Lisa's brain mets update

Just thought I would put a short note about Lisa, my daughter, for those who have been so kind in answering my posts. We are utterly devastated … she saw neurosurgeon yesterday … she has one very large tumour in front of her head, near the dangerous bit where her speech, memory, emotions etc are. Then she has a smaller one at base of skull. With no treatment she would have 2months only, with WBR only maybe a little longer. He is willing to operate to remove as much as he can to relieve symptoms of pressure. Followed by WBR … 4 weeks of it and then if not all tumours gone maybe gamma knife.Prognosis still not good … he mentioned maybe only a year. He also pinted out risks of this op on a big tumour. We are numb. Lisa say there looking as normal as she always has been … just looking frightened and I could see that she couldn’t take it in. The tears came later. This has all happened so suddenly that the shock is indescribable. She has IBC which we know is fast growing and he thinks that it has all happened in last few weeks. Operation maybe next week … we want it yesterday! … with Mr Paul Grundy Southampton.
Any positives out there … just a slim thread to hang onto would be wonderful. For those who haven’t followed my posts. Lisa ( 33) was diagnosed last May with IBC and has had everything … chemo, mast and recon and rads to a secondary on her back … all cancer gone from her body and we were on our way we thought … she looked so good and then 4 weeks ago started getting headaches.
Not sure how I am going to get through this but I guess I will because I have to and I have to be strong for her. I thought last year was the worst of my life, now I know it wasn’t. If I could just have her for a few more years it would be so wonderful.
Love Sue x

Sue I wish I had the right words…the thing that does stand out in your posting is that the onc seems to be throwing everything at this horrible disease with 4 weeks of WBR and perhaps gamma knife too. Thinking of you both. I don’t know if this helps in any small way but a friend of mine lived for 2 years after her brain mets diagnosis and in that time did so much with her life. Love Belinda…xx

Dear Sue

Like Belinda, I can’t begin to find the right words. I can only guess what it must be like to be a mother with a daughter with this horrendous disease. As a mother you do just want to protect your children (whatever age they are) and I am just so grateful it is me with this disease rather than either of my 2 daughters. My heart goes out to you and to Lisa.

Love Kay xx

Dear Sue,

What awful awful news. This may be small comfort but a friend and colleague of mine lived a year after her brain mets were diagnosed. In that time she had surgrry twice and WBR and had some good quality time for some months.

I hope you and Lisa are able to access as much emotional support as possible at this hard time. Thinking of you.

best wishes


Dear Sue

Am at a loss for words and what to say to you really. I do hope that the surgery, WBR and if needs the gamma option are successful and that Lisa gets more quality time with you all.

My thoughts are with you and your family and together you will fight this.

Take care and lots of love

Thank you for your posts … we will fight as hard as we can but I feel so helpless, so useless, just wish there was something that could give us some hope for a few years… but after saying that my immediate thoughts are that I want her to survive the op and have some more time however long. What an awful disease this is. We got so hopeful because she bounced through all her other treatments over the last year and for the brain mets to come on so suddenly is such a shock. If we thought she had mets somewhere else with a bit longer prognosis it would see so much better. She is so frightened but trying to be positive … not that there is much to be positive about and it is breaking my heart.
Love to all of you with this truly awful disease.
Love Sue x

Dear Sue,

I just wanted to say how sorry i am about your daughter. We can never take things for granted with this disease. I thought i was clear of it after 11years but it just bounced back when i wasn’t expecting it. You and your family are in my thoughts.

love Jenny xx

Dear Sue

This is such a difficult situation and our thoughts and hopes are with you and your family. I can see that you have received valuable support and information from your fellow forum members and know that you will continue to do so. I’m sure you will have taken comfort from some of the comments the forum members have given you, especially where they have pointed to situations where people have continued to enjoy a quality of life after a brain mets diagnosis.

I am sure this feels a lot for you and Lisa to take on board at the moment and you will be feeling shocked and confused. You may feel that the support you are getting here is enough to enable you to think through this difficult situation, if you feel that you need more support there are other sources of help. You could call our helpline – often, talking through your feelings can be a help and clarify your feelings, or you may prefer to contact a MacMillan nurse or Lisa’s breast care nurse. Lisa’s care team can also put you in contact with a counsellor if you feel more in depth help would be useful in coping with this diagnosis and the treatment options you have been given.

You can contact MacMillan Cancer care on 0808 808 2020 our Breast Cancer Care helpline is on 0808 800 6000.

We hope this is of some help to you Sue. Please email us if there is anything else we can do.

Thinking of you

Hi Sue,

I was so sorry to read your update about Lisa. This is not the positive post you are probably hoping for and I have agonised as to whether to post but I wanted to because I can’t stop thinking about you and unfortunately I have been in your situation, although in different circumstances. How I wish there had been a site like this for me when I was going through those dark days.

My daughter died aged 4, just over two years ago now, from a primary brain tumour, different I know to Lisa who has brain mets due to breast cancer. The brain is very complex and a difficult area to treat. Surgeon’s find it difficult when operating to sometimes distinguish brain tumour from brain tissue, it is difficult to get chemotherapy through the blood brain barrier and neurosurgery itself is not only life threatening but can be devastatingly life limiting if things go wrong.

My family will always be eternally grateful to the neurosurgeon who operated on my little girl, he gave her and us precious, precious time together and she had a really good quality of life. I feel as though cancer is on a personal mission to destroy my family as I was diagnosed with breast cancer 3 months after my daughter died and whilst 30 weeks pregnant.

Also, please bear in mind that in the last decade the treatment of brain tumours has improved greatly via better surgical techniques, radiotherapy and chemo that can cross the blood brain barrier. I have to be honest though I know a little bit about primary brain tumours but have no understanding of secondary brain mets caused by breast cancer.

You all have a very difficult journey ahead, particularly Lisa as she will have to determine which treatment options to take whilst at the same time being very aware of her overall prognosis. I have posted on the forum before a phrase that helped us get through those dark days ‘don’t let the worries of tomorrow spoil the happiness of today’. I don’t know whether this will help you but your time together is precious and must not be wasted.

My thoughts are with you and I will always be here as a cyber shoulder to lean on. Lots of Love xxxx

Sue - i have no knowledge of brain mets so cant help you there but felt i needed to answer to say I’m thinking of you, Lisa and your family. i’m sending big hugs xxxx

Oh Sue - what a truly dreadful time for you all. I too am in southampton and the one thing i do know is that the team there is amongst the best in the UK. You will undoubtedly receive the best of care.

Thinking of you all

Jan xx

Hi Sue

I have followed your post about Lisa as we had recon at the same time, I can only send words of comfort to you both and your extended families, thinking of you.

Take Care

Cyber Hugs

Clare (S)

Dear Sue
Like others I am so so sorry that this is happening to your daughter. What terrible news. I’m just sending you and her and your family all best wishes and hoping you can find strength at this awful time.
You are in my thoughts.

Dear Sue,
My sister was diagnosed in 2004 with BC and in 2006 with brain mets followed by lung & liver mets. It was a huge shock to all of us as we all believed that after the initial treatment she was free from this awful disease. She always said that she felt that the doctors don’t discuss the possiblity of mets enough and that once she went through the first treatment it never crossed her mind that it would return.
When she was diagnosed in May 2006 I sat hours and hours on the internet trying to find something positive to hold on to. Lets face it, if you read any of the medical sites the prognosis is dire and all very depressing. Through various sites I was able to find little snippets of hope which I was able to feed back to her. December 2006 her oncologist said that they didn’t think that she would see the new year and that hopefully she would get through Xmas. We all encouraged/begged her to get a second opinion. After much cajouling she sought out a new oncl who said that he felt that she had enough fight left in her and started a new treatment which crosses the blood brain barrier.
My sister lived a further 6months and I would like to think that that precious time was used for her to gain acceptance and for us to somehow come to terms with what was happening. Losing her was never going to be easy but we are all greaful that we were able to do more and say more in the borrowed time. In Feb 2007 I was driving her to get a new wig and she was feeling so so good and looked amazing - said that the new treatment has given her such hope. She said that she felt that she even had a slim chance of having her own miracle. Sadly, it was not to be, but the fact that she was able to feel such hope and a renewed lease of life made us also happy. It was good to see her optimistic and full of hope again. She passed away peacefully in June 2007. I can’t tell you how greatful I am for the extra 6 months… I had always believed that her and I would be sitting outside in our rocking chairs watching our grandkids play in the garden, moaning about allsorts, whilst sipping our G&T’s (even though she had just turned 40 and I was in my late 30’s:-)) and it seems strange that I am saying I am greatful for having extra time when in reality I would loved her to get old and wrinkly with me… but when you are faced with no time… a small amount of time is a pure gift.

There are stories out there of people who are living with brain mets so there is always a chance you daughter can pull through this. My sisters brain tumours were inoperable. She had WBR and chemo but unfortunately they couldn’t remove the tumours.

I am so sorry that you and your daughter have to go through this. I know how hard it is to watch someone you desperately love suffer. My mom really struggled and understandbly felt that “this is not the way it should be”. She is very right… no parent should experience this.

I am not sure if this posting is going to help you as I can’t offer you the hope you are looking for, but I just really wanted to say that use every second wisely. I am sitting here typing this and smiling about some of the things I spoke to my sister about and remembering the countless treats (cakes and scones etc) we shared. I miss her and think of her every second of every minute of every day but I am happy in the fact that I don’t feel we left any stone unturned. Obviously no amount of time was ever going to be enough but for what we had, I am eternally greatful.

You sound like your are an incredibly strong women and I am sure you are going to give your daughter all the strength she will need to get through this.
I will be thinking about you,

Thank you so much for all your comments … I come on here a few times a day and I am touched by your responses. To Swissmiss … what a truly awful time you have had, my heart goes out to you.
Avon 67 … thank you so much for that … at the moment any extra time will be such a bonus. Lisa is not at all well at the moment and we are getting really worried. she is so lethargic all the time and i am hoping that the strong steroids have something to do with that. She was told yesterday to take an extra one at lunchtime which she did but felt awful last night … all jumpy and couldn’t sit still … and I think it sounds like palpitations … anyone else had this I wonder? Today she didn’t get up very early and then had a soak in the bath and at lunchtime a very short walk and said she felt a lot better and then we sat and watched a DVD this afternoon. By 5pm she was looking totally washed out again. Getting really worried now that this large tumour is growing. She has MRI and assessment for surgery at S’hampton on Monday but the op not scheduled until Sunday 16th … thats the first time the operating theatre is free we have been told. She is disappointed that it can’t be done sooner as we know that time is of the essence and getting worried that another 9 days is too long to wait.
Jan from S’hampton … thanks for that we have heard that Paul Grundy is one of the best in his field. Just wish he could get her in sooner. Two weeks ago despite having headaches she was stood on my dressing table helping me put up curtains … she couldn’t do that now. I know steroids do have an effect on muscles but still worried.
Will post any updates
Love Sue xx

To Avon 67 … Did your sister die from the brain mets or was it something else? I only ask because someone else said that its unusual to die from brain mets after treatment and that its usually another organ.
Sue xx

Hi zotam,
I’m awfully sorry to hear about your daughter, my mum desperately worries about me too, though at the mo I’m doing very well.I have liver mets and I took steroids when I had chemo last year and they were awful made me very restless, I was hungry at 3 am every night and couldn’t get back to sleep afterwards and was very up and down. Used to fall asleep in front of TV in the afternoon. But they do help I believe. I’m sorry you have to wait so long for treatment.
Take care

So sorry to hear your news, sue. IAlthough i don’t know you i feel that I had to say something. Cancer is such a horrible disease and its path is so unpredicatable and unfair at times, I feel. i am from the Southampton area and am being treated for BC at present. What a worrying time for you and your family. Thinking of you and your daughter. All the best. love and hugs

Hello Zotam

I’ve been reading your thread about your daughter Lisa and feel so very upset for you and what you’re all going through. What a gd damn awful situation and just wanted to say I’m thinking of you and hope that whatever treatment can be given will provide your daughter with a good quality of life for as long as possible. I’m also so sorry to hear you have to wait for the surgery as the waiting is just so hard.

Sending you hugs and best wishes
Ruby xx

Dear Zotam, Just wanted to let you know that here is yet another person thinking of you and Lisa and being so sad for you that you have to go through this dreadful time, and suffer what no parent should have to go through. Zotam, I am sure that all your energy and every waking moment are devoted to Lisa and trying to make life as comfortable for her as possible. Please, also, do care for yourself by making sure you keep eating regularly, and having adequate rest, and even allowing yourself a little time out sometimes just to sink into a hot bath or listen to music, you may have a long road ahead of you and really need to care for yourself as well as for Lisa so that you can endure what is ahead. Do you have someone who is really there for you to love and support you? Please do post here and let us know how you are. With the biggest of hugs. Sarah xx