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Topic: Anyone have nipple pain prior to their ILC diagnosis?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Apr 19, 2018 03:29PM

Hunts08 wrote:

Did anyone have nipple pain prior to their ILC diagnosis?

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Apr 22, 2018 09:28PM sherrmue wrote:

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

Dx 7/24/2010, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 15/30 nodes, ER+/PR+, HER2- Dx 10/2010, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, ER+/PR+, HER2- Dx 10/2014, ILC, 6cm+, Stage IV, metastasized to bone/liver/other, Grade 2, 15/30 nodes, ER+/PR+, HER2-
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Apr 24, 2018 10:39AM claireinaz wrote:

In a word--no.

I found my problem through a random self-exam.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Oct 25, 2018 03:18PM sherrmue wrote:

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

Dx 7/24/2010, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 15/30 nodes, ER+/PR+, HER2- Dx 10/2010, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, ER+/PR+, HER2- Dx 10/2014, ILC, 6cm+, Stage IV, metastasized to bone/liver/other, Grade 2, 15/30 nodes, ER+/PR+, HER2-
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Oct 25, 2018 03:30PM Hunts08 wrote:

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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Oct 26, 2018 04:34PM dakrock wrote:

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.    

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Nov 2, 2018 12:54PM - edited Nov 2, 2018 12:55PM by MoonGirlJess

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.

Pleomorphic Dx 6/6/2018, ILC, Left, Stage IIB, Grade 2, 3/9 nodes, ER+/PR+, HER2- Surgery 6/21/2018 Chemotherapy 7/29/2018 AC + T (Taxol) Radiation Therapy 1/21/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/19/2020 Prophylactic ovary removal

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