Hi,
I’ve posted on this site before. My elderly but active Mum was diagnosed with secondaries to the liver & lungs nearly 2 years ago. She was taking tamoxifen for 18 months & then XXXX since January.
She has had a lot of aches & pains. We don’t know if this is a side-effect of the medication or something to do with her condition. She has osteoarthritis in the knees, so it could be to do with that as well.
She went to see her GP about the aches & pains & he sent her for some blood tests. The liver function test came back with “slightly raised enzymes” - which means absolutely nothing to any of us.
She has an appointment with her onc on Thursday & because my parents don’t seem to ask any questions (at least, they have no answers for us), I am wondering whether to go.
My sister gatecrashed Mum’s last appointment with him & we were all glad that she did but she is unable to on this occasion.
Trouble is, I’m so scared of going in case I get emotional & make a spectacle of myself & don’t ask the right questions & just upset everybody.
I don’t want to go; I want to run away screaming “this isn’t real. This isn’t happening” - but it is.
Does anybody know what this enzyme thing is about?
Shall I go???
Psyche
Sorry, my XXXX’s stand for Arimidex. My mind went blank and I couldn’t remember what it was calld.
Apparently, the cancer is slow growing and the onc thinks this is the best treatment for Mum.
Hi
Go with your mum, not only for yourself but for her as well. I am not sure about anything to do with enzymes but i am sure someone will get back to you this.
Write a list of questions to ask and take them with you. Does your mum have a breast nurse? If so get her number and give her a ring, she will be a mine of information. Good Luck.
Do go and take a list of any questions you would like the answers to.Ask your mum if there is anything she would like you to ask and make sure she knows what you are going to ask and approves.The onc wont tell you anything without your mums agreement but it could be very helpful for her to have your support.
Thanks so much for your replies. I’m really scared at the thought of going; I can’t even begin to imagine how Mum & Dad feel whenever they have gone to these appointments.
My sister says that when she went with them, they never asked any questions; just sat there & acccepted everything they were told, didn’t ask about different treatments or anything. She’s glad she went as she asked all these things.
They seem to put the oncologist on some kind of pedestal, as though he mustn’t be questioned and we’ve always been worried that Mum is being fobbed off because she is elderly.
Thanks again,
Psyche
Hi Psyche,
I think you should go with your mum and ask a few questions. Take a pad and make notes, the onc will not mind. Maybe ask what the result of the blood test indicates. Ask if your mum could have chemo? Thre is a tablet form chemo called capecitabine which she can take at home and it does not make your hair fall out. I was on it for 2 years and had good shrinkage. If your mums cancer is slow growing she could be well suited to it.
Good luck if her onc is like mine he will not mind you asking questions. Do not feel intimidated.
Love Debsxxx
Hi debsincornwall,
Thanks for your post. Mum had chemo when she was diagnosed 2 years ago (5FEC + epirubicin I think it was). We are worried that if she is offered it again (the sort that has to be intubed), she will refuse, as she was like a pincushion every time.
There seemed to be different levels of skill amongst the nurses; some were very skilful and some were hopeless and would leave her bruised and battered.
If she could take tablets like you mention, I think she would agree to it. I’m jumping ahead here as we have yet to hear what is said …
Thanks for the advice,
Love Psyche
If your Mum is happy for you to go do make a list of anything you or your Mum might want to query. Tamoxifen and Arimidex can cause raised enzymes…I had, still have raised enzymes due to both treatments…I have bone mets but no liver mets…I’m also on the tablet chemo Debs has mentioned…(Capecitabine, it’s also called Xeloda)…it’s my first chemo and so far it’s been working for 17 months…I’ve been on it continually and have no problems at all, no tiredness and like Debs said you do keep your hair too. In fact mine has got thicker!
Good Luck.
Hi Psyche
Go with you mum dosnt matter if you break down thats human and normal.
Do talk with your family before and write down the Q you want answers to, the consultant is not god just a person and any good one would want you to be as infromed as possible.
Also take notes because it is normal to forget what they say in some cases people record the conversations in fact some Dr’s like to do this so that patients can go over things later a bit at a time as it is a recognised fact that when certain words like cancer are mentioned brain go blank, and nothing else goes in.
With regard enzymes, these are a sign of how well the liver is working and slightly raised enzymes are often a side effect of drugs like tamoxifen. I had slightly raised enzymes when I was on my pre op chemo meds. but they do go back to normal and if they were worried would do something about them.
As to treaments these change so fast in the cancer world, all for the better so please ask if there are newer forms you mum could have that do not need to be given intravenously.
All the best
gx
Thanks so much for your responses ladies. I DID go to Mum’s appointment yesterday and I’m so glad I did. Felt quite sick with fear beforehand but when I saw my poor Mum looking so apprehensive, my self-absorption disappeared and I could focus on her and her needs. My heart bled for her, sitting there trying to be strong.
I think she was scared that I would be emotional and that would have upset her but I wasn’t; managed to hold it together.
Don’t know what to make of her onc though. V well-qualified & an expert in the field but has a very abrupt & almost brutal manner when responding to questions or imparting information.
Anyway, Mum has minimal progression & is going to be monitored more frequently, so it’s a “good” outcome.
Thanks again ladies.
Psyche
Hi Psyche.
So Glad you went and you feel better informed about everything now. The problem is as a patient (Well i was like this and i am sure others will back me up with this) you donot listen to what the doctors is saying and all you want to do is get out as quickly as possible. I use to call it escaping.
I think they most of the doctors/Onc tend to be quite abrupt but to be honest it must be quite hard dealing with emotional upset people who cry etc. Not sure that i could do the job.
Good luck
Hi Psyche,
glad you went to your mum’s appointment and got some answers. My onc is really lovely and I have a good relationship with him. I have seen tears in his eyes when delivering bad new, joy at good scan results and fear when I get my little book out and start asking questions re new expensive unlicensed drugs! My advice is keep a little book and make a record of how your mum is feeling so you can report changes to him. If you are worried and it is a bit of a wait before next appointment ring onc for an earlier one.
Keep us posted we are here to help each other.
love Debsxxx