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Topic: Best place for care/late recurrence risk?

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

Posted on: Oct 11, 2018 02:22PM

Elise19 wrote:

Hi there, newly diagnosed and absolutely freaking out.

Where are the top places to go for care for ILC in particular? Initial and follow-up?

Tell me more about late recurrence. I have young kids and I'm terrified. Seems like I'm hearing everything from 5 years to 20, 10% of women or far more... conflicting info.

Help, please! Thank you.

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Oct 11, 2018 02:33PM Moderators wrote:

Hi Elise, and welcome to,

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find our incredible Community an excellent source of information, advice, and support.

We know it can seem super overwhelming and scary right now, but try to take a deep breath. Once you've gathered all the information about your diagnosis, you'll know better about your treatment path and the best ways to reduce your risk of recurrence in the future. Just take one step at a time. We're all here for you, and we get it!

Others will surely be by shortly to lend their support. We look forward to hearing more from you soon!

--The Mods

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Oct 12, 2018 08:21AM dtad wrote:

So sorry you are going through this. Not sure there is a facility that specializes in ILC. However IMO being treated at a major university teaching hospital is very important. Good luck and keep us posted. We are all here for you.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 12, 2018 09:19AM JoE777 wrote:

My humble advice to help with the "freaking out syndrome" we all experience at some level is to work with your doctors to learn all you can about your disease, to choose the best path for your recovery. You didn't say if you have had surgery and gotten a pathology report about your stage. If you want additional info about ILC beyond what your doctors have furnished go to the topics on this forum, MD Anderson, mayo, etc. don't look at sites that aren't reputable cancer treatment and research facilities. The women on this forum have a wealth of knowledge and experience. This is the worst time in your journey to health but you're living during an explosion of new treatment and cutting edge technology for those of us who are forced down this road. Try to take a breath and focus on today. You can't do anything about tomorrow but you're here , now for those sweet children. Embrace that and move forward one step at a time. The closer you are to your treatment center, the better. You may be spending long hours in the car if you feel like you have to go far away and that may happen anyway. Looking forward to hearing about your staging. Do something for yourself today and this weekend and you'll be better prepared to push back and defeat this nasty invader . Hugs and Peace for you today. Jo
Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 1/8/2018 Femara (letrozole) Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Other Radiation Therapy External: Bone Targeted Therapy Kisqali
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Oct 20, 2018 09:07AM - edited Oct 20, 2018 09:09AM by claireinaz

RE late recurrence, if you are able to take an anti-hormonal, that will help with late recurrence. Current thinking is that many women recur after 5-10 years because they stop taking an AI (protocol was for 5 years, then 10. My MO now tells me that if patients can tolerate it, some oncologists are asking us to consider it a lifelong drug). Since I'm high risk, I expect she'll ask me to stay on it longer than 10 years.

Also--BMI, exercise, diet, limit exposure to carcinogens in environment and food--all could make a difference.

One study that really helped me feel better was the nurse's study. It seems that 3-5 hours of moderate exercise a week reduced recurrence rate in post-BC nurses. Since I exercise a lot, and keep my BMI around 19-20, I felt like at least I had some control in helping my body fight off any potential recurrence.

The second link is interesting because it reviewed previous research. Scroll down to "aspirin", e.g.

"NURSES' HEALTH STUDY  Nurses' Health Study data revealed women who participated in moderate exercise (such as walking at an average pace) for 3-5 hours/week had a 50 percent lower risk of breast cancer recurrence, breast cancer death, and death from any cause."

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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