Another IBC lady here. I was dx in 2009 with poss liver mets from the start. Went thro chemo etc and stayed on herceptin, had recon etc.and then in August a routine scan showed a bulky head on my pancreas. After biopsy etc. it was shown to be bc spread.I'm now on a trial drug with weekly vinerolbine and herceptin. Please ask lots of questions and push for a clear idea of treatment etc. As the others have said it may be worth going to a centre of excellence. There are many treatments out there and many many ladies live with secondaries for a long time. Progress is being made with trials constantly.
Sending you thoughts and hugs for you and your daughter,
PM me if you want, although I dont log in everyday I will get back to you eventually.
Yep Juliet - Incredibly intelligent women think alike but you're obviously a faster typist!
So Kerry, I think on your other post it said that you had already had a WBR treatment? Good to hear that you have got going.
There is another site based in the USA where there is a really good brain mets thread running with women discussing side effects and coping etc. If you're interested, you can find it here:
It's the second thread down.
Sorry to hear what you have been through. I also have metastatic BC with mets to lung, liver and bone, diagnosed last June from the start after a routine screening scan. I have had 6 sessions of chemo over the last 5 months and am now on Tamoxifen and feeling OK
Things to think about:
You need a treatment plan as soon as possible so you can stat to feel you are getting things under control.
Brain mets - Whole brain radiotherapy or maybe cyberknife depending on how many you have and their position
Other mets - chemotherapy and herceptin if you are HER 2+
You may want to consider getting a second opinion from one of the main cancer centres (e.g. Marsden, Christies etc) especially since it sounds like you have not had a lot of faith in your local unit.
Have you been given any idea of when you will see the onc to get going?
I know how completely overwhelming this news is. Yes it is not considered to be curable at the moment BUT it is treatable and there are many stories of women doing well with metastatic BC.
Think about giving the helpline a call. The people on the end of the phone are great and will be able to give you some practical information as well as emotional support. You might also think about contacting your local Macmillan nurse. I know that they are often associated with end-of-life but there is so much more to their service than palliative care. I have contacted mine on a couple of occasions and she has been incredibly helpful with practical and financial help. You could also ask about psychology support. The unit I was going to has a psychologist attached and I had a couple of sessions with her after I was diagnosed which was really useful.
Don't Google. Stick to good quality sites like this one and Macmillan. Much of the information on the web is out of date where statistics are concerned.
Hang on in there. You will start to feel better once you know what is happening. Please feel free to PM (message) me if you want to vent/chat.
Big hugs to you both
I am sorry that you are in this position. I hope other ladies will come and offer advice and some hope.
I have secondaries in my lungs and spine. I have been living with this for 3 1/2 years.
Sadly I can also empathise with your mis-diagnosis and being fobbed off. Heaven knows how you are feeling. I was bad enough at my primary diagnosis when for well over 12 months was told I had an anxiety condition ( despite strong family history and defined lump).
I can offer bits of advice but you may not take it all in at present.
1.Ring the breast cancer care helpline. They offer fantastic support.
2. Get somebody to go with you to see your Consultant if you decide to stay with them.
3. Maybe consider a second opinion at a centre of excellence ( Marsden etc).
4. Equip yourself with full knowledge of the pathology of your tumour ( er, Her, Pr etc)
5. when you are up to it maybe join us on a Tuesday night for a secondary 'live chat'
6. See your GP and maybe get referred to a hospice or Mac nurse. Dont gasp, they can offer you lots of support of therapies,counselling, treatments, benefits, pain relief. They are not just for end of life support. They can also support your daughter.
7. Surround yourself with loving, supporting friends and take
whatever help they offer.
Please stay in touch.
Ive no experience of your new circumstances, but wanted to say Im thinking of you and your daughter after such shocking news. Im sure other secondaries ladies will be able to offer some words of understanding and comfort
Hi everyone, I finished treatment for IBC in June last year. Since then, ive been backwards and forwards to my breast unit with various lumps,headaches, dizziness etc but been told these feelings are 'normal' I had a biopsy taken in November for a suspicious lump on my tummy, was told it was benign. Went back in January with same lump, turns out Doctor hadnt taken biopsy in right place first time, it was cancer. To cut a long story short, i was told 2 weeks ago i have incurable secondaries to brain, lungs, tummy button, stomach skin. other breast and possible bones. I was made to feel that i was imagining all of this, and even insisted they did a brain scan as they didnt think i needed it. There is only me and my 20 year old daughter, and all i know is that i dont know how we can come to terms with this news, its just unbelieveable, im only 40. If anyone has any advice, what i can expect, i would rather be prepared for whats coming. Thankyou so much. Kerry xxxx