Worried!

[Timgie]

I was diagnosed with prostate cancer in September 2014 at the age of 47. It runs in my family so I started having a psa age 40. My resent numbers are good and there was no change in my September 2015 biopsy. They all wanted me to have a radical prostectomy due to my family history,  but my wife and I opted to go with active surveillance. I am struggling with knowing  it's there and not dueing anything about it,  my doctors say I am just delaying the inevitable. I would like to be in touch with someone who has gone through this at my age, I will be 50 next month and am considering treatment ( just not sure what) . If you have prostate cancer and have sons, please encourage them to have a psa.

[Frankomd]

hi.I was diagnosed in January  last year with prostate cancer.opted for the radical prostectamy.I'm 53.I had a  great surgeon.he done the keyhole surgery.I'm back to full health now.in between my biopsy and my op in August the cancer had become aggressive so I've been very lucky.my psa was 8 and gleason score was 4 and 3.my last 3 psa tests were 0.01 non detectable.

[ceejayblue]

My OH is on active surveillance, consultant agreed that it's best as his cancer is small and possible side effects from treatment at this stage are bigger than the likelihood of it spreading. He has low grade cancer.

[goodhealth1920 in reply to ceejayblue]

Hope your ok

[Hidden]

Morning just wanted to say I was told to go on active surveillance, but with the help of my wife who is a senior scrub nurse asked for a template biopsy that revealed my cancer was to aggressive to Waite so have decided on 4D brachytherapy as in my opinion it seams less invasive and produce the same results. Good luck with your decision.

[KwajMike in reply to Hidden]

How did the brachytherapy work out for you?

[Hidden in reply to KwajMike]

It's now nearing 6 weeks since the operation and I'm told it's the this is the time of the highest dose of radiation, when I my be feeling the effects. But apart from feeling slightly tired, and this may be getting up to pee twice nightly and before most night not at all. All seams to be ok. I have my 1st phone consultation soon, then PSA some time in August. So keep your fingers crossed please. So no inconstancy no ed.

[KwajMike in reply to Hidden]

Good luck and thanks for the info. Do you mind if I ask how old you are and what your psa and Gleason scores were?

[Hidden in reply to KwajMike]

Yes no problem I'm 67 PSA was 4.15. After taking pomT. Before it was 6.5 Gleason 3+4. Hopefully this was of some help. Please don't hesitate to ask if there's any thing I can tell you. And thanks for your good wishes.

[KwajMike in reply to Hidden]

Thanks. I'm younger but similar numbers. Did you do the brachytherapy alone or any follow up IMRT. The recommendation I have been given by the radiologist would be four high doses of brachy given over a 24 hour period in the hospital followed by a two week break and then 4-5 weeks of daily IMRT/IGRT treatments.

[Hidden in reply to KwajMike]

I believe from the information I researched, for me, l wanted 4D brachytherapy. I was not keen on any surgical intervention or any mixed therapies. I asked my Radiologist and she said in her opinion it was a good option. I asked her to refer me to Professor Stephen Langley at Surrey Hospital. Reason, the outcome is just as successful (too early to tell) the treatment, no where as aggressive to the body and the recovery is virtually immediate. However, the process prior I've TURP took longer to recover but not everybody needs this.

[jimreilly]

This is a complicated decision that has to be made between you, your family, and your doctor. I was a bit older than you, and did active surveillance for a couple years and then when it appeared things might be getting worse, I opted for surgery. In my case it seems to have turned out OK, my PSA is still undetectable after five years, and those two years of waiting didn't seem to do any harm. My doctor's office had several different doctors, and one of them specialized in Active surveillance, but both doctors I consulted in he office were OK with active surveillance. Have you had a second opinion from another doctor's office, or another doctor?

[Timgie in reply to jimreilly]

Yes, I have seen several. I am currently seeing a surgeon@ the James @ OSU. My most recent psa is 2.74 and my Gleason score is 3+3. The doctors concern is my family history, my brother is going through his 4th round of treatment. It's not like you have lung cancer and they tell you we're going to do this. So many options.

[Mjlandivar in reply to Timgie]

Have surgery. Dont play with your health. Defeating cancer earlier is much better than later.

[ffiore]

Timgie - you don't say what your PSA is? What has it been over the years? If your biopsy showed cancer - did you get a second opinion from pathologists like Dr. Epstein on your Gleason score? What was the Grade assigned to what they find?   T1,T2, T3? What was the Gleason Score? All these numbers are very important. You can not make a proper decision for any course of treatment without knowing them. I decided to do Active Surveillance after my diagnosis after my TURP. At the time, my PSA was less than 1.0 and had never gone over that for 30 years. My Gleason score was 3+3 =6. I was worried what to do since I was told I had cancer. After three years with a real PSA never going higher than .6 I took a T3 MRI and it found nothing. My PSA is still .6 and I know the chances of having cancer are near zilch according to the T3 MRI. Find your numbers. Again. You can't make proper decisions if you don't know them.

[Timgie in reply to ffiore]

My psa was 4.78 and had been creeping up over the years. My Gleason score was 3+3, T1, 2 of 12 cores positive. One year biopsy showed no change and my psa was 2.14. 

[DesBodd]

Hi Firstly I can sympathise with what you are going through. My father had it and in those days did not have the technology to detect it before it spread. I was diagnosed  when I was 69 and I only thought something was wrong because I was dribbling excessively. I had a PSA test which was 9. When I had all the tests in hospital ie a double biopsy which you have under anaesthetic two scans one specifically of my bladder area and a bone scan. The result was that I had a very slow growing cancer which I may have had for 10 years. Gleason was 6 and 7. Part of the Prostate it had surfaced and the other not. I like you was offered the options and quite honestly seeing the results and side effects of chemo etc I wanted to have surgery and get it removed. This happened and my PSA has been 0.4 since OCT 2014 when I had it done.

I am older than you but whatever age you are this disease has the same effect on you physically and in lifestyle. You need to ask loads of questions and ask your consultant to explain the consequences of the operation. You need to know the procedure how it effects you side effects will it effect my life in any way. Aftercare procedures. What happens. I recommend the operation as a quicker surer way of eliminating the disease. Make sure they check the whole your body to make sure it has not spread.

You take care. Don't worry you will be fine. Let us know how you get on,

[pjoshea13]

If PCa runs in your family, yet you are hesitant to accept treatment, you might ask about testing for familial BRCA mutations.  If you test positive, you really have no choice at all but to get treatment.  IMO

You did not mention your Gleason score.  I assume that your GS is lowish for you to opt for active surveillance [AS].  Given your family history, I would pay for a 4Kscore  test:

4kscore.opko.com

It might help clarify your risk for aggressive cancer.

25% of men on AS progress.  The 4K test can be very useful in (a) allowing men clearly in the 25% to seek more timely treatment, & (b) giving some peace of mind to men clearly in the 75% to contine AS.  (But it's not always going to give a clear-cut answer.)  

Best, -Patrick

[Timgie]

My quality of life is good, one year biopsy showed no change and my psa went down. My wife has multiple health issues and it is hard for me to take that much time off work. Active survaliace is working for now. Everything still works good and that makes my wife happy. I still haven't ruled out surgery, when things start going down hill I will consider it. Thanks for your input. Stay healthy my friend.

[maack1]

For any man intending Active Surveillance I provide this information:

tinyurl.com/3r7mm8m