New here and pretty scared

Bumping for BeachyGrl. Any other ILC people (or IDC people) who can share? She could use your support during this diagnostic process.

(I answered her in the stage iv forum, but explained that since we certainly do not know she is stage iv, this would be a better place to discuss.)

Beachygirl, I am another ILC member in here. I understand how scary this is until you have a treatment plan in order. Then, there is a black cloud that usually lasts the first year, then you get used to and discover the "new" you. The good news is that ILC is a lazy cancer and takes years to spread. Second, as Hanhah mentioned, it is responsive to anti-hormone therapies. So, there is a medication for this type of cancer. The bad news is once you are diagnosed with cancer, you worry about every ache and pain you didn't have before that can be wear and tear from living life . I go to Dana-Farber and will be happy to give you some more info if you are interested. You can send me a message if you prefer.

Shetland Pony is a wealth of information about ILC. SP, do you know anyone who had ILC in the eye? I read it is one of the places that can go. Ay!

BeachyGrl, I sent you a private message.

Beach2Beach is right--ILC tends to recur later rather than earlier, like IDC, which makes our dxes terrifying in themselves.

However, we have to trust that (if we are taking an AI) it is working, and get regular follow ups with our MOs, live as healthy a lifestyle as we can, etc. I have ongoing, early onset (teens) generalized anxiety disorder, as well as cancer-related PTSD, and am now suffering from episodic vertigo (it's often brought on by stress, and this is without a doubt a stressful time for so many of us). I also tend to become very anxious about a month before each check up and lab work. My friend, who has lived through two stage IV ovarian cancer dxes in the past decade, said we live six months at a time. I agreed with her completely.

Claire in AZ

Hi Beachygrl,

I was diagnosed with ILC and a positive node back in March, but had a second round of biopsies done after my MRI showed additional areas of concern and that pathology was inconclusive and they called it IDC. My MO says I have IDC, DCIS, with a "lobular component"?? Whatever that means? Anyway, we knew immediately that I had at least one positive node and the CT scan showed potentially more, so when they performed my mammogram, they took all level 1 axillary lymph nodes as well. Prior to my surgery, the MO ordered CT with contrast and a nuclear bone scan to look for any metastatic signs, thankfully they were mostly clear (some enlarged supraclaviclar nodes and a couple "bone islands" are being watched). I had a low Oncotype score, but given my age and the 4 positive lymph nodes, my MO recommended 4 rounds of TC chemo and I also completed 15 rounds of accelerated radiation treatments. I just started ten years of hormonal therapy with anastrozole. The biggest concern for my MO regarding the "lobular component" is a fear of a new cancer in the opposite breast. She said that we will need to monitor the right breast closely as lobular cancer seems to be mirrored on the other side and harder to detect. I wish I had the opportunity to do a double mastectomy so that I didn't have to worry about every ache and pain, but with COVID it was considered "elective" and as there was no evidence of disease, it was not allowed. Just had a mammogram on Friday and things looked good!

The summer before my BC diagnosis, my eye doctor discovered a "chorodial nevus" in my left eye and once I learned I had cancer, I panicked worrying that it was indeed cancer too. A visit to the ophthalmologist ruled out cancer, but nevertheless, I am always worried about it. I did suffer from episcleritis (an inflmammation of the eye) and was treated with steroids for a month during my chemotherapy. There have definitely changes to my vision in the last year, so plenty of reasons to worry, but the ophthalmologist seemed very confident that I shouldn't need to. Trust your eye doc and don't let it panic you .

You are quite lucky that your cancer is ER/PR+2 HER- as that means you have many effective treatment options available and a better prognosis! Chemo is probably in your future, and it is tough, but you can do it and there are wonderful ladies here to support you. It's natural to worry that every new pain or strain is a possible spread, but having a little faith and taking things one day at a time is all we can do. My therapist said to me that the only thing we can control is our positive attitude and that is definitely one thing that I won't let cancer steal from me! You got this!

Cheers,

Sabrina

Hi Hannah,

I'm new to the site. I was diagnosed on original biopsy (10/30/2020) with Microinvasive carcinoma with lobular features ER/PR +, HER2-; ALH And ADH. Nothing showed up on follow-up MRI prior to surgery. Decided on lumpectomy. Path from lumpectomy didn't show any additional invasive cancer but showed classic LCIS. Sentinel node negative. Waiting to see RO and MO on Tuesday.

Reading your post was like reading a blueprint of my other ailments over the last two years. Most within the last 12 months. I had/have an adrenal adenoma. Upon follow up scan lung showed 'ground glass opacities' and inflammation. Treated me for pneumonia. After recovering from that ended up with shingles. Although I didn't have the classic rash/lesions. But multiple docs said shingles. Multiple upper respiratory infections. Bloodwork showed Epstein Bar antibodies through the roof. Prior to all of the about 18 months ago I had iritis in both eyes.

Were your diagnosis’s linked to the cancer?
Any suggestions on what I need to point out to the oncologists?

Thanks!