Invasive Lobular carcinoma, ER8, PR7, HER2 negative - Grade 2 - anyone have the same?

Thank you look after yourself too and you’ve got this x

Hi Jacster,

How are you doing? Hoping you had positive results following surgery?

Think I may have been diagnosed with similar - ER8/PR8 HER negative, Grade 2 invasive lobular carcinoma. MRI suggests 23mm which is larger than mammogram and ultrasound had suggested. Currently awaiting biopsy results for left breast before treatment plan is agreed. So far consultant is suggesting lumpectomy and sentinel node biopsy, 5 day radiotherapy, 5 year tamoxifen. MRI and Ultrasounds suggest no lymph node involvement but I am so scared that may change after surgery….and then chemotherapy may also be on the cards?? Can anyone offer any reassurances? Does HER2 negative mean no chemo?? Am confused….

Hiya - yes, your diagnosis sounds the same as mine.  Did they give you your Ki67 score? Mine was 13%. I get my results on Monday (they phoned me today to book it) it has taken sooooo long because of the Xmas break , but I saw my macmillan nurse a couple of days ago and has told me unofficially that the results look good so I’m hoping no more surgery!

I was told that chemo isn’t necessary for this type of cancer (and because it was HER2 negative) so I’m praying that it’s still the case. It was taken off the table right at the start for me… I’ve been told possible radio therapy and letrozole (I’m 58 so through the menopause).

The ultrasound initially suggested that my lump was 9mm and then after my MRI I was told it was in fact 33mm! But it didn’t change the prognosis or grade. The surgeon told me my big boobs helped because he could take extra margin… he took about 5cm in the end. My surgery was 4 weeks ago. Lumpectomy and sentinel lymph node removal. 2 scars. One on my boob and the other under my armpit. Boob is fine and healing well but the armpit is causing me all sorts of issues and is still really sore. 
it’s such an uncertain time and i still can’t believe it’s happened tbh. One minute fit n healthy and the next I’m facing surgery and medication… 

Sending you positive vibes and the best of luck, the waiting is the worst x

Gosh it’s such a long wait isn’t it? Sending positivity also and keeping everything crossed for you for Monday! My Ki67 score was 17% albeit not sure what that means. I am sure it probably was explained but there is so much to take in and I get very anxious - so perhaps don’t always take everything in as I should!

The long wait has honestly been torture. Dark thoughts have taken over several times! yours is a low score too. I think it’s to do with the rate the cancer multiplies (aggressiveness). My consultant hold me mine was low which was good news. He said they wouldn’t start to worry unless it was at 40%… 

So much to take in. I had constant questions and just have driven my lovely macmillan nurse nuts at first… honestly the nurses are so knowledgable. You should speak to them to try and reassure you. I did! 
I’ll update on Monday after my appt and let you know how i get on x 

Oh heck. The last thing any of us here need are dark thoughts…..but it’s really hard not to let the mind wander off to those scary places! Am trying to keep myself busy to stop the negativity from intruding…..but gosh it’s hard!! Thanks for reassurance re Ki67 score - much appreciated. I have nagged the breast care nurses incessantly- they are SO patient and have been able to ‘talk me down’ on more than one occasion! Sending positive vibes for Monday x

Hi Jacster. Was thinking of you today. Hope the appointment went well and that armpit issues have been resolved?

Ah thank you. I’ve just pit a post up headed results finally which details it all… no ,roe surgery for me - wooop! Still lots of decisions to make. Armpit isn’t healing very well - it’s still sligh;y open in places. I’ve been told to keep it dry and let the air get to it… easier said than done but I’m trying (and stinking a bit if I can’t wash) lol