Lobular Breast cancer

Hi I was diagnosed with lobular too. It had spread to my lymph nodes so I had Wide Local Excision and node clearance. I had Oncotype DX done which determined that I was low risk of it spreading or recurring so had chemo cancelled. I’ve just finished radiotherapy (some issues including covid) and trying different hormone reduction meds. I’m the opposite, I’m the first in my family to have cancer. 

Rachel

Thank you so much for your reply good to talk with someone who has this type of cancer.

As far as I know I've to have a mastectomy will find out more about this on  Thursday.

What is the Oncotype DX is that a test .

I had an old lump from 30 years ago then found a new one.

Can't believe the cancer is in the old lump just wonder when that changed x

The Oncotype DX is a test of the genetic make up of the lump. They can tell the likelihood of the cancer spreading or recurring. I was all geared up for chemo until the results showed that chemo would not be beneficial for the sort of lump I had. It’s not routinely done, and it needs to be HER2 - and less than 3 lymph nodes involved. 

Thank you for explaining that.

I will know more by tomorrow. 

Anxious time.

I hope you are well .

Hi Angua

do you mind me asking what grade you were? My health trust will only fund the oncotype for node negative whereas I am not but I’m thinking of paying for it myself. I’m grade 3 so unlikely it will be a low score but have heard from a couple of ladies with grade 3 low scores…..still debating as it’s very expensive. X

Not problem, I was grade 2 and had 2 nodes affected. My trust changed its policy and tested if less than 3 nodes. My score came back at 13. I didn’t know I was being tested until the results arrived and my chemo was hurriedly cancelled. More trusts are changing their policy. 

I will get my plan tomorrow so will update you.

Thanks again.

Thanks- yeah, I can see quite a few trusts do it this way. I think tameside are a little behind the curve. Seems silly as the costs would probably balance out for them not then having to fund chemo. 

x

I'm in Scotland .

I have a date for mastectomy and lymph nodes removal 15th March so not long.

The consultant did mention I may not be suitable for radiotherapy as I have Lupus.

I'm looking into this as very different opinions.

Want to have info before I see oncologist.

Also will phone my Rheumatology consultant. 

So much to do and think about.