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Worried about this waiting game

User
Posted 27 Apr 2019 at 06:36

Hello Everyone I am 53 next week and I have just being diagnosed with postrate cancer yesterday.

My PSA was 4.02 then I was sent for MRI and biopsy..

MRI showed abnormalities so biopsy showed 2 sample from the left  andhad cancer .

My Gleason Score is (3+3 =6 ) and apparently not aggressive.

So they have put me on an active monitoring treatment plan where they check my  PSA in 3 months time and if the test shows it going up then we can discuss a treatment plan.

MRI scan shows it hasn't spread from the postrate sack

They don't want to start any treatment plan until they see it's starts to grow because of treatment side effects. 

But I am a bit worried that 3 months is a long for things to go wrong...

What do u guys think?

 

 

User
Posted 27 Apr 2019 at 10:02

welcome!

 

Three months will, alas, feel like a long time - but in PCa terms, it isn't very long; prostate cancer is pretty slow-moving thing. The thing about the PSA test is that while it can be a good alarm bell, it's unreliable, and often affected by other things. However, a change in PSA can be quite indicative about what's going on, so repeating the test, three months later, is not unusual. 
You're a 'young man' in PCa terms, so deciding the way forward is important.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 27 Apr 2019 at 10:50

Just to add to what Heenan73 said, your Gleason score is the lowest level that's regarded as cancer, and it was in only 2 cores (you didn't say how many cores they took, but it's usually 12 assuming TRUS biopsy), and your PSA is low too (although the rate of change is the more interesting thing). If it needs to be treated, it has been caught very early.

In case you weren't told beforehand, avoid sex, cycling, horse riding, and any strenuous exercise for a few days before the next PSA test, as these will cause a higher reading.

User
Posted 27 Apr 2019 at 11:13

Hi Bob,

It is quite normal for AS at your low readings of level 3 it's the lowest reading for prostate cancer and they need three months to see if you need longer AS or another treatment.I had 3+4=7 but had five samples positive out of twenty but still contained with in the prostate and i was given a choice of Robotic removal or brachytherapy.

If you read up on here about your options and what other people have done i think it may help you to make decisions if you have to in the future.

You will find all the members on here very helpful as i did two and a half years ago when i started the journey.

Good luck John.

User
Posted 27 Apr 2019 at 14:38

Thank you Guys for your advice on this it's very much appreciated.

And yes it was 2 cores out of the 12 both on the left side she said.

I forgot to mention that she said that at that 3 months point I would also have a template biopsy too.

 

User
Posted 27 Apr 2019 at 15:45

Hi Bob

My situation is similar to yours. Am 53 now and was diagnosed a year ago at 52.

My PSA was 7.2 a year ago. Had MRI scan and TRUS biopsy (14 samples) which showed 2 samples as Gleeson 6. 

Have been on Active surveillance since March 2018 with 3 month appointments. In Feb 2019 my PSA rose to 17.9. Had a repeat MRI scan which indicated a move from PIRADS 2 to 3. Then had a Template Biopsy under a general anaesthetic which again showed Gleeson 6. Waiting now for next PSA and appointment in May to see what PSA is doing. if still going up probably recommend treatment however fingers crossed it may go down  - you never know!

I can empathise with your concerns and worries as every 3 months its wondering what next. However it seems that my treatment plan is similar to yours so don't worry about the 3 month intervals.

Hope all  goes well

Mark

 

 

User
Posted 27 Apr 2019 at 15:57

Template biopsy is more accurate than the TRUS biopsy, and it can get to all of the prostate (which TRUS usually can't).

User
Posted 27 Apr 2019 at 16:37

Thanks Mark that's a jump from 7.2 to 17.9 hope it all goes well.

It's a good thing u mentioned it just in case I check mine in 3mionths time ( The worry would have killed me)

BTW What is PIRADS 2 to 3

User
Posted 27 Apr 2019 at 19:07

Hi Mark

I think I have answered my own question here..

https://radiopaedia.org/articles/prostate-imaging-reporting-and-data-system-1?lang=gb

 

User
Posted 27 Apr 2019 at 20:44

It's good you're getting a template biopsy and 3 months seems reasonable with 3+3 and low psa.  I had a psa of 9.9 then a basic biopsy that had 1 pin on one side with 5% bad cells.  It was 4+3 and the GP had said the left side felt hard.  After the MRI they said it was 13mm on the left side. After the op it was 4+4.  With a 3+3 and low psa the probability is that it's lower grade but it's better to keep on top of it, learn as much as you can about your condition and not let things slide.

User
Posted 27 Apr 2019 at 21:22

Thanks Peter and everyone else

I am trying to learn as much as possible of my condition.

Hopefully when I get the report from the specialist in the post that was copied to my GP as she was writing it as I was there .

For now I am just going to try and get back into my exercises and workouts which I stopped a month ago due to my biopsy.

The specialist said it's ok for my to keep up with them if I feel up to it.

Again thanks everyone ❤️❣️

User
Posted 28 Apr 2019 at 01:28

This is a good explanation of active surveillance

https://prostatecanceruk.org/prostate-information/treatments/active-surveillance

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Apr 2019 at 07:19

Hi Bob,

My mate has been on AS quite happily for for five years at G3+4=7. He has had a PSA rise recently so will have to do something different soon.

All the men here would give their eye teeth to be G3+3=6, and there is even a school of thought that G6 shouldn’t even be called ‘cancer’ in future, so as to avoid worrying the patient unnecessarily. If you had a critical illness insurance with Aviva, for example, they wouldn’t pay out on less than a G7 as a G6 is not classed as ‘life threatening’.

If I were you, I would keep calm and carry on as normal, until I heard otherwise. And avoid any ‘treatment’ which is likely to be life-changing (as well as potentially life-saving) as long as possible, hopefully, forever.

Best of luck.

Cheers, John.

Edited by member 28 Apr 2019 at 07:51  | Reason: Not specified

User
Posted 29 Apr 2019 at 12:58

Thank you John for your reply it's so much appreciated.

I think with the help of this group I have started to get my head around it and learning more about my condition.

I have decided that the best thing I can do for myself and my family is keep myself as healthy (if there's anything like that) and fit as possible until my next PSA in 3 months so that if there is a rise my treatment options would not be limited due to health issues.

I am based in Brighton and hoping they have good treatment facility in my area.

I did a 10km weighted  walk yesterday and hopefully I can keep it up .

Again thanks everyone from the bottom of my heart for your support ❤️💕💕

User
Posted 29 Apr 2019 at 13:47

At least a couple of us have consultants who have said exercise is one of the best treatments there is for cancer, and in some cases better than any drugs available. My consultant is involved with a charity Prostate Peddlers to get patients cycling, particularly when they haven't done anything for years.

It sounds like you're into exercise anyway, so that's great.

I've been doing a lot of cycling over the last several years anyway. I've reduced my work since diagnosis and I'm spending lots of my time cycling whilst waiting for radical treatment, and loving it. I was back on my bike 6 days after TRUS. I did have to adjust the saddle so there was no pressure on the perineum whatsoever.

User
Posted 10 May 2019 at 23:32

That’s wat happened to my husband and his psa never went up 12 months later a friend passed away so my husband insisted on a template biopsie that showed more cancer so don’t sit back and take there word for it 

User
Posted 16 May 2019 at 12:13

I had a Radical Robotic Prostectomy with nerve sparing surgery on one side.  My Gleason score was 7 and my surgeon thought it was aggressive given family history.  I came across quite a few men who had a much lower Gleason score than myself who had opted for surgery and I recall a conversation with a specialist about 1 year before my operation who contemplated men with a history of prostate cancer in the family might opt to have their prostate removed ... just in case!

After my surgery I now wait anxiously for my 4 monthly PSA tests to see what the score is.  Given what I know now and given your situation there are two things that come to mind:

1.  my cancer was right on the edge of the prostate and it wasn't until the prostate was removed that it could be seen whether the cancer was contained or not. If it was not contained then further treatment would have been needed in that area.

2.  due to the cancer being on the edge of the prostate nerve sparing surgery was undertaken which has resulted in erectile dysfuntion so far post op.

If I had the surgery knowing that the cancer was contained in the prostate then this would probably not have affected my erection and sexual life so much as it has done as all the nerves could have been spared.  I would have a serious chat with your specialist about the effect of surgery now on your nerves and the effect on your nerves if surgery is put on hold.  I would also ask about the time frame involved if surgery was needed.  You say that you are having tests every 3 months but then if it was found that you PSA had increased does this mean that you would then have to wait for another scan and then a biopsy?  And then how long if you needed surgery?  From PSA test to scan to biopsy to surgery was 9 months for me.

Edited by member 16 May 2019 at 12:15  | Reason: Not specified

User
Posted 16 May 2019 at 19:39
Anon, do you mean that you had non-nerve sparing?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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