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Posted 6/13/2007 6:38 PM (GMT 0)
What's your story, how did you find out you had PC?

1.  How did you find out you had PC?

2.  If you had to guess, why do you think you got PC?

3.  How old were you when you were diagnosed?

4.  Did you have any symptoms?

5.  How many biopsies did you have and were they blind biopsies or ultrasound guided?

6.  What other tests did you have related to PC and when (before/after treatment)?

7.  How soon after diagnosis did you have treatment?

8.  What treatment(s) did you have?

9.  Was the treatment(s) successful?

10. Has PC changed your life in any way?  If yes, how?

11. What helped you the most with the struggle of PC?

12. Anything you would have done different if you could go back in time?

13. What advice would you give someone that was recently diagnosed?

14. Any books, websites, etc. you find particularly helpful?

 

Posted 6/13/2007 8:10 PM (GMT 0)
.  How did you find out you had PC?

From my 50 year physical that I put off until year 51.  Doctor was suspicious of PSA level rise and DRE results..which lead to my biopsy.

2.  If you had to guess, why do you think you got PC?

I suspect my diet (which has been terrible) was a contributing factor

3.  How old were you when you were diagnosed?

51

4.  Did you have any symptoms?

I seemed to always have to go pee.

5.  How many biopsies did you have and were they blind biopsies or ultrasound guided?

12 biopsy needles, ultrasound guided

6.  What other tests did you have related to PC and when (before/after treatment)?

None except the standard biopsy and PSA test

7.  How soon after diagnosis did you have treatment?

Two months

8.  What treatment(s) did you have?

Surgery

9.  Was the treatment(s) successful?

Given my stage (T3A) this is still open.

10. Has PC changed your life in any way?  If yes, how?

Oh yes.  Biggest one is change in diet habits.

11. What helped you the most with the struggle of PC?

Education and being a knowledgeable patient.

12. Anything you would have done different if you could go back in time?

Not to put off year 50 physical till year 51

13. What advice would you give someone that was recently diagnosed?

Watchful waiting is a bad idea.  Also in any treatment plan, what is the backup if the cancer comes back after the first treatment.  In my stage, I know that radiation is a viable backup plan. 

14. Any books, websites, etc. you find particularly helpful?

I have a directory full of websites.  Actually this is a good one because I can get good links here.

 

Posted 6/13/2007 8:48 PM (GMT 0)
What's your story, how did you find out you had PC?

 

Well, this is Ken's story via me, Tanya. :)

1.  How did you find out you had PC?

Biopsy on October 17, 2006.  Diagnosed October 30th.  Actually, we were kind of wondering what happened to the results.  I naively thought, "Well i am sure it is fine, if it was something, we would have heard by now!".  Turns out the results were bad and the time was for sending them to John's Hopkins for a third opinion opinion.  So got a call with the biopsy results.

 

2.  If you had to guess, why do you think you got PC?

Probably heredity.  His dad had it, and his grandpa died of cancer too, but they don't really know where it started. Plus Ken was exposed to Agent Orange in Vietnam. 

3.  How old were you when you were diagnosed?

Ken was 63.

4.  Did you have any symptoms?
Nope.  Other than a slightly high PSA of 3.7.  It had been up and down between 3-4 for a few years. 

5.  How many biopsies did you have and were they blind biopsies or ultrasound guided?
Ken had three for the previous three years.  They were transrectally ultrasond guided.

6.  What other tests did you have related to PC and when (before/after treatment)?

Just biopsy pre-diagnosis and blood/ekg pre-surgery.

7.  How soon after diagnosis did you have treatment?

about 5.5 months

8.  What treatment(s) did you have?

Da Vinci

9.  Was the treatment(s) successful?

Yes, in removing the cancer, so far anyway!

10. Has PC changed your life in any way?  If yes, how?

Well, definitely has made us both appreciate every moment.  Other than that sex so far.

11. What helped you the most with the struggle of PC?

This site for sure!!  So glad we found it on the day of our diagnosis!!  This is way better than any doctor advice, etc.

 

12. Anything you would have done different if you could go back in time?

No, not really.  Before we got our surgery, we were stressed out about the time it took and wished we could have gotten in sooner, but it all worked ok.

 

13. What advice would you give someone that was recently diagnosed?

Don't stress out too much pre-treatment. Take a break from thinking about it if possible. Take one step at a time.  Don't get ahead of yourself with "what-if's".  Deal with things as they come.  Baby steps.

14. Any books, websites, etc. you find particularly helpful?

Books :  Walsh's, Scardino's

Websites:  Here, of course, and  http://www.yananow.net/

Good topic,  Hope everyone shares :)


Tanya and Ken

 

Posted 6/13/2007 10:17 PM (GMT 0)
Susan posting for Don:

1. How did you find out you had PC?
Way overdue physical by Internist - DRE positive - PSA 7.76

2. If you had to guess, why do you think you got PC?
I guess I could say diet but don't really know.

3. How old were you when you were diagnosed?
63 - but believe it was there for some time.

4. Did you have any symptoms?
No

5. How many biopsies did you have and were they blind biopsies or ultrasound guided?
One - ultrasound guided.

6. What other tests did you have related to PC and when (before/after treatment)?
MRI of prostate bed, Bone Scans, CT chest, abdomen & pelvis, - these tests were done at least twice.

7. How soon after diagnosis did you have treatment?
3-1/2 months

8. What treatment(s) did you have?
Initally -LRP. Currently - Hormome Therapy - Lupron.

9. Was the treatment(s) successful?
No, cancer had already spread - although we still believe it was the right decision for him.

10. Has PC changed your life in any way? If yes, how?
Of course! At times it's extremely difficult - sad & painful. Other times its emotional - almost spiritual, I guess you could say because we fully realize how precious this life is and so we're grateful. In many ways its changed for the better.

11. What helped you the most with the struggle of PC?
I believe my husband would say "my wife" BUT he is a determined, strong, looking to the future man.

12. Anything you would have done different if you could go back in time?
Had a physical 5 years sooner. NOTE TO EVERYONE THAT READS THIS!

13. What advice would you give someone that was recently diagnosed?
Do not let fear take over - Educate yourself so you can make informed decisions - Make time to get away from everything related to pc for periods of time!

14. Any books, websites, etc. you find particularly helpful?
Books:Guide to Surviving Prostate Cancer by Patrick Walsh MD, Beating Prostate Cancer: Hormonal Therapy & Diet by Charles "Snuffy Meyers MD
Websites: HealingWell (because of the people here), Phoenix5, prostate-help.org and numerous others

Hopefully this will be helpful to all that read it...Good idea, AEG!
Posted 6/14/2007 12:20 AM (GMT 0)
1. How did you find out you had PC?
Routine Physical with a doctor who for some reason decided to run the PSA even though I was just 44.

2. If you had to guess, why do you think you got PC?
I thought diet, drugs when I was younger, cigars, but nothing adds up...just plain bad luck.

3. How old were you when you were diagnosed?
44

4. Did you have any symptoms?
None

5. How many biopsies did you have and were they blind biopsies or ultrasound guided?
8 Cores 4 positive. Negative DRE, Ultrasound guided

6. What other tests did you have related to PC and when (before/after treatment)?
None than already mentioned, after MRI, CT Scan, blood work...

7. How soon after diagnosis did you have treatment?
2 Months

8. What treatment(s) did you have?
Da Vinci then it was discobered to be pT3b. Radiation, HT, Chemo coming.

9. Was the treatment(s) successful?
Yes and no. Excellent surgeon healed quickly. Stage III

10. Has PC changed your life in any way? If yes, how?
Yes. I appreciate these people here. The type of person it takes to work in a cancer center is remarkable. I love my wife even more.

11. What helped you the most with the struggle of PC?
Ruthie...and you people

12. Anything you would have done different if you could go back in time?
I wish I had a physical every five years after turning 30. I don't believe that the notion that you don't need a PSA test until 50 (45 if there is family history) is valid.

13. What advice would you give someone that was recently diagnosed?
Stay positive.

14. Any books, websites, etc. you find particularly helpful?
For my stage there does not appear to be anything rock solid.

Tony
Posted 6/14/2007 1:00 PM (GMT 0)

1.  How did you find out you had PC?

Rising PSA over three months prompted biopsy.

2.  If you had to guess, why do you think you got PC?

No idea.  My guess is that stress may have had something to do with it.

3.  How old were you when you were diagnosed?

56

4.  Did you have any symptoms?

No

5.  How many biopsies did you have and were they blind biopsies or ultrasound guided?

Just one and it was ultrasound guided with 5 samples from each half.

6.  What other tests did you have related to PC and when (before/after treatment)?

None other then PSA’s

7.  How soon after diagnosis did you have treatment?

Approximately four months

8.  What treatment(s) did you have?

Da Vinci surgery

9.  Was the treatment(s) successful?

Yes, post op path report very good

10. Has PC changed your life in any way?  If yes, how?

Yes, the most obvious is sexual function.  I still have ED and using injections.  Spiritually I feel more connected to God then anytime before.  Mentally, I just do not let the small things bother me and as they say they are all small things.

11. What helped you the most with the struggle of PC?

No doubt, the interaction with other men (and wives) that were dealing with PC.  The practical knowledge provided by these wonderful people took the mystery out of PC and settled my nerves.  Second behind that was the comforting relationship with my urologist and his staff.

12. Anything you would have done different if you could go back in time?

If I could go back 10 years then I would learn more about PC and what you can do preventatively to help avoid it.  

13. What advice would you give someone that was recently diagnosed?

Research and learn.  Get a second opinion on treatment.  Connect with others that have traveled the same path or currently on that path.

14. Any books, websites, etc. you find particularly helpful?

Walsh’s book was helpful but I found that this forum and www.yananow.net provided the best information. 

 

Tamu

Posted 6/14/2007 3:06 PM (GMT 0)
1. How did you find out you had PC?
Out of a normal physical. PSA was 4.9

2. If you had to guess, why do you think you got PC?
No clue. I eat right...am in great shape. Maybe I did some bad things in the 70's.

3. How old were you when you were diagnosed?
57

4. Did you have any symptoms?
None (prostate was found not to be enlarged)

5. How many biopsies did you have and were they blind biopsies or ultrasound guided?
1 biopsy ultrasound guided

6. What other tests did you have related to PC and when (before/after treatment)?
All after: cat scan, regular MRI, MRI with endorectal coil, blood tests, bone scan

7. How soon after diagnosis did you have treatment?
2 months

8. What treatment(s) did you have?
Davinci Robotic

9. Was the treatment(s) successful?
Still waiting on pathology, but preliminary results great...interim blood test PSA =.6

10. Has PC changed your life in any way? If yes, how?
Putting plans in place for career change

11. What helped you the most with the struggle of PC?
Research: Internet, multiple consulations, talked to survivors & wellness counselors and yes this forum

12. Anything you would have done different if you could go back in time?
Would have started Kegels even earlier than I did if I'd known

13. What advice would you give someone that was recently diagnosed?
Research extensively and become a super well-informed patient

14. Any books, websites, etc. you find particularly helpful?
Read Walsh's basic book to understand what prostate cancer is, ignored procedure discussion as dated
Posted 6/14/2007 8:31 PM (GMT 0)

.  How did you find out you had PC?

Blood test for other issues included PSA, which came back at 24.  This put me on road to biopsy.

2.  If you had to guess, why do you think you got PC?

Heredity, I guess.  I had an uncle who had it late in life, but my mother, her sister, and THEIR mother all had breast cancer.  Stress, poor diet , and good old dumb luck may have all been factors, too. 

3.  How old were you when you were diagnosed? 46

4.  Did you have any symptoms?

Looking back, MAYBE.... Every now and then my urine stream would weaken, but nothing overt.

5.  How many biopsies did you have and were they blind biopsies or ultrasound guided? 1 -- guided.

6.  What other tests did you have related to PC and when (before/after treatment)?  CT, Bone scan.

7.  How soon after diagnosis did you have treatment? 2 weeks ( my PSA spiked up to 39 --- we decided not to mess around any more!

8.  What treatment(s) did you have?  RP, IMRT and 6 months of HT

9.  Was the treatment(s) successful?

Hope so...still on HT...next PSA in 6 months.

10. Has PC changed your life in any way?  If yes, how?

Yes... Had non-nerve-sparing RP, so permanent ED, HT has my libido on the fritz.   I understand heath issues impact on our lives better.  My relationship with God has changed --- not better or worse, just different.  I'm closer to my wife.

11. What helped you the most with the struggle of PC?  Knowledge.   I read a lot and talked to a lot of people. THis forum helped, also the folks at the American Cancer Society, and the Prostate Cancer Research Institue

12. Anything you would have done different if you could go back in time?  Had a PSA run at age 43...

13. What advice would you give someone that was recently diagnosed?  Feel free to panic at first, but get it out of your system.   Read, ask a lot of questions of your doctor, and don't let your imagination run wild.   Curling up in a fetal postion and moaining "I'm goonna die, I'm gonna die" over and over doesn't cure cancer --- I tried!   Keep a sense of humor --- helps a lot!

14. Any books, websites, etc. you find particularly helpful?  See 11.

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