Diabetes Support Forum

News. views, research and opinions => Off topic => Topic started by: sedge on 06 March 2017, 03:19:32 PM

Title: Prostate Cancer News
Post by: sedge on 06 March 2017, 03:19:32 PM
Last Thursday evening we were lucky enough to meet someone new - A Prostate Cancer Specialist Nurse.  A MacMillan Nurse with VERY specialist training and skills, who works hand in glove with the three main prostate Oncologists at our hospital now.  As far as he knows - he IS the only one in the whole country - he actually runs some of the clinics and gets much more involved at a personal level with all new patients, more holistically, than any of the consultants can possibly do with the constraints placed on them.

He did a presentation and well, WOW.  Very detailed info presented at the right level for the patients (and their wives!)  What a lovely bloke - I said to him It's like a breath of fresh air listening to you speak - and explained how much I personally value specialist nursing skills - and if I'm any judge of character - he's really GOT it.  Very knowledgeable chap - and he's working his socks off - not only with his patients and consultants, but with the Urology consultants and trying to get the Urology clinic nurses more knowledgeable and helpful to their prostate cancer patients - and also spreading the word to other hospitals.

All the new patients now get access to him, his phone number and email address - and he also sees the 'watchful waiting' ones and the ones like Pete - following up after radiotherapy or like in Pauline's John's case - all the ongoing fallout - and can arrange blood tests and ensure the results get seen by consultants when they need to, and that the results are conveyed properly to the patient and they know upfront what happens next ...... recurrences, chemo - you name it, he can and does get involved, and does the 'hand holding'.  The only thing he can't do right now is prescribing, but that's in the pipeline too!   So if you happen to get in touch because say the plumbing's a bit awry - he can arrange all the necessary tests pdq and you're not hanging around forever waiting on someone without a name to bother to do something.

Fantastic.
Title: Re: Prostate Cancer News
Post by: Venomous on 06 March 2017, 06:11:20 PM
Glad you had a good appointment, its always nice to meet someone in medicine who seems to know what they're doing and how to do it without making patients lives harder.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 06 March 2017, 07:27:59 PM
He sounds like a real asset Sedge.  We have 2 specialist prostate cancer nurses who work in the urology department and we have always had their work mobile numbers.  Only had to ring once and lo and behold both were unavailable, but when we did speak to them they were absolutely fab.  I know they have been absolutely supportive with my friend's hubby who is  not able to have the op (too old and the cancer has spread a bit).

Glad to hear you have someone to support you, specially after all the shilly shallying around with Pete's appointment dates!
Title: Re: Prostate Cancer News
Post by: Paulines7 on 07 March 2017, 12:38:30 AM
How is Pete now, Sedge?  I hope all is well with him.

John has another appointment to treat his blood vessels tomorrow and hopefully, he will find out how many more treatments will be necessary.  They were weekly to begin with in October, then fortnightly and are now monthly.  The nurses who give him his treatment have really got to know him now because he went in for an x-ray last week for a chest infection and ran into two nurses, at two separate locations, who said hello to him using his forename.  He seems to know all the nurses in urology now and knows which ones can perform the procedure and not cause too much pain. 

I don't thing the cancer nurse that we saw at the very beginning in 2010 is still there.  Maybe though, she just deals with newly diagnosed patients.
Title: Re: Prostate Cancer News
Post by: Paulines7 on 08 March 2017, 10:50:54 AM
Good news.  John has finished his treatment at the hospital and the procedure seems to have worked.  Hopefully the blood vessels will not start bleeding again.  He had between 10 and 12 sessions altogether.  They insert a tube into the bladder and then using a syringe, they put in a chemical that is naturally found in the body.  It forms a coating over the damaged area.  This was caused when he had radiotherapy to the prostate area, five years ago. 

John was also told that the very slight rise in his PSA was probably due to this treatment and is nothing to worry about.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 08 March 2017, 03:07:53 PM
Phew... what a relief Pauline.  So glad you have this good news!
Title: Re: Prostate Cancer News
Post by: sedge on 08 March 2017, 04:03:09 PM
Ah - that's really good to hear Pauline - how lovely to have such positive news for a change.  What a relief.

XXX to you and John from me - and Man Hugs from Pete LOL
Title: Re: Prostate Cancer News
Post by: TerryJ on 09 March 2017, 10:39:15 AM
I stumbled across some prostate news online as per attached.
Title: Re: Prostate Cancer News
Post by: sedge on 09 March 2017, 01:34:41 PM
Thanks Terry - however none of that is actually new LOL

A hell of a lot more men still die WITH prostate cancer they never even suspected, than die of it.  But as the latter is still 10,000 chaps a year (in the UK - plus everywhere else worldwide) it's a significant burden on society as a whole, including obviously the NHS here.  Once it gets to metastases stage, there's a new treatment they're currently trying before resorting to 'normal' chemo and which is much better tolerated by the majority of men and maintains a much better QOL for years - and they hope more years but it isn't that old yet! -  as opposed to months.  It's a jab once a week for X weeks rather than an intravenous infusion too so much simpler easier and less time consuming to administer.

Things move on apace it seems - the opposite of diabetes research!
Title: Re: Prostate Cancer News
Post by: Alan on 10 March 2017, 09:23:58 PM
Last Thursday evening we were lucky enough to meet someone new - A Prostate Cancer Specialist Nurse.  A MacMillan Nurse with VERY specialist training and skills, who works hand in glove with the three main prostate Oncologists at our hospital now.  As far as he knows - he IS the only one in the whole country - he actually runs some of the clinics and gets much more involved at a personal level with all new patients, more holistically, than any of the consultants can possibly do with the constraints placed on them.

He did a presentation and well, WOW.  Very detailed info presented at the right level for the patients (and their wives!)  What a lovely bloke - I said to him It's like a breath of fresh air listening to you speak - and explained how much I personally value specialist nursing skills - and if I'm any judge of character - he's really GOT it.  Very knowledgeable chap - and he's working his socks off - not only with his patients and consultants, but with the Urology consultants and trying to get the Urology clinic nurses more knowledgeable and helpful to their prostate cancer patients - and also spreading the word to other hospitals.

All the new patients now get access to him, his phone number and email address - and he also sees the 'watchful waiting' ones and the ones like Pete - following up after radiotherapy or like in Pauline's John's case - all the ongoing fallout - and can arrange blood tests and ensure the results get seen by consultants when they need to, and that the results are conveyed properly to the patient and they know upfront what happens next ...... recurrences, chemo - you name it, he can and does get involved, and does the 'hand holding'.  The only thing he can't do right now is prescribing, but that's in the pipeline too!   So if you happen to get in touch because say the plumbing's a bit awry - he can arrange all the necessary tests pdq and you're not hanging around forever waiting on someone without a name to bother to do something.

Fantastic.

I can offer free accommodation in a lovely seaside village, excellent surf, quiet estuaries, good fishing by the creek, free sightseeing tours, if he'd like a holday down under.

Duodart appears to have improved the plumbing, PSA is good so at this stage aparently not cancer just 5x size :(.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 10 March 2017, 10:07:50 PM
Glad to hear all seems well Alan!
Title: Re: Prostate Cancer News
Post by: sedge on 11 March 2017, 01:23:35 PM
Hee hee - I had to look it up.  BPH is not a condition I know anything about apart from the obvious - it doesn't really get discussed so although you know when you Google that the flow problem doesn't automatically mean C - when your PSA indicates there's a chance of it, you do tend to concentrate your attention on the C - and of course, you don't qualify for Josh professionally cos you don't have C, so wouldn't even meet him.  But - I'm very glad you haven't !  and the C patients here don't want him to go to Oz just in case he likes it LOL
Title: Re: Prostate Cancer News
Post by: Alan on 11 March 2017, 10:55:55 PM
Glad to hear all seems well Alan!

Thanks. I just looked up all the possible side effects of DuoDart. A little uncomfortable about some of those; between the devil and the deep blue sea...
Title: Re: Prostate Cancer News
Post by: sedge on 12 March 2017, 12:49:13 AM
And you're not uncomfortable with what you are taking it to relieve?

It's a bit like most things Alan - which is worse - the complaint you need relief from - or the possible side effects of any treatment for it?

Blame the designer of a blokes urinary plumbing system to go smack through the middle of his reproductive bits - ladies were designed a good deal more sensibly really!  But there again, the designer had probably had time to reflect on the daft mistakes he made with the prototype, by the time he got round to us!
Title: Re: Prostate Cancer News
Post by: Pattidevans on 12 March 2017, 10:36:07 AM
You have a lovely turn of phrase Sedge.


I just had a google of Duodart, I see it is not to be used for women or children.  Wonder why not?
Title: Re: Prostate Cancer News
Post by: Alan on 13 March 2017, 01:09:37 AM
And you're not uncomfortable with what you are taking it to relieve?

I am, but it's all a matter of whether the cure is worse than the condition. My main symptom was the typical one (stop here if TMI is a problem :) ): restricted, slow and occasionally painful peeing.

Quote
It's a bit like most things Alan - which is worse - the complaint you need relief from - or the possible side effects of any treatment for it?

These are the cause for my concern:
Quote
Dutasteride Side effects  (https://pharmacybook.net/dutasteride/)Dutasteride may cause the following side effects:
 
  • Heart failure
  • Swelling of the eyelids
  • Skin rash
  • Impotence, decreased libido, and gynecomastia (breast enlargement)[/l][/l]
Tamsulosin (http://www.mayoclinic.org/drugs-supplements/tamsulosin-oral-route/side-effects/drg-20068275) is even less cheerful:

Quote
Side Effects
Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.
Check with your doctor immediately if any of the following side effects occur:
 More common
  • Cough or hoarseness
  • fever or chills
  • lower back or side pain
  • painful or difficult urination
Less common
  • Chest pain
Rare
  • Dizziness or lightheadedness
  • dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
  • fainting
  • feeling of constant movement of self or surroundings
  • painful or prolonged erection of the penis
  • sensation of spinning
Incidence not known
  • Blistering, peeling, or loosening of the skin
  • blurred vision
  • confusion
  • diarrhea
  • difficult or labored breathing
  • fast, pounding, or irregular heartbeat or pulse
  • itching
  • joint or muscle pain
  • large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
  • red skin lesions, often with a purple center
  • red, irritated eyes
  • sore throat
  • sores, ulcers, or white spots in the mouth or on the lips
  • sweating
  • tightness of the chest
  • unusual tiredness or weakness
Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
 More common
  • Abnormal ejaculation
  • back pain
  • body aches or pain
  • congestion
  • headache
  • lack or loss of strength
  • sneezing
  • stuffy or runny nose
  • tender, swollen glands in the neck
  • trouble swallowing
  • voice changes
Less common
  • Decreased interest in sexual intercourse
  • decreased sexual drive or performance
  • drowsiness
  • inability to have or keep an erection
  • increased cough
  • loss in sexual ability, desire, drive, or performance
  • nausea
  • pain or tenderness around the eyes and cheekbones
  • sleepiness or unusual drowsiness
  • tooth disorder
  • trouble sleeping
Incidence not known
  • Constipation
  • hives or welts, skin rash
  • redness of the skin
  • vomiting
Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.
Quote
Blame the designer of a blokes urinary plumbing system to go smack through the middle of his reproductive bits - ladies were designed a good deal more sensibly really!  But there again, the designer had probably had time to reflect on the daft mistakes he made with the prototype, by the time he got round to us!

Too true :)[/list]
Title: Re: Prostate Cancer News
Post by: Pattidevans on 13 March 2017, 09:51:57 AM
As an alternative to taking some of these horrid drugs don't some chaps have a TURPS procedure aka "a bore"?
Title: Re: Prostate Cancer News
Post by: sedge on 13 March 2017, 11:58:44 AM
Yes Patti.  Possible side effects of TURPS are

Bladder injury.
Bleeding.
Blood in the urine after surgery.
Electrolyte abnormalities.
Infection.
Loss of erections.
Painful or difficult urination.
Retrograde ejaculation (when ejaculate goes into the bladder and not out the penis)

LOL

Anything involving that part of a bloke is risky.  End of story - you makes yer choice and if you have to pay for it you have to accept that.  However - there is still a fighting chance that you won't have to pay.

So - travel hopefully is my motto !
Title: Re: Prostate Cancer News
Post by: sedge on 20 April 2017, 05:41:20 PM
On the brighter side today LOL

Pete's January appointment with the surgeon was yesterday - his PSA is still 'undetectable'.  Great !
Title: Re: Prostate Cancer News
Post by: Pattidevans on 20 April 2017, 08:33:35 PM
What lovely news for the pair of you!  So happy for you too!

J had his 2nd 3 month review earlier this month and ditto... undetectable! We were very happy and now he goes to 6 monthly checks.  :)
Title: Re: Prostate Cancer News
Post by: sedge on 20 April 2017, 09:07:47 PM
Yay!  Good they're both - or rather all three with John - doing well at the mo.

Long may this continue for all of them.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 20 April 2017, 10:32:45 PM
Totally agree Sedge!  Best love to Pete!
Title: Re: Prostate Cancer News
Post by: Paulines7 on 21 April 2017, 11:08:43 AM
I am very pleased to hear that Pete and Julian's PSA are again undetectable.  This is such good news.

John still hasn't had any problems with bleeding since his treatment to heal the blood vessels and you can imagine how pleased we are about that.  To think that the consultant he was under up to September last year wasn't going to do anything about it despite the fact that John was in and out of hospital for two or three days having to have the clots flushed out..... a very painful process.   Asking for a second opinion really paid off.
Title: Re: Prostate Cancer News
Post by: sedge on 21 April 2017, 11:50:00 AM
Well Pauline, someone we know from a local support group said to us that Pete shouldn't have left having his blood test till now, he should have gone and had it done in January.  But the only thing is, to find out the result he'd still have had to wait till he saw the consultant to get the flippin result since it wasn't from the GP.  Or he could have made a GP appointment in 5 weeks time, to get a GP PSA blood test form, then another appt to get the blood taken then have to remember to ring in the weekly 2 hour slot the following week to get the damned answer.

It's really SUCH a lot of hassle to achieve such a simple thing - that it was so much easier just to leave it and hope for the best.  I mean if it had shot up, he STILL wouldn't have been by the hospital any quicker.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 21 April 2017, 12:57:04 PM
Pauline

Very pleased to hear John's news.

Sedge

Your area sounds horrendous with waiting times and GP's appointments.  I am very glad it's not like that here.
Title: Re: Prostate Cancer News
Post by: Paulines7 on 22 April 2017, 09:57:01 AM
Well Pauline, someone we know from a local support group said to us that Pete shouldn't have left having his blood test till now, he should have gone and had it done in January.  But the only thing is, to find out the result he'd still have had to wait till he saw the consultant to get the flippin result since it wasn't from the GP.  Or he could have made a GP appointment in 5 weeks time, to get a GP PSA blood test form, then another appt to get the blood taken then have to remember to ring in the weekly 2 hour slot the following week to get the damned answer.

It's really SUCH a lot of hassle to achieve such a simple thing - that it was so much easier just to leave it and hope for the best.  I mean if it had shot up, he STILL wouldn't have been by the hospital any quicker.

Another problem to watch out for when having a PSA test at the GP surgery, is that they can say the result is "normal" when it is in fact high for a man who no longer has his prostate!  This happened to John.  When he rang for the result, he was told by the receptionist that a GP had marked his notes "normal" and filed them away. John insisted he was given the actual reading and it was high for someone in his situation.  When he pointed out the error to the receptionist, she arranged for a GP to call him.  He was then referred urgently to the hospital consultant who started him on hormone treatment straight away.
Title: Re: Prostate Cancer News
Post by: sedge on 22 April 2017, 11:38:06 AM
Well yeah Pauline - and it is precisely because of this happening (the curse of the receptionist) that our surgery have this 2 hour slot where you ring for results - the person manning the line needs to understand what it is that the caller really wants/needs to know - and actually to have sufficient standing at the surgery to be able to convey any queries to the correct person, and make sure the correct further action is taken.

A receptionist wouldn't understand why a 'normal' result ever could not be acceptable to a patient.  And with a good few of em you're wasting your time trying to explain - they are simply, not whatsoever interested.

Funnily enough the lady that womans the results phone - used to be one of the reception staff LOL  But when they re-organised they made sure her talents weren;t wasted.  She also deals with complaints up to a certain level.  She can be very firm indeed when people get belligerent!  She's lovely!  LOL
Title: Re: Prostate Cancer News
Post by: Liam on 22 April 2017, 12:38:01 PM
Glad to hear how well all the blokes are doing right now. Guess that is just proof of them saying Prostate cancer is one of the most treatable if caught early. As diabetics I guess we are used to having to ask for the numbers from test results. I'm sure we have all come up against a receptionist that just wants to say 'normal' or 'within range' rather than give the numbers. I guess on the other side of that, you don't want a receptionist to say to someone 'oh your fasting BG test, has been marked type II diabetes', should be someone that knows what they are talking about saying that to someone.
Title: Re: Prostate Cancer News
Post by: Idreamofchocolate on 22 April 2017, 12:49:43 PM
Just catching up with some threads, sorry I'm late to this one. I have to say I'm surprised to read how many people on the forum who are affected by prostrate trouble. Patti, Sedge and Pauline with hubbies who are having problems, and Alan - are there more I have missed?


My husband had tests a couple of years ago because he was finding it difficult to wee. I had to cajole him into going to a weekend general 'invitation' to anyone for assessment at the hospital, and he only went then because his brother in law went too. A 'safety in numbers' thing. All was deemed OK, but he still doesn't go to the toilet properly in my opinion. I don't think I've heard him pass water normally for ages now; he's constantly straining. But he won't be moved and refuses to be tested again. If it's not prostate enlargement, what could cause the difficulty in passing water?


I'm so pleased that all is going well for the four of you, and I hope it long continues (http://yoursmiles.org/msmile/pozitive/m1233.gif) (http://yoursmiles.org/m-pozitive.php)
Title: Re: Prostate Cancer News
Post by: Pattidevans on 23 April 2017, 09:04:18 AM
Just catching up with some threads, sorry I'm late to this one. I have to say I'm surprised to read how many people on the forum who are affected by prostrate trouble. Patti, Sedge and Pauline with hubbies who are having problems, and Alan - are there more I have missed?


Yes, Himtoo has it, not been seen since he went off to the USA to visit his parents.  He's going down the "watch and wait" route.  Funnily enough there were 5 blokes at the DSF meet and 4 of the 5 blokes were affected, though we did not know about Julian until 2 days later when the GP rang us whilst we were on our way home.


Quote

My husband had tests a couple of years ago because he was finding it difficult to wee. I had to cajole him into going to a weekend general 'invitation' to anyone for assessment at the hospital, and he only went then because his brother in law went too. A 'safety in numbers' thing. All was deemed OK, but he still doesn't go to the toilet properly in my opinion. I don't think I've heard him pass water normally for ages now; he's constantly straining. But he won't be moved and refuses to be tested again. If it's not prostate enlargement, what could cause the difficulty in passing water?


I'm so pleased that all is going well for the four of you, and I hope it long continues (http://yoursmiles.org/msmile/pozitive/m1233.gif) (http://yoursmiles.org/m-pozitive.php)


The problem is often the interpretation of "normal" Maureen.  When Julian had a test 5 years ago he was told "normal" as his PSA was 5.9.  Had it been 6 it would have been abnormal - so really he should have at least tested annually.   When it was finally diagnosed his PSA was 13.  Having said this many men die with prostate cancer and have had it years without knowing, but they die of other, unrelated causes.  However, if it was my hubby I should be concerned f he was having waterworks problems.  It could just be benign prostate enlargement but it must be uncomfortable for him.  Can you persuade him to have another check?
Title: Re: Prostate Cancer News
Post by: sedge 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!
Title: Re: Prostate Cancer News
Post by: sedge 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!
Title: Re: Prostate Cancer News
Post by: Paulines7 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.
Title: Re: Prostate Cancer News
Post by: sedge 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.
Title: Re: Prostate Cancer News
Post by: GrammaBear 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. 
Title: Re: Prostate Cancer News
Post by: Pattidevans 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?
Title: Re: Prostate Cancer News
Post by: GrammaBear 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.
Title: Re: Prostate Cancer News
Post by: Pattidevans 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.
Title: Re: Prostate Cancer News
Post by: sedge 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.
Title: Re: Prostate Cancer News
Post by: GrammaBear 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.
Title: Re: Prostate Cancer News
Post by: sedge 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.
Title: Re: Prostate Cancer News
Post by: Pattidevans 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 (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!
Title: Re: Prostate Cancer News
Post by: Venomous 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 (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.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 21 May 2017, 05:02:13 PM
Yes, I know... my friend is beside herself!
Title: Re: Prostate Cancer News
Post by: sedge 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.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 21 May 2017, 10:56:19 PM
I know Sedge.

I am worried about my friend... she has been married over 40 years, been with hubby since 17 years old. 
Title: Re: Prostate Cancer News
Post by: himtoo on 22 May 2017, 09:53:35 PM
thought I would update

follow up appointment today-- latest psa = 4.9
consultant recommending a further 4 months of watch and wait

happy with that

best wishes to pete and Julian xxxx
Title: Re: Prostate Cancer News
Post by: sedge on 22 May 2017, 10:28:35 PM
Paul - you know whilst they are 'watching and waiting' - how often do they check it hasn't morphed and spread, by doing another MRI scan? (and if they don't do it, how will they and you know that it hasn't?)  I'm asking purely because I don't know, and wondered - not for any other reason.
Title: Re: Prostate Cancer News
Post by: Paulines7 on 23 May 2017, 10:00:49 AM
Kathy,  I hope the result of your husband's ultrasound is clear.  I assume you will get the results some time this week?

The  PSA number may not be helpful as your husband had a TURP procedure but you could ask the urologist for the exact figure.  This website explains the PSA test: http://www.pctrf.org/prostate-specific-antigen-psa/

 
Title: Re: Prostate Cancer News
Post by: himtoo on 24 May 2017, 09:05:57 PM
hi sedge

-- when I go to my next appt in 4/5 months time -- the consultant said another MRI would be scheduled then ( so approx. 1 per year )
Title: Re: Prostate Cancer News
Post by: sedge on 24 May 2017, 09:58:13 PM
That's good to know, Paul !
Title: Re: Prostate Cancer News
Post by: Pattidevans on 24 May 2017, 10:13:59 PM
Good luck Paul, hope all goes well for you!

How was your trip to north America?
Title: Re: Prostate Cancer News
Post by: GrammaBear on 25 May 2017, 02:52:30 AM
Kathy,  I hope the result of your husband's ultrasound is clear.  I assume you will get the results some time this week?

The  PSA number may not be helpful as your husband had a TURP procedure but you could ask the urologist for the exact figure.  This website explains the PSA test: http://www.pctrf.org/prostate-specific-antigen-psa/

 

Pauline - Thank you for the website link.  It explains a lot more than the first Urologist ever thought of doing.  Yes, my husband will be seeing his present Urologist this Friday, May 26.  He is a bit nervous as I am too.  We're hoping for an 'all clear'.
Title: Re: Prostate Cancer News
Post by: GrammaBear on 26 May 2017, 08:46:39 PM
I went with my husband to his appointment with the Urologist today.  The Urologist studied the images taken by the ultrasound and said that it is a harmless condition requiring no further treatment, unless the pain that he had earlier returns.  It was his opinion that a man should have the PSA at least once every year or two as long as the psa numbers are not 'out of range'.  Both of us left the office very much relieved and grateful for good news.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 26 May 2017, 09:47:12 PM
Very very pleased to hear your news Kathy!
Title: Re: Prostate Cancer News
Post by: Paulines7 on 28 May 2017, 10:10:25 AM
I am very pleased that it wasn't anything more serious, Kathy.
Title: Re: Prostate Cancer News
Post by: Venomous on 28 May 2017, 09:44:57 PM
I went with my husband to his appointment with the Urologist today.  The Urologist studied the images taken by the ultrasound and said that it is a harmless condition requiring no further treatment, unless the pain that he had earlier returns.  It was his opinion that a man should have the PSA at least once every year or two as long as the psa numbers are not 'out of range'.  Both of us left the office very much relieved and grateful for good news.

Reallly pleased for you both!
Title: Re: Prostate Cancer News
Post by: GrammaBear on 28 May 2017, 11:55:20 PM
Thank you for your good wishes and taking time to post them.  When we left the doctor's office, my hubby turned to me and said "Well, now we can sleep better tonight because I was worried last night that I would get bad news today."  We are truly blessed.
Title: Re: Prostate Cancer News
Post by: Pattidevans on 29 May 2017, 12:09:38 AM
How lovely...
Title: Re: Prostate Cancer News
Post by: sedge on 31 May 2017, 02:35:15 PM
Just - Good!
Title: Re: Prostate Cancer News
Post by: Alan on 07 June 2017, 01:58:16 AM
Just catching up with some threads, sorry I'm late to this one. I have to say I'm surprised to read how many people on the forum who are affected by prostrate trouble. Patti, Sedge and Pauline with hubbies who are having problems, and Alan - are there more I have missed?

My husband had tests a couple of years ago because he was finding it difficult to wee. I had to cajole him into going to a weekend general 'invitation' to anyone for assessment at the hospital, and he only went then because his brother in law went too. A 'safety in numbers' thing. All was deemed OK, but he still doesn't go to the toilet properly in my opinion. I don't think I've heard him pass water normally for ages now; he's constantly straining. But he won't be moved and refuses to be tested again. If it's not prostate enlargement, what could cause the difficulty in passing water?
I'm so pleased that all is going well for the four of you, and I hope it long continues (http://yoursmiles.org/msmile/pozitive/m1233.gif) (http://yoursmiles.org/m-pozitive.php)

It may depend on what tests were performed. My PSA is OK (so far) but my increasing difficulty with urination caused my doctor to send me for an ultrasound. That was how my enlargement (5X) was discovered. The doc then prescribed DuoDart (https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&cad=rja&uact=8&ved=0ahUKEwjL7M_4wqrUAhUKKZQKHTwqCHMQFgg-MAQ&url=http%3A%2F%2Fwww.gsk.com.au%2Fresources.ashx%2Fprescriptionmedicinesproductschilddatadownloads%2F1795%2FFile%2FAD7218058B17215BDB2D1C565B4EE60A%2FDuodart_PI_clean.pdf&usg=AFQjCNESCMLmQYEhL1atIN_upD0TbSdFNQ&sig2=zIjFD3VX9Rt2qiX23quGfw). It has been effective for the problem and a later ultrasound showed almost back to normal size. However, there are some possible side effects, including libido. I will be discussing changing to one of the two combination meds (Dutasteride or Tamsulosin hydrochloride) with my doc at my next visit.

Great to see the good news for the other blokes!