It’s been a long time since I have been on here. My Mother in law was diagnosed with Breast Cancer in December 2007, after 2 operations and a course of chemo we thought she was going to be ok. She went for a bone scan about 6 weeks ago as she said she had back pain but the oncologist told us not to worry because he didn’t think it was cancer related. She went for a routine check up with him today and when she asked him about the scan he said “oh yes its not good news” and told her it had spread to her bones (her back, leg, hip and ribs) and that there was nothing they could do for her.
I am so shocked, when we found out she had breast cancer it was from a routine mamogram and although I thought she would be ok when they called her back I had kind of prepared myself for it. But this is just something I am totally unprepared for.
Myself and my husband live next door to her and we look after her as she is on her own but I am 7 months pregnant with our first baby and I am beside myself now because I don’t know what to do. I didn’t go to the hospital with them today as I have a chest infection and due to her just having her last dose of chemo didn’t want to pass anything on to her or anyone else, when my husband called me I felt like my legs were going to give way. I just don’t know where we go from here, the oncologist wasn’t very forthcoming with information and there is so much we need to know.
They have said she has up to 2 years but they said the same thing to my father in law and he passed away less than 8 weeks later. This should be such a happy time for us but ever since I have been pregnant its been a constant worry and now this, I just don’t know how we will cope.
She is due to start radiotherapy for her breast cancer in a months time, I just wonder if she should still be going?? The oncologist just said he would see her in 6 weeks time as usual.
Sorry this post is a bit long but just don’t know where to turn.
I am horrified by what i have read in your post. NOTHING they can do. Rubbish! I have had bone mets now for 6 years. When it was found it was very extensive, in my skull, ribs, collarbone, all of my spine and pelvis and hip. The normal treatment is to give a bisphosphonate drug which strengthens the bones. This is usually by an infusion (drip) every 3 or 4 weeks. The main 2 used are either zometa, or pamidronate. I found after about 3 treatments i was almost free from pain and did not need any painkillers. Today bone mets is treated more as a chronic disease and providing it stays in the bones and does not spread to other organs you can live a fairly normal life. There are many other women on here with bone mets who I am sure will be posting and be as outraged as I was to read what you have said.
I suspect your mum is around my age - I am 63 - so dont be fobbed off with them saying there is nothing they can do. Get straight back on to them with your mum beside you to ok them talking to you.
Good luck,
dawnhc
xxx
Just a further thought Leanne, do you know the status of her tumour. Was it hormone positive or negative. If positive she should be offered hormonal drugs. I think tamoxifen if she is pre menopausal, or arimidex if post menopause. Was her tumour her2 positive or negative. If positive she should be offered herceptin. I wonder which part of the country you are in and at which hospital?
Although I have not got mets in my bones I whole heartidly agree with Dawnhc this seems an absolutely ridiculous thing to say and I too would get straight back onto them.
My aunt was diagnosed with bone secondaries 15 yrs after her original breast cancer diagnosis, her spread is very much the same as your mother in laws, she has had radiotherapy …[just finished another course to help with pain]…as her breast cancer was oestrogen positive she was put straight onto hormone tablets when secondaries where diagnosed and has been having pamidronte intravenously every 3 - 4 weeks…it is nearly 3 yrs since she was diagnosed with the bone secondaries,
I also agree with Dawnhc…get on their case asap.
Right, we went to see the Oncologist again last week (after the follow up appointment was cancelled twice) and we get there to find out we are seeing someone else as my Mother in Law’s Oncologist wasn’t there.
He said the same again really, that the prognosis was 2 years and that there was nothing they could do. She is having the zometa injections every 4 weeks. She was due to have radiotheraphy this month too but he now said there is no point.
I don’t understand it, I know there isn’t a cure for Bone Cancer but I have heard from so many people that they can keep it at bay and stop it from spreading. They are making her just want to give up by saying she won’t live any longer than another 2 years!! They just don’t seem to want to help her at all!! I don’t know what we should do next - should we get a second opinion?? Any advice would be fantastic!!
Leanne x
ps - Dawnhc - yes she is 63 next week and her tumour was hormone positive x
Hi Leanne - I don’t have secondaries but I am outraged at what the oncologist has told your mum in law. As the other ladies have said it’s not a death sentence these days. There is all sorts out there to help.
A lady I know was treated just like that when she got her secondaries. she was told to go home and make the most of the time she had left. That was 3 years ago. She decided to seek the opinion of a different oncologist and went to Christie’s and is on medication. So please, please get your mother to seek another opinion.
Yes you are right, myself and my husband have just been talking and we have agreed to find another Oncologist and get a second opinion. His whole attitude is making her just want to give up and having spoken to and read so many different stories of bone mets makes me even more determined to prove him wrong.
Leanne - if I were you I would ask your m-in-law for a referral to a different Oncologist. Perhaps you could talk to the PALS people (Patient and Liaison Service), which every hospital has. They intervened on my husband’s behalf when he had to wait 8 months for an “urgent appointment” with a Neurologist. Because the NHS is free at point of delivery, our NHI contributions and taxes are not ring fenced for the health service, but it is not free - we pay one way or another, and your m-in-law is entitled to the best treatment the NHS can offer. I would be spitting nails at her treatment.
I changed my Oncologist when I started FEC chemo as he was downright rude, arrogant, patronising and made me cry. When I went for my first chemo, which I nearly didn’t have as I couldn’t bear to have to see him every visit, I just asked the receptionist in the Oncology suite if I could see another Onc, anyone but him. There was no fuss, no questions asked, and within 15 mins I saw another one, who sorted out my concurrent Crohn’s and I went ahead with the chemo.
By the way,I am 63 too!
Be proactive on your m-in-law’s behalf if you can.
I don’t really know much about bone mets except that as you rightly say it is treatable and can be stabilised for many, many years. I just wanted to say that after reading your thread I am absolutely horrified at the way your mother-in-law has been treated by the two oncologists since her diagnosis with bone mets. Both oncologists seem very, very insensitive to say the least. I also find it abhorrent that what was supposed to be only a routine appointment and after only being reminded by your mother-in-law about the results of a recent bone scan, for the oncologist to casually mention “oh yes its not good news” like it is some sort of insignificant afterthought. I think some oncologists seem to forget that they are dealing with a human being - an actual person who is not just medical words on a file - someone with feelings and emotions - a much loved and cherished mother and soon-to-be grandmother who deserves better than to receive bad news in such a flippant and casual way. If possible, I would really try to get a second opinion - you can change oncologists if you are not happy with the one treating your mother-in-law - it is your right. Best wishes, Jacqui x
Hi again - maybe you could put on whereabouts you live and somebody on here could perhaps point you to an oncologist they know of who would be more supportive.
I am glad it isn’t just us, I thought we might of been overeacting and were just upset with the news but I know now that we weren’t.
I am trying so hard to make her remain positive but its so difficult as just when she was starting to feel better we went back to the hospital and he made her feel just as bad again. Our baby is due in less than 5 weeks and I don’t know what she would do if she didn’t have that to look forward to at the moment. This should be such a happy time for us all and now it just feels so sad, she is now convinced that she won’t be around to see her grow up as she feels that the hospital have given up on her and think there isn’t any point giving her any more treatment.
Liz - we live in Wolverhampton in the West Midlands and our hospital is New Cross. Any suggestions would be greatly recieved.
I am busy planning her birthday next week at the moment, I thought lots of nice things might take her mind off it for a day or 2.
Hiya. I’ve been talking with several friends and family about oncologists and what they actually do in the last few weeks as I have to say my own meetings with them have left me feeling less than warm and fuzzy. THe surgeons were great, and so are the nurses so I wondered about this and it seems a few of them could do with a little training in people skills.
I wonder if by “Nothing we can do” they mean they can’t offer a cure at this time. I don’t have secondaries (as far as I know) but I’ve read a bit from people here and 2 years seems like it might be pessimistic but then I don’t know the details of your mothers case , nor am I an oncologist.
I think I’d politely but firmly ask for a second opinion, this PALS service sounds like it may be a good avenue to persue.
Hi Leanne - Like everyone else who has responded to you I am shocked and upset for your mother-in-law about the way she has been treated. I am glad you are going to get a second opinion. You might also think about phoning the BCC helpline and speaking to one of the nurses, or perhaps your mother-in-law’ s GP, or a Macmillan nurse. The more information that you can give about the current medical situation, the more one of these sources will be able to advise you on what might be the usual way forward. This will help you all when you see another specialist. So sorry for you all - and that it is at a difficult time for you, but the joy of your new baby will see you all through the next few weeks, I’m sure. The very best of luck to you, and please do let us know how you all get on. You know we are all here and thinking of you. Sarah
Thanks Sarah - its good to know that we aren’t the only one’s who think we have been treated badly. I am going to speak to Macmillian as apart from anything else I would like more information on what is going to happen because all we have seemed to get is “just go with it” and thats not really good enough for me! The Oncologist isn’t due to see her until October now!!