I need to know

Vic 9 months ago

1 reply
35 subscribers
391 views

Hello,

I had an abdominal biopsy 2 weeks ago due to possible peritoneal mesothelioma..(.I have BAP1 Tumour Predisposition Syndrome), have had

previous kidney cancer and my Mum passed last year from Peritoneal Mesothelioma.

I also have a pleural effusion which I will be having VATS surgery on.

I telephoned the consultants secretary yesterday to see if the results of the biopsy were back...they are...she booked me in to get them next Weds...( 7 days time).

The anxiety I am experiencing is all encompassing.

The abdominal tumour was found on an MRI scan in June and the pleural effusion in August.

We are now in October and I am non the wiser.

I telephoned my consultant's secretary today to ask if I could have a phonecall telling me the results. She said the consultant prefers face to face.

I explained the waiting is worse than actually being given bad news ( from personal experience).

She said she would send an email to the consultant.

My question is ;

Do the results belong to the hospital or me?

If me, surely I can decide how I want to access them? Patient led care and all that?

Do you know the law around this area?

Many thanks

Vicki

Carole F - Macmillan 9 months ago

Hello Vicki,

Thanks for getting in touch.

My name is Carole and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

Waiting on results can be such a difficult time. Feeling anxious is natural, but I’m sorry to read that your anxiety is all encompassing. These tips may help, and it may be worth speaking to your GP about how you are feeling.

Some doctors do prefer to discuss results and possible next steps face to face.

I can appreciate you would like to know if legally, you can request results over the phone.

I’m not sure where in the UK you live, but the NHS Constitution for England within their section on ‘rights’ state that ‘you have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.’

This isn’t specifically about test results, but the consultant might agree to a phone call if it’s your preference. Unfortunately, as nurses on this platform, we couldn’t say if this would mean that you got your results quicker.

I hope this is helpful. If you have further questions, please don’t hesitate to get back in touch.

Sending best wishes,

Carole

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Our ref: SMJ

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I need to know