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Christopher Ivy and Virginia live in North Carolina, USA. He was 58 when he was diagnosed in May, 2008. His initial PSA was 7.70 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

I have been following my PSA for several years.

In 12/04 PSA was 3.0,
12/05 4.7,
01/07 5.1,
07/07 5.2,
01/08 7.4,
03/08 7.7, and
06/08 7.7.

Two previous biopsies came back normal but the latest results was one core positive with 3% of tissue being cancerous.

I have had a bone scan which showed no problems.

A second opinion on the biopsy confirmed the results of the first biopsy. I received those results yesterday.

Have talked with physicians regarding external radiation and seeds. It seems that all I hear is why radiation is bad from the urologist and why removing the prostate is bad from the radiologists.

I am open to active surveillance with a little reluctance from my wife. I feel the missing piece is a color Doppler ultrasound. Have consulted with Dattoli Cancer Center who would do the color Doppler as well as some other tests. Their initial response from reviewing my biopsy information is that I would probably benefit from both external beam radiation and seeds.

I am have an appointment with my urologist this week where I plan to discus my apprehensions on treatment and I consult with a medical oncologist, radiation oncologist, and urologist at Duke University Medical Center scheduled for later in July.

Any suggestions are welcome particularly sites that offer Color Doppler ultrasound. I am especially interested in sites near North Carolina but will go to Florida if need be.

Is there anyone out there that is using the color Doppler, PSA follow up, and additional biopsies to follow their cancer rather than radiation or removal?

Also if I did need to proceed with a treatment neither option seems to be better choice. I am leaning toward removal based on the fact that the side effects are pretty much known right away as waiting for a few years to see what develops after radiation treatment.

Any help is greatly appreciated.

Thanks.

UPDATED

July 2008

Since I received my diagnosis in May I have done a lot of reading, talking with folks, and further consultation with doctors.

I got a second opinion on my biopsy which confirmed the original diagnosis of one of twelve cores positive at 3%, and Gleason of 6. PSA in March and June was 7.7, and I am looking forward to a new PSA in September.

I had several replies from my post on YANA which were helpful to me. I felt comfortable with Active Surveillance but there was some hesitation from my wife and I still think she would prefer some treatment but has become supportive of my decision. I had a consult with my urologist who was respectful of AS although he does not feel that I should wait too long possibly 6 months to 2 years.

Yesterday I had a consult with a multidisciplinary team at Duke's Prostate Center. All three people we met were extremely professional and respectful of my position. After reviewing my medical information and talking with my wife and me they supported my decision to wait. They recommended low fat diet, supplements of Vitamin D and Calcium, Soy Milk and Flax seed It was a monumental day for us.

I will continue to monitor my PSA every three months and proceed from there. Thanks to the men who responded to my earlier post, their support was helpful in getting me from May to July.

Will update with PSA reports in the future.

UPDATED

October 2008

I had a new PSA done at the end of September which was 5.5. This is down from 7.7 in June. Not sure what it means other than it did not go up. Continuing on supplements of Vitamn D, fish oil, flax seed, and excersize. Will meet with the urologist next week to discuss my situation. Not sure what else can be done at this time other than be pleased that the PSA did not go up!

UPDATED

January 2009

New PSA completed this week. Current reading is now 8.8 up from 7.7 in June and 5.5 in October. Having some prostatitis problems but this is still an all time high for my PSA.

Getting a little nervous about the elevated levels. I will be going to the urologist in February and will be discussing another biopsy.

UPDATED

March 2009

It has been nearly one year since my diagnosis.

I had a another biopsy done at the end of February. It came back with one core out of twelve positive at 5%. Gleason of 6.

I was pleased as was my doctor so we are staying the course with active surveillance. Still on vegetarian diet, fish oil, flax seed, and vitamin D.

UPDATED

September 2009

PSA in June was 8.8 the same as January. New PSA in September 2009 was 9.3. This is a new all time high. I am blaming some of the increase on prostatis. Currently on an antibiotic and I have been asked to come back in for a new PSA at the beginning of October.

My PSA was 7.7 at the time of diagnosis so don't know what to make of the increase to 9.3.

UPDATED

November 2009

I have had two additonal PSA's since my last post. The PSA continues to go up. At the end of September it was 9.8 and in November it is now 11.8. A pretty quick increase in the last 5 months. In May 2008 at diagnosis it was 7.7 and 8.8 in June 2009. However since June it has jumped 3 points.

Having another biopsy this week. The doctor is not sure what is causing the rise in PSA. I have been on several courses of antibiotics between these latest PSA readings. Will check back in after the biopsy results.

UPDATED

December 2009

Today was another uplifting day in my battle with PC.

Went to the doctor today for results on my recent biopsy and bone scan. The first words out of the doctor's mouth is I have some very good news for the both of you! All of the 12 cores came back negative. This is after two biopsies with one core positive with 5% involvement. My doctor is now willing to continue with the AS.

He did start me on Avodart although I do not have an enlarged prostate or any symptoms. He also prescribed Flagyl or two weeks.

The thought is there is a lot of inflammation which I have felt for some time. So there will be no surgery at the start of the New Year and have a return appointment in March.

UPDATED

March 2010

After the biopsy in December which came back negative I returned to the urologist in March 2010. A new PSA was done and was 5.2. The Avodart is responsible for the decrease. The urologist was fine with things as they are and I go back in June.

May 2010 will mark two years since the diagnosis.

UPDATED

June 2010

I have had two PSAs done since December. In March it was 5.5 and in June 4.7. My doctor felt things were going well and I have a return appointment set for September.

It has been two years since diagnosis (May 2008) and I feel that I am doing fine. Started drinking pomegranate juice the last six months and meds remain the same.

UPDATED

February 2011

I have just received the results for my sixth biopsy. No cancer in any of the cores. This is the second year in a row with no positive cores. PSA is at 5.3 down from 5.5 in September 2010.

This means I have had four biopsies that were negative and two that were positive with one core each at less than 5% involvement. May 2011 will be three years from diagnosis.

My question now is whether or not to remain on Flomax and Avodart. Avodart has resulted in sexual side effects which I would prefer not to have. My prostate is small so do not need the Avodart for BPH.

Hope that my story may help folks diagnosed with minimal cancer to take some time before they make their treatment decisions. At one time my urologist stated I was the only patient he had with this situation but now he has another patient in his early 60's who has also had a negative biopsy after the PC Diagnosis.

UPDATED

November 2011

I felt pretty good about my choice of AS. However the problem child is my PSA. I just had a color MRI done which noted a possible area of concern. I went in to talk with the urologist and we decided for me to keep my appointment in January 2012.

However he did have me have another PSA done. I got the results on Saturday and my PSA is now 16.19 up from 12.6 in August. I now have a return appointment for next Tuesday to discuss what the urologist feels should be done. He has also recommended another biopsy for January.

My concern is how much weight should this PSA be given. It is getting a little more anxious for me watching it go up so quickly. I am thinking the urologist will be talking to me about treatment options at my appointment next week.

I have been told that prostatitis may be the culprit but how long can I hold out with the increasing PSA? [It may be of interest for Christopher to review the 28 Day Experiment I ran on my results ten years ago. Christopher is understandably concerned about a 28% increase over three months: I had a 33% increase in three days.]

UPDATED

December 2011

Up early this morning (December 6) as I am finding it difficult to sleep, I have a 9:15 appointment with my urologist.

My last two biopsies have been negative and I went ahead and had a color MRI done last month which did not indicate cancer. I met with the urologist and our plan was for me to keep my appointment in January. However he did order a new PSA. That PSA came in at 16.2 up from 12.6 in August. He sent me the results and stated "Let's do another biopsy in January" and to call his office. I called and they asked that I set up an appointment to talk with the doctor.

I am thinking that he is going to tell me that I need to have treatment or he will not be willing to be my doctor as things are too risky. He was reluctant with my AS at first but has been ok with things so far. It has been 3.5 years since diagnosis, age 58, I am now 62. My concern is that the PSA rise is due to inflammation based on the negative biopsies.

I guess I will know the story in a few hours. I am not looking forward to treatment.

UPDATED

March 2012

March 2012 - After my insurance failed to approve a saturation biopsy I had a 14 core biopsy down in January 2012. The result was 14 cores negative. I have now had 7 biopsies. First two negative, the next two positive with 1 core positive with 5 per cent involvement and Gleason 6. The last three have all been negative. Now looking for ways to address inflammation. I am supposed to go for physical therapy as a way to decrease inflammation. Have a first appointment later in March. May 2012 will mark 4 years since diagnosis.

UPDATED

August 2012

In August 2012 I went in for a six month check up. PSA came in at 13.0 down a little from last winter.

It is always nice to have a down tick rather than an increase. Will remain on AS and return to the urologist in February 2013. It has been 4.3 years since diagnosis and doing well.

UPDATED

March 2013

Most recent biopsy was done in February and rose a bit to 16. Given the small increase and the number of negative cores in the past (2 positive out of 86 cores taken) it was decided not to do another biopsy at this time. Will follow up with another PSA in August. May 08th will mark the 5th year since diagnosis, I will be 64 in June.

UPDATED

April 2014

It has been a year since my last entry. Having visits with my urologist every six months will see him at the end of April. PSA remains high but fluctuates a little, I had a down tick at my last visit. Still doing active surveillance. Next month will mark 6 years since diagnosis. Since I have had so many cores taken and so many negative biopsies we are not planning on additional biopsies at this time. I did have a PCA3 done this past year hoping to get an indicator of the potency of the cancer but it was inconclusive. I forgot to check with my insurance before having the test done and ended paying $590 out of pocket for the test. Appealed to the insurance but they had an LPN review it and denied the appeal. An LPN? I wonder how much that person knew about prostate cancer. Will update with a new PSA after my April visit.

UPDATED

June 2015

It has now been 7 years since my original diagnosis in May 2008 and I am still on the path of Active Surveillance. I have had two PSA tests this past year. In October it was 18.6 and in April it was 16.75.

I had a second Prostate MRI and another bone scan done in November which did not reveal anything significant and my doctor and I decided not to do another biopsy. I remain on Flomax daily.

I am pleased that I chose the AS path back in 2008 when it was not that popular. AS is now supported by more physicians and remains a good option for some men.

The YANA site was extremely helpful to me at the time of my diagnosis, when I was full of anxiety and not sure what to do. I continue to receive emails from other men through YANA and am more than willing to communicate with others about my experience with PC.

UPDATED

March 2016

Next month will be 8 years since my original diagnosis. I continue to have semi annual PSA's and digital exams. There was a downtick at my last PSA in November. So staying the course for thge time being.

Christopher's e-mail address is: civy7@aol.com


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