Introduce Yourself!

[Darryl]

Why not leave a short comment below and introduce yourselves. Give as much or as little information as you like. Feel free to ask your own questions here

[kevinf]

Hi Darryl, I'm Gleeson 6 - positive diagnosis in September 2017. I'm on 4 monthly PSA blood tests and a second MRI due in 2 years. So far, so good. I don't feel worried about not having surgery just yet but would be interested in hearing what triggered others to come off AS and have the op.

[Darryl Partner]

Good question. Knowing when to pull the trigger for a more invasive type of treatment is a big part of a quality AS plan

[Hidden]

I had RP prostatectomy in March 2012, with no regrets, no incontinence and no ED. Biopsy was Gleason 3 + 4. Post surgical histology report was Gleason 4 + 3, perineural invasion. (Perineural invasion means increase risk of extracellular spread.) Lymph nodes OK. Report said cells were so close to margins that complete removal could not be guaranteed.

Post op PSA 3 months, 6 months and 9 months <0.01.

At 12 months 0.02. Oncologist recommended doing PSA at 3 times 6 week intervals and if it rose 3 times, be referred to her. It went up and down, so wasn't referred.

Since then I have effectively been on AS, PSA every 6 months. In Sept 2016, the urology team discharged me, but to continue the 6 monthly PSA. PSA has risen, highest was 0.08 at discharge. Since then has stayed at 0.07.

I have been told that cells must have been left, (not necessarily cancer cells). I was treated as Group 2, Gleason 3 + 4 but was really group 3 Gleason 4 + 3.

I had a bone scan and MRI pre surgically which showed no local or metastatic spread. I had an MRI I'm March 2017 for other reasons, but which incidentally was clear of cancerous lesions.

I have a definite plan, for salvage radiation if necessary, depending on PSA level and won't change.

I can understand the anxieties that go along with AS. It's a "double whammy" for me as I've already had treatment I thought would be curative. The main thing is the uncertainty of it. When it's time for the next test waiting for the result. Wondering if it's inevitable that I have further treatment or if I can get away with it until I die of something else, (preferably old age!) Worried about the consequences of the treatment, worried about if I leave it too long and it's spread etc.

Nightmare!

What I've found helpful is that I spend quite a lot of time with people who have all sorts of cancers. I can help them and sometimes it's mutual. Some, even with terminal conditions , can be an inspiration.

There are ways of dealing with the anxiety. I am "living with cancer", my own and others.

[jackcop]

I think this is too long...

My diagnosis was this March 5, 2018. At age 67 my urologist diagnosed me with with prostate cancer. The cancer is contained within the prostate and is non-aggressive (Gleason = 3+3). The prostate was sampled 12 times. Cancer sampled with my biopsy showed both lobes with cancer: one lobe had tumors of 0.3 mm and 0.6 mm and the other lobe was 3 mm. The tumors were small and not aggressive. PSA was 5.4 when diagnosed. Abdominal CT scan and bone scan along with cysto (rule out cancer in bladder) indicated small, non aggressive cancer contained within the prostate. When all was considered, we decided on Active Surveillance as a treatment measure. After 4 months I went back to urologist who assessed my PSA (5.9) and DRE & determined that no aggressive treatment was indicated at that time (July 19, 2018). Next app't is in 6 months.

Thanks for reading

jerryc

[den44]

Hi Darryl. Thanks for creating a separate group on AS.

Based on a PSA doubling time of about 2 years, in 2016, I had 2 biopsies and in each one, there was 1 core with less than 5% Gleason 6.

PSA History: May 2014 - 2.1, Oct. 2015 - 3.4, April 2016 - 4.0, Oct. 2016 - 2.5, April 2017 - 2.9, Oct. 2017 - 3.4, May 2018 - 3.5

Age 69 -

Prostate: 54 grams

TRUS Biopsies: May 27, 2016 & July 29, 2016

May 27, 2016: Gleason 7 (3+4) in 1 core, less than 5%. Dr. Epstein (John Hopkins) pathology review - inconclusive. MSK pathology review - Gleason 6.

Yes, three different pathology opinions.

I had scheduled surgery based on the Gleason 7 (3+4) report from the first pathologist. I cancelled it when I received Dr. Epstein's report. The first pathologist then decided to send the slides to Sloan Kettering for a third review.

July 29, 2016: Gleason 6 in 1 core, less than 5%. 3 Pathologists agree.

I can't have an MRI because of my defibrillator. Two years ago, I had a consult with Dr. Edhaie of Sloan Kettering and he agreed with AS and said that I should have another biopsy in 2-3 years. Since that consult, I've had several PSA tests and my PSA has stabilized. I'm hoping that it stays level.

I will see my urologist in early November after my next PSA test. I also have an appointment scheduled with Dr. Ehdaie for another consult. Based on my next PSA, I'm hoping that I can further delay the next biopsy.

Statistically, I will die of something other than prostate cancer. Based on this, I'm thinking about not having any more PSA tests or biopsies. Having a PSA test every 6 months is stressful and I'd rather not have additional biopsies. I'll discuss with my doctors.

[JW2019]

My name is Joe. Just turned 49 two weeks ago and 2 days later diagnosed with PC. No family history, very athletic and in shape. Gleason 6 (3+3), 1 out of 12 biopsy’s positive, less than 15% in core, PNI present. PSA 4.7, jumped from 2.8 one year, Fee PSA .29. Urologist is recommending AS for now...surgery if need treatment. Hard to find a lot of guys in my category (under 50)...one famous one, Ben Stiller...got at 47, Gleason 7 and had surgery. I would like to try to name down my future treatment if needed now so I don’t have to worry about that if and when I need it. Right now I just want to be sure that I truly do have low grade cancer....also, try to learn what the real downside is for surgery a guy my age...most folks are saying that guys my age rarely have any side effects after surgery. All comments and thoughts welcome.