Has this happened to anyone else

Hi Poppy 55

I have recently been diagnosed with triple negative breast cancer and I'll be starting chemotherapy soon. 

I can't answer your questions but noticed that you haven't had any replies yet. I did a search in the group for previous posts which mention 'capecitabine' and found these for you to have a look through. You could respond to the more recent ones if you think the poster might be able to help you further.

As for whether triple negative can change back to ER positive, this might be a good question to post in the ask a nurse section of the online community. If you'd like to do this clicking on the link I've created will take you straight there and one of the specialist nurses will aim to reply within 3 working days.

While you're waiting for replies it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi Poppy,

My wife's cancer was similar. Initially it was ER8, PR8, HER2-, and after chemo, surgery and radio she was put on tamoxifen.

She developed a bad back and neck, and a PET scan showed tumours. They biopsied them and they were triple negative.

She was given carboplatin and taxol, and had a complete response, so they dropped the taxol and just kept the carbo as maintenance.

Then a scan showed in had come back in her lower back, and was also in a few lymph nodes. They biopsied again, and it's ER8, PR2, HER2-.

So it seems that the receptors can "flip flop". Had it sill been triple negative, I think they were going to do cape next.

She's now on Palbo and Letrozole, and we're waiting for the next scan.

My understanding is that these cancers are a mix of different cell types. So your initial ER4 means that half of your cells (the max is 8 I believe) stained positive for ER, and it stands to reason that the other half were ER negative. 

So anastrozole took care of the ER+ cells, but didn't work for the ER- cells, so they kept growing.

With my wife I wanted her to keep taking tamoxifen as a "salvage treatment" when she was diagnosed with triple negative, but the oncologist said it was pointless. I think she may have been wrong.

Hopefully the cape will take care of the triple negative cells for you. Triple negative usually responds very well to chemo.

Anyway, I hope you find this helpful. Best of luck with your cancer journey.

Andy

Hi Andy

That was very useful thank you.

I have an appointment with my Oncologist today and will discuss with him my concerns about my cancer cells flip flopping from ER+ to triple negative and my concerns of ER+ cells returning as he has taken me off Anastrozole.and should I be put back on it.

I have my first scan this month to see how the Capecitabine as worked, as you say this is particularly efficient in dealing with triple negative, but not sure on how it reacts to ER+.

Thank you once again I wish you and your wife all the luck in the world.

Poppy