I was diagnosed at 40 with ILC on right breast er+pr+ Her2- in early December

mk24

I was diagnosed at 40 with ILC on right breast er+pr+ Her2- in early December and going through Maroondah Hospital. routine mammogram only showed 2 lesions, Mri picked up 5 with largest being 3cm, lymph node was clear on pet scan and mri and ultrasound.  Waiting for sentinal node biopsy. A single mastectomy with immediate recon & Diep flap was suggested. Surgery is a tentative 11th of February. Two and a half months after diagnosis. 

my ki67 was 35-55% considered moderately fast and there was mention of short chemo after recon, but that depends on the sentinel node biopsy and if the ki67 has slowed down, due to having been put on Exemestane and Zoladex injection one month ago. 
How reliable is ki67? From what i have read on this forum and the LBCA website, it seems that ILC doesn't respond well to chemo & i really don't want to have chemo if it is going to cause more harm and not work in the end. 

Breast surgeon has said no need for double mastectomy/recon unless the genetic test comes back with something. Feeling nervous about single mastectomy/recon as you can only do the Diep flap once. 
I will also loose the nipple with option to add one later on as well as a breast lift.

has anyone else gone through something similar? 

Ktre

Hey @mk24, I had er/pr+ and her2- diagnosis in June 2021, at the time after biopsy to beat and lymph node area it was declared stage 2 aggressive with 2-3 tumors and no lymph node involved. Mastectomy of right breast recommended and at the time no reconstruction available in my regional city, surgery was done beginning of Aug and sentinel node biopsy found tumors in lymph nodes, full auxiliary clearance booked for end of August, more cancer found in lymph nodes and now 3 years later am living with metastatic breast cancer to the liver. I wasn't offered the second breast removal as they said wasn't necessary, I have since had it removed and stayed flat. If you want other breast removed push for it, it's your right.
I don't know what ILC means and have never been advised about or heard of ki67. I have since had 3D areola nipples tattooed on to my chest, they are amazing. 
Please push for as much info and hey ask tests that are avail. 
Good luck

HannahM

Hi @mk24
quite similar situation here. I’m 49 and diagnosed early November with er+pr+ Her2- in left breast. Had mastectomy on 20/11/24 (opted for no recon) and sentinel node biopsy. Lymph nodes and margins came back clear after surgery. Main lesion 2.7cm grade 3, ki67-2%. Surgeon told me a week after surgery that I was all clear and wouldn’t need chemo or radiation, just hormone blockers. Then I met the oncologist on 16/12 who burst my bubble and told me she thought I did need chemotherapy. 😔 Then I had an EndoPredict test done on the tissue taken at surgery; that measures the ‘absolute benefit’ of chemo.  That came back as high risk for recurrence so I started chemo on 15/1 and due to finish 30 May. Surgery went well and all healed nicely. Chemo sucks and I’ve only just begun. 

I don’t know what ILC means but definitely push for full info on the tissue removed at surgery to stratify your risk.
I can’t advise on recon because I opted not to have it. 

Good luck with it all. It’s a wild ride for sure x

mk24

@Ktre

was yours IDC invasive ductal carcinoma? mine is ILC (Invasive Lobular Carcinoma) grade 2b, hr+pr+ her2- don't have a stage yet, waiting for results from sentinel node biopsy i had done yesterday, then on 11th of Feb supposed to have right breast mastectomy with skin sparing diep flap. I will ask what the recurrance rate on other breast is and see if double mastectomy/recon is a better option. Ki67 is how fast the cells divide and the recurrance rate i believe. I am also waiting on gene test. 

mk24

@HannahM

mine is ILC (Invasive Lobular Carcinoma) grade 2b, hr+pr+ her2- don't have a stage yet, waiting for results from sentinel node biopsy i had done yesterday, then on 11th of Feb supposed to have right breast mastectomy with skin sparing diep flap.

I will ask what the recurrance rate on other breast is and see if double mastectomy/recon is a better option. Ki67 is how fast the cells divide and the recurrance rate i believe also. the higher it is the likely they are to push for chemo, and they also look at grade for same reason.
I am also waiting on gene test.

Good idea re: "push for full info on the tissue removed at surgery to stratify your risk."
Apparently the EndoPredict test or Oncotest doesn't work as well on lobular cancer, I heard this from the research team at Queensland University research centre talk. Things still feel so uncertain.
there is a free uk predict breast cancer app that oncs use too.  

Was yours IDC (invasive ductal carcinoma?)

Ktre

@mk24 I just went back and looked at into on cancer, I was diagnosed with aggressive multifolcal breast cancer

MicheleR

Hi @mk24,

I had ilc stage 2b in 2020. Grade 2 (moderately fast growing). I had a single mastectomy, chemo and radiotherapy. My lymph nodes were clear. Ive been on zolodex and exemestane for 3.5 years. 

I dont know my ki67 but maybe you can infer. It is unlikely that a double mastectomy will be offered because if no sign of cancer in that side there is no point. It wont offer you additional protection above the hormone blocking. You have no estrogen so the growth of existing tumour should slow. If you end up having a braca gene then they will consider it.

A mastectomy is quite a big operation and you are having a reconstruction too. Its enough for body to go through. 

I see you are having mastectomybtomorrow. Wishing you all the best. Emotionally, it feels better to have the cancer out and to be moving through treatment.

Michele

mk24

@Michelle_R

It's been 2 weeks post single mastectomy-diep flap and still recovering. 
My oncologist and i agreed to continue with hormone blocking therapy aromasin and zoladex and no chemo. My ki67 reduced from 55% to %20 due to hormone blockers. Lymph node came back negative and i got clear margin. She felt it might do more damage than help in my case. i deceded to not go ahead with it. but i was told to take the Zoledronic acid shot for osteoporosis.