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

Terry Allen and Debbie live in Texas, USA. He was 64 when he was diagnosed in March, 2016. His initial PSA was 2.80 ng/ml, his Gleason Score was 6, and he was staged Unknown. His initial treatment choice was Non-Invasive (Active Surveillance) and his current treatment choice is Non-Invasive (Active Surveillance). Here is his story.

Good morning. I have been reading the YANA site for the past few months. My PSA has historically been around 1.7. Early this year it jumped to 2.8. My doctor referred me to a urologist. I have a very STRONG family history. Numerous DREs found nothing. The urologist did a biopsy which found a small trace of Gleason 6 in 1 of 12 samples. My next PSA was 1.7. I felt great. I just had the three month follow up PSA and it jumped to 5.2. I guess that if I said that I was afraid it would be an understatement. I am looking for advise and opinions. Also looking for someone to talk to. I am glad that I finally joined YANA.

UPDATED

November 2016

Time for an update. In January my PSA had jumped to 2.8 from historically around 1.7. My doctor was alarmed because of family history. The urologist did a 12 needle biopsy and found one core of 5% Gleason. My initial reaction was "get the darn thing out". However after speaking with a radiologist and a surgeon I settled on Active Surveillance. It was probably the surgeon who really swayed me. He told me that AS was what he would suggest. In April I had a follow up PSA and DRE. I call the DREs Poke and Hope. The doc pokes and I hope. The PSA was down to 1.7 and the DREs have always been negative. I felt great. I went in late August for my three month PSA. The number was 5.2. I was shocked and afraid. My appointment with the urologist was still two weeks away. When my appointment finally rolled around he did the DRE and fortunately it was negative. He told me, "cancer does not behave this way". It was about this time that I really started reaching out to some YANA members for support. I emailed Harry, Frank and Peter. Their stories seemed to be similar to mine and they all sounded extremely positive. They all responded within 24 hours and they all made me feel better. I reread their emails many times and have the messages filed in my YANA folder. My first lesson; the people on the YANA site are amazing. They are the greatest and my gratitude is endless

After the 5.2 PSA, the urologist wanted a two month follow up. In late September I went for the blood test for an October 4th appointment. PSA was down to 1.6 and the DRE was normal. Everything was great.

My second lesson is that PSA is a strange thing. I think that for certain men the PSA test is a must. High risk demographics, family history and us geezers should be checked. However it seems to be more of a "flag" than an absolute. This year alone mine has been 2.8, 1.7, 5.2 and 1.6. For me the DRE is the real deal if you have a good doctor.

My third lesson came from Harry. You have to know your body. He is so correct. Right before my blood test that came back with the 5.2 PSA Debbie and I had gone on two road trips and driven over 4500 miles within three weeks. She is convinced that I developed some type of infection.

I am still a rookie when it comes to this whole thing. However, it is time that I started giving back. If I can help anyone with advice or support I will do my best. Thanks Harry, Frank and Peter. For now, all is good.

UPDATED

April 2017

Well fellow warriors, and those who are nearest and dearest to us, I figured it was time for an update to my story. It has been a year since my first biopsy and the diagnosis of one of twelve samples with a small amount of Gleason Six. My PSA continues to hover around 1.6 to 1.9 and all of the DRES have been negative. I received the results of my yearly biopsy a little less than a week ago. Again, one needle out of twelve with less than 5% of Gleason Six. I still cannot refer to this as Prostate Cancer. Scares me to death. The day I went for my results I told Debbie that I would go by myself. Well I did, but as soon as I walked into the waiting room, there was my beautiful lady waiting for me. No man is an island. I felt so loved. I guess I realized how much we all really need people. The YANA website and the people who are so involved are the same way. Last summer my PSA jumped to 5.2 and I guess I was a little bonkers. I reached out to Frank, Harry and Shadetree and they were all a calming influence. Turns out that Deb and I had been on a couple of long road trips and I am sure that had an influence. The next PSA was 1.6.

I chose AS as a treatment method because of the research I did and also, in a large part, because of YANA. Too bad I met so many of you guys on this site and not the golf course. I am happy with my choice of AS but I will not hesitate if anything looks goofy. If I ever need more it probably will be robotic surgery. As so many of you say, "Life is good".

UPDATED

September 2017

Time for a little update. I just went through another PSA test and the usual "Poke and Hope" (DRE). The PSA came back at 1.6 and the DRE was negative. My doctor also sent biopsy samples in for genetic testing and the results came back "Very Low Risk". He said that I had a one percent or less chance of the darn thing killing me within the next ten years. I could not have hoped for anything better. The doctor said that we could cut back my visits to once every six months. However, I am going for a little shorter time frame for awhile. Probably every four to five months.

When I was originally diagnosed I just wanted to have surgery and be done with it. Fortunately the surgeon that I went to see said that I was a perfect case for AS. My urologist also agreed. The honesty of these two doctors really impressed me and convinced me to stay calm and think things through. I am so glad that I did. The anxiety is still there as I get closer to the next PSA and DRE. However, my problems are minor compared to some. Debbie and I just got back from Minneapolis, Niagara Falls and Toronto. Life seems amazing. Think things through guys. There are many options. YANA is a GREAT resource. Thank you.

UPDATED

February 2018

Just got back this morning from my latest visit to the Doc. PSA is at 1.8. Up a little from five months ago but it seems to bounce around between 1.6 and 1.9 and my doctor is not concerned. The DRE was completely normal and as I mentioned in my last update my doctor had sent a biopsy sample for the Oncotype genetic test and it came back, in my doctor's words, as amazingly unaggressive. I asked about a biopsy as my last on was almost a year ago. Doctor said there was no need for one as things seem to be going just fine. I am getting ready to retire and I mentioned to him that I was considering starting a prostate support group as there is very little in El Paso. My doctor is starting a group and he asked me to join him and some others. I look forward to helping others as so many people on the YANA site have helped me.

When I was originally diagnosed, almost two years ago, the doctor told me that this would never kill me. Nevertheless there were some very dark days. I am slowly learning how to deal with things. It is a process and Debbie is my strength. If I can help anybody I am more than willing. I am SO lucky.

UPDATED

September 2018

Two weeks ago I had my six month check up and everything was great. My PSA was 1.6, which is normal for me, the DRE was negative. Debbie and I have both retired and are going to do some traveling. I am fortunate to have a great urologist. He never rushed me into a treatment decision. I am also so fortunate to have such a great wife and two beautiful daughters. Lookin' forward to many more trips around the sun.

UPDATED

April 2019

Had my six months PSA and visit with my urologist in early March. My PSA was 1.5, the lowest it has been since I was diagnosed three years ago (my normal seems to be 1.6). My doctor made the comment that he wished he had been more comfortable with AS sooner. AS definitely seems to be the treatment of choice for many of us. I still get nervous waiting for the PSA results but I am doing a little better dealing with the anxiety. Things are great. I am always here to help anyone who just needs to talk.

UPDATED

October 2019

Debbie and I just relocated to Oro Valley (near Tucson) Arizona. Naturally I had to look for a new doctor. My doctor in El Paso was great and I seem to have found another good one in Oro Valley. Dr. did a DRE, sent me for an MRI and ordered a PSA test. It was GREAT news all the way. The DRE was great. The MRI was clear. The PSA was 1.5, unchanged from seven months ago. I am so grateful to mt doctor in El Paso for encouraging AS. My advice to those guys considering AS is twofold. You will probably always be nervous as your six month check up and PSA comes due. It will probably never go away but it will get easier. Secondly, you must be vigilant. You mus get checked and have your PSA tested as prescribed.

UPDATED

May 2020

I had my most recent PSA test about six weeks ago. It came back at 1.6. Great! Active Surviellance was the correct decision for me. You have to be vigilant.

UPDATED

July 2021

It has been over a year since my last update. So here goes. Eight months ago my PSA went from 1.6 to 2.3. I went back to my old doctor in El Paso. The doctor that I found in Arizona had stopped taking my insurance. My doctor in El Paso did the DRE and said everything was fine and not to worry. My most recent PSA went down to 2.0. My doctor in Arizona takes my new insurance so I returned to see her. She did the DRE and said everything was fine. She told me to have another PSA in six months. She also said that I only had to come in to the office once a year. I will continue to see her every six months. I feel a certain comfort level going in twice a year. I will continue to see my doctor here in Oro Valley. 700 miles round trip, is just too far to drive for a 15 minute check up.

I really considered not updating my story. However, the YANA website really helped me when I was diagnosed over five years ago. If reading about my journey helps anybody feel better about their situation than updating my story is the least that I can do.

UPDATED

November 2021

Just had my 6 month PSA test and appointment with my doctor. My PSA is still 2.0. No change from six months ago. Did not have a DRE as I am only getting that once a year. Active Surveillance was a great decision for me.

UPDATED

July 2022

Just had my six month check. My PSA had risen to 2.9, which i wasn't to crazy about. The DRE exam was completely normal. Because my PSA had risen and because Active Surveillance suggests an MRI every two or three years my doctor sent me for an MRI. The PI-RAD score was 2 and the likelehood of clinically significant cancer was low. In short, the MRI was great. BPH caused by age probably caused a bump in PSA. Looks like I am good to go.

UPDATED

January 2023

Had my six month PSA test abour a month ago and it went back down. It is now 2.1. It seems to bounce around a little more as I get older. I will go for my yearly checkup at the end of June. Things are great.

UPDATED

August 2023

My yearly check up was another great one. PSA stayed the same at 2.1. The DRE was normal. My doctor offered me the option of having one PSA a year along with the yearly DRE. It has been seven and a half years of no change. AS has been a great choice for me if for no other reason that the treatment methods have progressed at such a fast pace. As things are going I doubt if I will ever need treatment.

UPDATED

February 2024

I last updated six months ago. My doctor had given me the option of having my PSA checked yearly and doing the DRE once a year. I liked that idea. However when I went for my regular physical my primary care physician did a complete blood analysis and my PSA had gone from 2.1 in August 2023 to 2.67 in February of 2024. I didn't care for that so a month later I had it retested and the new test showed 1.7. I have read that PSA can vary by as much as 36% from one day to the next. Crazy!

I think that I will go back to the six month PSA for a couple of more years. I will be 72 in a month and after a few mor years of PSA and DRE exams I will stop testing and dance with the one that "brung" me. I am so grateful for my original urologist in Texas that encouraged AS.

Terry's e-mail address is: terry6408 AT sbcglobal.net (replace "AT" with "@")


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