Hi
I was just wondering if there was anyone here who has close family with secondary breast cancer? I have asked a few questions in the secondary discussions but I wondered if there was anyone in a similar situation here?
My mum’s 63 and diagnosed with bone mets in September last year. She has tried Fermera (hormone treatment) which failed to work and she is now on Megace. I think she has quickly run out of hormone options. She takes bisphosphonates as well but she has a constant pain down one of her legs (the onc has suggested radiotherapy as he thinks the cancer in her pelvis/spine might be causing the pain).
Anyway, I just thought I’d introduce myself and see if there’s anyone here who has family members in a similar position! Its hard watching family suffer.
Nipper x
Hi Nipper
Both my mum and my aunt (her sister) had secondaries (my mum’s was to her bones and my aunt was to her liver).
The ironic thing is that I have both liver and spine secondaries but I know that if mine had come back within a couple of years of my initial diagnosis (1995) I wouldn’t be here now because the drugs have improved a heck of a lot. My aunt was diagnosed a month after me and sadly died within 3 years but I wonder whether that would be the case now?
I had radiotherapy to my spine (also have it in my pelvis and femur) and it made such a difference pain wise so if the oncologist is offering radiotherapy it can do quite a lot for the pain.
Good luck.
Pinkdove
i am in the similar situation nipper. i think i know how you feel. my mum was diagnosed a month ago and the doctors still did nothing. no treatment yet, it makes me angry. she has bilateral carcinoma with lymphnodes affected and is only 44 years old! i am sorry i dont know how to help you because i myself need help, but i hope that this helped you at least a little that you know you are not alone with your suffering.
Hi Nipper,
My Mum has stage 4 bc and also Lymphangitis.
She has just finished 6 cycles of ec chemo and has to have a ct scan on the 8th April and then back to see the onc end of April. Really worried what he is going to say.
I’m abit of a mess at the moment the onc told me that my Mum would only have about 2 yrs life expectancy and I can’t stop thinking about this. My Dad also has a tumour in his ureter and is having an op on Tuesday for this.
My Mum has been fighting bc for 23 yrs in total but it has now gone to her lung. She had a plerodesis 12 months ago but it didn’t help she still gets quite breathless. I wanted to hear from other daughters or mothers who have stage 4.
Holly
Thanks for the replies!
Nobody and Holly
How are your mums coping? I hope they are not in any pain.
I’m afraid I don’t really know much about your mum’s personal situations. I don’t know much about stages either and I’ve never asked my mum what ‘stage’ she has. I try to avoid talking about medical stuff when I see her (I generally visit every other weekend). As I said in my first message, she has bone secondaries. She is being tried on harmone treament, although the first set of treatment hasn’t worked. From the little I’ve pieced together, I don;t think the onc gave a life expectancy but hinted at short - medium time (which I think in advanced breast cancer terms means 2-5yrs).
I don’t know what I can say to help you but after the first couple of months from the secondary diagnosis I felt better (of course it always plays on my mind and everyday I wish this wasn’t happening, but the shock has gone and I have ‘got used to it’). I do feel abit useless. I have spent a lot of time looking at stuff on the internet (you have to be careful as some of it can be quite depressing) and I have lots of questions I would like to ask the onc but of course, I’me never there for appointments.
I find the ladies in the Secondaries discussions very strong and inspiring too and it does help to know my mum is not alone.
The best bit of advice I was given by a friend was to spend a short time talking about the ‘the situation’ and discussing your fears and then make yourself move on to everyday normal stuff to avoid the disease taking over your life completely.
Do keep me updated with things. I’m happy to talk about anything. None of my friends (or my partner) really understand what I’m going through (fortunately they’ve never been in a similar situation) so its nice talk to someone in a similar boat.
xx
Hello Nipper, and all others… My mum was diagnosed with adeno carcinoma in Jan 2000. It was at an advanced stage and she had a mastectomy, radiotherapy and chemo several times. She had lymph node involvement but her fist MRI scans said she was clear of cancer following treatment. Mum then had a very good, productive and happy year feeling cancer free but Sept 2002 she was diagnosed with brain metastases. There was no more ‘curative’ treatment then available and because she was not in pain she decided that ‘enough was enough’ and let go to that next place. She died in Jan 2003, exactly 3 years after being diagnosed.
For me, the most useful thing was to write down everything I thought would be useful(diagnosis, path reports, blood tests, questions on a million things) then try to get to a consultant appt with her. The oncologist was great, but couldn’t understand why she eventually refused treatment. If I couldn’t get to an appointment I phoned or wrote to the doctors - ringing the ‘medical secretary’ (for the named consultant)is a good way to get hold of the right person.Just ring the hospital switch board and ask to be put through! Writing it all down helps keep it in your mind so you don’t forget that vital point.
Holly - make the most of your mum. love her and show her you do. it doesn’t matter if you cry or fall apart - she’s your mum and she’s used to that!
Nobody - if your mum is 44, i guess you’re anything from 1 - about 26. It is harder and more confusing when you’re younger and just can’t see your way to the end of the path. Although it seems like the doctors aren’t doing anything, there will be a plan and your mum probably knows what it is. Why don’t you talk to her, ask her to tell you exactly what’s happening, exactly what her diagnosis is ( from what you say she’s had a lot of tests!) and exactly how concerned YOU are for her. And ask if you can go along to an appointment, or ask if you can speak to her Breast Care Nurse. Be strong. Remember, whatever you’ve chosen as an ID, you are NOT a nobody.
Big Big love to you all, and to your mums too
Td xx
thank you waitingangel for your support.
i am 20years old and dont know exactly what does breast care nurse mean, there is nothing like that in our country(slovakia)
this is so hard for me because i am neither a child, and study medicine so understand everything, neither an adult because i need my mum now, like never before. she is the only person i have and i cant imagine she could die.
i am confused because they will probably give her the chemotherapy at first, and then the surgery, a am not sure it is a right solution…
i will pray for our mums to get well
Hey nobody.
Change your ID .
You are a fantastic woman too.
You are 20, you study medicine. this doesn’t mean that you understand it all. I am 44 and have studied medicine since I was 18 - and this is all new to me.
It will obviously be different in Slovakia - you can get lots of information from this site regarding what is done in the UK - and maybe the standards are different in Slovakia - it doesn’t mean that UK is right and Slovakia is wrong. If you read other threads in the forums it seems that if a tumor is over a certain size then chemo or other treatment may happen before surgery as reducing the size of the tumor enables the surgeon to excise it more effectively. I’m sure that you can speak to the nurses on line and get information from them. I feel very proud that you have sought out help from this site even though you are so far away. Be very strong - We will be your cyber mothers and love and support you. Why don’t you start your own thread so that we can be more personal to you?
Big love Td xxxx