Second opinion and receptor status for multiple diagnosis

Living with secondary breast cancer Supporting each other and sharing experiences
1

Hi everybody 

I am looking for some advice regarding my Mums mestatic cancer.

My Mum was first diagnosed 22 years ago with ER+ breast cancer.

She had a second breast cancer  5 years ago HER+.

2 years ago a locally advanced recurrence which was ER+. They said this was a recurrence from 22 years ago.

1 year ago met to lungs. Treated as ER+ as this is what the locally advanced recurrence was previously.

This week brain mets discovered but i suspect these were present from the same time as lung diagnosis but no brain scan at that time. Diagnosed after a seizure. 

Progression on hormone therapy.  I have always worried that the lung mets could actually be a recurrence of the HER+ hence why hormone therapy has not been successful.  Lung mets have been to small to biopsy. I suggested herceptin but they say they cannot give this without a biopsy. 

Not yet seen oncologist regarding treatment for brain mets but emergency care doctor suggested it may be whole brain radiation. 

Could anyone please help with any opinions on where we can go from here. I am worried she may not be getting the correct treatment? 

One part of me says its more likely to be the ER+ after the locally advanced recurrence (they could not get clear margins as it had grown onto the chest bone). Another part of me is now thinking HER+ as i know this often spreads to the brain. 

Also how do i go about getting a second opinion? Do we request a second opinion at the same hospital? Pay privately at a different hospital? Any recommendations please? 

My Mum is 65 and a warrior :slightly_smiling_face:

Thank you so much for any suggestions and thank you for being here (even though i wish you wasnt).

Take care all and have a great weekend X

2

Hello Febstarter,

Thank you for your post.

I am sorry to see that your post hasn’t had any response yet. I am hoping that our members will be able to see it and provide their advice or experience.

In the meantime, for clinical questions, please know that our Nurses are always here and happy to talk. You can call them on 0808 800 6000 Monday to Friday 9am-4pm, Saturday 9am-1pm. Or you can post on the Ask Our Nurses board here on the Forum to speak to them.

Sending you our warmest wishes,

Dan

3

Hi

Although I can’t answer all your questions as your Mum’s situation sounds quite complicated I do know about getting a second opinion.  You can either pay privately or get a referral from your GP or oncologist.  This normally takes place at one of the main cancer centres which are based around the country which is my experience.   The one closest to me is The Royal Marsden but there are others.  Generally you are seen by a consultant or professor who has seen more cases and therefore has more experience/knowledge and been involved in more trials and research.  The hospitals also tend to offer trials (if any are suitable) as they are run from these centres of excellence, not normally from regional or local hospitals.

Good luck to your Mum.

Nicky x