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Has anyone had to wait ages to see an oncologist despite having a diagnosis?


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My mother was diagnosed on the 8th of september 2020 with advanced PC. however, she couldn't see an oncologist because 2 biopsies came back inconclusive and even though they knew it was PC the inconclusive biopsies prevented her from seeing an oncologist. Putting her in the farcical position of both having and not having cancer.


After a lot of phonecalls and even an attempted intervention by a Dr from a different trust, they finally offered her an appointment to see an oncologist 105 days after her diagnosis. Unfortuneately, she was in the final stages of life by then - something they weren't even aware of.


I'm currently in the middle of a complaints procedure about this matter. It boils my blood to complain about the NHS but on the advisement of hospice doctors and other NHS staff that treated my mother and have said it's not an isolated case, I'm looking for others and the loved ones of others who've had to go through this as well.


If this is an endemic failure in treatment of PC , it needs to stop.

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My fiancé saw the oncologist a couple days after the scan result and blood test indicated cancer. He was an inpatient at the time this may of helped as the ward drs referred Lewis to this team and he came to explain they will discuss his scans in a MDT with a London hospital but they can’t plan any treatment until they know what type of cancer it was.


Such a shame that it took them so long but obviously they need definitive results to plan treatments ect but I can’t see why they would not even touch base to let you know that they are aware but they can’t proceed until they have biopsy results.

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I found the whole process incredibly slow.

My husband visited the gp with vague pains in September 2019 and blood tests and a scan were ordered. Blood tests showed type 2 diabetes and nothing else. We were told the scans were clear by a nurse. He was relieved but alarms bells should have been ringing at the abdominal pain + diabetes diagnosis. He went back after a month delay and the gp advised the scans didn't show the pancreas. So only the organs visable were clear! The next series of scans were inconclusive but it showed the pancreas head was bulky. Biopsy was unclear also. We were told in February 2020 that it was probably cancer but they wouldn't really know until they performed the whipple which was then done in the April. So delay of 7 months from first gp contract to whipple. Hugely frustrating and upsetting time for us.

I appreciate this was the start of the pandemic but why was there no urgency given time is the of the essence with pancreatic cancer.

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PCUK Nurse Jeni

Hello & Thanks to you all for your posts.


I am sorry to hear about all of this. Its understandable that you are feeling hugely frustrated.


Have you been able to contact the PALS department of the hospitals involved at all?


PALS stands for Patient Advice and Liaison Service, and they are a very good port of call to discuss delays in the first instance. PALS can help to move things forward, and help to set up meetings with consultants etc...


I appreciate that this is going to be very different during Covid times, and as such, things have been even more out of the normal since this.


Hopefully now, though, things are beginning to recover bit by bit as the country comes through a very tough time.


Please contact us if you need further help - details are below.


Kind regards,

Jeni


Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

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I did consider complaining about the delays, which were the hospital and also the gp (which we're no longer with) but at the moment I know my husband wouldn't want any fuss.

There's a recurrance of the disease and recent metastasis to the liver so we need to direct our energies elsewhere.

Thanks for your advice, the nurses on this site are amazing, informative and very responsive.

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