Hi there,
Please bear with me as this is my first post here and about my mum.
She is 59 was diagnosed with Breast cancer in 2010 - it had spread to the lymph nodes but with mastectomy, chemo and radiation she seemed to have been able to keep it away for 6 years.
She started having neurological symptoms around a year ago and underwent every test available to diagnose this. She then started to develop issues breathing, swallowing and her arm and breast swelled in June this year. She was given her diagnosis of Stage 4 tripled negative Inflammatory Breast Cancer with malignant pleural effusions on both lungs, fluid around her heart, possible lymph nodes on her neck/oesophagus. The neurological symptoms were something called paraneoplastic syndrome. She started chemotherapy at the beginning of september (gemcitobene and another drug) however she was taken into hospital because she had acture renal failure which they believe was caused by lymph node (cancer spread) on both ureters. She had stents put in and was released from hospital but is very very frail and weak and lethargic.
We are waiting for an appointment with her oncologist to determine what the next steps are. I believe the decision has been made to stop chemo - eother because it is not working (?) or because she is too weak/kidneys are too weak to have it. I am frightened that the treatment options remaining will further weaken her and make her more ill without actually extending her life.
Her oncologist is by nature a very optimistic doctor which is great however i think my parents are expecting/hoping a cure and for my mum to get better. He has said the whole way that she is treatable and that the hope is that the treatment will dry up pleural effusions/stop the cancer spreading and get mum ‘back on her feet’. However the chemo didnt do those things and because my mum’s expectations were so high, she is now very down and confused. I feel like am constantly being the bad news deliverer, interpreting the oncologists words and asking the difficult questions. When her kidneys were failing, we said goodbye, she said her goodbyes and then came through it - it was hell for everyone so it is really hard for me to believe that she will get better, that the treatment will work. It is not in my nature to be negative at all, I’m very positive and hopeful but I just can’t see anything positive here. I feel that the oncologist has only given us one side of this - the ultimate best case scenario without perhaps adding whether this is realistic and I am in need of a dose of reality. I don’t know whether we have months or weeks or the years that the oncologist has dangled.
Sorry for the long and rambling message, i hope you are still awake! I suppose i am just looking for some more understanding of what she is and likely will go through, whether there is any hope, do i help her fight or do I just focus on giving her the best quality of life for as long as she is here?
Thank you so much for listening, if nothing else it has been very cathartic to put it all down on paper!
x
Hello
Welcome …I’m afraid I don’t have any advice but hopefully some of the very experienced ladies here will be able to help with support .
In the meantime …support your mum and just having you with her will make her feel loved .
Hugs xxx
Hi there Sesame
so sorry that you and your mum have had all these ups and downs. I can hear the desperation and the need to know that things will improve. Sesame, its great that the onc is so positive. i hear your fears that more treatment will not help your mum and may take away her quality of life.
i agree that a group discussion with the onc could be helpful. Its important for your parents to know the clear picture, so that your mum can make an informed decision …it may be difficult for her and she will need support in that. But she must make her own mind up… Not feel pressure to have treatment if she doesnt want it. This must be so very hard for you…watching your mum decide either way.
Please come back and share this with us…what you describe highlights the dillemnas many of us go through too.
i do hope the way forward becomes clear for your mum, Dad and yourself.love and hugsxx
Moijan
Sesame…yes, its so so very hard. Much harder watching mum sometimes, than actually going though it.
im sure Mum will get comfort fom you being there. Mum’s are so special arent they? You wish you could protect them…but sadly we all have our paths to go down…much easier if we have a hand to hold thoxx
Maybe you could make brief notes of what the onc says?Just a suggestion, as I often come out having thought, what did he say?
(Once I thought he was talking in centimetres, when he was talking in milimetres about a lump and my friend had written the correct size down! So reassuring for me to read it!)
You will all get through this Sesamexx do come back and share things with us…we are all here for youxx
Love, Moijanxx
Thank you! Nowhere near as hard as what she/you are all going through of course, you are right i just want the best for her!
I was actually planning to take notes and ask if i could record the conversation on my phone so that we could discuss it later and there would be no confusion as to what is said.
Thank you again for coming back to me, what an incredibly supportive and inspiring group of ladies you are…might suggest my mum comes on here for support as i am sure it helps to have someone else who knows what you are going through.
x
Hi Sesame, just wanted to say hi and welcome, although we wish you hadnt had to post at all. Cant add much to what the others have said but i too am triple negative (my status cahnged from ER+, rendering all the hormone treatments useless) and have had pleural effusions. I had two chest drains and pleurodesis, followed by carboplatin chemo. i have been relatively ok since but not sure if it was the chest drins or the chemo that sorted me out. Has your mum had those procedures? not very pleasant at all but if she hasnt it may be worth asking…i know i have neer felt so ill as when i couldnt breathe due to fluid build up. There is also a lady on here who i belivee had a catheter fitted to drain the fluid constantly.
We all know what you mean about getting answers and having reality checks…in short there are no answers…we all just keep going living on hope and determination. I am a little younger than your mym (52) and i know at the moment i will have just about anything they thro t me to keep going but i have also been in a place where i have now understnd people who say ‘enough is enough’. As the others have said this has to be your mums decision and all you can do is respect her wishes and ‘hold her hand’ all the way.
I am sure things will be clearer after your onc visit. Please do let us know how you get on and remember that we are always here for you and your mum. xx