Anyone have nipple pain prior to their ILC diagnosis?

Hunts08
Hunts08 Member Posts: 14
edited November 2018 in ILC (Invasive Lobular Carcinoma)

Did anyone have nipple pain prior to their ILC diagnosis?

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  • sherrmue
    sherrmue Member Posts: 25
    edited April 2018

    Yes, Hunts08. Daily shooting pains from both nipples up into both axilla that became increasingly painful and frequent over a two year period. Also intense let-down sensations. Yes, I’d been seen, had imaging, numerous biops, but you know how sneaky ILC can be. Was told “breast cancer doesn’t hurt”. I was pre-menopausal so my pain was contributed to hormones. Well, my doc was way off base and I knew these sensations could not be normal

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2018

    In a word--no.

    I found my problem through a random self-exam.

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  • sherrmue
    sherrmue Member Posts: 25
    edited October 2018

    Sorry I’m so late to respond to your question. Yes, I had severe shooting pains behind my nipples which radiated out to the edges of my breasts. I was having mammos and biopsies. ILC had invaded my entire chest, however was not visible through imaging and biopsies simply happened to hit a cancer free spot.. I’d had these shooting pains for at least a year, if not two. I was also having let-down reflex sensations at an ever increasing rate.

    My advice since 2010 is: if you believe there is something wrong with your breasts, be a nuisance and don’t take no for an answer

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  • Hunts08
    Hunts08 Member Posts: 14
    edited October 2018

    Thank you for the response. If you don't mind me asking, how were you finally diagnosed? I've had two MRIs this year. The first one was in February, but I had some issues with being claustrophobic so there was a lot of movement, and they wanted me to repeat in August. I did, and they said that everything looked fine. I've seen a surgeon but he said that without seeing anything on the MRI that it would just be guessing as to trying to find the source. What bothers me the most is that no one can tell me the source for this pain/sensation. They keep telling me that it's just fibrocystic changes, but it's only on my left side, and it is localized to one area. I have also never had problems with my breasts. I've considered going to Mayo as they have another type of imaging called MBI (I think??).... I'm scheduled for a mammogram/us in February of next year, so I have also considered waiting to see if anything shows up there.....

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  • dakrock
    dakrock Member Posts: 99
    edited October 2018

    Yes Hunts 08 

    I did for sure and lots of itching on the breast. The itching came and went so I didn't think anything of it.   I also had a discharge only once from the nipple.    

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  • MoonGirlJess
    MoonGirlJess Member Posts: 267
    edited November 2018

    I had what felt like a lightening bolt sensation through my left breast for at least 2 years. Mammo x 2 negative. Gyn blew me off.

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