Hi everybody, I guess I’m looking for some common sense on the forum really. Let me explain a bit more. I had breast cancer 4 years ago and had a WLE, then 6 x FEC, 15 rads and a year on Herceptin. I’m ok now and getting on with life or so I thought. On Monday 27/11/2017 my 90 year old mum who has Parkinson’s and Dementia, Lewy Bodies, was put through the mill at our nearest breast unit. She endured, and I mean endured a terrifying (for her) ordeal of getting undressed, examined by a male doctor, sent for a mammogram and an ultrasound scan before being hauled back in the consulting room and told the lumps she has look sinister and a biopsy would be the next thing to do but not to worry as its little more than a pinprick. (That’s not what I remember from mine). She was already traumatised so much by the whole procedure she would not speak at all at which point she looked at me with fear in her eyes. We were told that this would not lead to any treatment other than hormone tablets as she is too old and sick to tolerate anything else, so there is no cure for her. I was not surprised by this and really as a family this was pretty much what we expected. ( I was also told by her carer/nurse later on that the hormones would interfere with her meds for her Parkinsons). Seeing how my mum was reacting and weighing up the information I had, when I was asked to sign the consent form for the biopsy I refused and said I thought my poor mum had gone through enough and was terrified enough by all the events of the day, I didn’t feel it was right to subject her to any more trauma for very little benefit. The doctor said he understood and that was fine, he left the room and mum was allowed to get dressed and go home. When we arrived back at her care home and the carer asked how she was my mum said there’s nothing they can do so I haven’t got to go back. Later on she twice told different carers that she had been scared and upset and she didn’t ever want to go back there again. I felt satisfied that I had made the right decision about her diagnosis and treatment. Today I received a phone call from the hospital to say they are not happy to leave that decision in place and are going to discuss her best interests with their multi disciplinary team and may send for her again if they feel she would benefit from a biopsy and treatment. I am extremely upset by this action on their part and I’m dreading having to explain to my mum that she may have to go back and endure more trauma. Does anyone have a different point of view on this or can anyone give me some idea of how to deal with all this when none of it makes sense to me, let alone my mum, thanks.
I am so sorry to hear your mum and you are going through this but I completely agree with your decision Rollercoaster. Why would they want to put a 90 year old lady through such invasive procedures. At 90 she deserves dignity and peace and the best palliative care she can get.
My mum.is 79 and has demrntia and if it was her i would make the same decision i am sure.
Do you have the health and welfare lasting power of attorney for your mum. I have. It might help.
Goid luck with getting the care you want for your mum xxc
Hi rollercoaster
I too agree with your decision. Maybe its worth finding out what rights you and she have about treatments. Surely if she doesn’t want to go for tests, then its her choice. Equally if that turns over to you, then you can make that decision.
Sue xx
I have to agree it seems cruel to put her through anything else. I suspect they are just dotting the i’s and crossing the T’s and covering their own backs and the team will ultimately come to the same conclusion as the doctor and you. How was her lump discovered?
Hi Rollercoaster
I’m so sorry you and your mum have had to go through this. Your decision was absolutely right and I would have made the same one. Hopefully the Best Interest meeting will come to the same conclusion. I would hope you would be invited to that meeting to advocate on behalf of your mum? She seems to have made her wishes very clear. (Incidentally, I am a little confused that they asked you to sign the consent form for the biopsy - my understanding was that someone cannot sign consent on behalf of an adult or if they do it is pretty meaningless legally. You might want to get some clarification on that, as I think the hospital was in error unless things have changed a lot in recent years…) I hope this gets resolved quickly for you and your mum. xx
Rollercoaster I totally agree with your decision. It would be cruel to put your poor mum through the nightmare of treatment. It’s bad enough when you’re young and fit.
A couple of years ago the mum of my good friend (who I’ve known 40+ years since primary school) was diagnosed at 80. She has altzeimers and was subjected to a double mastectomy, I had suggested to my friend not to agree to any treatment but they went ahead. She now agrees that it was a mistake, her mum has gone downhill mentally and they leave a letter by her bed for her to read each morning as she doesn’t understand where her breasts have gone and why she has scars.
Stick to your decision, you know what’s best for your mum x
Hi Rollercoaster,
Big hugs for you and your mum. It sounds like it really was a stressful day for you at the breast clinic. It really does sound like a biopsy would have been too much for your mum on that day, so you were right to say no.
With the breast clinic team getting in touch with you again, you have another chance to weigh up the options. Maybe the breast team will meet up with you to discuss your concerns. I would want to ask them lots of questions before making any decisions or letting them go ahead with a biopsy.
1.What the procedure would be if you did decide to have a biopsy done now - is there a way of making the procedure less frightening?
2.What benefit would the results of a biopsy be to your mum?
3.What treatments would they offer her and would hormone treatment even be an option alongside her other meds? How would the treatment improve her quality of life?
Lots of love, Cath
Dear Rollercoaster I just read your thread this evening. I am so sorry you and your mum are going through this. Both my grandparents had cancer in their later years that was not treated due to their age and infirmity as they were late 80s/early 90s. This was a choice taken by them in conjunction with their children even though the doctors would probably have gone ahead with some form of treatment. My grandmother had ovarian cancer and my grandfather blood cancer. Neither of them died from their cancers but rather from other age-related complications. I know that they were both completely satisfied with their decision not to treat and their children were happy that this decision was respected.
I will ask my mother next time I speak to her whether there were any difficult conversations with the hospital just in case she has any advice to share.
Good luck X
I am rather amazed that docs are pushing treatment. My oncologist said that if I was over 70 he wouldn’t recommend chemo.
Rollercoaster I am sure that you will have 100% support from us all on the forum! Can you have a word with GP to find out your rights? Good luck!
Hi Rollercoaster, I see from your introduction to that you had 6 x FEC, would you mind letting a couple of us from the October chemo thread how your last 3 FEC treatments were compared with the first 3.
I think there are 3 of us on this regime rather than FEC-T and having struggled with round 3 not looking forward to another 3!
Thanks
Dear rollercoaster,
I’ve only just caught up with this thread. I can only agree with what others have said, you are totally right and have your mum’s true interests at heart. I suspect you will never hear from the hospital about it again, but if you do, perhaps you can call on your mum’s gp and carers to back you up.
I’m sad but not surprised that the stress of the experience has made your mum’s other symptoms worse. I feel particularly sad for you because my own mother is struggling with dementia and the strain on her and my dad is severe. Mum has had several relatively minor illnesses in recent months and each one seems to drag her down a bit further mentally and emotionally. I’m sure she would never cope with a cancer diagnosis. They are in their nineties and have been married 70 years just like your parents were. It is so sad to see someone going through this in the final stage of a long happy life. Know that you have done the right thing and go on giving her your loving support.
Thanks for your reply Rollercoaster ?
Sounds largely encouraging except for last one but spending the last couple of weeks in January in bed could be worse!
Love to you and your mum, sorry to hear that your mum’s Parkinson’s as got worse. Wishing you and your family a peaceful festive season x
Hi Rollercoaster, just caught up with your story. I’m so sorry you’re having to go through this, but I would also like to add my voice of support for your decision, your mum has enough to deal with than being messed about with fir what seems like little/ no gain. I am also one of the ladies from the oct thread who are doing fecx6 so thank you for answering Chaffinch’ s questions as we’ve all been wondering, about the later treatments as they’re not many on the forum doing fecx6 that are still posting by the end. Good luck with your mum I hope you get the right outcome for her.
Rollercoaster
I have been reading all the posts about your lovely mum. I have to say this is about what is right for your mum, not the medical profession and good for you for fighting your mum’s corner.
Sending you both loads of hugs
Helena xxx
How awful that yourmum and you are having to go through this. Thank goodness you had typed the letter…hope it os sorted for you now xx
The kindest outcome for her, well done for fighting her corner. I hope that your family have a good Christmas x
Hi rollercoaster I managed to speak to my mother about my grandfather not wanting treatment for his cancer at 90. She told me today that similarly he refused the bone marrow biopsy for them to be able to judge what therapy to give him and eventually refused the blood transfusions. There were a couple of key pieces of advice that she gave me that I can pm to you if you ever find you need more input. But hopefully not and everything is sorted and you have had the chance to have s peaceful family christmas XX