Breast cancer, IBC & brain mets

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It’s a while since I posted on here, but in February I was diagnosed with brain mets so here’s an update. Story so far:

November 2003 lump in right breast, had lumpectomy, then mastectomy as it was a stage 3 cluster & not enough clearances. Infection in wound. Six sessions of FEC then radiotherapy. All clear & back to work in September 2004. Taking tamoxifen.

May 2006 found strange swelling in sternum. Nothing showing from scans or untra-sound, but a couple of weeks later by left breast turned bright pink, with a large lump in armpit & I realised it was IBC. Sent by GP straight to clinic where everyone said ‘It doesn’t look like cancer’ but they did the biopsy anyway. By the time the biopsy results came through the red patches were spreading. When the 6 sessions of taxotere & herceptin started I had 3 red patches on my chest and 2 on my back, but all but the red breast disappeared within days of the 1st taxotere. I developed neutropenia and then septecemia, so into the chemo ward for a week. Had neutropenia every chemo session but lots of drugs kept me out of hospital, and I didn’t care because I could see that the treatment was working. It was working so well that I was offered a mastectomy, and the pathology from that showed that all trace of the cancer had gone. Brilliant! Continued with arimidex instead of tamoxifer & herceptin every 3 weeks.

December 2007 I had been feeling increasingly tired & unwell noticed that the tumor markers on my regular blood tests were slightly up. Went to the onc & was sent for body scan but nothing showed. In February started to feel dizzy & sick, GP sent me to onc for brain scan. I was admitted the same day & the scan the next day found 3 brain mets. Had big doses of steroids to reduce brain swelling & symptoms, then 5 doses of brain radiation (didn’t really mind the mask thing) and rehydration as by then I had lost a stone in weight. In hospital for 10 days while the steroids were being reduced, then sent home and now on just 2mg a day.

Very tired for a lot of the time, moon faced and bloated with steroids, but otherwise feeling OK, if a little shocked. I’ve had to surrender my driving licence, but I’m now getting Disability Living Allowance as I’m still having problems with strength & balance. Am claiming on my life insurance’s terminal illness clause. Have made a will.

So what next? I really don’t know. It’s all so uncertain & absolutely no one can predict what will happen next. I’m not depressed or really worried, just in that living-for-the-moment state that seems to be the way I deal with being treated for cancer.

Husband, son, friends, family and work are all being wonderful, so I just count my blessings. How on earth do people on their own manage? I have 24 hour a day help and don’t lift a finger if I don’t feel up to it.

I don’t know if any of the above will be useful to anyone, but ask away if you have any questions. And I’d be interested to hear about anyone else’s experience of brain mets.

Lots of love,
Lynn

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Hi Lynn,
Glad to hear from you, but what a shocking time you’ve been having of it. I’m glad you’re home and being well looked after. It makes a huge difference if you are well supported by friends and family.
I’m assuming you’re not well enough to return to work in any capacity? It sounds like yet another of those weird limbo-lands we find ourselves in so often. I have liver secondaries, and am pretty well at the moment, but my life’s measured out in 3-month chunks at the moment, from one scan to the next, and all I can hope for is no news, as that is going to be the best news. I’m sure others have their own experiences of this.
Sometimes i feel as though I don’t know how to live. How am I supposed to go about it? Live as though I’m in denial and just make the most of every day? it just feels so ‘split-personality’ to do that, but I am very grateful to be well enough that there are times when I forget I have cancer. Of course there are other times when the full reality of it hits me, and then I wonder how I can possibly go to work or get on with life. I guess the only thing is to take each moment as it is, and be true to our feelings at that point, not trying to feel anything different than we actually do.
How old is your son? Is he grown up or still young?
I wish you all the best for feeling well and having lots more living to pack in,
love Jacquie x

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Oh Lynn

I am in tears as I read your post and can only imagine how devastated you and your family must have felt after being given good news repeatedly and then to have that shattered so many times. I can only say you are obviously an extremely brave and generous lady in sharing your story.

Although I try to live each day to the full and not let breast cancer rob me of more than it has already - I cannot begin to imagine how I would cope if I were to have to confront what you are now doing, so inspiringly.

Thankyou for writing with such honesty - reading your account has helped me to acknowledge my personnal fears about the indiscriminate way in which breast cancer can recur and maybe live with them as a reality.
Ever since my dx and in the several following discussions with the medical staff I have always felt they avoid answering questions with the type of honesty that you are showing.
Far from making me anxious about the future, I always feel that knowledge is empowering and you have given that gift to me.

I send you and your family my heartfelt wishes and that peace,comfort and love surrounds you

Seren x

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Thank you both for your comments.

Jacksy, I know exactly what you mean about a split personality. I feel like I am living in a soap opera written by someone else. Very surreal. But you just get on with things and enjoy smelling the roses. My son Tom is 16 and doing GCSEs this year. He’s coping very well with all of this, but my cancer has been around since he was 11, so I think it’s just the norm for him. but he’as also a very well balanced sort of chap, which helps a lot.
As regards work, I work for the Royal Bank of Scotland, who have been wonderful. They are still paying me full salary for 6 months with 50% after that. I’m not well enough to sell mortgages (not concentrating as well as before) and I can’t get to work anyway because of not driving. My licence will be reviewed after a year, so no point in thinking about it until then.

Seren, if you want to know exactly where you stand as regards the cancer, you have to ask the doctors very straight questions, like ‘What is my life expectancy?’ But they probably can’t give you the answer you want, because the answer is usually 'It depends on how well you respond to treatment." When I first got IBC, I discovered that the average life expectancy was supposed to be 6 months. But I responded unusually well to the treatment, and was told that only 6-8% of patients respond that well, which bought me another 18 months so far.
I don’t think that life’s supposed to be fair, but at least it’s interesting!

Lots of love,
Lynn

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Hello Lynn,

Sorry to hear about this latest dx on top of everything else you’ve been through.

I was dx with IBC in Dec 06, now know I had the symptoms in the Oct, just didn’t know it and nor did my GP.
It’s a bugger to deal with isn’t it. i’m on my second recurrence, skin mets along mast scar line. My first recurrence appeared during rads which was scary to say the least. Have just started the tykerb trial as the mets are on the move so feel like I’m back on the treadmill. I think everytime I’m scanned the oncs are staggered not to find more spread, just can’t get rid of it though!

You’re so right about support, don’t know how I’d have coped without it.

Wishing you all the best and I hope you’ll keep posting

Love
Jackie xx

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Hi Lynn
Like the others I really feel for you and applaud your attitude. I don’t know if you have read my threads about Lisa, my daughter who too has IBC and was only diagnosed a year ago (May 3rd) and who too has had brain mets and now a tumour in her back, but because of this and having one a brave daughter (who hates the bloating and big tummy) I can really feel for you. IBC and then brain mets is scary isn’t it and the only way is to keep going and being as optimistic as possible. Lisa has had very little good news in her one year since dx and people can’t understand how she is still standing but like you she refuses to go under … she says if she does then the cancer has won already. She is really cross that she can’t drive by the way.
My heart goes out to you but keep being as positive as possible … I am convinced that attitude makes a lot of difference … all the medics keep telling her that.
lots of love Sue x

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I think the spilt personlaity thing is like living and walking parallel roads. This metaphor was used by the psychologist in the recent ‘mummy diaries’ series on TV (about the charirty Winston’s Wish which helps terminally ill parents and their children)

Anyway the psychiatrist commented that the women in the film were able to live their lives on paralllel roads…on one road they were clear about their prognosis, the inevitbaility of their eventual premature deaths from cancer and wanted their families and themselves to be a ‘ready’ as possible. On the other road they kept living as ‘normally’ as possible, while accepting tretaments, hoping for remission, even hoping for a cure just round the corner, and hoping to reach milestones in their ordinary lives.

I find this idea of parallel roads a really helpful one to try to live my life…more helpful than the ‘live for the day’ idea which I think denies what is most human about ourselves: our consciousness- of past and future, our memories.

My cancer has not this far spread as far as most of you on this thread…but my life still feels very precarious, because my regional recurrence is barely under control and I have almost no treatment options left. I also feel in limbo land.

best wishes

Jane

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I can only echo what Jane says above. I prefer the pararell road approach which is how I think I appear to cope so well. I know my life is very limited now but at the same time will push for treatment that can help me survive for longer and reduce my symptoms.
I’m doubtful I’ll see christmas and so have had very bizarre conversations with my husband about trying to time my death so it is not too close to Christmas for the sake of my young children- 3 under 11. It’s as if we are planning a holiday and not my death and funeral!!!
then I have good days and hardly notice I’m ill but at the same time it is not ‘normal’ for a 46 yr old to have all housework done for her or use a disability scooter and have a sleep in the afternoon and dinners cooked for us but it’s become a way of life after 3 years of continuous treatment.
We all cope in different ways and I have found so much help and kindness from forums like this to friends and neighbours that I barely knew before I came ill but find it so frustrating that often I can feel so ill but look so well that my symptoms and problems can be ignored by the general public and don’t see why I should tell all and sundry how ill I really am. Since I’ve been using my walking stick more and my lymphoedema sleeve is more obvious, people have been more helpful. It’s like they need an outward sign to be polite and helpful.
Hope all of you are coping and it’s good to chat about issues like this.
Kate

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I completely identify with the idea of parallel roads-trying to organise my will whilst thinking about what’s for dinner, standing on the bus on the way home from work competely knackered from chemo and being up during the night with little one, but looking really well. Sometimes it does feel very unreal, but having this diagnosis does make me prioritise things differently. I am thankful for the amount of support I get, but still see this forum as a constant source of support and information.
Nicky

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I find the idea of parallel roads quite helpful, so thanks Jane for posting that. it explains quite a bit how I feel, and also accounts for those very odd times when the roads cross, like talking about pensions with colleagues knowing I will never draw one, or being quizzed by my mother about the state of my liver whilst having dinner with friends.

Hope you are all doing ok and Lynn thanks for your post,

Cathy

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It’s great hearing from you all. So good to feel that you are not the only one.

I had excellent news yesterday. I went for my 3 weekly herceptin and discovered that my tumor markers had gone down from 59 on the previous test to just 34 last time, which is now within normal limits. Lets hope it stays down!

Love to you all,
Lynn

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Hi Lynn
That’s such good news, it’s such a rollercoaster going from scan to blood test. I think you do have to live in the moment but I have to say I do like the parallel roads metaphor as well, I can really relate to that.
On one level you are dealing with scans results etc and beside yourself with anxiety and on the other it’s dinner, Tesco and remembering which one of them to pick up from which activity! I have one child doing AS levels and the other doing Key stage 3 so a stressful time. My son was doing his GCSEs when I was having treatment for my secondary diagnosis last year and my oncologist did a letter for us to pass on to the exam boards, not sure if it made any difference !! Hope things keep looking up for you.
On another note Kate , it was good to meet you at the Guildford meet, I have been following your posts and really pleased that you have been able to sort out treatment options hope things continue well for you and your family
Best Wishes Kathryn

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Hi Lynn and everyone,
That’s excellent news Lynn, about your markers. Hope you are feeling more cheerful as a result, today.
I too like the idea of parallel roads, and agree with Cathy and Kathryn about those weird moments when the roads meet. It really can be like another world breaking through into this one. I was on the tube last week, and sooo tired. I toyed with the idea of asking someone to give up their seat (it was packed) but just didn’t think I could face having to explain why I look perfectly okay but needed to sit. In the end I stood all the way.
Kate, I can really understand about your bizarre conversations about timings and Christmas. It’s ridiculous! But also a natural thing to be thinking about.
I have two kids doing A levels and GCSE’s this year. I too got a letter to send to the exam board, I don’t know if you’ve done this Lynn? It only comes into play if they are borderline between two grades, but can make a difference of up to 5 per cent.
Great talking to you all
Jacquie x

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Thank you for the idea about a letter for the exam board. I’ll follow that up. It’s not as though Tom doesn’t deserve all the help he can get!

And I meant to say to Zotam that I have been reading her recent posts, and I hope that Lisa starts to get some good news soon. It’s always a roller coaster, but Lisa seems to be having a particularly bumpy ride.

Love,
Lynn

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Thanks Lynn. The roller coaster description and the bumpy ride is a good one. She is in at the moment having the portacath fitted. I had phone call from her just now (2.30 Thursday) to say that she has had it done and is on a drip and resting. She was ‘heavily sedated’ but she said she didn’t know a thing for an hour. She feels a bit sore in the chest but otherwise Ok. Now waiting to hear when she can be picked up. So far she is being very strong and keeps taking the bad news with a few tears but then pulls herself up by her bootlaces and says she isn’t giving in. She starts the Taxol & Avastin next Weds. Will let you know how she gets on.
Love Sue x