A concerned daughter - potential ILC

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Mariresa
Mariresa Member Posts: 5
edited November 2021 in Not Diagnosed But Worried

Hi everyone,

I found this blog really helpful to find out lots of info which helps me keeping my anxiety levels a bit down. Im really concern as my mom (61yo) recently did an ultrasound + mammo check and they found out she has a 2,5cm lump in her right breast which seems to be a lobular cancer. There's nothing more written on the paper the doctor gave her apart from this + armits seem to be all clear.

I wasn't present during the visit but apparently the doctor couldn't tell her if it was benign or not. He just told her that she would need to do an MRI next week ("to see if she has more tumors in the rest of the breast") and for sure she'd need to get operated asap.

This is the reason why i've been looking for info online and all I can read about is that damn lump it could be everything but benign. So i cannot understand why not telling her the truth? And also why not booking any biopsy but just an MRI? Im really confused and scared. Also ive read that ILC is really sneaky, so im afraid the tumor will be much larger than expected… last mammo + ultra sound was back in 2019 and came back all clear. No other symptoms apart of this small lump she could touch and what it looked to be a inflammation at the breast 6 months ago (solved). No breast cancer history in our family.


Hope someone had similar experience (or even just EXPERIENCE) to help me calm down a little bit.


thanks

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited November 2021

    Are you in the US? There is no way anyone would know from a mammo and ultrasound that she has a lobular breast cancer. Only a biopsy can tell you that. There would be a score on her paperwork at the bottom-or let us know the impression part? That's how you'll know if a biopsy is recommended. No harm in getting the MRI first, in the event they see anything else that may need biopsied.

    I understand it's a scary spot to be in, but please know once again, the only way to know what it is, is a tissue sample. Don't let anyone tell your Mom any different. That's not right.

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  • Mariresa
    Mariresa Member Posts: 5
    edited November 2021

    Hi ctm, thanks for your quick response. Im from Italy, as you could probably spot from my poor english. The paper literally says “likely to be a lobular hystotype” (hope the translation is correct, it‘s not easy to translate medical stuff, but this community seems to be the best encountered so far so Im happy to make an extra effort).

    Exactly… what I cannot understand is why telling her she would need to get operated before doing any biopsy? Is because he is 100% sure is malign? I know that from ultrasound you could spot differences between malign and benign tumors, but I was sure biopsy was always needed anyway. My main concern at this point is: is that any chance the lump could be benign?

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited November 2021

    "Likely" is not a definite. There is a chance that this lump is benign. The other thing could be they want to do a excisional biopsy? Much like surgery. Perhaps the lump is in an area of the breast that would make the other types of biopsies more difficult? Still, tissue sample needed to know for sure. Good luck, and let us know how it goes.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2021

    This is copy/pasted from the other thread you started. Your biggest question seems seems to be about imaging. Imaging is a start but not the final diagnostic tool, it is not usedas the sole basis for making the initial diagnosis.

    “Mariresa,

    I am sorry that your mother finds herself in this position. Imaging is not what yields a diagnosis but it is what leads to a biopsy and that gives you a preliminary diagnosis. The doctor has no "truth" to tell at this point because imaging is not what a diagnosis is based on. As to why a biopsy is not planned yet, I can only speculate that the doctor needs additional imaging. As for needing surgery ASAP, breast cancer certainly needs to be taken care of but it is not an emergency in the same way a heart attack or a stroke is.

    The vast majority of those dx'ed with breast cancer have no family/genetic history so that is the exception. LCIS, lobular cancer in situ and ILC, invasive lobular cancer are different. LCI makes it unclear as to what type of bc your mom has. Lastly, she is only 61. Please pass this info on to her and have her consider becoming a member. We also have a forum for family and caregivers that you might find helpful.

    ETA: I just saw that you deleted your post on the other thread you started. Take care."

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  • Mariresa
    Mariresa Member Posts: 5
    edited November 2021

    Hi exbrnxgrl, sorry for the double post.

    Of course I know she'd need to go through further steps and checks to get a proper diagnosis… Im just trying to understand if the reason why he told her to get operated soon is because he's 99% sure she has an invasive cancer even without a biopsy…. Because if that's the case then is better to be at peace with myself and accept that her lump is most likely to be malign.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2021

    To be completely honest, I have no idea why he would say that based on imaging. Yes, he can probably make an educated guess, and he might even be correct, but confirmation of breast cancer is via a biopsy. People have been surprised either way so it seems to be general practice in the US to not say anything definitive until after a biopsy.

    One small piece of advice. Try not to speculate or predict outcomes based on things you don’t know yet. This is quite easy to do in the age of Google, but Dr. Google is a very bad diagnostician! One day at a time, my friend.

    Ciao!

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2021

    Hang in there Mariresa, and your English is great, no worries. Great advice from the others.

    Indeed, they will need to do a biopsy before any other surgery to understand what they are dealing with, and if it is malignant.

    We're here for you!

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited November 2021

    Mariresa, have you asked the doctor how does he know it is lobular? I understand some countries don't do a biopsy but they go to surgery to remove the tumor believing that biopsy may spread the cancer cells. Probably that's what they have in mind. Also, rushing to get the tumor out. Honestly, I agree with them because in my case the biopsy has messed up my breast. Italy has many famous oncologists. Good luck to your Mom and keep us posted.

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  • Mariresa
    Mariresa Member Posts: 5
    edited November 2021

    My feeling is that the doctor is 99% sure is ILC. Since ILC is multifocal, he just wants to make sure she doesn’t have other lumps somewhere else and then maybe doing biopsy to confirm his diagnosis to every lump. So why waiting to book the operation by then?
    I made some research and in US you have a way to “tag” with a code/name the probability of malignancy of a lump discovered via mammo/ultrasound to send the patient to the final biopsy. I guess it’s mainly related with the way public health works there (via insurances). In italy luckily public health is free (paid by gov) so probably he is writing down his “guess” just to inform the next doctor who will do the MRI, what he’d need to looking for… don’t know… just guessing as well. Probably she would have been BIRADS 5 in US.

    Anyway, her MRI is on Friday… so I have just to wait (so easy to say, so hard to apply). I really thank you everyone for your support, its nice to know there’s a community here to help in case the diagnosis will be confirmed. I’ll keep you updated. My mother does speak english but not so well, so I guess I’ll be the only one to write.

    p.s. funny enoughI was just out (after months of psychotherapy) of hypochondriac problems which was causing me general anxiety, probably because of Covid… but my biggest fear was cancer. Funny twist of fate… should it be a sign to overcome my fears? Atm I feel the last person in the world who can deal with a parents cancer.

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