A forum for advanced pancreatic cancer issues

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Joined: Tue Jan 22, 2019 9:59 pm

Unusual presentation

Postby NatalieE » Wed Jan 30, 2019 3:28 pm

Hi all,

I just wanted to post my dad’s story so far to see if anyone has had any similar experiences.

On the 7th Jan my dad was diagnosed with advanced pancreatic cancer with mets to the peritoneum.

He was told that he’s a good candidate for palliative chemo in that he seems quite well and the doctor said he was between 0 & 1 on the ECOG performance scale.

He went to see an oncologist last week who is baffled by my dad. He said that he seems remarkably well for somebody with this kind of diagnosis and that his cancer markers are very low with someone with advanced PC. apparently they are 25 and he’d expect them in the thousands.

The oncologist is now querying the diagnosis because it is very rare to present as well as my dad with the diagnosis he has.

I’m trying not to get my hopes up too high. It’s certain that he has advanced cancer that has spread from somewhere and it is still inoperable but maybe if it’s not pancreatic in origin it might not be as aggressive.

Has anybody had experience of something similar?

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Joined: Sat Jun 09, 2018 4:17 pm

Re: Unusual presentation

Postby toodotty » Thu Jan 31, 2019 9:50 am

Hi Natalie,
Firstly the cancer marker is only accurate in only 90% of cases. I didn't show any cancer markers at all despite being stage IV PC. It is great that your dad is fit and well and he now needs to keep his fitness and nutrition levels up because if it is cancer then the fitter he is the better the chances. Do not let indecision on the part of the Oncologist delay treatment, speed is absolutely paramount. Pay privately if necessary because if it is PC then it can be very aggressive. It doesn't wait for NHS guidelines.


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Joined: Tue Jan 22, 2019 9:59 pm

Re: Unusual presentation

Postby NatalieE » Thu Jan 31, 2019 10:22 am

Thank you so much for your reply Erika.

I called this morning to speak to the head of oncology this morning. He’s told me that the oncologist had taken my dad’s case back to the MDT this week so he will be able to discuss a treatment plan with him at his next appointment, which is Monday.

I totally know what you mean about not waiting around for the doctors. I’ve already had to complain through PALS in order to get my dad an oncology appointment in the first place. I’ve found that he’s been treated with a lack of urgency that is baffling given how aggressive everybody knows PC is. It’s been very frustrating. Anyway, I now have the mobile number of the head of oncology after I submitted my written complaint so if we have problems getting people to give us answers about appointments, I just ring him and he sorts it out. I can’t tell you how many phone calls and voice mails I left for various secretaries and clinic co-ordinators prior to this.

It’s a shame that I had to complain in order for people to get moving on his case. I’m not somebody who normally complains. I have the utmost respect for all HCPs. I realise they have a heavy workload, but I felt that this was the one time in my life in which I needed to make a nuisance of myself. Sadly, people who make noise seem to get things done.

Thanks again for your reply. I’ll try not to get too hopeful about the low cancer markers.