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User
Posted 04 Jan 2017 at 12:37
I went into my RP with a Gleason of 6 very low grade only a few cells in each of the two positive cores.

One consultant said with my family history have the RT asap. The other said it will never cause a problem.

I played safe and went for the RP.

Today I am told Gleason up to 7 (3+4), and starting to invade the margins. Surgeon is confident he got everything.

I am so glad I did not wait.

We so need something better than the current MRI/biopsy diagnosis method, it missed first time around.

Oh and my PSA is 0.01 after 4 weeks expected to drop further, as it was done early.

User
Posted 04 Jan 2017 at 12:37
I went into my RP with a Gleason of 6 very low grade only a few cells in each of the two positive cores.

One consultant said with my family history have the RT asap. The other said it will never cause a problem.

I played safe and went for the RP.

Today I am told Gleason up to 7 (3+4), and starting to invade the margins. Surgeon is confident he got everything.

I am so glad I did not wait.

We so need something better than the current MRI/biopsy diagnosis method, it missed first time around.

Oh and my PSA is 0.01 after 4 weeks expected to drop further, as it was done early.

User
Posted 04 Jan 2017 at 23:13

Nigel - congratulations on your news and your recovery thus far. Stirrings already are a good sign hopefully. "Exercise" to encourage blood flow to the groin area whenever you can.

Christopher B - sadly we are all/were all "shooting in the dark" to an extent with regard to treatment choices at the stage you find yourself at now. All you can do is make YOUR preferred choice for YOU knowing that only you will deal with the consequences. I often read suggestions that there is "plenty of time", "no rush" to make a treatment choice but until the gland is out in a dish in a lab, no one knows what the true staging is. I was one of those who supposedly had time, no rush to choose. 7 weeks diagnosis to RRP, and after pathology my stats went from 6 to 7, T2A to T2B. A bit more time and who knows where it may have spread to? I am glad I did not wait.

What did your revisit in Mid-December reveal, or is that the meeting tomorrow?

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 04 Jan 2017 at 15:52

Really pleased at your result and positivity !!
Best Wishes Chris

User
Posted 05 Jan 2017 at 17:40
Hi Clare,

My first biopsy was a "blind " transrectal ultrasound with no MRI until 3 months later, just the standard MRI. The second was done with the aid of a standard MRI targeting a shadow. The shadow was just an infection, the cancer was invisible on the MRI.

Hi All,

Just taken delivery of an Afex urine collection system. Got stuck in a traffic jam for 2 hours today and the bag collected every thing . Very impressed.

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User
Posted 04 Jan 2017 at 14:31

Good news Nigel.

Remember though that it's early days as far as healing is concerned so don't go too mad!!

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 04 Jan 2017 at 14:49

Hi Nigel hope your getting over the op,it seems you made a good decision on your treatment and did not wait and see , so its slow and steady for a while, all the best Andy

User
Posted 04 Jan 2017 at 15:44
Thanks for the good wishes,

The first four weeks were horrible, intense pain when I moved or coughed, and my urethra blocked on 6 occasions with blood clots.

Then a week ago I woke up pain free.

I was seriously wondering why I had put myself through all this, but today so glad I did.

I am pretty dry at night, and get through 1 or 2 pads a day. I have been on two hikes 5 and 6 miles. I leaked like a sieve during and after each hike.

I have ordered some pants with a urine receptacle built in for hiking ( a bit like an external catheter).

Still only partial erections so going on viagra.

Good luck to all.

Nigel

User
Posted 04 Jan 2017 at 15:52

Really pleased at your result and positivity !!
Best Wishes Chris

User
Posted 04 Jan 2017 at 18:40

Hi NigelGood news for you but couldn't agree more re:

"We so need something better than the current MRI/biopsy diagnosis method, it missed first time around."

I have my second meeting with surgeon tomorrow and the lack of knowledge about the true staging, how aggressive the cancer is, etc means I'm shooting in the dark with my decision.

Best wishes for a fast recovery - enjoy the hikes!

Chris

User
Posted 04 Jan 2017 at 23:13

Nigel - congratulations on your news and your recovery thus far. Stirrings already are a good sign hopefully. "Exercise" to encourage blood flow to the groin area whenever you can.

Christopher B - sadly we are all/were all "shooting in the dark" to an extent with regard to treatment choices at the stage you find yourself at now. All you can do is make YOUR preferred choice for YOU knowing that only you will deal with the consequences. I often read suggestions that there is "plenty of time", "no rush" to make a treatment choice but until the gland is out in a dish in a lab, no one knows what the true staging is. I was one of those who supposedly had time, no rush to choose. 7 weeks diagnosis to RRP, and after pathology my stats went from 6 to 7, T2A to T2B. A bit more time and who knows where it may have spread to? I am glad I did not wait.

What did your revisit in Mid-December reveal, or is that the meeting tomorrow?

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 04 Jan 2017 at 23:28

Thanks Dave - the last visit was a waste as my surgeon was away, and the locum didn't want to proceed with anything until I met the surgeon again - so he got me have another PSA, which will be the third in about 7 weeks.

I just read Walter's post about his re-grading post op - that is the issue right there. The biopsy is a "click" in the dark, and you don't really know until it's in the petri dish!

Chris

User
Posted 05 Jan 2017 at 10:33

Hi Nigel,

Thank you so much for sharing. Very very useful for all to know. Can I ask re your original diagnosis journey. Did you have a MpMRI before the biopsy? And what sort of biopsy did you have?

Kind regards

Clare

User
Posted 05 Jan 2017 at 14:27

Hope you continue to make progress on your recovery Nigel.

Sometimes after a prostate has been removed it is found that the cancer has been over-graded but where not assessed as in biopsy, much more often it is found to have been under-graded/advanced. The lack of prior certainty on this makes the timing of treatment very difficult, particularly for those on or considering AS. Indeed a more effective means of determining the extent and progression of the disease is an urgent need in order to help both reduce the incidence of over treatment in some and to provide timely treatment for others.

Barry
User
Posted 05 Jan 2017 at 17:40
Hi Clare,

My first biopsy was a "blind " transrectal ultrasound with no MRI until 3 months later, just the standard MRI. The second was done with the aid of a standard MRI targeting a shadow. The shadow was just an infection, the cancer was invisible on the MRI.

Hi All,

Just taken delivery of an Afex urine collection system. Got stuck in a traffic jam for 2 hours today and the bag collected every thing . Very impressed.

User
Posted 06 Jan 2017 at 10:31
Thanks Nigel, my husbands Gleason 6 was fdiagnosed with MPMRI which can see it and a targeted. 46 core biopsy..

No idea if anybody knows if this makes this diagnosis more reliable or if risk of under diagnosis is reduced..

Any studies anyone is aware of re diagnosis accuracy?

Thanks

Clare

User
Posted 06 Jan 2017 at 12:29
Hi Clare,

I am not sure of what the MP bit of MPMRI is?

Both mine were with a gadolinium contrast agent.

Maybe someone here can shed some light on the difference.

Good luck.

Nigel

User
Posted 07 Jan 2017 at 06:30

It's a Multiparametric MRI which appears to be a combination of 4 types of MRI

Prostate cancer UK explain it here

http://prostatecanceruk.org/get-involved/donate/dm/help-fund-mpmri-2016

The diagnostic journey for each individual seems very dependent on investment decisions made and also this fund raising being done by prostate cancer UK

As everybody is saying accurate diagnosis is so important as the decisions made ... Well I think everybody understands this.

No idea re difference it makes though just that it sounds very sensible to have one of these. They are also crucial equipment for the focal treatment options as they allow imaging of the tumours in real time during the various focal treatment procedures.
Thank you so much for sharing your experience. This community is fab.

Regards

Clare

User
Posted 07 Jan 2017 at 11:14

There are rarer types of prostate cancer that simply don't show on scans though.

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

 
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