Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

Hi Karin, I'm tagging @ilcpfightee to make sure she sees your question about chemotherapy.

Karin, did you get your oncotype results in the meantime? What's next for you?

Hi
I’m waiting for my oncotype results. I have invasive pleomorphic lobular carcinoma and lobular carcinoma in my breast. I had a double mastectomy and am waiting for results.
Did you take the chemo and if you did for how long
Karin

I see Dr. Caroline Block at Dana and asked if she had any specifics on lobular and honestly I just hope they share knowledge and lobular just doesn't seem studied! Has anyone met with Dr Metzger or a lobular specialist. I had to beg to get a 6 month alternating MRI as I have high density still at 58 yrs old. But now my oncologist said she would sign off on MRI and I believe it is because the Radiologic Task force didn't think the new breast mammo guidelines went far enough as they support the FIND IT EARLY bill that is slowly getting on Congress' docket!

Thank you.

My heart goes out to you,as I know how difficult and overwhelming the beginning of this journey is.The many questions,fear of the unknown,and the sheer impact of such news alone are very difficult and challenging to handleEven though everything might be in turmoil at the moment,once there's a plan in place,regarding treatment options,a timeline as to what is the next step after diagnosis,what kind of surgery,what treatment follows next,when does it start,how long will it continue-once,these steps are known,it will help to ease the chaos and adjust psychologically to life turned upside down.One day at a time,one step at a time.Your daughter seems to have good medical facilities available,and,with that,the best care.That is a great relief!The fact that lymph nodes don't seem to be affected is encouraging news,though I have no knowledge about tissue involvement,(I had cancer in the lymphnodes and the lymphatic system,meaning blood stream,which was a not so good sign,but,chemo and radiation took care of even that).I also tried to follow the advice of only dealing with the situation on a day by day basis and concentrating on the present ,but not worrying about what might happen tomorrow,thus speculating and adding extra worry.Though I didn't always succeed,it was of great help and it has become my way of life.
I wish you,your wife,and,especially your daughter, strength,a positive mindset and mental energy,to guide you through your journey(and,yes,there will be days of feeling exhausted,hopeless and seemingly unable to cope,until we gather ourselves ,get up and keep going!)
All the best to you,
Sybille,from Vancouver,Canada

Thank u for this comment I’m going to send this post if u don’t mind to my 41 year old daughter for inspiration which her as well as myself and wife need desperately. We are just starting this journey. She was diagnosed few days ago and biopsy showed ILC 3 cm think lymph nodes ok but it has reached tissue . She lives in Washington state and we have heard good things about Fred Hutch cancer hospital and have a very good ranking like top ten. Now just trying to get the additional test required to move forward. Glad for you and thx for the post.

@estenbaf do you want to post a new discussion? Are you saying your daughter has invasive lobular cancer, 3cm?

Testing will tell her if her tumor is estrogen positive, progesterone positive and HER2 negative. In that case (ER+ and HER2-) a genomic test called the Oncotype will be done. The report will tell your daughter whether chemo is of benefit and also what the risk of recurrence might be with or without anti-hormone medications.

IF ER- or HER2+ the Oncotype won't be done.

According to the info below most lobular cancers are hormone positive and respond well to treatment. Lobular can be hard to find because it does not form clumps or masses.
https://www.healthline.com/health/breast-cancer/lobular-breast-cancer-prognosis-survival#prognosis
Let us know when you have more information. We cannot give medical advice but we can share our own experiences.

What is oncotype score.. just beginning our unfortunate journey.. daughter , 41 dionosed with IVLC 3 cm. Time for more texting.. anyone one with similar?
Advice ? Good luck to you..

Why radiation?

Hi! Fortunately my oncotype was 14 so chemo not recommended. I started full breast radiation (very small breasts) on 12/27 at Dana Farber- four down - 15 to go is the plan. I did get a few opinions on radiation and decided proton beam would not be best approach. Hope this helps.