I cant sleep, not sure what to do with myself so ive just registerd on here, because i need to talk.
My brave 29yr old sister was diagnosed with breast cancer in Oct 2009. She had chemotherapy, then her breast removed & two months ago finished her course of radiotherapy. She recently did the race for life & returned to work- she stayed so positive & was determined it wasnt going to beat her.We all believed she was on the road to recovery.
However, the last 4weeks she has been really poorly & was admitted to hospital 4days ago. Today she & my family were given the news that the cancer is now in her bones & liver. The doc’s have said theres nothing they can do, we are going to lose my beautifull sister.A little boy is going to lose his mummy. How are we going to get through this? How are we going to live are lives without her. The pain at the moment is unbearable, but i know we have to stay strong for her- she needs us now more than ever. It just soo hard.xx
Welcome Lilly30 to our forums and I’m so sorry you have to join us in such awful circumstances. Unfortunately we all know (on here) how BC is a dreadful and unpredictable disease. I am so sorry to hear about your sister and can only assume, from what you have said, that her BC can’t be treated in any way? I know other ladies on here have got either secondary bc in the bones (I am one of them) and/or liver where treatment is and has been extremely beneficial but I also know that BC can be so aggressive there isn’t a possibility of it helping. I am sorry I can’t be of any more help other to say how sorry I am and I really don’t know how I would cope in your circumstances. There are other groups/organisations though that are set up to help families cope under these circumstances, although I don’t know their names off the top of my head, that you may be able to contact for help in the coming weeks.
I hope someone else will come along and offer some more information or advice that may help you.
Nicky
Dear Lilly30, welcome to the BCC forums. In addition to the wonderful support you have here please do feel free to call our helpline where you can talk things through with someone in confidence, our team are here to support you and provide a ‘listening ear’ during this difficult time for you, your sister and other members of your family are also welcome to ring too.
The number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2.
Here’s a link to some secondary information/more support which you may find helpful too;
Take care
Lucy
Hi Lily
Welcome, your families situation is so sad. Please phone the helpline at 9.00 when they open. The ladies are so helpful and will be able to advise about the help you and your sister can receive. They can also just listen to you. You must be so shocked at the moment, I hope you all get the help that you need at this difficult time. Debx
So sad thinking of you all xxx
Hi Lilly
I wish there were words that could comfort you but I just don’t know what to say. This cruel horrid disease is so unpredictable and aggressive. My thoughts are with you and your family and I hope that even at this late stage something can be done to give you hope. As my fellow forum members have already said please phone the helpline they will support and advise you. You will find the strength to get through this and it is good to know that she has her loving family around for her and her little boy.
Lots of love Anne x x
Hi Lilly, As Anne and everyone else has already said, we are so desperately sorry for you, your sister and the family. I wish I could think of right words to say, but I know there is nothing that can comfort you at the moment. I too have secondary liver and spine mets and I know that one day I will be taken too. This cruel disease takes no account of age, cirumstances or anything else. My thoughts and prayers are with you all at this terribly sad time. I’m so glad she has such a loving and caring family. God bless you all.
Lots of love and hugs, Dianne x x x
Hi Lilly,
Just wanted to send my love to you. So sorry for what you and your family are going through. You do sound like a very loving and caring family.
Please do come back here anytime to talk and get support.
Love Jaynex
Oh Lily i am so sorry to the news of your sister. I am 36 and was diagnosed in February this year with extensive mets to liver, bones, lungs and lung pleura I have a 6 yr old son. I was started on chemo which did eventually fail but after a very positive meeting yesterday the oncologist had lots to tell us regarding trials etc which I may add my husband had to do a lot of researching the internet regarding trials etc I am feeling a bit more confident about things, there does seem to be things on offer. In February myself and my family thought i had days/weeks to live,and we were all heartbroken still are, but please research and find out information and bombard the oncologist with lots of questions which he must answer for you. I find it shocking saying there is nothing to be done. Please dont give up hope yet, the shock of the diagnosis is still reeling but you must arm v yourself with information sending you all my luv to you all just now at this painful time x x x
Thankyou soo much for all your kind words, it is of some comfort to read these messages & to hear some of your pesrsoanl stories.They make me realise how many people cancer effects, & eases the lonely & isolated feelings we have.
My sister & family have a meeting this morning with her care team at the hospital, to disscuss different options. They did say from the start it was a very aggressive form of cancer(stage 3), and had been detected in one of her lymph nodes under her arm,but because shes so young & she had reported the lump asap we were really positive and never really believed things wouldnt be ok. However, looking back she tryed two diff types of chemo that didnt work, they didnt shrink the tumour- so she didnt finish either course of treatment,& instead went straight for surgery to have the breast removed,& then radiotherapy. She only finished radiotherapy 8wks ago, & has been unwell for the past 4wks-so she never got rid of the cancer as we thought she had.
When they broke the news to us that the cancer had spread, they did say she had the option of more chemo- it wont cure her but could give her more time, so thats something to disscuss today. But its up to my sister if she wants to go through that again,& they will only do it if she is fit enough to have the treatment.(theres a selfish part of me that wants to tell her to have it,hoping it will give us something to focus on & that it will give us more time with her,& more time for her to spend with her 4year old son. But I know we cant put pressure on her,& that it has to be her desicion). All we can do is support her, follow her wishes & see what today brings.x
Hi Lilly, Just read your latest post and I want to say that you must tell your sister to take any treatment they offer. My chemo didn’t work either and after 12 weeks they stopped it. (I had it weekly and it was supposed to be 18). However, I’m now on a tablet called Arimidex which I’ve been taking daily for 2 months and also Bondronat for the bones which I’ve been taking since I was dx’d in January. Had a blood test last week and then saw the ONC who was delighted because the tumour markers have gone way down and my liver function is almost normal. I will stay on this now for as long as it lasts. Please, please tell her not to give up hope as there are many things they can do to treat secondary cancer and she may well have years and years of life left. I thought I only had 3 months left in January as that was the impression I was given by the GP. I am honestly feeling fine at the moment and going on a cruise in two weeks time. Had a holiday in Rhodes a month ago and had no problems at all. If you look at the secondary threads on this site you will see that there are many women who have lived for years with secondaries. I wish you all the very best of luck and I’m hoping and praying that she will take the treatment and stay with us for a very long time indeed. Lots of love and hugs, Dianne x x x
Hi Lilly,
I’m so sorry to read your post. I’m in my 20s, too and have secondaries in both bone and liver. Just finished my 2nd kind of chemo and awaiting for scans. Fortunately for me, both chemo worked. I’ve not felt poorly either, it’s only the chemo that made me quite poorly.
Before my liver diagnosis in April this year, I was feeling quite fit and was planing to go back to work, so it came as a shock, too. I did for a short period of time wanted to give it all up, too… what’s the point? Do I really want more chemo? What if it doesn’t work? Would I be able to cope? I don’t really know how I got through the last few months, but looking back, everything has been WORTH it!
What I’m trying to say is that if your sister reacts the same way as me initially, don’t be surprised by this. She’s been through a lot already, this obviously feels like a step backwards for her, just as it felt like to me at the time. Just give her all the supports she needs, as I’m sure you and her other family remembers are doing already.
I hope everything goes well today. You never know, maybe 3rd time lucky for her!
Wish you all the best and will be thinking about you. Do let us know how you got down in your own time.
xx
We spoke to the docs Fri, & my sister has decided to try more chemo- to give her more time with us. But they said they can only do it if her body is strong enough. They said her Liver is very poorley, & they are struggling to get the high levels of calcium in her blood down. They are
doing blood tests today, & the results of that determines if she will have it.
She seems to be going down hill really fast, shes confussed& is struggling to get out of bed. She also gets breathless very eaasily, & needs oxygen. They mentioned yday local hospice facilities, but we all just want her home with us. She just wants to come home to her family to. So we are making preparations for that.
Hi Lilly
I am sorry that your sister is feeling so poorly. I really hope the doctors can control her symptoms and she is strong enough to have chemo if that is what she wants. Hopefully your arrangements for her to go home will go smoothly. Your family are in my thoughts. Debx
Hi Lilly, Just want to reiterate what Deb has said above. I’m praying that she will be strong enough to take the chemo and that they can get the symptoms under control. You and your family are in my thoughts and prayers. Love, Dianne x x x
Hi Lily,
Sorry to hear about the news your sister has received. It cannot be easy her or the rest of the family. I’d be happy to chat to you either here or send me a private message. Think we are in a similar situation. My sister was diagnosed last year with breast cancer. The following week was told she had secondary cancer with a spread to her lungs, liver, bones and nodes on her stomach. We were (still are) devastated at this news.
She has had chemo, is now on a hormone inhibitor, herciptain and bone strengthener. She is in much better health than this time last year - at point of diagnosis.
Anyway feel free to message if you want to chat.
Shiona
x
HI Lily, When I was diagnosed with bone mets in 1999 I was very ill, fragile and in shock. I had had breasr cancer first 10 years before that whaen I was 39 so the news that it had spread to my bones came a s a complete shock. I walked round like an old woman and the bone pain was intense.
Eleven years on, I have the pain under control with morphine and other painkillers and also have the bone strengthing drug Bondronate. I feel better now than I did back then. I thought I too only had a short time to live. Unfortunately all cancers are different but try to encourage your sister and tell her that there are ladies here who thought their time was up…but are still here. I had chemo for many months last year which brought my tumour markers down. You may be able to speak to her Breast Care Nurse at the hospital who may be able to tell you more, if she is allowed to and your sister agrees. Keep coming on here if you are feeling low and struggling yourself. We all support each other here. I pray things improve for your sister with the new chemo and hopefully they will be able to control her pain before too long. Cyber hugs coming your way Lily. Take care, love Val
Hello Lilly, if there is ANY option of extra time? I’d try to persuade her to take it. T’m 39 & initially diagnose with primary BC back in 2005 _ I was single and childless. I met hubby in Jan 06. In may 06 I was told t was her2 positive and needed a year of heceptin it yr her2 negative I need that new drug beginning with A?! T finished in may 07 abd tried 4 kids. Got a new job, started getting bad back in 07/08 finally diagnosed eith BC in groi, spine, liver & lungs - they thought that was it! My pleural effustion was so bad ib 02/09 - they thought that was it! I came thru until t turned yellow nstarted itchtihg - I didn’t poo 4 almost a week! They thought I was going to die they fitted a stent as a last desire - that was 11/10. In Dec I novices my haddwritind had chanced doing the Xmas cards & mu refexology -,that’s when it all went upside down I had WBRT. It’s meant go give u 2/6 months. Yes the secures I system to get rn March have paralysed y hand- cruel 4 an artist - I lost my beautiful land hot - and I’ve vole ahjUST been given the TARA News. Im inhecting nuself every day cos las lot of chemo destroued my yei s.xwheb the Xaceitabibe stopped workins I had Goserelon injectiobmns Yes I have been positive attire hepedalpng by lots of DrUGS -.i dhpild have gone ibjubne. If id heze been a tub of boyyer you’d have knocked ne back xxx Please at lease stink adopt it d
I just wanted to let everyone know who posted a comment that my sister passed away ay 12.05 this morning.
It was only a week ago we were told the news that the cancer had spread,& that we only had months left with her. That then changed to weeks. All we wanted to do was to get her home,& have her with us- we just wanted a bit of time with her. But it wasnt to be. She deteriorated rapidly during the early hours of mon, blood tests showed that her liver function levels had gone through the roof, she couldn’t fight the toxins it was releasing into her body.
We arrived at the hospital at 9am following a phonecall from staff. Her stomach was swollen,her face& pupils yellow- but what was more upsetting was the confussion & distress she was in,we tried but was unable to comfort her. Eventually after diff doses of medication she calmed down, the docs told us that she was too poorley to be moved- she couldnt come home for her final hours.Instead she was moved into a private room, where she passed away with me,her other sister,mum& dad at her side holding her hands,stroking her head & telling her how much we loved her.
What do we do now? As you can imagine we are devestated. Our family will never be the same or complete again. I know we have to deal & live with our loss, but I just don’t know how. In the space of a week we have gone from thinking she was clear of the cancer, to her not being here anymore. It physically hurts.
Today we have had to break the news to her 4year old, a little boy who was looking forward to starting school in Sept, & now has to do it without his mummy. She will never get to see him in his little uniform that she has got all ready for him. It seems so unfair, why her? What has she ever done to deserve this?
I don’t know how to deal with my grief. I miss her already xx
Dear Lilly
I am very sorry to read this news, may I pass on our sincere condolences to you and your family from the team here at BCC.
Take care
Lucy