Medical Update: The Path Forward

Hi everyone, time for an update from my latest appointments today, of which there were three.. There’s quite a bit to unpack, so let me walk you through everything.

Firstly, the picture attached to this post is of Phillip Harms, who had cancer similar to mine and the same procedure and recovery I talk about below. 

The ultrasound results have not shown significant shrinkage of the tumor since May, though my team explained this could be misleading due to something called the “tumor bed” where the treated area can make it difficult to see what’s really happening. The only definitive way to know would be surgical exploration.

An MRI could provide more clarity, but I can’t lie on my stomach because of the ostomy, which is required positioning for a breast MRI. Since it wouldn’t change our treatment plan anyway, we’re likely skipping it.

Surgical Decisions

I’m moving forward with a skin-sparing double mastectomy. This makes sense for two main reasons:

  • It ensures symmetry without requiring additional plastic surgery
  • It eliminates the risk of developing cancer on the left side

Neither side will be nipple-sparing, but no muscle removal will be necessary, which should help with recovery.

Timeline Shift

My surgeon has been recruited to establish a breast cancer center in Anchorage and her last day is August 31st. This means we’re accelerating the timeline, with surgery likely during the week of August 11th. Sooner than anticipated, but we’re adapting.

Pre-Surgery Preparations

I’ll need to be in Dallas for several procedures before surgery:

  1. Radioactive seed placement via ultrasound to mark the clips (titanium markers used to identify the initial biopsy locations) for removal as they are too small and buried deep to see otherwise.
  2. Blue dye injection to map which nodes the tumor drains to.
  3. Standard pre-op workup: blood tests and EKG.

Lymph Nodes and Future Treatment

The goal is to remove only three lymph nodes. However, if pathology reveals active cancer cells during surgery, they’ll need to take all nodes from my right side. This would carry a 30-40% chance of developing lymphedema. If that happens, there are experimental surgical options to bypass lymph drainage directly into the bloodstream, though the UTSW surgeon who helped pioneer these techniques is no longer in Dallas.

Given the multiple lymph node involvement, radiation therapy will likely be recommended regardless. My surgeon has already initiated the radiation oncology referral. This will probably mean 20+ daily treatments, alongside continuing Perjeta and Herceptin infusions every three weeks, not to mention the estrogen blocker.

Recovery Reality

Post-surgery expectations:

  • Minimum 24-hour hospital observation
  • Dual drains on both sides for 4-6 weeks
  • No driving during the drain period (honestly, this seems excessive to me – not sure how strict they are about this)
  • Back sleeping only for which they’re recommending a recliner

This extended recovery timeline pushes my ostomy reversal further out than I’d hoped, especially when factoring in the unknowns around potential chemotherapy continuation and radiation therapy.

Taking It All In

It’s a lot to process. The coordination of multiple treatments, the physical restrictions during recovery, and the uncertainty around some outcomes are all substantial. But I have a clear path forward, trust in Jesus and my medical team.

I go in for what should be my last chemo infusion just 12 hours from the time of this post. Please believe with me that the treatment is working and there will be ZERO live cancer cells left. We’re talking dead, dead. Also of course, that the side effects of this round are non-existent and that I am able to stay well hydrated.

I’ll keep updating as we move through this next phase. Thanks for being part of this journey with me.