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ARF
Posts: 2
Joined: Mon Apr 16, 2007 4:55 pm

Information

Postby ARF » Mon Apr 16, 2007 5:49 pm

Hi,
I live in Essex, UK.
My mum has PC. She is 66. She returned home from a holiday in Spain in Oct 2006 and began to lose weight. She became jaundiced and had digestive problems. After several months of seemingly endless blood tests through her GP, she was referred to a digestion specialist.
After scans and an endoscope etc he told her 2 weeks ago that she had a growth on her Pancreas which was 99% likely to be mailignant. He stated that it was very difficult to do a biopsy because of the location of the pancreas. He advised that she should see an oncologist and that chemo could possibly shrink the tumour for resection.
Today mum went to see the oncologist and was told that she has a
2-3cm tumour on the pancreas which is between two blood vessels and therefore not resectable. He has advised a 12 week course of chemo which is scheduled to begin in 2-3 weeks time;
2 weeks treatment with 1 weeks rest then repeated. He stated that the cancer was not going to shrink but might be containable.
My mother does not want to know the details and therefore my father did not feel he could ask the right questions in front of her. We are in the dark. I know how I feel about this because I have read this and other websites. I am not a defeatist but I am a realist. I find things much easier to deal with if I know the full facts. Whilst I want to protect my parents and I respect my mother's right not to ask, how can I get the right prognosis and get my questions answered? My mother would allow me to talk to her GP directly but do they usually do this?

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Mon Apr 16, 2007 7:52 pm

ARF
[quote]I am not a defeatist but I am a realist. I find things much easier to deal with if I know the full facts. Whilst I want to protect my parents and I respect my mother's right not to ask, how can I get the right prognosis and get my questions answered? My mother would allow me to talk to her GP directly but do they usually do this?[/quote]

My father was diagnosed (at age 68) in March. I am sorry to hear about your mum. I, too, like to know the facts and I can empathise with your sentiments above.

Yes, your mum's GP (or indeed Oncologist) should be willing to discuss her case with you providing that she gives her permission. When my dad was being tested (different circumstances as he was in hospital for 6 weeks and got all his tests/diagnosis done during that time) his Consultant or one of their Registrars were always happy to speak to me about where things were up to. The only condition was that they always checked with my dad first, and he always consented.

I wish you luck in getting the information you need, and getting the best possible care and treatment for your mum. I will say to you that you should push (assertively) for information and help. Our experience (dad wasn't offered any treatment at all) has been largely positive in terms of the care and nursing support we've had, but on occasions we have had to ask and ask again to fully understand who does what, and how to access various services and support.

Take care

ARF
Posts: 2
Joined: Mon Apr 16, 2007 4:55 pm

Postby ARF » Mon Apr 16, 2007 9:31 pm

Like so many, this is all new to me. I will hopefully be seeing mum's GP in the next week or so.
I'm going to make a list of topics to raise so I get what I want out of the meeting.
Thanks for your support.

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Tue Apr 17, 2007 4:04 pm

I found it useful to take a list in when we saw Dad's Consultant team. I did find that most of the time they had answered all of my questions anyway but it was very helpful to have a checklist.

Also, ARF, start to think about care needs for your mum. Who, how, what - etc. You may be able to handle this as a family but my advice to you is to start to think about the practical and logistical side of things sooner rather than later so that you get geared up for them. Your mum's GP is responsible for her medical care when she is at home and so is the best person to start having these discussions with. The reality for us has been that between Macmillan Nurse, District Nurse, GP and Home Care, we have had everything we need. The District Nurse seems to be the one who does all the organising and ordering of equipment etc.

For example, we were a bit silly in that we bought dad a brand new double bed just before he came out of hospital. A week later, the care team (carers and District Nurse) decided that he would need a proper hospital bed and we were left with the dilemma of where to store a double :wink: Ah well, you live and learn. :)