Jist diagnosed with secondary breast cancer

New to the forum but going to see the oncologist re my new diagnosis of cancer in the chest wall and one in my lung. Had a mastectomy and 7 lots of chemo end on 2007 beginning of 2008 and thought I was ok. This was picked up on a routine check 3 and half weeks ago. My oncologist is very good but does not normally like to tell you much so I am hoping today he will be better! I cannot take herceptin or tamoxifen so would be interested to hear of what treatments other people have had and anything I should ask in addition to the long list I already have!



Welcome to the forums, I’m sure other users will be along to support you soon.
In the meantime you may find it useful to contact our free helpline on 0808 800 6000, the hours are Mon - Fri 9.00 - 5.00 and Sat 9.00 - 2.00.

best wishes
June, moderator

Hi Debs,
welcome to the club none of us wants to be in. Really sorry you have been diagnosed with secondaries mine are in the liver and I have had different chemos for the past 5 years on and off. Hope your onc answers your questions it is so important that we have a good relationship with our clinicians. Mine speaks the same language as I do so that has been a massive help, even when things have not been good. I always make notes and am on my second little note pad.
Love Debsxxx

Hi Debs

Sorry to hear about your secondary dx. I have liver mets rather than lung - diagnosed over 2 years ago. I’m assuming that you can’t take herceptin or tamoxifen because your cancer is HER2 -ve and hormonally -ve? If you are hormonally +ve but it’s specifically tamoxifen that you can’t have, there are several other hormonal treatments that could be tried.

There are also a number of different chemos including xeloda(also called capecitabine) which you take as a tablet daily and can keep on taking for as long as it works - I had 17 cycles (just about a year) on it before it failed for me. Worked throughout and managed to lead a near normal life, except for having sore feet and hands.

Your onc will probably have already decided what the next treatment should be for you - I would just ask why that particular treatment rather than one of the others, so that you know yourself why he has selected what he has selected.

Good luck! Let us know how you get on - and I’m sure someone will have been on the same treatment as is proposed for you and will be able to help with potential side effects etc, so you know what to expect.

Kay xx

Hi debs,

Sorry to you have joined the secondaries.

I have mets to the lung and chest wall and some in the bones.
I am now well into my forth year and have had very little growth.
I have had hormone treatment in the past also a couple of chemo and have managed to keep well and active.

Do you have any support in your area for a secondary dx or are you left to you own devices?

Best wishes

Hi Debs
so sorry you have had this news - I am approching first year since secondary diagnosis - had taxol and bone stuff and herceptain but now having to look at other options - i think you will
feel a bit more in control when they tell you what treatment you will be on etc - and when you know there will be people here here who can let you know their experiences …jayne

Hi Debs
Sorry you have to join us but we are a helpful, supportive and well informed bunch :wink: I have bone mets so can’t help with your specific spread but a lot of the treatments are used for different mets so may be able to help in the future. It is a very difficult place to be in right now (I remember it only too well when I was dx 18 mths ago) but you will hopefully feel more ‘in control’ once a treatment plan has been decided. As Debs -I-C says, take a pad to write any notes on or take someone with you so they can do it for you - you’re probably going to be all over the place still. Also, come back on here and ask us any questions about treatment, side effects etc - someone is bound to be able to help you. (actually I’ve just re-read your post and you went yesterday - duh - In that case - hope you had your questions answered)
Take care

Hi, I hope you got the answers you needed at your appointment and feel a bit more in control. i was diagnosed with lung mets just over 2 years ago, and remember the despair of the first few weeks very well. I still have down days but am lucky to be able to get on with life-have just returned from a very wet holiday in a yurt in devon! I hope you are getting the support you need, practically, I found it really useful to see a welfare rights advisor from macmillan, who helped me apply for DLA etc, and also went to the hospice for a time for some support.

let us know how you get on.

Hi notgivingin - wot a great name - and don’t you dare!

I’ve just read this thread, and wondered how things were going for you. Being diagnosed with secondaries is awful (an understatement!). I hope you got satisfactory answers to the questions you asked your onc if not I’m sure the women on here can help - there is a vertible mine of info here that can help and support you.

take care