Please help - mum with inoperable PC, what can I do?

doggus · New User Joined: 09 May 2007 Posts: 6 Location: Lincs, UK

Hi all. My mum went into hospital two weeks ago with 'shadows on the luings' after a chest infection. two days ago she was told she had inoperable PC, with metastes on her lungs, liver and lymph nodes. We met the oncologist yesterday, I was horrified initially as he offered no treatment, just palliative care until I started to talk about Gemzar and Teciva. I am 7 weeks pregnant with her first and only grandchild and she is very motivated to meet him/her. The oncologist seemed to wake up a bit then (I got the strong impression he thought she should just shuffle of and die). Tomorrow consequently she is having a biopsy of a lymph gland and a mammogram as there is a very outside chance the primary is not in the pancreas but in the breast as her PC markers are low, and she has no jaundice or diabetes.

What can I do to help her? With Gemzar she may have 6 months, without she has 1-2 months, not long enough to see the baby. Is there anything else I can push for? I can pay for her Teceva and have told the oncologist this. She is on a 25mg Fentanyl patch with 10ml Oramorph every six hours. They started her on an anti inflammatory yesterday beginning with dextro....what is this for? What troubles her most is she keeps choking and gasping for breath - is there anything that can help her here that I can insist on?

I feel I have to fight for her as I have some medical knowledge, her husband is being passive and mum is too weak to fight. ANY help is much appreciated, as this is all so new to me. Thank you so much.

brainman

Hi doggus,
All that diagnosis was done without a biopsy??? A biopsy is the only way to really be sure of what kind of cancer your mother has.

It often does feel like we have to fight to get the medical team's attention. It sounds like you went in with at least some information that made your mother's doctor realize the she/he was not dealing with an uninformed patient but with a patient who has a family well informed and willing to fight for the health care they deserve. Keep on fighting!! If she has not had a biopsy, ask the medical team "why not?"

Good luck and God bless you.
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doggus · New User Joined: 09 May 2007 Posts: 6 Location: Lincs, UK

Dear Jim

You have just cheered me up by understanding. It feels exactly like a fight. The oncologist has limited experience with PC (he is a generalist), he was totally disinterested in my mother and this made me furious. He wanted her to go quietly. As you rightly say, how do they even know where the primary is without a biopsy? I have insisted they do a mammogram as the other suspect is breast and that they do a biopsy on her lymph gland.

I am moving 200 miles to be with her tomorrow, and I will chant to myself 'keep on fighting'. Life can be very lonely sometimes. Thank you for your inspiration.

Best wishes,

Doggus

PS I made a mistake in my initial message - I am 33 weeks pregnant, ie 7 weeks to go!

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 1003 Location: UK

Hello Doggus - I happened on your posting as I don't have PC. However, I wanted to say that you should seek a second opinion if you possible can. Trust in the medical team is so important, and if you are unhappy with the care offered, insist on seeing someone else.

I see you are in Lincs, and are having to move 200 miles to be with your mother - which PCT is she with?

Good luck with your fight.

doggus · New User Joined: 09 May 2007 Posts: 6 Location: Lincs, UK

Hi Vee

Mum is with North Lincs Trust, and now I have done some research I see that there is a pancratic specialist in Castle Hill Hospital, Hull. I am going to call this afternoon to see if I can get Hull to take a look.

She is having a biopsy and a mammogram this afternoon to see what type of primary she has so I am delighted this is happening quickly.

Thank you for listening Vee.

Best wishes,

Wendy

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

doggus,
Agree with the previous posts about getting a diagnosis as the treatment varies tremendously between cancers. Keep us updated.
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RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

doggus · New User Joined: 09 May 2007 Posts: 6 Location: Lincs, UK

Thank you rlee, for confirming this. I had an appointment with the oncologist today but we have postponed as the biopsy is (still) not back.

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