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Is chemotherapy beneficial for lobular cancer (slow growing) need to weigh up if benefits outweigh the risks

Still_Smiling
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Hi I have a 7.5cm lobular tumour with a 4mm tubular tumour with LCIS and lobular cancerisation (DCIS in the lobule), one of thirteen nodes removed had cancer which had broken out of the node into the surrounding tumour, i also have perineural invasion ( cancer along a nerve).  This I discovered from my lumpectomy and ALND pathology report my surgeon only told me about the ILC and LCIS. I did not get clear margins, surgeon said could not remove more as he had taken out 9cm including margins and anymore would look abnormal, so next operatopm was a mastectomy (done 4weeks ago).  When I saw the oncologist they showed me the PREDICT tool so i could see how advantageous chemotherapy would be.  Treatment plan chemo EC and Docetaxel followed by radiotherapy and then ET + abemaciclib.   My hospital does not do a oncodx score or any form of gene test :-(.  Pathology report showed my Nottingham prognostic index to be 5.5 anything greater than 5.4 is very poor for survival more than 10yrs.  The PREDICT tool does not take into account the type of cancer or whether it is fast or slow growing. the patient data behind this tool would consist of mostly ductal patients, so I feel this is an excellent tool to predict O/S for ductal patients but not sure of its efficacy for lobular for chemo treatment.  Risks seem so high with chemo I am really worried about this damaging all my normal cells which grow at a normal rate and not any slow growing cancer cells.  Anyone know how chemo can destroy lobular cancer please?

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    Hello Still _Smiling, 

    I hope you're recovering well from the mastectomy. It's really difficult to have to make a decision based on the PREDICT tool especially if it doesn't take into account the type of cancer and whether it is fast or slow growing. I am not sure myself what its efficacy is for lobular breast cancer and it's such an important decision to have to make that if I were you, I would voice the concerns you mentioned here to your oncologist who will be best placed really to tell you whether they think chemotherapy would be beneficial and if the PREDICT tool is as effective in detecting whether chemotherapy would be beneficial for slow growing  lobular cancer. You will indeed need to carefully weigh up whether benefits outweigh the risks and for that it's worth discussing it in detail with your medical team and asking any questions that come to your head. 

    Feel free also to get in touch with our cancer nurses on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm and I am sure they will be happy to give you further guidance on this difficult question and point you in the right direction. 

    Other members of our community will have been affected by lobular cancer and I hope that they will be along shortly to share their own treatment decisions with you. 

    Best of luck deciding on the best course of action for you

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    When I voiced my concerns about chemotherapy, my oncologist referred back to the PREDICT site to show me that 8% improvement in O/S was a really good indicator for chemotherapy, apparently anything above 3% and chemo would be recommended to a patient.   

    My dad died from colon cancer the year before I was diagnosed with breast cancer, I spent a very long time sitting with him in the Macmillan Hospice.  I do not want to put my family through that, which is why I had a mastectomy, if I had been single I would have refused surgery.  I was not expecting chemo to be the next thing on my treatment plan.

    I have just realised that following the same logic I really have no choice, as frightening as that is.  Strange how just putting it out there has clarified things for me, thankyou Lucie for responding.

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