Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

  SILVER  
This member is a YANA Mentor This is his Country or State Flag

Gene C and Nancy live in Arkansas, USA. He was 54 when he was diagnosed in June, 2009. His initial PSA was 4.70 ng/ml, his Gleason Score was 6, and he was staged T1b. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

Wow! What a devastating word cancer can be! I have a yearly check-up in June of each year and it was surprising to get a follow-up call this year to come back in to talk to the doctor again. He told me my PSA had gone over 4 and that I had to go see a urologist.

The next week I was informed that I had to have a biopsy. Damn! My blood pressure and cholesterol have been out of whack for a few years, but this was not what I wanted to hear! Had the biopsy (why don't they tell you how weird those side effects are!) and a week later found out I had one sample that came back at 5% positive.

Spent several sleepless nights running the full range of emotions...Read everything I could for the next week on prostate cancer. The urologist I went to wanted to cut it out immediately! I would be cured! But at what price! I decided to get a second opinion.

Went to another urologist who was VERY straightforward and I thought a true professional. My wife went with me and thinks he might be the best doctor ever! Anyway, I was presented with several options. I decided to do the Watchful Waiting or Active Management. Just checked my PSA in December and it stayed the same. My urologist told me that I need to come back in 6 months instead of 3. I am feeling good about it, but I know that the war is not over yet!

It is very encouraging to hear more and more reports that this early stage prostate cancer is probably being over treated most of the time.

UPDATED

June 2010

Well, it has been a year since I was diagnosed with T1C prostate cancer. Today was my scheduled yearly checkup and it went great! My PSA dropped from 4.7 to 3.8! I am very encouraged by the number. Also, no sign of a tumor, so I am extremely happy that I chose the Watch and Wait. It seems there are more and more studies showing that this is a very smart approach and that maybe there has been a lot of over-treatment for prostate cancer.

I wish good luck to everyone with this disease, and if anyone has any questions, please email me.

UPDATED

July 2011

Another year has passed and it is now July of 2011. Latest Psa has come in at 4.4 down from the Dec 2010 reading of 4.7. I seem to be staying around the mid 4s.

It has been two years since first diagnosed with T1C. Less than 5% in one sample out of ten. I did not care for the first urologist that I went to and have been seeing my GP with him sending my PSA results to another urologist. He was the one that gave me a second opinion two years ago and recommended Watch and Wait as a viable choice. Unfortunately, our insurance is not accepted at their clinic.

I had another discussion with my wife, and have decided to seek out another urologist in a larger city. ( Our choice in our hometown is only the one I didn't care for). I decided I would like to have someone to visit on a regular basis. So the search begins for someone that I feel I can trust...and who takes our insurance...

I have also never stopped doing research on various treatments. I have been doing a lot of investigating into proton beam therapy. One thing I have noticed is no matter what treatment you investigate, they all toot their own horns pretty loudly! I really appreciate reading everyone's treatment choices and reading about the results. Thanks to everyone here at YANA!!!!

UPDATED

April 2012

PSA has risen from 4.7 to 5.9. It has been almost three years since first diagnosed with T1c prostate cancer. Have been monitoring PSA and this is the first rise. My urologist is thinking it is time for another biopsy. I have decided to wait until May and have PSA checked again. The thought of another biopsy is not appealing.

Any thoughts? I would appreciate any input. [A variance as small as this one of Gene's is within the normal error range - see PSA Experiment for example. Also see John U's latest update which is an excellent summary of the issues.]

Thanks, Gene.

UPDATED

June 2012

It's been 3 years since my original diagnosis of PC. My first biopsy showed 1 out of 10 samples with 5% cancer.

My new urologist that I have been seeing for the last year and a half (my choice) was a little concerned with the change in the last 2 PSA reports. I had hovered around 4.7 for several years but in March 2012 it went to 5.9 and June of 2012 it went up to 7.0. In March my urologist recommended another biopsy (he did not do the first one but had the results).

I promised him that if my PSA; went up again in June I would call his office and schedule a biopsy pronto. That happened at the first of the month and I had a 16 core biopsy done this time with 4 in each quad. My results came back with 2 cores positive in the same general area as last time, which is deep inside. One was 7% and one 10%. Gleason score still 6.

Under advice from my doctor I am cleared to watch and wait and don't have another appt. until December. I am happy that I can continue to monitor my cancer. Of note though is that I am a lot more aware of my prostate this time. I don't know if taking that many more samples did it, but it seems a lot sorer after this biopsy than the last.

I hope everyone diagnosed with PC makes the right decision for themselves. Good luck and may God Bless you!

UPDATED

June 2013

June 2013. 4 years since first diagnosed with pca. My PSA; jumped to 7.9 in December 2012 so I was put on Avodart for 6 months. Psa now 3.2 for the last two 3 month checks but at my appt this week my urologist felt a lump.So I have moved from T1c to T2a. I am now scheduled for another biopsy in September. My urologist thinks the watch and wait may be over and it may be time for treatment....Time to revisit options just in case.. I will update this again in Sept.

UPDATED

October 2013

Clinical Trial. I signed up for a clinical trial in Chicago for focal laser treatment. Their parameters were very rigid and before I went I qualified. Everyone I dealt with at the University of Chicago were great! I was there for one day and had my PSA checked, a Prostate MRI with coil, and another biopsy. Fortunately my insurance paid for most of the costs. My total bill was slightly over $30,000 for those tests. The MRI did show the 2 small spots of cancer on the left side which matched my previous biopsy results. The biopsy that was performed there came back with different results. In an 18 core biopsy with 6 extra cores taken from the left side, my biopsy showed 2 very very small areas on the right! And nothing on the left! This disqualified me from the Clinical trial because the biopsy results had to match the MRI. The urologist that gave me the results was very professional and suggested that I continue the Active Management since the cancer areas are so small and Gleason score is still 6. I had my yearly checkup with my GP and a consultation with my regular urologist and they both agreed that Active Management is still a viable option. While it was disappointing to not be able to complete the clinical trial, I still feel good about my choice to continue to watch and wait. Over 4 years and counting....

UPDATED

November 2014

Year 6 of Watchful Waiting or Active Management. Just had my yearly checkup and all of my numbers are in line. EKG and chest X-ray fine. PSA 7.7. Then a trip to the Urologist. After looking at my numbers and a DRE he has put me on a once a year visit instead of twice. I will still do a PSA check every three months and if it changes drastically, I will have to go back to the Urologist. My original PSA 6 years ago was 4.7. In six years it has gone up 3 points. I have had 3 biopsies and all three found very little cancer, although it is there. My urologist and my GP both agree that waiting has been a viable option for me. Good luck to everyone here! Any questions, please feel free to ask. Gene.

UPDATED

December 2015

Over 6 years of Active Management have gone by. Still no treatment. I am now 60 years old. Psa has slowly risen in the last 6-1/2 years from 4.5 to 8.8. I started taking Cialis 5 mg a day and it is keeping my PSA steady this year. I don't know if this is because of other prostate problems, but I am happy and so is my wife :). My latest checkup with my urologist was fine. We have decided to keep watching. I still have my PSA checked every 3 months. Unless there is a spike I will not have to see my urologist again for another year. Life is Good!

UPDATED

November 2016

7-1/2 years ago I was diagnosed with PC. I just had my yearly checkup and, as I had guessed, it is time for another biopsy. My 4th one. And this time I will have an MRI done first. Not with a coil as I had done at the Univ of Chicago. But a newer one that should show the same results without the coil. Thankfully. So it should be interesting to see what both of those tests show and what the next step shall be. My PSA was originally 4.7 so it took this long to double that. I am hoping that we still see very small amounts of cancer and that the biopsy will prove that they are still very slow growing. I will post another update as soon as I get the results. Good luck to everyone battling this disease and if you have any questions on the Active Management or Watch and Wait approach, please let me know.

UPDATED

July 2017

Finally got the MRI and it showed a suspicious spot on the front anterior portion of the prostate. So that means another biopsy. Number 4. Anyway, I have 20% of 1 core that is Gleason 6 in that spot and now have 15% of Gleason 6 in the original 2 places. What does this mean? I still have a small amount of Gleason 6. Very treatable. And still cannot make up my mind. I found a Life Expectancy calculator from Memorial Sloan Kettering. webcore.mskcc.org. Punching in my numbers. Calculation says I will prob live another 10 years with no chance of dying from PC. And I have a 2% chance of dying of PC in the next 15 years. All with NO treatment. I also found an article about Gleason scores. According to what I read, Gleason 6 was being considered as not cancer. That Gleason 7 should actually be considered cancer. This crap gets more confusing every day! There aren't many of us willing to travel the Watchful Waiting route. I have made it over 8 years so far. The only way to avoid side effects is to wait, but it's a little stressful at times that's for sure.

UPDATED

October 2017

Nov 2015 - Had a shingles vaccination. PSA was 9.8 in Sept.

Dec 2015 - PSA up to 10.8

Mar 2016 - PSA up to 12.0

Jun 2016 - PSA up to 14.0. Decided to do another biopsy. Gleason 6 cancer in both spots on the left side where I have always had it. Found additional spot on the front side Gleason 6.

Aug 2016 - Went to a natural foods store and met with an interesting man there. Put me on BHT 500 mg per day for two weeks. 250 mg a day thereafter.

Sept 2016 - Started 15 mg of CBD oil capsules (purchased at my local health food store) for a week. Increased to 30 mg a day for the next 2 weeks.

Oct - 2016. PSA 10.7. I don't know for sure which of the treatments seem to be helping, but I am glad to see it is reversing. Have decided to keep up the 30 mg a day of CBD oil and see what happens 3 months from now. I had almost decided after over 8 years of waiting to get treatment. Guess I will continue with my present course. Trying to find info on CBD oil is tough. The US government has always taken a dim view of Cannabis both as hemp and marijuana.

Gene's e-mail address is: mustang_gene AT hotmail.com (replace "AT" with "@")


RETURN TO INDEX : RETURN TO HOME PAGE LINKS