Finally sharing some great news. My prognosis improved and my tumor size was downgraded after the final pathology report. From what I understand, it is not often the oncologists get to upgrade the prognosis and downgrade the size, so I am very grateful. The cancer came back as Invasive Tubulolobular Carcinoma (not Invasive Lobular). Rare; 1% of all breast cancers. It has characteristics of both lobular and tubular cells and growing patterns. Ultimately, it  has a better prognosis than the original diagnosis. Additionally, the tumor size was downgraded from 1.5 cm to 0.3 cm, so it moves from tumor size 1B to 1A, further improving the prognosis. I will still do 10 years of tamoxifen (daily pill to block estrogen receptors on breast cancer cells) to reduce the risk of recurrence.  Not in lymph nodes. No chemo or radiation needed. I am truly feeling blessed.

It was a bit confusing getting all of the info and trying to understand the differences between imaging (mammogram, sonogram & MRI), biopsy, and surgical pathology findings. I am very grateful to Terri King who helped me uncover the details and give me clarity and peace.

I am someone that seeks to understand, asks too many questions, and needs to understand the whys. Sometimes there are unknowns and I truly suck at giving up control and having trust. This year has forced me to work on my control and trust issues.  With that being said, sometimes there are reasonable explanations and I am appreciative that I have friends that can help me gain clarity and knowledge. I am grateful that Dr. Omoba was willing to pull the slides and explain the why. Apparently what looked like a 1.5 cm Invasive Lobular Carcinoma malignant mass with a nearby smaller Atypical Lobular Hyperplasia was actually a fibroadenoma with a tiny 3 mm (0.3 cm) malignancy in the middle. The NP described it as an “egg with a yolk” analogy. Invasive Tubulolobular Carcinoma contained within a benign fibroadenoma.

I have loved my doctors at Carle, but encourage everyone to ask questions, seek to understand, and follow up repeatedly. It is your body and life and there is nothing wrong with wanting to understand. If you meet with resistance or anyone is dismissive of your questions, ask someone else (lol). We are all human, including our healthcare providers and staff. They do amazing things for patients everyday, but sometimes communication or details get lost. Add in the craziness of COVID-19 it is easy to understand why you need to stay on top of your care. As an example (and definitely not to place blame), I waited almost four weeks for my OncoType DX to determine if I needed chemo. I kept calling and the nurses kept saying to be patient. I received the surgical pathology report 2 weeks after surgery. The nurse reviewed the top line results over the phone. I learned it was all good news:  small, they got it all, not in lymph nodes, no need for radiation, but needed to wait for OncoType. It wasn’t until I re-read the report for the 100th time while waiting for the OncoType DX results that I noticed the word Tubulolobular instead of Lobular. Subtle word difference, but different diagnosis when I looked it up. Didn’t catch my eye before. The more I looked at the report, I noticed the 0.3 cm size in the summary, which varied from the 1.5 cm size in the surgical notes (come to find out that this number is just pulled from MRI and inserted into surgical notes detailing the mastectomy specimens so it is an imaging size not the actual tumor size). It was confusing and raised more questions. When I called the nurse navigator, she said she did not think it was clinically relevant. But it was. When my medical oncologist called me the next day, she confirmed the tumor and size were different and it was clinically relevant.  Additionally, I learned the OncoType DX was never ordered because it was so small it would not require chemo!  The nurses didn’t understand this and had just told me to keep being patient and wait. Don’t get me wrong, I don’t fault anyone. Things happen and communication is difficult with lots of moving pieces.  My point in sharing this is to encourage you to ask lots of questions, be respectful, be understanding, but never feel bad for wanting more knowledge of your situation. I am sure that all of this would have been discussed at my appointment 5 weeks post op, but that is a long time to worry and wait when the answers had been sitting there and in my own hands since 2 weeks post op.

In the end, I am grateful to my providers and nurses who have patiently endured my questions, helped me navigate a confusing array of decisions that ultimately are yours to make, and allowed me to have peace, clarity and confidence in my decision for a double mastectomy with reconstruction.

My next surgery is October 27th for the expander to implant exchange. And for the record, my plastic surgeon Dr Stams is my favorite provider who welcomes and encourages my thousands of questions, describes every aspect of care in great detail and is patient with his time, compassionate and understanding. Bedside manner is a gift and he has a knack for it. He instills total confidence and trust in his abilities.  Highly recommend him and his surgical abilities.

Ready for the next step and looking forward to some normalcy by the holidays....and I can’t wait to sleep on my stomach!  Lol. 

Thanks to all my family, friends and coworkers. Your generosity and kindness has been humbling. I am truly blessed with the most amazing support system. This whole healthcare scare has reinforced my faith and gratitude. ❤️