Didn’t she ring the bell? Isn’t she done yet? Here’s the “quick” version.
In March of 2022, I was diagnosed with Stage 3C Inflammatory Breast Cancer and started treatment at Cleveland Clinic. I had no idea how serious IBC truly was and thought we were following the protocols for curing this. Then I found out around February of 2023 that perhaps my well-meaning doctors had not actually followed the protocols as closely as necessary but felt like we had still hit it hard enough.
In April 2023, a rash appeared. I asked EVERY DOCTOR I saw if they thought we should punch it just to be sure. No, that is probably radiation recall or skin irritation. I finished the last round of Herceptin and Perjeta in May of 2023 and had my port removed. Celebrated beating cancer with a family cruise, then by the end of June noticed that the red rash I was monitoring had bloomed everywhere. After landing myself in the hospital, I FINALLY got the punch biopsy that confirmed what I had always thought—it was recurrence. Already. A pet scan showed that it was also in a left axilla node. My original cancer was on the right side. Crossing the midline changes everything they said. They told us that I was now Stage 4 and we could see how much time we could get me with Enhertu. It wasn’t really promising.
We decided it was time to go to MD Anderson. After finding out insurance wasn’t going to cover MDA, we made some insurance changes so it would. Thankfully we had a choice in insurance plans.
I went to MD Anderson in March 2024, and now, in August 2024, just six months later, I am having surgery to remove the skin where the recurrence occurred and the nodes on the left side with a CURATIVE intent. We may not get a curative outcome, but that’s the GOAL. And even if we do hit “curative” status (not something that happens often with stage 4 breast cancer, much less stage for IBC) there is still a very high risk for recurrence. SPOILER ALERT: MY PATHOLOGY WAS yCLEAN! No evidence of microscopic cancer!!!! Every single Pet scan that shows No Evidence of Disease is another quarter that I am with my family and my girls have a mother.
I was so excited that Dr. Lucci felt that curative intent was a possibility, that I made T-shirts and cups for the occasion. Apparently not every patient brings swag bags to surgery, but I keep telling everyone I’m not a regular patient!
Having received the best news I could, I’ll be able to get scheduled for reconstruction and discuss options to stop chemo. I guess I will get busy on another set of shirts and cups because now I have set the standard and if I don’t do it, my lucky streak might end.
This is not the story for very many IBC sisters YET. But I am hopeful that it will become the norm. So, my story is one of the IBC Network’s motto —Hope Always.
What we REALLY need long term is RESEARCH so if this comes back again, there’s more lines of treatments or even a CURE. The IBC Network Foundation funds grants for research. The Executive Director donates her time and passion to this as an IBC survivor and takes no salary. This is not a typical large charity style of executive salaries before a research budget. AND this foundation supports the research for Inflammatory Breast Cancer — which is important because rare cancers do not get the funding the common ones do. Sadly, there are more and more of us with IBC fighting the good fight.
So if you are able to donate to the IBC Foundation, it’s money well donated!
If you made it this far, thanks for sticking with me on this journey!