Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

Posted by ilcpfighter @ilcpfightee, Sep 8, 2022

I was diagnosed with ILC Pleomorphic Type Level 3. I am waiting for my Oncotype and was wondering if anyone here had a similar diagnosis and what your Oncotype Score was? Mine was ER+ PR- HER2 -. Waiting is so hard!

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@sybille

I was diagnosed with invasive,lobular carcinoma ,grade 2,stage 3, 10years ago.After a double mastectomy,I had a break for three weeks,after which I was on chemo sessions,once every three weeks,for four months,followed by radiotherapy with 15 sessions.Without chemo my chance of recurrence was 75-I have never heard of chemotherapy not working for lobular cancer.My tumor was 11cm across,15 cm long,nothing looked very promising.I have not had a recurrence since.
Chemo saved my life!

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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.

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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

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@sybille

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

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Thank you.

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@windyshores

@delormv the doc's name is Otto Metzger

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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!

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@ilcpfightee

I got my Oncotype today and the number came in at 34. They recommended chemo but I have read studies that chemo doesn't really work on Invasive Lobular Carcinoma. Has anyone else had Invasive Lobular with such a high Oncotype? If so, what did you do?

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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

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@karinkjm

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

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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?

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