Diagnosed at 40 with ILC on right breast er+pr+ Her2- in December.

mk24

I was diagnosed at 40 with ILC on right breast er+pr+ Her2- in early December and going through Maroondah Hospital. I have a 7 year old child and was devestated, routine mammogram only showed 2 lesions, Mri picked up 5 with largest being 3cm, lymph node was clear in pet scan and mri and ultrasound.  Waiting for sentinal node biopsy and single mastectomy with immediate recon & Diep flap was suggested. Surgery is a tentative 11th of February. Two and a half months after diagnosis. the waiting has been awful.

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 and 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. im worried that if something starts developing in the left breast and need to have lumpectomy, it seems this can lead to recurrance and mastectomy?  So, I'm wondering if i need to have a more in-depth discussion regarding this with breast surgeon? 

Is anyone else going through something similar? 

arpie

Hi @mk24 - I am so sorry to see you having to join our select little 'club' ... the one no-one ever thought they'd be joining.   It is a real shock to the system, receiving a BC diagnosis - and the waiting can be horrible.  Mine was found in the Oct & I didn't have surgery until mid January (ILC) ... being regional, sometimes things move slower  

Re ILC and chemo - I think it depends on a bunch of factors that may indicate chemo or not ... be guided by your treatment team (Your Medical Oncologist will fill you in on the 'whys & wherefors'.) Try not to get get ahead of yourself re treatment options ... as they will usually only recommend treatment that will be beneficial for you and your longevity. 

Write down all the questions that you want to ask your surgeon & tick them off as he addresses them - Have you been given a Breast Care Nurse yet?  They may even sit in on the meeting with you - and you can ask questions of them before seeing your surgeon again.  Here's a 'general list' to check out, for some ideas of questions ....


Please Consider joining the private Reconstruction Group, where you can ask any questions in total privacy & see photos (before & after) of various types of reconstruction.  Click on this link and hit 'join'
https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

We also have a private group for those with ILC too, that you may like to join.  We try & keep up with latest verified info on ILC, as it is such a difficult BC to detect.  Click on this link & hit 'join'.
https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc

If you are feeling stressed, you may also like to listen to the Charlotte Tottman on "Breast Cancer - what you don't know until you do."  She is a specialist Breast Counsellor who was diagnosed 6-7 years ago & had a double mastectomy, choosing to remain flat.  You can read a bit about her below, too.  Her own reaction to her diagnosis was different to what she thought it would be - her podcasts are very easy to listen to & covers pretty well every emotion that all of us have felt xx. She had a double mastectomy & chose to remain flat.
http://www.drcharlottetottman.com.au/my-podcast.html

Take lots of deep breaths & just take one day at a time xx. Try & keep busy doing stuff you love doing as you prepare for the next surgery.  Stay away from Dr Google ... as a lot of the info on there is out of date & often doesn't relate to your own diagnosis.  And it will just 'do your mind in'.  This diagnosis mucks with your brain even more than your body, I reckon. 

Take care & all the best

mk24

Thx! @arpie

I have joined the ILC and Reconstruction group two months ago and had a read through them, and got some good info. I have also listened to Charlotte Tottman and Liz O'Riordian, the breast surgeon who got breast cancer. She had lobular and ductal on the same breast, and the chemo only worked on the ductal, she also had a recurrence on same breast in scar tissue (had mustectomy with implant). and decided not to do chemo again as it didn't work for her the first time round, instead she had radiotherapy, which had it's own issues.

I took the checklist to the surgeon and she had no time to look at it or listen, this was a month ago.
I might take it in again before surgery. as it's a public hospital, there are always breast nurses around and have been kind and talked to me. 

I was wondering if anyone had a similar situation to mine and could comment from experience?

Maybe I should post this in reconstruction group as well?

arpie

Sadly, Liz then had a 3rd recurrence and is now on treatment (injections) for life.  Sadly, she is also currently having treatment for severe depression as well after the recurrence & the recent losses of her mother & father      She has been doing SO MUCH for everyone else, I think she had forgotten to look after her own mental health  

You should be able to ring the McGrath foundation & be assigned one of their BC Nurses .... most who've had one have been impressed with them. 

Definitely put it on the reconstruction group  

take care xx

Tri

Hi @mk24 I was diagnosed with ILC. I became aware of it because I felt a lump, as you probably know a lump is unusual and a “lucky” warning in cases of ILC. 

I was er+ and pr+ but HER2+
I am conscious that you’re not HER2+ and that my chemo targeted treatment followed the usual regime for people with HER2+ attributes. 

So if this makes my experience irrelevant apologies in advance for the distraction! 

But I did want to share that my breast cancer has responded to neo adjuvant chemo. 

The pathology taken after 6 doses and 4 months of treatment, at the lumpectomy surgery, showed the tumour shrank from 3.8 cm to <1cm.
There were residual scattered small foci of “classical” ILC present, arranged in cords and clusters. No lymph node involvement. No “residual pleomorphic ILC” was identified. 

My ki67 score was considered low -  4%

On this basis my breast surgeon and oncologist did not consider further surgery necessary and instead I went onto have radiation therapy and another 7 months (11 doses) of a HER2+ chemo and immunotherapy, targeted infusions. 

I was also started on the aromatase inhibitors (Letrozole) after radiation therapy and will be on these for at least 5 years.
Sending you lots of positive energy for the steps ahead 🌸🌻

mk24

@Tri  Thank you and  for explaing it all in detail. I think the Her2 + or - protein does make a diffrence in terms of treatment. I am glad to hear it worked out for you. It is so individual. I'll have to wait and see what comes back from the pathology after the surgery.

@arpie  thx! I think Liz ended up having her ovaries out so she wouldn't have the injections anymore.
 They do have a Mcgrath nurse that I somethimes manage to see. 

SC75

Hi @mk24

Thank you for sharing your story; I truly appreciate your openness. I can completely relate to the feelings of devastation and uncertainty that accompany a diagnosis of invasive lobular carcinoma, especially when you have a young child to care for. As a 49-year-old mother of a 9-year-old, I understand how heavy that burden can feel, and it’s entirely natural to feel overwhelmed during this challenging time.

I also faced a similar journey, having had a tumor in my left breast and some concerning cells in my right. After a couple of unsuccessful mammogram-guided biopsies on the right side, I made the decision to undergo a double mastectomy. Like you, the wait from diagnosis to surgery lasted about eight weeks, and was excruciating.

I too experienced sentinel node biopsies on both sides, and unfortunately, one of my lymph nodes was involved, which meant I couldn't avoid treatment. My KI67 score was relatively low at 1-2%, indicating a slow-growing tumor, yet I know how much these scores can weigh on your mind as you contemplate your treatment options.

It’s so important to remember that each cancer journey is unique, and your decisions regarding treatment are deeply personal. Your concerns about chemotherapy and its effectiveness for invasive lobular carcinoma are completely valid, and I understand the anxiety that comes with questioning the best path forward. I went through a similar period of procrastination that led to my own anxiety.

Ultimately, I decided to undergo the Oncotype DX test. While it can be expensive, this test analyzes a specimen of your tumor and provides insights into the chances of recurrence, as well as the potential benefits of hormone therapy and chemotherapy. My recurrence rate came back at 15% (with hormone therapy dropping it to 6%), and the absolute benefit from chemotherapy was estimated at just 2.7%. Interestingly, the hospital's computer had initially predicted only a 1% benefit.

I was reluctant to consider chemotherapy as well, but in the end, I opted for a short course of 4 cycles of a type that is unlikely to have serious long-term consequences. I felt that I should pursue every possible avenue, but I recognize that this decision is personal. While my husband is incredibly supportive and caring, he shares his uncertainty about undergoing treatment for a 2.7% benefit, illustrating how everyone’s choices are different. Whatever decision you make will be the right one for you.

I empathise wholeheartedly with your anxiety about the upcoming surgery and the choices that lie ahead, particularly concerning reconstruction options. It’s crucial to feel supported and well-informed throughout this process. I encourage you to have an open and candid discussion with your breast surgeon—make sure to voice all of your concerns, including any potential developments in your left breast. You deserve clarity and comfort in the decisions about your health.

Please remember that you are not alone in this. Many others have walked a similar path and are here to support you. Take it one day at a time and allow yourself to feel whatever emotions arise. You are stronger than you realise. Sending you hugs and strength as you navigate this journey.

mk24

@SC75 thank for saying that. I really appreciate it. 
 Can i ask if you had any negative side effects from the short course of chemo, like hair loss, etc?

SC75

Hi @mk24

You are very welcome! I just started chemotherapy, with my first session on January 30. I did end up with an infection two days in and had to spend a couple of days in the hospital, but it was manageable but not what I was expecting. I've been told to expect hair loss, which makes me a bit anxious since it will change how I see myself, especially in front of my son. I’m not great with attention or sympathetic looks, but I know I’ll get through it. At the end of the day, it’s just hair, and it will grow back and my friends who have gone through this still look their beautiful selves without hair. These feelings are completely valid and unique to each of us.

Melski

Hi @MK24, Sounds like a similar situation to me, tumor left breast 15mm, no lymph nodes involved, e&p+ and HER-  I opted for a double mastectomy with tissue expanders for reconstruction. I chose double purely to lessen the chances of it coming back in the other breast
I also weighed up whether chemo was worth it for a less than 1% benefit, as this type of cancer doesn't really respond to chemo. I have chosen to just do the hormone blocker pills (tamoxifen) for 5-10 years and chosen not to do chemo. For such a small benefit I personally thought it wasn't worth going through chemo. Everyone is different of course, good luck with your upcoming surgery journey. 

TATA24

@mk24 Hello! We have very similar stories, I’m 41 and I have been diagnosed with the same kind of breast cancer except I had 6cm tumor. I have two little girls 7 and 3 and I underwent a single mastectomy as recommended by my surgeon and immediate reconstruction. Now weighing up the benefits of treatment chemo/radiation/hormone therapy and wondering how you are going with it all?