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Invasive Lobular Cancer - Chemo or not

gloria007
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Hi ALL< 

I was diagnosed with Invasive Lobular Breast Cancer two months ago:

ILC, 22mm, Estrogen positive, Progesterone negative and HR negative. The tumor was removed surgically (mammoplasty) when Sentinal Lymph Node was removed and his biopsy showed that it was negative (he was not infected with cancer). The margins around the tumor were cysts. Genetic analysis (prosigna) showed a "medium" level of cancer recurrence. The PREDICT predictive program (used in England) shows the chances of 10th annual survival:

• Operation 78%

• Chemotherapy 4%

• Hormone therapy 4% (graph attached below)

breast.predict.nhs.uk/tool

 

Reading the latest scientific papers, I know that Invasive Lobular Cancer is present in only 5-10% of all breast cancers and that the prognosis is not as good as for Invasive Ductal Cancer (IDC). I also learned that chemotherapy in ILC is not as successful as in IDC.

 

The Oncology Commission has informed me that I am on the verge of considering the benefits of chemotherapy and it is up to me to decide for or against chemotherapy. Both my parents died relatevely early (64 and 67) of cancer (gastrict cancer and rectocolon cancer). The big decision is now up to me to decide whether to consent to hemotherapy or not.

 

I would be grateful for your comment / and your experience in treating this unusual breast cancer. Thank you!

  • Offline in reply to Moll72

    thank you for the lovely summary. What is EC chemo? What does EC stands for ? hope you are well and healthy! 

  • Offline in reply to Moll72

    you must be very healthy and brave so minimal effect :-) What does EC stands for ? hope you are well and healthy! 

  • Offline in reply to gloria007

    Hi there  It stands for Epirubicin cyclophosphamide. That's just the names of the drugs. I am doing really well thank you. Hope you are too x

  • Offline in reply to Moll72

    thank you. i am told i will be having 4xTC 

    Taxotere (docetaxel) and cyclophosphamide (TC) given the node negative scenatrion. 

    Also learnt that my tumor is lobular but agreesive: Invasive pleomorphic lobular carcinoma (PLC). and htis is the reason it was classed as Grade 3. This is subtype of invasive lobular cancer which compromises approximately 1% of all epithelial breast malignancies and is characterized by higher nuclear pleomorphism and poorer prognosis than classic invasive lobular cancer (ILC). So chemo is now MUST and I feel good aboout choosing to go for it. 

  • Offline in reply to gloria007

    Wishing you all the very best of luck with your treatment. X

  • Offline in reply to gloria007

    So refreshing to read someone looking at research. My consultant absolutely hates the fact I research and ask questions to the point I am looking to change to someone who actually treats me as an individual and not a statistic. Im sorry I can't help as I have IDC but will be looking at whether I need chemo or not by using an ONCOYPE or similar test. As someone young (46) and healthy I want to improve my chances later on by throwing everything at it now. I've read further that you had to have the chemo. Wishing you all the luck on this most unwanted of journeys xx

  • Offline in reply to agapanthus

    hi Agapanthus, 

    I am a resercher myself (not medicine) and I want to know and understand what is happening to me. Yes change the Oncologist if you do not feel he/she is responding to your needs. partof the healing is also being happy that you get what you want.. your needs are to know more so you shoudl get that. Yes Onco is ok, Prosigna is ok too and Mammaprint is the best is does not have an Intemediate risk (only high and low) so you canmake the decission about chemo straigt away. I was "alone" in my reserch for 3 months and than I join international facegroup for Lobular cancer which has been so helpful. Sharing scientific reserch, paper, experinces etc... INternational also meant that I can share with my Onco what is happening in other parts fo the developed world and he was open to my suggestions and alternative approach. Goos luck and let em know if you need anything else, x

  • Offline in reply to gloria007

    Thank you. I will continue to ask the questions. This is my body, my journey and how I deal with my diagnosis. You are right. Wishing you all the best xxx

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