Hi - this is my first post. Two weeks before christmas, my dad noticed my mum’s nightie was bloodstained. To cut an extremely traumatic story short - my mum has a fungating tumour on her breast - essentially the whole breast. She has signed consent for me to get info from the oncologist and Macmillan Nurse - but it seems very hard to get info from them. for example - she is having palliative care which includes radiotherapy (RT), and when she went for her first RT apt - they found lumps under her arm. Then they put her in “a tube” (CT scanner I’m guessing). When I rang the nurse, she said that the scan wasnt for diagnostic purposes - it was only for targetting the RT. She said “i told you before - we wont be looking for spread in your mum’s case”, but when I asked about prognosis - she said “we dont talk about that kind of thing - we are looking to make her comfortable”- why cant they just tell me the truth? I dont want to scare her (mum)by talking about it = but I equally want to make sure I am available to support her. She is quite elderly, and doesnt really want to talk about things at all, and I respect that. But I think we (her family) deserve a bit of honesty here - and she freely gave consent for me to talk to staff. Does anyone have any tips on communicating with hospital staff?
Hi daughter and welcome to the BCC forums
I am sorry to read about your situation. Please feel free to give our helpline a call where you can talk things through with one of our team in confidence, the line is open 9-5 weekdays and 9-2 Sat on 0808 800 6000.
As your mother has given her consent for you to talk to hospital staff on her behalf, then they should be respectful of that and respond fully to your questions. Unfortunately, too often they will try to fob us all off with vague replies, particularly if the news might be upsetting. However, we have an absolute right to that information, and if verbal communication doesn’t do it, then put your questions in writing and hand deliver it to the consultant’s secretary. This may very often do the trick.
I think that asking the top person dealing with your mother’s case might also be the most effective way - nurses don’t always have all the individual case information and that may be why the vague platitudes - speak to the consultant directly, and it is often a good idea to have the questions written down so that you don’t get side tracked.
No easy answer then, but be firm, polite and stick to your guns. You have a right to know - and they are obliged to give you that information, so don’t be fobbed off.
I am so sorry to hear about your mother, I do hope that she will be more comfortable now, and get whatever treatment is appropriate for her. My thoughts are with you all
I am in a similar position to you - my mother left her diagnosis until the tumor had ulcerated, and she does not like to talk about it - she is 78.
I have found that if you try to be very specific with your questions you can get the answers you need from the health professionals. Nurses are fantastic at reassurance, but won’t be able to give you your mom’s case specifics.
To find out about any treatment, palliative care, and a prognosis (if you feel you need to know) the best person to speak to is her consultant. This is likely to be an oncologist at her hospital of choice - though he may not work there full time.
He/she should have a secretary who is based at the hospital your mum attends, and she should be able to assist you with the best way to contact him.
Perhaps you could find out when your mum’s next appt would be and attend with her? just be prepared to ask to speak to the consultant on his own in case there is any information your mum may prefer not to know herself - like the prognosis.
Without saying that “this is how it will be” for your mum, as each and every case is different, my mum has had oral hormone medication to try to cease the spread of the tumour. Hers had already spread to her lung (usually one of the first places a breast tumour will spread to as it is so close), lymph nodes and bone. The hormone tablets worked for my mum for 18months or so, but then the effectiveness wore off. She has had radio, to help with the bleeding and symptoms of the ulceration, which was quite effective. And as she managed to cope well with that, and her overall level of fitness was good, she embarked on a short course of chemo of which she has had 4/6 treatments. Complications have meant this has stopped indefinitely in her case.
She does have regular ct scans, and regular appts with her oncologist to assess progression etc. Usually these are about every 3 months.
We know my mom’s prognosis, and in my case it helps - I know what I’m dealing with. My mom doesn’t know, and hasn’t asked. It’s hard not being able to talk to her about it, but that is her choice not mine, and I have to respect her way of doing things no matter how frustrating it is for me.
Hugs and thoughts are with you xxx
I’m sorry for the situation you are in and I do see that being kept in the dark isn’t helping. I used to be a nurse and what I would recommend is making an appointment to see someone - preferably both the Oncologist and the Macmillan Nurse.
If you can meet with your mum’s team (or even over the phone) I think it might be helpful to be clear about everything you want to know. Ideally it would be good to meet both the Oncologist and the macmillan nurse. You can say that you want to help your mother (and your father too)in the best possible way and that you need to have a much clearer understanding of your mother’s situation.
Perhaps your mother has made it clear in her way that she doesn’t want to know the details and perhaps the team are worried that you may pass on too much information and cause her more anxiety? Their first responsibility will be to your mother even though she has consented to your having information. I’m not saying that’s right but that’s why you need to discuss this further with the team. Meeting face to face makes a world of difference and I’m sure you can reassure them that this info is for you.
I would recommend making a list of everything you want to know bearing in mind that not everything can always be answered in black and white.
May I also suggest that you speak to the helpline who can probably help you with getting some clarity on all the issues you want to know more about.
I hope you get to speak to someone soon.
take care, Elinda x