Author Topic: Prostate Cancer News  (Read 2368 times)

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Offline sedge

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Re: Prostate Cancer News
« Reply #30 on: 23 April 2017, 11:20:54 AM »
Thing is, too, that the test results will have been communicated to his GP, Maureen.  Hence, his GP knows he was having trouble peeing then - so it would be absolutely reasonable for him to go and ask for another one since his waterworks probs haven't gone away.

Hate to say this - but he's exactly the same as you with your gallstones !

If you care to ASK anyone who didn't find out until it was really really bad - they ALL say they wish they'd found out earlier when the treatment would have been far, FAR less invasive and problematical both for them and the medical profession.

You could offer to do a deal with him you know!

Tell him you'll get your gallstones out, if he gets his urinary problems sorted! - and MEAN it!
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline sedge

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Re: Prostate Cancer News
« Reply #31 on: 23 April 2017, 09:32:54 PM »
Oh I forgot to say, yesterday.  So when we left the Urology consultant last Wednesday, he said he'd see Pete next, 6 months after he sees the Oncologist at the beginning of July - so he'd put him to be seen in December and gave him the form for his PSA test before that meeting, which he wrote 'Dec 17' on.  And as we went out into the corridor, he was dictating the consultation notes.

Saturday morning, the postman came and delivered a letter to Pete from the NHS.

It says his appointment has been arranged for a date in October and it's from a Urinary Nurse Specialist, Virtual Clinic.  Says that he'll be telephoned between the hours of whatever, to let them know his mobile phone number by texting his hospital ID and the number, to a number and to make sure he 'stands by his phone' at the appointed time.

WTF ?  to coin a phrase !

Now we do know that Josh - the Prostate Cancer Nurse Specialist, does have 'virtual' consultations one or two days a week, where he phones people (much quicker and simpler than having to go to the hospital of course - but we didn't think Pete qualified for that.  We expected it to be reserved either for new patients or those having a bit of a complicated time - the John's of the area, sort of thing.  People who need re-assuring.  Perhaps it is with him?

But how very odd it wasn't mentioned.  We will obviously try and find out!
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Paulines7

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Re: Prostate Cancer News
« Reply #32 on: 24 April 2017, 09:28:51 AM »
All very strange.  Maybe the nurse didn't know that the consultant had said he would see Pete in December.  I am sure a phone call to Urology will sort it out.
Diabetes Type2 diagnosed March 2014.  Treated by diet only.  HbA1c 60 on diagnosis, 52 in June 2014, 50 October 2014, 44 December 2014, 48 May 2015, 50 Sep 2015, 53 Jan 2016, 50 Oct 2016, 56 Feb 2017, 50 Jun 2017. 50 Aug 2017.  Pacemaker fitted 2008.

When I get old I don't want people thinking
                      "What a sweet little old lady"........
                             I want 'em saying
                    "Oh Crap! Whats she up to now ?"

Offline sedge

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Re: Prostate Cancer News
« Reply #33 on: 24 April 2017, 11:32:56 AM »
Well Pauline, the MacMillan nurse he was allocated always seemed pretty useless to both of us, you could never get through to her if he needed to speak to her, he left messages to be called back but sometimes one of the other nurses were there and answered and they were a lot more helpful, generally - so if it's her he'd be quite happy to miss the call!  OTOH if it's something that needs to happen for some obscure reason they haven't bothered to tell him, then that's different .....

Think it may as well wait till he sees Dr K the Oncologist in July who will have his notes with him and should be able to tell him - Josh is attached to Oncology in their bit of the hospital (the Arden Centre) rather than lumped in with the main hospital where urology are.  Josh actually said something like he was working with 'the girls in Urology trying to bring them a bot more up to speed' so I thought to myself 'Ah, we're not the only ones who aren't impressed then' LOL

I think we're much more likely to get a sensible answer more easily by waiting TBH.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline GrammaBear

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Re: Prostate Cancer News
« Reply #34 on: 18 May 2017, 04:31:59 PM »
My hubby had the TURP procedure in 2015 and the Urologist who preformed said procedure seemed to feel everything was alright afterwards.  Apparently not because now my hubby has been referred to another Urologist being as the first one retired.  The present Urologist is a younger man himself and approaches these 'man problems' differently.  He sent my hubby for an ultrasound today and then we 'wait' for a week to learn the results.  We are both quite concerned to say the least. 
Type 1
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A1C 6.5%~ Sep 2017

Offline Pattidevans

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Re: Prostate Cancer News
« Reply #35 on: 18 May 2017, 07:44:04 PM »
Kathy

Why was your hubby referred to the urologist?  Was it simply because the one he saw retired and the younger one taking over merely wanted to catch up with his patients?  Your system is so different to ours.  Or did his GP refer him because he has further symptoms?   If a chap in the UK was to see a urologist and have a TURPS procedure which was declared a success he would be discharged from the Urologist and not see him again unless he went to his general practitioner complaining of symptoms.

I can understand you both being concerned, but in your case may it just be common procedure?
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline GrammaBear

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Re: Prostate Cancer News
« Reply #36 on: 18 May 2017, 08:31:34 PM »
Kathy

Why was your hubby referred to the urologist?  Was it simply because the one he saw retired and the younger one taking over merely wanted to catch up with his patients?  Your system is so different to ours.  Or did his GP refer him because he has further symptoms?   If a chap in the UK was to see a urologist and have a TURPS procedure which was declared a success he would be discharged from the Urologist and not see him again unless he went to his general practitioner complaining of symptoms.

I can understand you both being concerned, but in your case may it just be common procedure?

Hubby went to the GP who in turn referred him to the Urologist because he has pain in that area.  The pain is not constant or intense but the Urologist also found 'something' upon examination.  That is the reason for the referral for imaging test done today.  The GP should have done a follow up PSA but she did not.  We have no idea what his PSA is "post-op".  Hubby gets the results of today's test next week and I will be attending that appointment with him and asking the questions he should have been asking the first time he saw this Urologist.
Type 1
Tandem Tslim pump Oct 2015
Dexcom G4 CGM Sep 2007
A1C 6.5%~ Sep 2017

Offline Pattidevans

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Re: Prostate Cancer News
« Reply #37 on: 18 May 2017, 11:01:30 PM »
Ah now I understand.  Well let us know what happens and meantime I will be keeping my fingers crossed that it's not too serious.  I hope the urologist also did a PSA?  Julian didn't have an ultrasound, nor, I think, did any of the other chaps we know.  They did have MRIs.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline sedge

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Re: Prostate Cancer News
« Reply #38 on: 19 May 2017, 03:19:06 PM »
Yeah - but all of ours had cancer - a TURP isn't necessarily because of cancer - can be done for BPH, can't it?  Someone we know (Chair of local P Cancer support group - so he had his treated but I dunno exactly which method, may have been radiology) now years later is currently having trouble emptying his bladder and has to self-catheterise so they're discussing and thinking about either leaving him on hormones and the same DIY he's currently using, or a TURP.  Presumably much like eg gallstones or unborn babies, the ultrasound looks at exactly where the swelling is, how big it is etc.

I mean, will say this for the NHS, before they suggest which treatments are suitable - they do want to know exactly whether it's cancer or not, if so, the exact type of cancer and then - whether it's already spread elsewhere, hence the MRI - and Pete also had a bone scan which seemed like it was standard at our hospital.  Only then, when they know all that, do they tell you what your possible options are, really.

Yep Kathy!  I've certainly asked some questions at Pete's appointments that he hasn't - and I'd not be surprised if Patti and Pauline haven't too!  I don't actually tell Pete well I want to know this beforehand - they are things I want to know, cos it will make it easier for me to help him - or just satisfy my curiosity - or I just fail to grasp whatever it is!

But of course - our chaps will get at least annual PSAs done for 10 years - and I imagine - bit like us ladies and the mammograms - when they or we drop off the automatic invitation list - we'll all see to it that we get it done often enough, anyway.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline GrammaBear

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Re: Prostate Cancer News
« Reply #39 on: 20 May 2017, 06:30:54 PM »
Jenny - What is the recommendation for your chaps as far as having the PSA test done?  You mentioned every year for 10 years, and then how often?  The last PSA my hubby had done was 2015 and that is what this new Urologist he saw was referring to.  The new Urologist told my hubby that his PSA was within normal limits.  What the heck is "normal"?  When I checked on his lab test results the hospital posts on their online patient portal, his PSA numbers were at the high end of 'normal'.  Is it like with women and their mammograms......here they tell women over a certain age that if all their checks have been normal for the past 5 years then you can skip the yearly test and go every other year.  Not sure how I feel about the government always changing its mind.
Type 1
Tandem Tslim pump Oct 2015
Dexcom G4 CGM Sep 2007
A1C 6.5%~ Sep 2017

Offline sedge

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Re: Prostate Cancer News
« Reply #40 on: 21 May 2017, 11:41:22 AM »
To begin with Kathy if it's just a PSA test with no symptoms, anything above 3 gets referred to the hospital.

After you have had cancer treated operatively or with radiotherapy - it should be Nil.  If it isn't Nil - they watch it like a hawk on approx monthly basis and should it continue to rise, they discuss further treatment. 

I do not know how they view the results for men who still have the cancer and are living with it and receiving continuing treatment.  Point is though if the level it has been previously happily sitting at starts rising consistently after you thought you had it sorted - it can be a sign that secondaries have formed - so you need treatment pdq - or at least a scan to see where and what - all of which may differ depending on where the secondaries are.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Pattidevans

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Re: Prostate Cancer News
« Reply #41 on: 21 May 2017, 01:42:22 PM »
Kathy

From what I have read, the range for "normal" levels of PSA varies according to the age of the chap.  See https://patient.info/doctor/prostate-specific-antigen-psa  That article also deals with other reasons for an increase in raised PSA levels.  For example, your husband's PSA level may have been the result of the TURPS procedure, or indeed the enlarging of his prostate which led to him needing the procedure.  It doesn't automatically mean cancer.

The reason our chaps will be monitored for the next 10 years is that they actually did have cancer.  Men who do not have cancer are not regularly screened and that article linked above deals with the reasons for that too.

Sedge
Quote
I do not know how they view the results for men who still have the cancer and are living with it and receiving continuing treatment.  Point is though if the level it has been previously happily sitting at starts rising consistently after you thought you had it sorted - it can be a sign that secondaries have formed - so you need treatment pdq - or at least a scan to see where and what - all of which may differ depending on where the secondaries are.

My friend's hubby is living with cancer and receiving continuing treatment.  They check his PSA 3 monthly.  Initially his PSA was over 100.  On Hormone treatment it dropped into single figures, but now it is raised again to 30 something.  He sees the Oncologist privately through PPP, but until now his treatment has been on the NHS at the Oncologist's recommendations.  A week or so back he saw the Oncologist after a bone scan and there is a small offshoot at the top of his spine.  So, he was put on different drugs and he is currently feeling very well.  Unfortunately they received a bill for £2,000 for a month's treatment of this new drug.  They are horrified as PPP doesn't cover this cost (despite them paying 6K per annum for PPP) and they cannot afford the drug at that cost.  I understand the Oncologist's secretary is applying to the cancer fund on their behalf... but what a dilemma for them!  Come off the pills and cancer progresses, or go bankrupt!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Venomous

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Re: Prostate Cancer News
« Reply #42 on: 21 May 2017, 03:55:47 PM »
Kathy

From what I have read, the range for "normal" levels of PSA varies according to the age of the chap.  See https://patient.info/doctor/prostate-specific-antigen-psa  That article also deals with other reasons for an increase in raised PSA levels.  For example, your husband's PSA level may have been the result of the TURPS procedure, or indeed the enlarging of his prostate which led to him needing the procedure.  It doesn't automatically mean cancer.

The reason our chaps will be monitored for the next 10 years is that they actually did have cancer.  Men who do not have cancer are not regularly screened and that article linked above deals with the reasons for that too.

Sedge
Quote
I do not know how they view the results for men who still have the cancer and are living with it and receiving continuing treatment.  Point is though if the level it has been previously happily sitting at starts rising consistently after you thought you had it sorted - it can be a sign that secondaries have formed - so you need treatment pdq - or at least a scan to see where and what - all of which may differ depending on where the secondaries are.

My friend's hubby is living with cancer and receiving continuing treatment.  They check his PSA 3 monthly.  Initially his PSA was over 100.  On Hormone treatment it dropped into single figures, but now it is raised again to 30 something.  He sees the Oncologist privately through PPP, but until now his treatment has been on the NHS at the Oncologist's recommendations.  A week or so back he saw the Oncologist after a bone scan and there is a small offshoot at the top of his spine.  So, he was put on different drugs and he is currently feeling very well.  Unfortunately they received a bill for £2,000 for a month's treatment of this new drug.  They are horrified as PPP doesn't cover this cost (despite them paying 6K per annum for PPP) and they cannot afford the drug at that cost.  I understand the Oncologist's secretary is applying to the cancer fund on their behalf... but what a dilemma for them!  Come off the pills and cancer progresses, or go bankrupt!

Oh goodness thats awful.
T2 and PCOS. Just had large serous adenofibroma removed with ovary and fallopian tube. Bp is now normal!

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Offline Pattidevans

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Re: Prostate Cancer News
« Reply #43 on: 21 May 2017, 05:02:13 PM »
Yes, I know... my friend is beside herself!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline sedge

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Re: Prostate Cancer News
« Reply #44 on: 21 May 2017, 10:30:33 PM »
We know not very much at all about the drugs used for secondaries - except that there have been all sorts of different developments in the last couple of years - and I got the impression that UHCW patients were gladly volunteering to try some of the newest ones, so whether it's clinical trials or only available to certain groups, or they're trying it on X or Y or what I don't know.

I dread what you've said, happening to any of our chaps anyway.  It metastases so speedily (cancer generally I mean) - and blokes have been honest with us and said they had their op eg 15 years ago and all was still fine, then wham.  You'll know who I immediately think of, for whom it went wham - I didn't have to watch that thank God - but I know it was not at all pleasant for her or anyone else.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4