Yesterday I had a phone appointment with my breast surgeon’s nurse just as a follow-up from surgery. They called me mid-morning and said they preferred an in-person appointment to see how I was healing. Maybe that should have been a red flag, but I didn’t think anything of it. Now when the appointment was set for me to see my surgeon’s NP and the surgeon walked in the door at the appointment, I was immediately concerned that something was amiss. I truly love my surgeon and was happy to see her. She is so warm and kind. She reassured me that we had made the absolute right choice for surgery. The cancer was practically in my nipple and not signing the release for non-nipple sparing would have been problematic. The margins on the tumor were quite small but clear. They were surprised to find not only the infiltrating lobular carcinoma but also ductal in situ carcinoma. The unfortunate news is that with more extensive pathology metastatic lobular carcinoma was found in my one sentinel lymph node.

People keep asking me what’s the stage of my cancer. I brought this up again with my surgeon and the answer is that I am still a ways off from being “staged”, but the information provided in the pathology provides much more detail for the doctor than staging.

The current diagnosis is:

• multifocal grade 2 invasive lobular carcinoma (with clear margins)

• duct carcinoma in situ intermediate grade (with clear margins)

• metastatic lobular carcinoma in right axillary sentinel lymph node

So what does this mean? There are two paths but mine is clear. I either have radiation to avoid losing all my right axillary lymph nodes and lessen my likelihood of lymphedema in my right arm, or I have a full right axillary lymph node dissection. With the full dissection, pathology can be completed on all my removed lymph nodes and we will have a much better picture of how far the cancer has travelled. Hopefully there are few or no more nodes involved. This really lessens my chances of needing radiation. If they do find cancer in a large number of nodes, radiation might still be recommended and prudent. I am going to have the axillary node dissection.

I am also going to meet with a lymphedema and lymph node specialist in the near future. There is a fairly new microscopic procedure they can do during surgery to map the drainage routes of the nodes in the upper arm and reconnect any disrupted channels by creating a “by-pass” to prevent swelling. While doing research, I found this clever description: “This microsurgical technique ‘re-plumbs’ the lymphatic system to allow for the normal flow and drainage of lymphatic fluid,” said Christopher Reid, MD, plastic surgeon, UC San Diego Health.

I feel beyond lucky and blessed to have such amazing doctors on my team helping to ensure I am afforded the best opportunities and care possible.

As discussed previously, I had not made a final decision on my oncologist. I was still considering one at PAMF, one at Stanford and one at UCSF. I still have an appointment scheduled with the UCSF oncologist on March 24th, but I am planning to move forward with the Stanford oncologist. I like him very much, and with another surgery coming soon, coordination with my surgeon and oncologist is more important than ever, so utilizing doctors from just one provider will make collaboration and communication seamless. I do love the UCSF doctor and hope she will be able to provide guidance and expertise as I make my ongoing treatment plan.

My oncologist at Stanford called me last night and said that, based on my pathology, chemotherapy was no longer an option to discuss but a necessity. He wants chemo to start in 5-6 weeks and said that today or tomorrow he would speak with my surgeon so they can discuss timing and logistics. They will also connect with my reconstructive plastic surgeon regarding timing and implications.

I am waiting on calls now for appointments with both my oncologist and the lymph node specialist. When I saw my surgeon in-person to receive the news, she was pleased with my healing and I believe the next surgery will happen in a matter of weeks. I need to have another conversation with her team to have an understanding of how this will affect my recovery and what additional limitations I might have post-op.

While this was definitely not the news we wanted to hear and I wish there had been more than one sentinel node to test so that we might have been able to avoid this surgery, this is the current reality. I am hoping in the next week I will have more answers regarding timing.

Fran and Chris (my mom and step-dad) headed home today after visiting and helping for the last week. We enjoyed having nana and papa (mom and Chris) here for the week. Due to the pandemic, it has been a very long time since they had seen the girls. My girls even got to spend two nights at the hotel with them, which they loved. We love to travel - both big trips and small overnight trips in our area. It is funny how much they missed staying at a hotel. Halle logged many hours on her swing with one of her grandparents pushing her. And the big girls truly loved the time with them both. We were sad to see them go but happy for the time spent together. 

Mike and Jerilyn (my dad and step-mom) were planning to come next week to help and be here for my oldest, Emma’s 12th birthday. Now, it makes the most sense to put their trip on hold until I have my next surgery date. They will come at that time. Luckily, my local community and pod of friends are very kind and helpful and willing to help us out with all the many things I am currently unable to do. 

My friend Aida deserves a medal of some sort for everything she has done for me and my family  throughout this process and especially right now. Hopefully soon more of us will be vaccinated and things will get easier. I also have to say that Jeremy has been so loving and supportive, and stepped up in huge ways at home trying to keep everything in our lives working. Thank goodness our girls made that hole in the fence so many months ago because our neighbors spend lots of time with 6 kids, not just the three that live at their house. There are so many people making things work for us and I am forever grateful.

The gifts, flowers, food, desserts, cards and more have been amazing and overwhelming. We feel so loved and supported from near and far. My heartfelt thanks goes out to each and every one of you. We truly could not do this on our own. 

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