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Dr Referals

User
Posted 06 Jan 2017 at 13:09
Hi All, since my father died of PC I've had regular DRE and PSA tests every 4 years or so (I'm 58) and every thing was fine till this latest test. This time my blood count came back with 3.9 which I know is still low to many I've seen oh here. When I ,phoned up for the result the Dr wasn't concerned and said to make an appointment if any symptoms started. My wife pushed me to go and see the Dr again for a chat at the receptionists I decided to see the nurse practitioner instead. During the appointment she went through the symptoms etc and she was going to refer me to the urology consultant. That was getting on for 7 weeks now. Yesterday a phoned the Dr surgery to see wat was going on as I hadn't heard beck from the hospital. Surgery said they would call me back later that day which they didn't so this morning I called in to the surgery to find out what was going on. The receptionist chased up my referral with the urology dept to see why I'd not had any feed back from them. The urology dep said that they had got the letter from the NP but hadn't actioned on it? The surgery receptionist urged me to call the urology dept and push the matter of an appointment. When I called up the dept I was basically fobbed off where they stated that one of the consultants had left and had not yet been replaced and the secretary that dealt with appointments was off and they didn't know when she would be back also the woman I was talking to on the phone which I thought was the urogical dept actually said that she as the in that dept at all. I was then advised to go back to my Dr and basically start the whole process of a referral again. When I phoned the Dr surgery to see if they could help in pushing the matter of a reffersl appointment they said that they would do their best.

My wife mentioned that if it had been a smear test or breast test that was abnormal then she would be referred to a consultant with out delay.

Has anyone else faced such difficult.

User
Posted 06 Jan 2017 at 18:22

Hi

With your family history there shouldn't have been a problem getting a referral in the first place - many of us here haven't presented with "symptoms" but have subsequently discovered we had PCa. FYI my last 3 PSAs have ranged from 3.3 to 3.7.

I agree with Sandra that you should try and find another hospital. It's worth researching anyway so that you can stay with the same team if required. I know sometimes we don't have a choice. I would also complain to the hospital because unless a complaint is registered, it could happen to more people. 

Don't give up on this and your doctor should at least offer a DRE if you are going back for another referral.

Good luck.

Chris

User
Posted 06 Jan 2017 at 20:13

It sounds to me that you have been referred as a routine urology case rather than as a potential cancer referral. Ask the GP to re-refer via the cancer pathway if that is the case.

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

User
Posted 20 Feb 2017 at 08:06
Hi All,

I went for my appointment a little over two weeks ago. It involved an ultrasound scan, urine sample, weight, BP, DRE and a chat with the consultant. With such a low PSA he wasn't too concernd and it was thought that another blood test in 3 months and one at 6 months to monitor the PSA level before thinking about a biopsy if required. So we will see.

User
Posted 20 Feb 2017 at 14:15

Originally Posted by: Online Community Member
You could ask for a second opinion and a MpMRI scan.

My GP said he would refer even if 0.1 above norm (my husband had a PSA of 3.56

I will bounce the freedom of info act list that Prostate cancer UK have compiled.

A clear on the MpMRI of course is no guarantee but I would probably want to know it was indeed clear.

The best imaging equipment is apparently the 3 tesla machine..

Thanks

Clare

 

Sorry Claret but how is that helpful? He was referred by his GP, as your GP said he would do. He has seen his consultant who has many years of training and has far more detail of his specific case than you can ever have, they have discussed and come up with a strategy. Undermining that process without all the facts is only likely to cause undue anxiety.  

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

User
Posted 04 Jun 2017 at 16:30
Yes, I was worried it may have increased. My good fortune tho that it was back to my normal level.
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User
Posted 06 Jan 2017 at 18:02

Hello Dp_paul and welcome to the site (although I see you have been a member since April 2014

If it was my husband I would be back down the surgery making an appointment with the GP and asking for another referral but to a different hospital in the hope that they had enough urologists.

It might be helpful if you could post your original PSAs so that members could see how it has progressed.

Hopefully other members will be along to advise you though.

Best Wishes

Sandra

 

Edited by member 06 Jan 2017 at 18:03  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 06 Jan 2017 at 18:22

Hi

With your family history there shouldn't have been a problem getting a referral in the first place - many of us here haven't presented with "symptoms" but have subsequently discovered we had PCa. FYI my last 3 PSAs have ranged from 3.3 to 3.7.

I agree with Sandra that you should try and find another hospital. It's worth researching anyway so that you can stay with the same team if required. I know sometimes we don't have a choice. I would also complain to the hospital because unless a complaint is registered, it could happen to more people. 

Don't give up on this and your doctor should at least offer a DRE if you are going back for another referral.

Good luck.

Chris

User
Posted 06 Jan 2017 at 20:13

It sounds to me that you have been referred as a routine urology case rather than as a potential cancer referral. Ask the GP to re-refer via the cancer pathway if that is the case.

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

User
Posted 06 Jan 2017 at 22:36
Hi David

Please visit my profile. Are you able as Sandra requests post date and values.

I was asymptomatic and DRE normal. My brother just been dx PSA 3.57. He is 69.

I controlled the system in many ways , although I requested tests every 2 years. So I had put myself on AS

although I wouldn't have known it was called that. I thought erroneously that if anything untoward was going on I would start having 1 or maybe 2 symptoms at least. Everything in full working order. Just a safety net re. PSA test as never overly dwelt on the fact I might get PCa and never needed to visit GP as fit and healthy. In hindight I might have pushed for biopsy sooner. I had an understanding and pragmatic GP.

The key as I'm sure you know is rate of increase as a good indicator.

My brother who has just been dx had a

mpMRI some months before biopsy. He lives in Australia

.

Edited by member 06 Jan 2017 at 22:41  | Reason: Not specified

User
Posted 07 Jan 2017 at 00:26

A man shouldn't have to chase like this but the need is becoming more frequent. In the circumstances, I would ask your GP to refer you to another hospital having first checked that there was a better chance of an early appointment there. You could also lodge a complaint with PALS in the hope that the Urology Department at your present hospital might be better supported.

It is a time of the year when hospitals and the NHS already under severe pressure are are now reported by The Red Cross as being in crisis. People are being turned away from A&E and according to news on TV 2 people have died in corridors after waiting many hours to be given beds. (One died of a heart attack after waiting over 35 hours it was reported.)

UK Governments for years have been made aware of the growing problem posed by an expanding and ageing population resulting in increased demands on the NHS and appropriate care for the elderly but have not had the will to properly fund and resource this need. This is becoming a major issue for the Government, who cannot allow this to continue to deteriorate.

Barry
User
Posted 07 Jan 2017 at 16:13
Dp-Paul

I'd ask for a two week referral to a different hospital. If they refuse, I'd ask them to set out in writing why they believe you don't warrant a two week referral.

I don't know enough about PCa - maybe the PSA reading in relation to your age causes them less concern. But then there is the family history.

Don't be stroppy, but be boldly assertive.

I'm sorry to read of your experience. Since I started this journey, I've been shocked with just how quickly the NHS can move. Most of my appointments have been arranged over the telephone. And the appointment letters usually arrive after the appointment has taken place.

Walter

User
Posted 07 Jan 2017 at 16:58

It may be that the hospital is being blamed when they have done nothing wrong. The nurse practitioner made the referral to urology and my understanding is that while they can make referrals for routine hospital appointments, they cannot make referrals on the cancer pathway. important to find out whether the wrong type of referral has been made rather than simply assume the hospital is failing somehow.

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

User
Posted 11 Jan 2017 at 06:54

Many thanks to everyone for the replies. I had a phone call from my GP surgery yesterday to say that the have been back in touch with the urology dept to chase up and expedite the referral. So hopefully I will hear something soon.
My PSA results up until this last one have always been below 3, this latest one was 3.9 so not high but an upward trend.
As you know life is complicated and as I work on a ship which can be many months at sea it's not easy to return back home as most of the time a helicopter would be required or we are out of reach of all recovery methods. For this reason I'm trying to organise everything whilst I'm home on leave.
I will pop in to the surgery to ask about this "cancer pathway"
Once again thanks for your support

Paul

User
Posted 18 Jan 2017 at 17:09

Hi all, finally my appointment to see the consultant has come thru for 2 weeks time (2nd Feb) as this is the initial consult I'm just wondering what this will entail. All it said on the appointment letter was a urine sample would be taken. Any info on what the day will likely be ilke ie blood tests, DRE, scans etc, would help.

User
Posted 18 Jan 2017 at 19:14

Hi Paul

From my experience the consultant will look at history, perhaps do a DRE, but then recommend next steps. Those next steps could be another PSA, biopsy, MRI etc, but not on the same day - you would likely get appointments for the following weeks.

Good luck

Chris

User
Posted 20 Feb 2017 at 08:06
Hi All,

I went for my appointment a little over two weeks ago. It involved an ultrasound scan, urine sample, weight, BP, DRE and a chat with the consultant. With such a low PSA he wasn't too concernd and it was thought that another blood test in 3 months and one at 6 months to monitor the PSA level before thinking about a biopsy if required. So we will see.

User
Posted 20 Feb 2017 at 10:04
You could ask for a second opinion and a MpMRI scan.

My GP said he would refer even if 0.1 above norm ( my husband had a PSA of 3.56

I will bounce the freedom of info act list that Prostate cancer UK have compiled.

A clear on the MpMRI of course is no guarantee but I would probably want to know it was indeed clear.

The best imaging equipment is apparently the 3 tesla machine..

Thanks

Clare

User
Posted 20 Feb 2017 at 11:13
Hi Paul

I've updated my profile as brother has just been dx.

Worth a look

I would say couple of issues. Update wife if you haven't that psa tests don't relate to other cancer tests. . Ie only a biopsy will give certainty.

I can understand concern as my wife for over 30 years would know my results and obviously was key in my decision to undertake biopsy. ..ie increase in psa value in short time.

Re. Yourself. Do as advised and ensure you annual tests. Basically as long as no symptoms arise chill and enjoy life.

Having 3 and 6 months tests will give you even more comfort.

That's my take. I was told I probably had pca for at least 7 yrs..

The other option my brother took was detailed mpMRI.. as clare has posted.

He paid and lives in Australia. . You will get PI-RAD 'coding' from what is found etc .. have a Google.

His dilemma was do you then have biopsy. . He had PI-RAD 4.

He had biopsy and starts rt in a few months.

The reason I've posted is although we are brothers .. Both Gleason 7.

His psa was 3.57 and symptomatic

He is 69

I was 59 at dx and psa had moved to 7.5 I was asymptomatic

Are you unduly anxious or not ?

Perhaps it's only me. However instinctively you tend to know when to move to biopsy. . Can't explain why..

I was concerned my brother had left it about 12 months too late. However his consultant and gp. Where ok with his mpMRI outputs.

After holidaying over with us last summer and chewing it all over he opted for his first and only biopsy.

Gordon

Edited by member 20 Feb 2017 at 11:16  | Reason: Not specified

User
Posted 20 Feb 2017 at 14:15

Originally Posted by: Online Community Member
You could ask for a second opinion and a MpMRI scan.

My GP said he would refer even if 0.1 above norm (my husband had a PSA of 3.56

I will bounce the freedom of info act list that Prostate cancer UK have compiled.

A clear on the MpMRI of course is no guarantee but I would probably want to know it was indeed clear.

The best imaging equipment is apparently the 3 tesla machine..

Thanks

Clare

 

Sorry Claret but how is that helpful? He was referred by his GP, as your GP said he would do. He has seen his consultant who has many years of training and has far more detail of his specific case than you can ever have, they have discussed and come up with a strategy. Undermining that process without all the facts is only likely to cause undue anxiety.  

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

User
Posted 20 Feb 2017 at 17:55

I wasn't giving a second opinion Lynn I was suggesting that asking for a second opinion is always an option.

I also said 'You could' ...in no way was I saying I was an expert.

I was trying to be helpful by flagging the Prostate Cancer UK research.

I clearly failed to be helpful so I will be withdrawing from using this community any further.

I wish all members best luck with their journeys that we all wish we were not taking.

User
Posted 20 Feb 2017 at 18:11

I hope you don't leave the site Claret. I just worried that your response would cause anxiety to someone who seems okay with the care path he and his specialist have agreed.

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

User
Posted 02 Jun 2017 at 08:34

Hi all, just an update.
Had another blood test, 3 months after my initial appointment with the consultant. Such a relief it cam back as 2.6 down from the 3.9 it was 6 months or so back. I'm due for another blood test in July & my 2nd appointment with the consultant.
Paul

User
Posted 02 Jun 2017 at 11:41

Going in the right direction anyway Paul.

Good luck

****

We can't control the winds - but we can adjust our sails
User
Posted 04 Jun 2017 at 16:30
Yes, I was worried it may have increased. My good fortune tho that it was back to my normal level.
 
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