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Telephone consultation

User
Posted 25 Dec 2020 at 08:11

I understand that.... I'm just trying to summarise the length of time it takes between now and having my appointment. Surely if it was urgent I would have had an appointment sooner. I'm just trying to cling onto any positivity I can get

 

User
Posted 25 Dec 2020 at 17:50
It doesn't usually work like that. It varies from hospital to hospital but commonly, an appointment is automatically generated for 3 or 4 weeks after the biopsy - in between times, the radiographers assess the images, the pathologists are looking at the biopsy samples and then all the data is assessed and discussed at a multi-disciplinary team meeting. I guess it is possible that your results have been discussed at the MDT but more likely that they haven't met yet and it will be early January before they do.

Most NHS trusts wouldn't have the capacity to bring appointments forward if bad news or push back if good news ... it is all designed around how often the MDT meets. Also, prostate cancer diagnoses are generally not considered urgent.

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

User
Posted 25 Dec 2020 at 18:51
Although within the NHS, different hospitals can work in different ways and some are more busy than others. Twice now I have received an appointment to discuss the result of an MRI even when I have not even been given a date to have the scan. Cart and Horse come to mind! You just can't read too much into hospital times and appointments.
Barry
User
Posted 26 Dec 2020 at 09:47
Hi Peter,

It can be a worrisome time, but if the system is working then the correct diagnostics will have to happen, but maybe not in the right order; the first thing I had was a full body scan as my PSA was 22.1, without speaking to anyone other than a radiologist about the nastiness they were looking for. That is NOT the case for you, from the information supplied you are better off than I am.

Find out the details of your urology clinic from the letter, you should have details of the specialist nursing team and speak to them directly to talk.Things may be moving quickly and you may not have been told as COVID and Christmas etc have loused things up and may not answer the phone today unfortunately. The nurses will be able to talk, consultants don’t have the time to in my experience so far. Clinic timetables will be scheduled and patients will fit into that cycle.

Positivity you can get hopefully from your family and friends, PC isn’t like a SCI-FI monster were you transform in seconds into an alien lump, it usually moves slowly and silently that’s why it’s a B’strd?

You are aware of it now, learn about it and don’t be afraid of it; humans have knives, chemical warfare and x-ray guns and knowledge; it should be afraid of us?

Buzzy

User
Posted 26 Dec 2020 at 13:02

Hi 

I just wanted to reach out and tell you that with my father, we have just been through the biopsy - phone call consultation - diagnosis - contact from Macmillan nurse process.

It started from his latest PSA test in Oct which was 5.3 which lead to MRI scan (Nov) showing a small shadow on his prostate leading to a biopsy.

My father had his biopsy on 11th Dec. He was told at the time it would take roughly 10 days for them to cultivate the cells, assess his case and provide feedback. 

Same as yourself my Dad received an email with an appointment letter for 23rd Dec for a telephone consultation. On the 23rd he was given his diagnosis and treatment plan. He had a follow up telephone call with a macmillan nurse the next day. My Dad's treatment (hormone therapy in his case), started Christmas Eve.

The date of your telephone consultation will depend on the availability of the consultant too. I doubt it reflects the nature of your case, if that helps. 

It has been a rollercoaster of a journey since Dad was told he needed a biopsy up until the telephone consultation. But now we know the plan ahead of us it puts us at ease somewhat. However the worry of the treatment and associated side effects brings a another bunch of stress. Currently as a family we are taking each day at a time.

In summary I wanted to say that you are in good hands. Try and find ways to manage the anxiety and stress. Stay in touch with family and friends which I know is difficult in this pandemic. Talking about how you are feeling will help.

User
Posted 04 Jan 2021 at 16:11
Many thanks for all your help and advice and taking the time to reply. It is all very much appreciated and does certainly help with the worry and the anxiety.

I have attempted/tried to put it all behind me for the Christmas period for the sake of both myself and my family. Now the New Year is upon us, I'm just now counting down the days now until my telephone consultation on the 22nd January and trying to get on with life without worrying constantly.

I have started to talk about it more with family and friends and it does help. When I first went down this road way back in March I didn't really discuss it as I preferred to bury my head in the sand and not admit what was going on. I am now trying to accept it all more and prepare myself for whatever the results may bring.

Thank you all and I'll update once I know the results from the Biopsy.

User
Posted 21 Jan 2021 at 17:46
Well tomorrow at 3:45 is the day of my telephone consultation. It seems a long time since the biopsy in December. Going to be a long sleepless night tonight.

Just wondered if anybody had any suggestions for questions that I may need to ask. Any comments or thoughts on this would be greatly appreciated

Thank you in advance

User
Posted 21 Jan 2021 at 20:10
Thoughts ? Your psa is low in the grand scheme of things , yes talking about it helps , I had friends who been thru the treatment which helped immensely and gave confidence on the journey , my psa was6.4 all the professionals gave me confidence on the treatment plan . In the end , I am 2 yrs after treatment going ok , all my friends are ok as well .
User
Posted 21 Jan 2021 at 23:00

Many thanks, appreciate your comments

 

User
Posted 22 Jan 2021 at 08:29

Many thanks for taking the time to chat ....  My fingers are crossed that your dad makes a full recovery

User
Posted 24 Jan 2021 at 22:34

Update from telephone consultation with the consultant.

I'm absolutely gobsmacked I haven't got any traces of cancer in the prostate from the biopsy. I really had prepared myself for bad news so wasn't expecting this..... I am overjoyed, pleased and relieved.

However he did say that there was abnormal cells that they will need to keep an eye on. I will have to have a PSA blood check every six months. he then went on to say that if my PSA blood check goes above 10 then I would have to have a further biopsy.

I am a little confused as i still have the 2.5 cm tumour and what this means and also he didn't elaborate on the abnormal cells. Sadly he wasn't the easiest of consultants to talk too.so I decided rather than continue to ask him questions I will probably speak to my own doctor in the next few days, as hopefully by that time they should have the results and hopefully they'll be able to discuss it in better detail and give me some clarification on a few questions I would like to have askedbut didn't feel able to.

Thank you once again for everybody's help and advice during this difficult and worrying journey. It has certainly been a godsend and helped me to cope much better getting advice from people who have been through the same.

 

 

 

User
Posted 24 Jan 2021 at 22:51

You don't have a 2.2cm tumour - your MRI scan showed a 2.2cm lesion which is a different thing. The lesion could have been infection or bruising - as some of us posted in Nov / December an MRI can't diagnose cancer, it can only identify areas of concern that need further assessment. It seems from your phone call that all the biopsy cores removed from the suspect area were non-cancerous so infection may be the most likely explanation now.

The abnormal cells are referred to as PIN - it is a sort of pre-cancerous state ... in some men, these develop into prostate cancer in the future but certainly not always the case.

Have a large glass of red wine and get your future regular PSA tests marked in your diary. Congratulations!

Edited by member 24 Jan 2021 at 22:51  | Reason: Not specified

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

User
Posted 24 Jan 2021 at 22:52

Good result. Know what you mean about some consultants being hard to talk to an I'm sure doing it on the phone does not help. 

I don't think your gp will be sent the full report, so may not be able to help. Still worth asking though. You can certainly ask for the biopsy report from the hospital they may charge about £10 fee, but then you can see everyrhing and Google the long words. 

Edited by member 24 Jan 2021 at 22:53  | Reason: Not specified

Dave

User
Posted 24 Jan 2021 at 23:12

As Dave said, it's most unlikely your GP will have sufficient knowledge of prostate cancer to tell you, and he won't have your hospital records either.

You could email your questions to the hospital, usually the urology secretaries, who will pass it on to the consultant.

You can ask for your hospital records, I always do. They aren't permitted to charge for them, unless you are being very unreasonable (such as asking for the same records over and over again).

User
Posted 25 Jan 2021 at 05:32

Originally Posted by: Online Community Member

You can ask for your hospital records, I always do. They aren't permitted to charge for them, unless you are being very unreasonable (such as asking for the same records over and over again).

I was charged a tenner for my pre-op hospital records as I was seeing a consultant privately (who is also a NHS consultant).

When I asked for my post-op notes, after the surgery was done by the same surgeon on the NHS, they were free!

Cheers, John.

User
Posted 25 Jan 2021 at 08:37

Rules have changed a few times on this.

I had an MRI in 1997 (nothing to do with prostate), and I asked for the images. Doctor checked, and finding I was a private patient, he gave them to me directly. As an NHS patient, I would have had to apply through the hospital, and pay some fee they deemed appropriate.

I think the 1984 or 1998 data protection act put the £10 limit on the charge for medical record (well, everything).

Later (2018?) EU directives required your medical records to be provided within 30 days of requesting, and for free. The circumstances under which health bodies can refuse to provide the data were massively reduced too.

When I've asked for my records, I always state not required within the 30 day timeframe (unless they are for an upcoming appointment), so the records department can prioritise other requests which are urgent for followup treatments.

User
Posted 25 Jan 2021 at 12:38
Whether or not they can charge you depends on the lawful basis that you are using to request the records. If requesting under SAR, they can't charge unless you are requesting a large amount of data. If you just request them without quoting the processing condition, they can charge a nominal fee.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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