Hi Lynne 007
The time after diagnosis is really scary and it sounds like you’ve got a rotten breast care nurse…she’s probably seen hundreds of breast cancer diagnoses but she’s forgotten that for each new woman it’s the first time.
I’m a great fan of Musa Mayer who has written a lot about breast cancer. She distinguishes two broad kinds of reactions to living with breast cancer. She calls some people minimisers (they are the ones who don’t like too much information, talk about looking on the bright side)- this is a fine coping strategy for some. For others, myself strongly included, this approach is not good. Mayer calls people like me information seekers. We need a lot of information to help us make sense of what is happening to us. Maybe you are an information seeker too.
I was diagnosed with triple negative bc in October 2003 and have learned a lot about it since then. I have ducal cancer (starts in the milk ducts) which is the commonest kind (70%) of cases. About 10% of cases are lobular (start in the breast lobules.) and around 3-6% of cases are the rarer medullary kind which you have. In medullary cancers the border between the cancer tissue and the normal tissues is relatively well defined, and according to one reputable site on the internet medullary cancers are generally treated in the same way as ductal ones, though statistically…all other things being equal the prognosis averages out slightly better.
Another interesting things about medullary cancers is that they are commoner among women who carry the BRCA1 gene. Many BRCA1 breast cancers are triple negative too.
So moving on to triple negative breast cancer-There is lots more information on the internet about triple negative breast cancer than there was when I was first diagnosed. I think this is partly because there has been a surge of research interest recently. In the past triple negative disease has been very under researched. As others have said triple negative bc is treated through surgery, chemotherapy and radiotherapy. Tamoxifen and a group of drugs known as aromatase inhibitors have been developed for er+ and pr+ cancers (Oestrogen and progesterone positive) and made big difference to disease free survival times for those cancers. Recently too herceptin has been developed as a targeted therapy for her2+ cancers. Now attention is turning to triple negatives…and not before time.
Breast cancer is not just one disease but many and yes triple negative bc is an aggressive kind, but always bear in mind that cancers are also unpredictable and many things affect survival and outcomes. e.g. number of lymph nodes involved, whether there is vascular invasion, size of tumour. Research in the laboratory is going on to find out what makes triple negative breast cancer grow…hopefully this will lead eventually to the development of new treatments which target these growth factors. Clinical trials are going on mainly using chemotherapy drugs…some which have been used on other cancers. Triple negative cancers do often respond well to chemotherapy…some er+ and pr+ cancers don’t respond so well to chemo, but respond well to the hormonals which aren’t suitable for us.
Until 3 months ago I would have been telling you my story of being diagnosed in 2003, having loads of nodes with cancer, doing chemo and rads and mastectomy and now living very well. (I had also been misdiagnosed 7 months earlier.) All this is true…I was well and healthy for two and a half years after treatment finished…at the time of my desperate despair at diagnosis I would have never believed I could have that time or that I would ever laugh again or enjoy anything again. But the human spirit is a wonderful thing and we do somehow all learn to live with cancer…not only if we become happy long term survivors (and I know many) but also if we are not so lucky. Yes I have now got a regional recurrence and am back on chemo, but because I am informed I feel I can cope with this too. Well 'cope’ is the wrong word…but yes yes yes we do all find our own strategies for living with this. You will too.
By the way you might want to read an article I wrote for Breast Cancer Care Newsletter with Emma Pennery nurse consultant for BCC. It was last autumn’s issue and you’ll find it on the website. I’ve been trying to persuade BCC to produce a leaflet on triple negative bc for nearly three years now so please everyone who has contributed to this thread ask BCC when its going to happen. Your post Lynne shows how much it is needed.
I could write reams more. Of course you are scared…it goes with the territory, but you won’t always feel as bad as you feel now. The fear changes, comes in waves, and there is still much good life after and with breast cancer whether we become a good news story or a not so good one.
Very best wishes as your treatment starts.
Jane