Mum terminal with secondary breast cancer!!

Hiya,
My mum had breast cancer 8yrs ago…and had a lumpectomy…which was a success.
Back in march this year she got a cough that would not go,after anti biotics weeks passed and it was still there. Then her voice changed and her cough got worse.
In august she was sent for bloods and a chest x-ray but they were all clear. So had some breathing tests done…which again were fine!!
She then in october went to see a ENT man for her voice, this was productive as he saw part of her larynx was paralised. The he sent her for lots of scans…CT neck,CT body,needle asperation of neck. All these tests were in the last month or so, and on friday they told her she had advanced terminal cancer!!! No idea why its not shown before now…but its in her blood,tissue,liver and lung…!!
We are back to hosp tuesday to talk to oncology for some answers to questions she wants to ask…but we know that she cant have chemo…as its too far gone…!
I just want to know what to expect, how long she might have?? Does anyone know what peoples health is like when they only have a few weeks,months left???
Thanks Caz xxxxx

Dear Caz, I’m so sorry that I can’t answer your questions and also that your mum has such advanced illness. I hope you all get the answers you want from the oncologist and that your mum is able to have treatment to help her to feel better.
You will get lots of support on here and breastcancercare do leaflets that can be downloaded from this website.
I’ll be thinking of you - be kind to yourself, and let us know how things go on
monica xxx

Hi Caz,

It sounds like you and your family are having a really difficult time at the moment. If you feel you would like to talk to someone in confidence then the Breast Cancer Care Helpline is here for you, offering support and information. Calls to the helpline are free, lines are open Mon to Fri 9am - 5pm and Sat 9am - 2pm Tel: 0808 800 6000

Here is a link to information on the BCC website on secondary breast cancer, which I hope will be helpful:

breastcancercare.org.uk/breast-cancer-breast-health/secondary-breast-cancer/

I’m sure you will also get lots of support from the other users of this site

Kind regards,
Kate, BCC Facilitator

Thank you both so much for a quick response…i have just re read my post…and i feel like i have waffled on a bit. So sorry for that, i guess i’m desperate for any advice as to why…what…when!!
I will continue to keep you updated…and the support means loads…so thank you.
I took her out for a drive today…and we popped to Super market for no more then 10mins…and she was soooo out of breath. So i think i will do her shopping from now on. :frowning:

Speak soon
Caz xxx

Sorry to hear about your mum Caz.

My mum was diagnosed with terminal cancer in November 2006. She had never been diagnosed with a primary so this was a total shock. She wasn’t suitable for treatment (never understood why, but this was before my own dx so I didn’t know much about cancer then - I was dx three weeks after she died). Her cancer was in her brain, so different from your mum. She died in the January, about 9 weeks after the diagnosis. She rapidly became very confused and couldn’t live at home. It was all very distressing.

My dad died from bowel cancer - it returned in his liver, again he received no treatment (this was a long time ago) and he died just over three months later. Apart from getting very thin, and therefore weak, my dad was alright until the day before he died, and he lived at home nursed by my mum, and died in his own bed.

If you speak to your mum’s doctors, they will know whether your mum has weeks or months left to live, and how she is likely to progress.

Best wishes
xx

Hi Caz,

I am so sorry to read about your Mum. This must have been such shock to you all and extraordinary that nothing showed in any of the earlier tests. I have known friends with similar prognosis where their passing has been quick and relatively peaceful. I hope your mum can be made comfortable and as pain-free as possible. You might find it helpful to ask the hospital or your GP to refer her to a macmillan nurse/hospice. They can help so much at a time like this.

Dawn
xx

Thanks Dawn and RR,
Your comments were helpful to me, mum seeing pallative care nurse on thursday so i guess she will be able to tell us more.
She has been taking her steroids for 3 days now and this is helping boost her a little, i am unsure about these as i am thinking that it will also boost the cancer??? Or is this been a bit silly?

We are at the hosp tmro and i am really hoping the oncologist can give us a idea of time.
She fell in the shower the other day…so maybe we have to start thinking of hand rails etc…!!
I will be intouch once we have seen the doc tmro
Thanks again guys…its good to off load xxxx

Hiya…we went to oncology today…!!
The cancer is in the lungs,liver,soft tissue,blood, and in the fluid around the heart.
They have offered her chemo which will start on the 21st of dec, but this is only for pain we have been told that after one treatment it might not be suitable for her to continue but she going to give it a go.
She is going for her hair cut next week so that the loss of hair will not be too much.

She asked him how long she had left and he said he hoped she had a least 2months!!

She is taking it well and she asked if it would hurt at the end…which made me cry… :frowning: they promised her that they would do their best to control that with strong pain killer!! So we have a goal to reach which is the 21st…and see what happens after that…!
Thanks for listening…Caz xx

Hi Cazzy

You dont say how old you are. I have a 17 year old daughter and I am about to find out if I have secondary breast cancer and I am so worried about her. I can see from your pain that this is not going to be easy and I cant offer you any more words of comfort than you already have, I just hope that your Mum is made as comfortable as possible and I pray that you have someone you can talk to.

Even though I dont know you, you are in my thoughts.

Carol

Hiya…mum having a few bad days right now, she has been sick a few times and really can’t face any foods. She is having to drink 3 of the suppliment drinks a day which is taking some getting down.

She was trying to write some xmas cards today and was putting in them that it would be her last card :frowning: this hits home as some times in the day i can act like everything is ok.

The doctor came to see her today but is concerned about her health at the mo that she is coming tmro and friday too. Think this is because her breathing getting worse…she is really out of puff now.
Well for now thats all i can say… :frowning:

Caz xx

Dear caz, I am so sorry to hear about your mum. I hope she gets all the support that she needs. It may be worth discussing with her what her fears and concerns are before you see the palliative care nurse on tgursday. For example, if she wants to stay at home even if her health gets worse, plans can be made by the palliative care team, district nurses and G/P for that to be possible, and it is much easier to organise the right kind of support before it is needed. Also, any symptoms such as breathlessness can be controlled, even if the underlying cancer cannot be cured.
best wishes, and I hope your mum is as comfortable as possible. look after yourself.
nicky

Hiya…mum has had a bad day again today…the doc has stopped her suppliment drinks as they making her feel sick!! She is now to have what every she fancies with high calorie intake…like choc,cake,milk shakes…etc…although she was worried about her colestrol bless her…doc did tell her that wasn’t a issue now but i bought her lots of things to choose from but she dosnt want to eat them at the mo.

They said that she may start morphine next week as that will help with the breathing. I managed to get hold of a blue badge today for parking as she needs to get to the bank to get a few bits sorted and we can now park anywhere…so that will be easier.

She said to me today that she thought it was going to be quicker then she thought!! As she now feels really poorly…that was hard for me to swallow.
So we will now see what the pallative nurse says tmro…
Thanks for listening…love Caz xx

Hi cazzy8, so sorry to hear about your mum. Have been trawling all of the cancer sites as my mum also has been diagonosed (a few days ago) with secondary breast cancer which has spread into several other organs. We find out roughly how long she has left tomorrow and I’m so frightened. Your posts have given me a small insight into what it’s going to be like. My mum is wanting to go into hospice as she had to be a carer for my dad and step dad and doesn’t want my sisters or I to have to care for her. I’m utterly shocked and devastated and keep bursting into tears (though not in front of her), so God only knows how the poor soul is coping. How are you coping with everything - please keep in touch with me as it looks as if we are going to go through pretty much everything at more or less the same time. God Bless, I’m thinking of you. Going to hospital tomorrow again, will update afterward. Just praying that she will be as comfortable as possible through all this and that I can help her and my sisters to get through everything.

hiya quietstrength

Sent you a mail check your inbox…love Caz x

Dera Caz and Quietstrength, I can give no answers. I just want to tell you that I am thinking about you both and sorry that you are having to deal with your Mums illness. As a Mum of 2 daughters myself, and having secondary BC myself, my heart goes out to you just now. As a Mum the only thing I will say is that I would rather have the Cancer myself than watch my daughters going through it. My Mum who is now 84 took it very badly when I was diagnosed originally at 39, which was 20 years ago. I take morphine every day and I find it has made a huge difference to the quality of my life. But it takes time to get used to it at first…but well worth it. I wish I could offer more comfort. I will be thinking about you both over the coming weeks, much love Val X

Hiya Val

sorry to hear your news too hun, your a very brave lady…and well done on enjoying the last 20yrs xx

Yeah mum only said to me today she would rather it was her then me or my brother.

She is on many drugs now…for acid reflux…breathlessness, and pain, so far not on morhpine.
We at hosp tmro for pre chemo assessment, bloods checked etc so hoping they are ok.
Hope this does do her more good then not, she is very open minded though as to whether its the best option.
She has good days and bad days…today was a good day as she ate lots more then usual…!
District nurse coming tmro, and the gp coming friday, everyone being soooo lovely and very understanding.

think i might need to see the GP away from her though, as i would like to know what to expect as to the down climb.
Bye for now xxxx

Hi again Caz, Those drinks they give you to boost you are hellish. God knows how they taste so bad. Have the makers ever tried them themselves?..Yuck… They even make my Mum feel sick and she doesnt have Cancer. Do not be afraid of the morphine. Many people are, thinking there is no going back. I have been on huge doses and have been on them for 10 years now. But am back down to a small amount again but they can make you feel a wee bit odd woozy until your body get used to them…then the side effects wear off.
I think it is a good idea to speak to your mum’s doctor alone afterwards. Not everyone wants to know all the details of their illness or what may/can happen. (I do, as I like to know EVERYTHING, I like honesty from my doctors). However your Mum may not want this. But she sounds like a lovely Mum and I think she knows that things are not good really. I am on loads of medicines too. But I am grateful that they have kept me going for so long. If I can help you in any way just ask. I hope your Mum knows just waht a lovely daughter she has but I am sure she does. Love Val

Hi Caz - re nutritional drinks. Besides breast cancer, I also have severe Crohn’s disease and was on a naso-gastric feeding tube for 2 and a half months to put some weight on for surgery earlier this year. I am still having 3 small bottles of Fortijuice daily - each 200 ml bottle has 300 calories. I find the blackcurrant flavour easy to drink - must be cold from the fridge. I tried the Ensure milky drinks and just couldn’t get them down. I think the Fortijuice comes in 9 different flavours, so there may be one your Mum can tolerate. You need to get them on prescription, either her Oncologist or GP can prescribe them
Take care.
Liz.

Hiya Liz and Val,
My mum tried all the flavours liz…the best one was toffee and caramel but your right they taste horrid and it was defo making mum feel sick. We have about 15 left but they wont take them back at the chemist even though they have not been opened so thats a bit of a waste hey!!

Well today was a little stressful, lots of questions asked and many more answered. Mum was amazing as usual and took it all well, if not a little hazzy on the info due to not thinking straight right now. So i was really glad i was there as a 2nd ear. Chemo will defo start on monday…the list of side effects was a bit un-settling but as mum says she isnt getting any…lol…the optomisum is endless…ohh how i love her.

We were given a little ccok book/idea list of fattening foods which is great to have some ideas for a shopping list. She is now having to drink full fat milk, this is very difficult for her as for years she had to stay away from any fat foods due to collesteral…so making her drink and eat these food is going against her faith a little…lol.
They had to talk to her about getting a wig…but mum said she was ok with being bald, she did ask me what i thought and as she has a wedding to go to at the end of jan i thought it would be a nice idea to have it on stand by as she will be with people that don’t know she is having treatment. So we are seeing them next wednesday…!!

So today was a good day, we feel that we have moved in the right direction. When she has days like this it seems really sureal that we are sat in oncology as its almost like she just has a bad cough. It’s not denial its just nice to be normal for a few days, i’m scared that the chemo will send her right back to where she was a week ok, but also ready to hold her up and boost her back to this stage again.
Well thanks for listening friends…and Val thank you so much for your kind words, i do like to think i’m a good daughter…roll reversed now but she has given me 40yrs of being an amazing mum and i am glad to be helping her.
xxxxx

Hi Caz, I am glad that the meeting went as well as could be expected. Sometimes it helps knowing there is a plan of action. It is the not knowing I found difficult to get my head round. But once it was all arranged it was just a case of getting through with it.
I found it difficult to eat recently when I had to eat at night to have something in my stomach before I took my chemo tablets. I found banana mashed on toast or wheetabix or slices of cheese and apples, quite easy to take. Have you been in touch with any mcmillan nurses for your Mum? I have not needed them myself but my aunt found it good to get to know them while she was reasonably well. It meant that when she became more poorly she " knew" the nurses who could help care for her and they popped in occasionally to see what they could help with, whether it was filling in forms, advice or just someone to offer ideas, sometimes things you may not think of yourself.
I hope your Mum manages the chemo. She may be offerd tablets to help with sickness etc. They can be very helpful. I found if I took the pills for nausea BEFORE I felt nauseous. Your Mum will need a lot of rest too and some TLC but I sure you will manage that just fine. LOve Val X