Me too

Dennyse

Here I am...just diagnosed on 5/31/16 after mammogram, ultrasound, and core needle biopsy on my birthday. Diagnosis is invasive lobular carcinoma. I have no other specifics. I meet with my "team" on 6/7/16 for details of pathology, staging, and treatment options. I have a history of atypical lobular hyperplasia in my L breast, but this is my R. So I know I am in for a long ride. I am trying to stay rational, but it takes a lot of energy.

Icietla

Welcome Dennyse. My sincere sympathy. We are here for you, on that long ride right along with you. We are all Brothers and Sisters here. Take a look through the ILC section here on BCO, and read through some threads there, where you can learn a good deal about ILC. Now that you are diagnosed, your Treatment Team may want to start with your choice of surgical treatment. Surgery options will be recited and generally described to you. The relief of having your treatment underway will come sooner if you know already by then what surgery is right for your case. Learn what you can about ILC and surgery options before then, give yourself plenty of quiet time to reflect on your own needs, preferences, and concerns, and make the decision that is best for you. That decision, you must make for yourself, entirely self-guided from all your own circumstances and your own learning.

Sunnyone22

Hi Dennyse - sorry to find you here but glad you found your way to BCO community. Like you, I was diagnosed with ILC. lcietla gave you excellent advice because you will likely have several options for surgery. Listen carefully to your BC and what they have to tell you. Get a second opinion if you want.. (I did.). Many advise to take someone with you to appointments because so much is covered. I'm by myself, so I took my smartphone and recorded my surgeon and oncologist appointments. It was very helpful to listen to what was said a second (and even third) time - gave me a chance to absorb what I heard.

Most importantly, after you have gathered necessary information, listen carefully to what your intuition tells you. You'll know what to do and what you, personally can live with going forward.

Dennyse

Met with MD yesterday and am having MRI today. I feel some relief as I am in good surgical hands and they are expediting my FISH test for the HER2 which was equivocal (2+). I have had MRIs in the past so am not worried about the procedure. However, now I will discover the extent of the disease and all I can do is keep my fingers crossed, stay rational, and reach out to friends and family. My husband and son are relieved from the path report but I know that there is more to do.

Sunnyone22

What did you learn from biopsy report? Size of ILC? Grade of cells? Mitotic rate? Please let us know.

It's helpful to complete the profile on this website so we know the details of your diagnosis.

Dennyse

Thank you for checking in with me. MRI was better than expected - localized to R breast, nothing in the L which has been previously problematic with atypical lobular hyperplasia. No nodes on MRI. And I just learned yesterday that the HER2 is negative. So as I understand it, I will be scheduled for lumpectomy with sentinel node biopsy followed by radiation then aromatase inhibitors for 5 years. I am actually happy! Weird.

Sunnyone22

Promising MRI and biopsy reports!

You're also feeling better because you have a handle on what you're dealing with, your treatment plan going forward, etc.

Warm wishes to you for no more surprises, uneventful surgery and easy recovery.

DaraB

Happy Birthday! My birthday is also May 31, and I was diagnosed with invasive ductal carcinoma two weeks before that. Great present huh? I have met with my surgeon at The City of Hope, who said I'd be a candidate for lumpectomy, but I have so much cancer and breast cancer in my family, she ordered extensive genetic testing. Also went last week for breast MRI, this week will have another ultrasound, possibly more biopsies, and meet with surgeon again. Genetic test results take up to 4 weeks however, so I'm really nervous about waiting that long. I hope your appointment on the 7th provided some good information. Keep us posted. We're all in the same boat!

Dennyse

Yes, weird birthday! I just got scheduled for surgery on the 6/20. Things are moving fast here. I am thankful for that. Yes, waiting is really hard.

Hang in there.

mustlovepoodles

Dara, I also have a lot of cancer in my family, including 3 pre-menopausal BCs (one was only 24!) I also had genetic testing. They did the 5-gene test, which covers the most common ones like BRCA 1&2. Then, we did another one, a 32-gene test, because I have 19 cases of different kinds of cancer in just my 1st & 2nd generation relatives (both sides involved). My first gene test came back negative within 2 weeks and I was so relieved. Had my lumpectomy and moved on. But then, the 32-gene panel came back and it turned out that I had 2 gene mutations which cause breast cancer, and a whole bunch of other cancers which are all represented in my family. Lucky me.

I wish I had waited on that second test because it would have totally changed the surgical plan. When I met with my oncologist, the first thing she asked me was "Why do you still have your breasts? They're going to try to kill you." Faced with an estimated 25+ years of close surveillance, I had to agree--the breasts had to go. If I had known about the gene mutations, I would have had the BMX before starting chemo. As it was, I had my lumpectomy, re-excision for clean margins, chemo, and THEN the BMX. I still need to get a total hysterectomy, too, thanks to the stupid gene mutations.