I have breast cancer in my EAR!

Hello everyone -- I was diagnosed with mixed IDC/ILC on 7/23, and I just learned today that I have bone metastases (upper right arm, left clavicle, and left lower back and hip) and a small brain met. I am so overwhelmed! I am sure I will be up all night reading through posts in this forum and all the helpful resources on this site -- but I just wanted to reach out and introduce myself, and share my story (so far).

I am 41 -- will be 42 in 2 weeks. Married, but no children. Strong family history of cancer on both sides -- but as yet, no one has been tested for genetic mutations. (I had blood drawn last week -- expecting results in another week or 2).

I had my usual screening mammogram last November, and all was clear. I also had a clinical breast exam in January, and it was unremarkable. At the end of June I noticed that my right breast appeared to be very full and firm. My breasts are on the smallish side -- 34B and not very full -- so it was quite noticeable. I waited a week to see if it would go away. When it did not, I scheduled an appointment with breast care. I got in for a diagnostic mammogram (bilateral) and ultrasound (right breast only) on 7/5. The mammogram did not show anything on the left, but there were new calcifications on the right that corresponded with an ill-defined 2cm mass that was observed on ultrasound. I had a biopsy of the mass on 7/16, and received the results of IDC/ILC (ER+/PR+/HER2-) on 7/23. Because my breasts are extremely dense, I had an MRI on 7/30, which showed diffuse disease throughout the right breast (explaining why it was so big!), and probable lymph node involvement, as well as an additional mass in the left breast. I met with the breast surgeon, medical oncologist, and radiation oncologist on 8/1 to discuss a probable treatment plan. They ordered a PET scan to assess for distant mets, an ultrasound of the left breast, and drew blood for genetic testing. At that point, the probable treatment was mastectomy on the right (and possible bilateral, depending on genetic test results and further assessment of left breast), followed by radiation and endocrine therapy. Decisions about chemo pending results of PET scan. The PET scan was yesterday (8/8), and the ultrasound was this afternoon (8/9). Ultrasound showed a solid 1cm mass that was suspicious (BIRADS 4), and biopsy was recommended. I am supposed to get a call about that tomorrow.

Around the same time I noticed the changes in my breast, I started experiencing extreme dizziness. I made my husband take me to urgent care on 7/4. They did a basic neuro exam and a CT, but didn't find anything. They gave me an urgent referral to neuro. Again, I had a brief neruo exam that was unremarkable -- she thought it was likely an inner ear issue (either Meniere's disease or vestibular neuritis), and gave me a referral to ENT with audiology and a short course of steriods. The earliest appointment I could get was 8/6. But the dizziness got better with the steriods, and was totally gone by the time I got my diagnosis on 7/23, so I didn't think anything of it. I kept my ENT/audiology appointment, though, and I'm glad I did! The dizziness returned on 7/27, with a feeling of fullness in my left ear and noticeable hearing loss. Audiometry confirmed that I have sensorineural hearing loss on the left, and MRI was recommened. The ENT (8/6) also recommended MRI, did a ton of blood work, and prescribed me a longer course of steroids at a higher dose. I mentioned to him that I had recently been diagnosed with breast cancer, and that I was concerned I might have it in my ear (as silly as that sounds). He acknowledged that was possible, but thought it was unlikely, due to my specific symptoms. Thus far, the steroids have helped tremendously, and I had the MRI this morning.

This afternoon, I got a call from the medical oncologist, and I immediately knew the news was bad. First -- because it was after 5:30 when she called. And second -- because they told me I wouldn't need chemo unless I had distant metastases. She then confirmed that I did, in fact, have distant metastases -- including in my ear (well... brain... but next to my ear!).

SERIOUSLY!? I HAVE BREAST CANCER IN MY EAR.

Anyway, she told me that the scheduler will call me tomorrow to set up appointments with the radiation oncologist to address the brain (EAR!) met, and the medical oncologist to address everything else.