am I alone in that i have a breast cancer which is oestrogen positive in the middle, but coated with an oestrogen positive cancer (like an egg to quote my oncologist) the oestrogen positive bit is the one that has set up camp in my liver. i am only on letrozole (femara) this also worries me as you ladies seem to be having load of drugs…not that i really want them!
Help Noz
Sorry i should have said oestrogen negative in the middle. In otherwords i have oestrogen negative and oestrogen positive breast cancer
Noz
Hi Noz, sorry as I am not in your situation so cannot comment, I am triple negative, but just wanted to say I often feel alone in how my disease is behaving, it does help when others in ‘my’ boat share their experiences so I really hope someone gets in touch you can relate with.
Nikki
Hi Noz
You are not alone - my position though not identical is similar. I had two biopsies on my brest lump within weeks of each other. One showed it as 7/8 on the Allred scale so highly E+ the other gave it a score of 70 out of a possible 300 (H score) so not very E+
I have liver Mets which proved to be E+ as they shrank after 3 months on Arimidex, unfortunately they then started to grow again. I am now on Tamoxifen and have a scan a week today to see what is happening!
There are others who are just on hormones and I am hoping that I get to stay just on hormones for months or preferably years!
Fiona
Fiona
i can’t tell you how glad i am to hear from you…I felt so alone.
I think we are very similar in that i had a liver biopsy which said the oestrogen positivity was very very high…though they didn’t give me a figure. and the one in my breast almost all oestrogen negative. i worry about this one as I fear that might spread too. I have just had my third MRI scan and am in a state awaiting the results. Please keep in touch with me
noz
jantharra
thanks for your reply…I too was told I was triple negative then came the correct diagnoses, too late the oestrogen + had then spread.
I hope you have someone in a similar position it is bad enough having breast cancer without it being a ‘difficult’ one
Noz
noz you are not alone!
my primary and my relapse were triple negative (both tested in two different hospitals), but my recent lung metastasis is ER+. I have been treated for 4 years with chemo and now I just started tamoxifen. It is not a wrong diagnosis, but the the fact that breast cancer is heterogenous and the cells that went to your liver were the ones that were ER+!
I hope you can stay on femara for many years!
take care
sab
sab thanks for this you have made things alot clearer! Is being very Er + a good or a bad thing?
N
Hi Noz,
I would say that being Er+ gives you more possible therapies to try, such as all the antiestrogen therapies (Tamoxifen, Zoladex, Armidex, Femara etc), while for triple negative you just have the conventional chemotherapy. Hormonal therapy is a lot easier on the body than chemo, although some people find it terrible, but chemo…chemo is hell!! I have being continuously on chemo for the last year and a half, and now I am on tamoxifen, and I can have a normal life, go out, go to the gym, work. With chemo, apart from the classical side effects, I had fever two weeks out of three, constant bleeding nose (embaracing when you are out for dinner and blood starts falling on your plate!), chronic and very painful mouth ulcers, terrible pain in the nerves of hands and feet, tears falling from my eyes costantly, and another million things…costant diarrea, nausea, I was so weak that some days I could’t even walk…anyway, I would do anything and cope with anything to survive as long as possible!
xx
sabrina
Sabrina
You seem to have gone through hell…but as you say we will do anything to survive. your story has certainly made me feel less sorry for myself!I am so glad i have found all you wonderful women to talk to, whist friends family are supportive and sympathetic, only people like you know what it is really like , and we can help each other with our stories.I have to say i have not had too many problems on femara,apart from a dry mouth not sleepnig due to night sweats and constipation from the adcal tablets! i take a herbal supplement called milk thistle which is supposed to be good for liver function…no idea if it works. alot of women seem to be going straight onto tamoxifen rather than femara…just wondered why this might be??
anyway hope the femara is working for me when i get my scan results next week …everything crossed!!
love Noz