My daughter was dx with brain mets yesterday. She is 34. Is there any positive stories out there? Numb with shock at the moment and I cant function. A few people out there may recognize my name and remember me posting how well she was doing. Dx with IBC last May. Has had chemo, mastectomy and recon, then radiotherapy to an area of her back where a small lump had been removed. Doing so well … bounced through most of it very determined and positive. At end of Rads she was getting really bad headaches they said it was the rads. Then she was sick, only once each day for 3 days. Cut long story she had CT scan to body and brain Weds … results yesterday … two areas of brain mets. Doesn’t sound good. MRI today and neurosurgeon soon. Hoping that there is some hope out there if only for a few years. Please let me know some good stories. Onc mentioned only months if treatment didn’t work but maybe few years if surgery etc. I am devastated and haven’t slept, can’t eat etc. She was doing so well and now this. She is on steroids which has stopped the pain and bucked her up for now. So unfair. Can’t understand why they don’t do scan of head earlier … onc said brain mets may have been there some time. I don’t know why chemo didn’t deal with it. Love Sue xx
Hi Sue,
so very sorry to hear the devastating news about your daughter’s brain mets. There is a US based support forum for patients with IBC with some very positive postings on mets. Don’t think we are allowed to post actual websites, but if you google “ibc support forum” you should be able to find it. There is one particular lady in London who posts and may be able to help. There are posts from all over the world.
From the postings I have read, quite a number of the ladies on that site are being treated by a Dr. Cristofanilli and his team at MD Anderson Hospital in Houston, Texas. He has set up the first specialised unit for IBC patients and is doing trials with various new drugs.Perhaps your daughter’s Oncologist could contact him for advice?
I don’t know where your daughter is being treated, but it might be worth exploring whether she could get a referral/second opinion from either the Royal Marsden in London or Christie’s in Manchester, both of which are specialised cancer hospitals. They may have trials of new drugs that other general hospitals don’t.
I realise this is perhaps clutching at straws, but wish I had known what I do now when my twin brother was dx with an inoperable malignant brain tumour 13 yrs ago. We didn’t have access to the internet then, and I and my sister just felt so helpless watching him slowly expire. However, treatments have changed dramatically since then and I do believe there is every possibility that your daughter’s life can be prolonged .
I am sure one of the ladies here with experience of brain mets will come along with some positive advice. The bcc team here will also help, either by phone or e-mail. I have used their services in the past and found them very compassionate and knowledgeable.
My thoughts and prayers are with you both.
Liz.
Sue,
i cant help you with anything but i had to reply to send you and your family love and hugs xxxxx
Hi Sue
I know that this a very difficult and worrying time for your daughter and family. As Liz points out, Breast Cancer Care can offer support and information if you want it.
If you feel you can call them, you will find that you can in confidence about your fears and concerns and the team on the helpline are happy to talk to you or just be a listening ear if you feel you want to offload.
The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm. The number is free phone 0808 800 6000.
Alternatively, our email Ask the Nurse service on this site maybe of help with your concerns, here is link :
breastcancercare.org.uk/content.php?page_id=119
Breast Cancer Care are here to support you so please use us if it will help.
I am sure you will receive plenty of supportive, helpful posts from other users too.
Kind regards
Louise
Facilitator
Sorry can’t help but I was only wondering how your daughter was as I remember you posting last year. I can’t imagine how you must feel as I would rather it be me than any of my three daughters. You are rightly devastated. I know there are some positive stories and hope someone will reply to you. I am thinking of you and your family. love Eileen
Hi, I’m so sorry to read your news. I’m hoping someone will be able to help you more than I can, I have bone mets. I don’t know if it’s an option in your daughter’s case but sometimes gamma knife is another treatment choice to whole brain radiotherapy. I believe it’s offered on the NHS here, link to Sheffield hospital. gammaknife.org.uk/
If your daughter was having herceptin before this lapatinib might be offered, I think it crosses the blood brain barrier which is something chemotherapy doesn’t do.
There’s also some old postings here, you should be able to find them in search, written by KitKat.
She wrote her brain diaries and her postings have helped 2 friends I know who were in the same position as your daughter.
Thinking of you both…xx
Thank you everyone … its so reassuring to know that people are out there thinking about us. Maybe it will be better when we know what treatment to expect. Just hoping there is some… hence asking for positive feedbacks. Just hard to accept when you have beautiful, bright daughter of 34 who looks 10 years younger and has to go through all this especially when she has been through so much already and was just beginning to feel normal, get her hair back and thinking of going back to work. It was all so sudden. I would just like to think at this point that we will still have some time together to do some positive things and that the future won’t be as bleak as it looks at the moment. Its just seems so awful being the brain. No cancer left anywhere else.
Love to everyone
Sue xx
Hi Belinda
How do I find the diaries by kit kat? Looked and can’t find them. Maybe I could do one of Lisa too. She is being very positive at the moment … its the rest of us who are collapsing!
Love Sue x
Hello again Sue, just been into search, here’s part 1…may have to do several postings.
Brain Diary Hi All
I’ve decided to impose on you all my lovely journey through brain mets as there didn’t seem anyone out there who’s done it recently/firsthand. Don’t want to scare, rather to reassure, so if you don’t want to read, stop now!
As you may know, saw the doc last week who confirmed brain mets. Hospital called Tues ( week later) for me to go in Thurs for mask and simulator for whole brain radiotherapy. Have to say, VERY impressed at speed of NHS here, also slightly scared that they felt it necessary to do it so quickly!
Mask was fine! I was worried I’d feel claustrophobic, but it was a bit like having a a warm string vest put over my face! It was only on for about 5 mins and then cooled down. Then they clip you down on the table, but the radio is only about 6 mins total, so I can do that! Easy! No tattoos as they draw on the mask!
She also showed me the MRI films and the mets were very small white spots. About 6 or 7 dotted around, but lower in the brain than I had thought. Not many in the top bit, and one a bit alarmingly near my optic nerve, but she reckons this radio will stop it inflicting any damage.
The radio will hopefully reduce them but, as usual, won’t get rid of them. Whether they recur is apparently dependent on what happens elsewhere in me, but as liver and bones seems stable for now, fingers crossed.
I start next Tues, 10 sessions over 2 weeks. Hair will go patchy and thin again, but it may not come back this time. Still, rather be here and bald, than hairy and not!
Feel so much better now its all going ahead and I can deal with it! Been working out driving rota and babysitting rota today.
Driving by the way, is off for the ‘forseeable’. basically if I ever want to drive again, the doc would need to fill in a form for the DVLA. Just going to have to get used to it, and use taxis and buses etc.
Was a bit concerned that this would in some way change me, my personality, but just going to have to try it and see. Surgery is not an option cos there are just too many.
Steroids seem to be stopping headaches and clumsiness, still a bit woozy but think thats the steroids themselves! Plus, they give me thrush so mouth back to cardboard and weight dropping off again. Mind you, I’ve got plenty to lose so no worries there!
Anyway, think thats all for now, let you know how its going next week.
Love Kitkat
Part 2…Kitkat I hope you don’t mind my posting these…
Brain Diary Part 2 Hi Everyone,
I’m back! 4 whole brain radiotherapy treatments done, 6 to go and not feeling too bad!
It’s a very strange experience when you actually have the radiotherapy. When I’ve had it before on my boob and back, there is no smell, no lights just buzzes. This time there is a definite smell, kind of burning but not really, they call it ionising apparently, but my friend whose been driving me noticed it in the car! It also flashes a kind of blue light at the back of my eyes which has baffled them as its not supposed to! I think it must just be zapping a particular nerve in there somewhere! Its so quick though that I don’t have time to worry. I have to say that by the end of it, I’ll be glad to finish!
I’m feeling more weary today, and had a bit of a funny ear last night which is all down to swelling in my poor head. I do feel a bit like a bit of bacon! Hair still there, but scalp definitely feeling tingly kind of pre hair fall out feeling for those who’ve had chemo.
Anyway, will have a good sleepy weekend. My poor Mum has been away on holiday since all this kicked off and knows nothing about it, because I so wanted her to have a good holiday, so thats all about to hit the fan this evening. I hope she’ll forgive me.
Hope everyones doing ok
speak to you when I can
lots of love Kitkat
Hi Sue,
I am so sorry that your daughter and you are having to deal with this situation and I hope for a positive outcome for her. I hope I am allowed to post the following link for you, where you may find many women doing well with brain mets as well as a whole lot of information for you both.
This is part of a large American forum for women with breast cancer, which I find very useful.
Jenny
x
Sue
I’ve brought KitKat’s latest thread back to the top of the secondary breast cancer section.
Take care and all the best
Nigel
Sue the posts are the start of Kitkat’s diary.
Thanks Nigel for bringing the latest posting from Kitkat to the top again. Hope you’ve seen it Sue it was such good news.
xx
Thank you so much … I have just got back in and will sit and have a read. Lisa went for MRI this morning. all went Ok until they tried to do a final test and needed to inject into her vein … no veins in left arm … they cant take from right arm because of the missing lymphs. the one vein they eventually found collapsed as they put needle in. they tried several and even tried her foot … not being nurses they gave up … lisa was in tears and very bruised and very upset because she wanted them to get into a vein and so put up with the pain as long as she could and then ‘waggling’ the needle about. Poor girl she was beside herself when she came out. She just wants everything to go well and fast … of course its now the weekend so nothing can happen until Monday … she is very frightened and Its really upsetting to see her like that when she is normally so strong and positive.
Thanks again for doing this for me Belinda and Nigel and thanks for the web link Jenny.
Love Sue xx
Sue
I feel for your daughter. During the whole chemo experience my wife’s worst part, the part she feared the most, was getting the needle into a vein. I used to dread watching her go through this process more than anything.
Latterly she requested that the specialist, the phlebotomist (I think they’re called), was called in to do this part, as some nurses and doctors were, by comparison, ham fisted.
On this discussion forum many ladies have talked positively about a portocath. Perhaps this might be something appropriate to raise with your daughters medical team.
Take care
Nigel
Funnily enough Nigel we discussed today whether they would do that for her especially if she had to have chemo again. She has endured so much for someone who looks so young and bubbly and who has smiled her way through everything this last year hoping that she was going to beat this thing and to now be told right at what we thought was the end of her treatment that she has brain mets is devastating. She is still smiling but this vein thing is the one thing that is getting to her and I know the radiotherapy to the brain will get her down too because it knocks you for six by the sound of it. She will hate not driving she is so independant. Poor love has so much to go through and i just pray for a miracle that will get her through it all after the awful treatment to come. She has to see a Mr Grundy neurosurgeon at Southampton soon but I am not sure of any hope of surgery or gamma knife etc It should be someone my age not my gorgeous daughter going through this. Cancer doesn’t respect any age though does it? Did your wife have brain mets? Its still so hard for me to comprehend and I find this site really helps us
Love Sue xx
Hi Sue
What I’ve learnt is that breast cancer is so unpredictable. In April 2007 my wife, who is 44, found a “small” lump - she was initially told that “it’s unlikely to shorten her life” and “the prognosis is good”. However in Jan 2008, after chemo and radiotherapy had finished (ie when she was hoping to be able to look forward to a bright future) she was told they had found a tumour on her liver!! Straight to stage 4, “incurable”, “terminal”, do not pass go!! BIG SHOCK!!!
I’ve been on this site since 30th Jan 2008 and have learnt so much from the other ladies who are an inspiration and have given us hope. We have to re-assess life, live for today and enjoy every day that we’ve got. Stay as positive as we can etc etc.
It’s not easy but everyone lives in hope that sooner rather than later there will be, if not a cure, something that can stabilse/shrink the tumour and offer a good quality of life for several years.
There are positive stories out there - Kit Kat’s was one of them (brain mets & liver mets so hope for you and me). There are others who have been going 5+ years.
What inspires me is the positivity that I get from the ladies who have secondary breast cancer.
I hope that your daughter responds to treatment and that the treatment is not painful etc etc
Take care
Nigel
Hi Sue,
so sorry to learn of today’s fiasco trying to get a vein. When I was having chemo the nurses had a hard time with the veins in my arm, so they put the IV catheter into my hand. Hurt like hell, but it worked.
(edited in line with terms and conditions of this site)
Hope things go better on Monday.
Take care
Liz
Hi Sue - so sorry to hear about Lisa - she was doing so well after her ld recon - I don’t know what to say but my thoughts are with you both.
Lots of Love
Sarah x x x
Moderator Ann -
yes, I fully understand why you edited my post - I didn’t think it would get through. I was just trying to give Sue information that would help her and her daughter, as IBC is a very aggressive bc, and there aren’t too many on this site dx with it. It was worth a try. Thanks. Perhaps I’ll try and send her a pm with the information, or are those messages edited too?
Liz.