This is where my breast cancer story changes on a lot. My identity now will forever after be linked to the words "invasive lobular carcinoma" which will doubtless include a life long educational and diagnostic journey. This changes everything, so I may not only need another mastectomy but I may need all new oncologists because mine just don't know much about this more obscure and under-studied kind of breast cancer. Thankfully there are specialists not too far away and I'm getting in touch with them. (Remember to consult with your doctor about your pathology changes after mastectomy!)

Related Videos:

Recently changing my mind from lumpectomy to mastectomy:    • How I Decided between Lumpectomy and ...  
This is my full DCIS (stage zero breast cancer) story:    • My Breast Cancer Story - Part 1  
My early days with DCIS in 2020:    • Video  

Links about ILC and my new docs:

The Lobular Breast Cancer Alliance has been the biggest resource by far for me lately: www.lobularbreastcancer.org

A video discussing the differences between ductal and lobular cancers:    • Imaging Differences between Ductal an...  

The surgeon that I'm excited to be meeting with before the end of the year is Dr. Rita Muktar at UCSF. She sees only patients with ILC now, because most of her days are spent on research for ILC. https://www.ucsfhealth.org/providers/...

The medical oncologist here in Portland that I'm working with now, also an ILC specialist, is Dr. Sasha Stanton: https://www.providence.org/doctors/me... (She worked at UW a few years ago, where she worked on this technology:    • Dr. Sasha Stanton: Auto-antibodies in...   .)

Need the basics? Here's a basic overview of how cancer cells work:    • What Is Cancer? What Causes Cancer & ...  


Chapters:
0:00 Intro
1:00 Where I'm at now in my mastectomy surgery recovery
1:39 If I could go back with what I know now, would I have a double mastectomy?
2:21 Why wouldn't I go back now and get another mastectomy?
3:06 Why would I go back and have a second mastectomy?
4:13 My trauma history associated with scans and imaging for breast cancer
5:40 The new factors: Lobular Cancer is hard to see on imaging AND likely to reoccur
7:15 The prevailing myths and misunderstandings about Lobular Carcinoma
8:05 How lucky I am to have caught the lobular cancer early
8:42 Deciding whether to find a new surgical team now, who know more about my cancer
9:21 Do you speak of your cancer as being a past tense or present tense?
9:57 Finding a new surgeon for my second mastectomy
10:44 Looking out of state for doctors and surgeons for breast cancer
11:47 The choice to seek out the best possible medical care, and the costs
12:53 Another reason to do a second mastectomy now and not later
13:41 Factors in having a prophylactic (preventative) mastectomy when it's not urgent
15:17 Whether to get a nipple sparing mastectomy next time
18:07 Aesthetic Flat Closure and how I'm feeling about my onco plastic closure
19:44 Goldilocks Mastectomy vs. Aesthetic Flat Closure: there IS a difference
20:39 The cleavage factor vs. Aesthetic Flat Closure: there may be a difference
22:54 The value of symmetry and spinal balance in mastectomy
24:51 Upcoming video topics


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