newly dx ILC mom age76-Question about inverted nipple/nodes?

chasingdreams
chasingdreams Member Posts: 23
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi everyone,

I am here for my mom, age 76, who has just been DX with Left Breast Cancer, ILC.

I will state here, that even though she just rec'd Dx, she has already decided on a bilat masectomy- BMX.

I live in Los Angeles.

My mother lives in a small community 1000 miles away.

brief history:

for the past nearly 5years she has complained about an inverted Left nipple to her doctor. At one point the Dr tried to manipulate it back "out" into proper position. My mom was concerned and questioned that she might have breast cancer. Because my moms yearly Mammogram was always negative, the doctor always told her not to worry!!

My mom continued to worry... and now finally her annual mam showed a suspicious area. Ultrasound showed it to be a solid mass approx 1cm. after biopsy, rec'd Dx of "infiltrating lobular carcinoma" of her left breast behind the nipple.

 Final DX: ILC Left breast Retro Aerola Lesion

((Q-does this mean it right there at nipple? and what caused her inverted nipple??))

------------------------------

My mom will be meeting with a Gen Surgeon next wk.  I will not be there. BUT I have found a Breast Cancer Advocate who may be able to attend this appt with my mom, and take notes etc, be her support etc, and make sure Questions are answered. She can't get in to see the (only) Breast Oncologist until Feb. 26th.

concerns:::

*We do not know the STAGE yet? Is this normal? I gather the staging is complete After BMX?

*NO other tests have been done- Is this OK?  I have read many women had breast MRIs before surgery?

*should she have oncotype testing done?

*does she need BRCA testing?

*is it OK to wait 4wks to see the oncologist??

Finally~ the PLAN is for my mom to receive information/treatment plan from this Surgeon, then come here to LA where she will go UCLA/Revlon Breast ctr,have her surgery  and possibly stay here for follow up treatment etc or go back home- which is why we do want to establish her with an oncologist/surgeon where she actually lives. 

==========I am continuing to read and gather information and I want to thank everyone for taking the time to read this, and possibly offer some advice as to what we(she) should be doing, and maybe what comes next, so we are prepared. Thanks again :)

PS i edited this so it wasn't so dang long!


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Comments

  • Racy
    Racy Member Posts: 2,651
    edited January 2013

    Hi, sorry for your mom's diagnosis but you seem to be doing an excellent job of organising treatment resources for her from afar.  

    Although her tumour is large, the other characteristics seem favourable so hopefully it is very treatable.

    Surgery will normally be the next step, unless they decide to do other scans beforehand. It is good if she has a specialised breast surgeon.

    She would then normally see an oncologist to discuss follow up treatment such as hormonal therapy, radiation and/or chemo.

    Keep posting developments here and we will guide you every step of the way.

    Wishing your mom and you the best.

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  • chasingdreams
    chasingdreams Member Posts: 23
    edited January 2013

    hi racy!

    thank u for your response, after reading it i was worried hers was considered big tumor? and then realized way i wrote size it looks like size 9 or 10 cm.

    i meant 0.9cm.

    sorry about that.. my mom read 9over10 or 9tenths to me, and i used slash key when i should've used (.) and so i have corrected that!

    glad to hear i am on right track as far as the steps she is at. there is so much to learn. so quickly.

    unfortunately i just got off phone with her and she thinks maybe she can just stay home and it get it all done and doesn't need to come down to LA to breast specialist for their possibly and presumed , more expert opinion/treatment.

    *sigh*

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  • Racy
    Racy Member Posts: 2,651
    edited January 2013

    Oh Chasingdreams, 0.9 cm is much, much better.  Let your mom go to the doctors near her and see what they say.

    She will hopefully be eligible for the Oncotype test to guage her recurrence risk and hence the possible benefit of chemo.  Hopefully your mom won't need chemo and will be able to take an aromatose inhibitor, such as Femara. Femara has been proven to be very good for ILC.

    Going by the characteristics of your mom's cancer, it may be 'garden variety', ie common and easy to treat with not very specialised expertise required. It is often useful to get a second opinion though.

    Maybe your mom will authorise her doctors to talk with you on the phone so you can ask about anything that you are unsure about.

    Keep in touch. (Glad to hear you made a typo on the size).

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  • new2bc
    new2bc Member Posts: 559
    edited January 2013

    Chasingdreams,

    My Breast surgeon told me that ILC does not respond well to chemo. Since the tumor size is small (.9 cm), maybe her doctor does not even suggest chemo which is a good thing because of your mom's age. You are a very good daughter.      

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  • chasingdreams
    chasingdreams Member Posts: 23
    edited January 2013

    hi,

    thanks for votes of confidence, i am trying to do best i can from far away....

    met with local surgeon today, feels optimistic chemo would not be needed, but did suggest she receive oncotype testing after surgery, did not rec BRCA d/t her age and no family history of BC.

    he also said lumpectomy/radiation or masectomy- she will lose that nipple-

    turns out the tumor is literally rt there under her nipple and he looked at 2009 mam- he said you can see the inverted nipple and right here it shows the tumor! SO i think he just said the radiologist read it wrong! he did also say, something about the radiologist would't know to look for it since nipple starting to invert, and he wouldn't know that.... idk. it was confusing. you'd have thought the dr would have stated concerned re nipple inversion! guess not. never assume.

    my mom said nothing. i was on speakerphone and let it go. for now.

    now after this appt my mom has more to think about re MX and if should get the BMX (surg said medicare won't cover good breast) soooooo that's all i know for now.

    i'm exhausted. i can't sleep and i feel like i know WAY to much re BC and yet i still am learning sooooo much MORE! can't BC and Ca in general be beat already??? as in a cure.... *sigh*

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