Edited (TC-LasVegas) : 7/7/2007 5:24:26 PM (GMT-6)


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 7/7/2007 6:29 PM (GMT -6)   
DanielleS -

One thing to keep in mind is that most urologists are surgeons. I would suggest seeing a medical oncologist for your next opinion, even if you have to travel to do it - we're talking about your husband's life, after all.

-Gordy

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/7/2007 8:09 PM (GMT -6)   

Hi ~ Danielle & Loved Ones,

 

                Welcome to…

                                      HealingWell

                                                                       and

 

                  A   Special   Warm Welcome  to  Youyeah

 

KNOWLEDGE    IS    POWER  ...  and  POWER conquers  fear

Click here..>>  The Power of Hope

 

Keeping you close in thoughts and prayers as you move forward… in your search for answers…  In Friendship ~ Lee & Buddy

 

 (Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/7/2007 8:52 PM (GMT -6)   

Hi ~ Danielle,

 

You are truly going to find this forum family a great source of comfort and support….  :-) Reaching out to “all of us”…. is a wonderful gift you just gave yourself and your loved one!!!

So ~ continue to stay close!   You can vent, you can cry, you can do just about anything that you need to do here…. and know that we’ve all been there…. at one or more stepping-stones along our own journey with prostate cancer… 

 

Walking this path with friends who understand makes all the difference in the world.  And we are truly World Wide as you can see from a Thread titled:  Hugs are Universal...  (click on link and refresh once you get there!!)

 

Please ~ continue to reach out….. Helping Hands are here for you…  don’t let go!!!!

In Friendship ~ Lee & Buddy

 

Click here....>>>  BOOKS... Recommended by Forum Members 

(for listing of book AUS & Tony mentioned in their postings)


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 7/7/2007 9:26 PM (GMT -6)   

Dear Danielle,

Please feel free to vent as much as you need to.  We all (well, many of us) have done so with some regularity. Nobody will think less of you when you need to let off some frustration. 

I don't blame you for being unhappy with your doctors.  I certainly would be.  Please be as proactive as you can.  Tony and others here can help much more than I.  Come back here as often as you need to. Most of us aren't medical people, but we are experienced.

Regards,

Bill


Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


DanielleS
Regular Member


Date Joined Jul 2007
Total Posts : 57
   Posted 7/8/2007 8:37 PM (GMT -6)   
Thanks for all of your kind words and support. Even getting to this point has been rather complicated and at some point I will post more. Husband's only treatment presently is the Lupron. Another concern is the PSA hasn't dropped as dramatically as we would like in the past three months. Another PSA test is scheduled for this week so of course we are hoping for a big drop this month.

We have an appointment this week for a second opinion with a radiation oncologist. The first declined to treat, suspecting distant lymph node invovlement. Urologist strongly recommended we get another opinion - he has discussed radiation from the start and does not seem to feel the CT was as abnormal as the first radiation onc. It's confusing but we have nothing to lose and as many of you stated, a second or even third opinion is wise.

Thanks again for your kindness - it helps to feel less alone.

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/8/2007 8:53 PM (GMT -6)   
Stay close!!!! and continue to move forward... We will all be right here.. Hugs from Lee & Buddy

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 :)

 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 7/8/2007 9:01 PM (GMT -6)   
Danielle,
It's good to get more than one opinion. Docs should expect that after all, this is major to say the least and if it were them they would seek out every avenue possible. With every appointment you learn more. Make sure to ask "Why not?", too.

You're right to feel anger regarding the PSA testing...it should've been done. Ok, it wasn't...now once you move past that you can use it to drive yourselves to learn as much as possible. It is overwhelming but you can do this.

Check out Bluebird's book link mentioned above.

We all wish the best for you & your husband, Danielle.

Susan

AEG
Regular Member


Date Joined Nov 2005
Total Posts : 154
   Posted 7/9/2007 8:10 PM (GMT -6)   
Hi DanielleS,

I'm so sorry for what you're going through. I can't believe that the family doctor didn't order the PSA, that makes me so mad. Please know that we are here for you.

There is a link that I've posted before about Dr. Fred Lee's story that is inspiring:
 
http://www.rochesterurology.urologydomain.com/handler.cfm?event=practice,template&cpid=34

Post edited to activate link…. 


My thoughts and prayers are with you and your husband and may your husband have a full and speedy recovery.

Best of luck to both of you.

AEG

Post Edited By Moderator (bluebird) : 7/9/2007 9:13:54 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/28/2008 2:08 PM (GMT -6)   

Hi ~ Danielle,

It really is nice to see you posting again since (July 07).... please as your time permits ~ let us know how you and your hubby are doing.  Take care and stay close! Hugs from Lee & Buddy

Post edited to add date of last posting from Danielle... :) 


Post Edited (bluebird) : 4/28/2008 6:15:06 PM (GMT-6)


DanielleS
Regular Member


Date Joined Jul 2007
Total Posts : 57
   Posted 4/28/2008 3:56 PM (GMT -6)   

Thanks for remembering me - I often read the board but had not updated.  The second radiation oncologist we saw was strongly in favor of a course of radiation for my husband.  His case was also reviewed by the hospital tumor board who were unanimously in favor of radiation.  (So anyone considering getting a second or third opinion, make sure and do it - professional opinions in this disease seem to vary widely!).  My husband had radiation to the abdomen, pelvis and prostate and tolerated it very well.  His most recent PSA at the beginning of March was 2.0 which is the lowest it's ever been.  He continues with the Lupron, feels very well.  We take one day at a time and try to live life to the fullest. 

This board is a great source of advice and support - my best to everyone here. 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/28/2008 5:22 PM (GMT -6)   
Danielle
Thanks so much for coming to the forum you will find so many loving, supporting folks here ready and willing to lend any type of support possible. I got in on this thread late and it sounds like you already have some great words of wisdom. As you can see from my signature I bear some resemblance to your husbands condition. I have lymph node involvement and have been on hormones for 10 months now. I plan on living many years with this as I expect your husband to as well. Please do get a second opinion even if it confirms what you already know, at least it will give you some peace of mind. Also try to find the blessing amidst this chaos, sometimes we cannot see the blessings because of the fear, anxiety, and saddness, but as that subsides the two of you will be stronger, more spiritual, and happier than ever before. There is a light at the end of the tunnel and I guarantee this is not the final chapter in the book of life, it is just the begining of a new journey. please feel free to email anytime you would like and we can discuss this at length.
May God bless you and comfort you

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
 

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