The Gentle Art of Making Enemies

There have been a number of Major Medical Events in my life that have changed everything, forever. Each came with trauma and terror and uncertainty, and I didn’t know if I could get through it. Each time I’ve had to research, educate myself, advocate for myself, fight, argue, kick ass, kiss ass, find workarounds, go up the chain of command, demand to be taken seriously, and somehow also survive the actual Major Medical Event. Each time I’ve managed to do it, and I hope that will be true now, as well. But man, this is so hard.

I’ve spent the last several days on the offensive. I still haven’t heard back from my oncologist or had my repeat test so… I’ve had plenty of time on my hands….

I’ve been in every online breast cancer support group that I’ve ever had any connection to, and I have told everyone who will listen what has happened to me with this test. I’ve done everything I can to make sure that other people know exactly what they’re getting into if they sign up for it. I am in no way trying to dissuade people from taking it, but I want to make sure they know that a positive does not mean they’ll get to have treatment. I have also commented with my experience on several Natera and Signatera promotional posts online. I’ve also messaged Natera, directly. I have also reached out to a breast cancer specific “social media influencer” who is going to feature me and help get my story out. I have also scoured all social media sites for other Signatera positives for breast cancer. Interestingly, I haven’t really been able to find any. I did find a colorectal cancer patient who had a very low positive at .1 (mine was .03!!) and her 2 subsequent tests were negative! They deemed her first one a “false positive”, so I guess they might occasionally have those, after all… Our cancers are different, which might make the possibility of a false positive different for me, but it still gave me a little hope.

I’ve found a researcher at Memorial Sloan Kettering who is involved with both “liquid biopsies” (like Signatera) and also clinical trials for treatment- potentially using drugs that are traditionally limited to current metastatic breast cancer patients. If  Dr. Joyce does not have a plan for me (in the event that my retesting does, in fact, come back positive), I will likely try to reach out to him. I see her Wednesday afternoon, so hopefully we will have some kind of tentative plan at that point.

Since, in spite of all of my online harassment and/or advocacy I STILL had too much time to worry about everything that’s going on, I also emailed the “second opinion” oncologist I saw last winter. I expressed the fact that I felt tricked into being an unwitting test subject. That I thought I was doing something proactive for myself to prevent developing metastatic disease and that I had no idea no treatment would be available at this stage. I told him I just wanted to loop him in because I need all of the help I can get, at this point. This evening, he actually called me back, himself!

He said he wanted to talk to me because he agreed with absolutely everything I said, and if he could, he would print my email out and give it to every one of these commercially available “liquid biopsy” companies. (I told him to go right ahead! 😆) He said my feelings about all of this are completely valid, that they had no business rolling this out without having solutions or support in place, and that they show a complete lack of concern for patients in my situation. He said the science is extremely compelling, but when used separately from clinical trials it causes more harm than good.

He did not seem to be completely sold on the notion that a .03 result is actually positive, he said they don’t know if the meds I’m already taking or the ones we might add will help, but they also don’t know that they won’t. Much of the problem with all of this is the myriad of unknowns. He said that repetitive scans and exposure to all of that extra radiation did not seem like a good solution to a recurrence that may never happen (all I heard was that recurrence might not happen! 😆). He was very glad to hear that I was potentially going to connect with the genomic sequencing specialist at IU Simon Cancer Center or (especially) the doctor at Memorial Sloan Kettering who is already involved with clinical trials. He said that insurance isn’t going to cover anything comprehensive (or expensive imaging) based on this positive test, and the best way to get ongoing care would be a clinical trial.

He said that my research and approach to all of this is sound and the same things that he would be doing. That, plus his belief that the test is good, but perhaps not as “guaranteed” as they’ve made it sound, has given me a little more hope. I can’t tell you how validating it was to have an oncologist (who isn’t even MY oncologist!) personally call me to tell me I’ve hit the nail on the head, and that I’ve simultaneously validated his exact reasons for not offering these tests. 

I’m pretty sure my name is going to come up in oncology circles for years to come... 😆

I don’t have much else to report. I have scheduled my axillary lymph node ultrasound with Dr. Liu (my breast surgeon) for January. I assume she wants it to be 6 months post radiation, which is why we’re waiting?? I’m just glad it’s set up and that *something* is happening.

I’ve also ordered a number of supplements recommended by my PCP to try and boost my immune system. While I AM eating, I am still having a difficult time with a healthy appetite due to my anxiety, so I need to get some help wherever I can find it. I’m also adding Boost protein shakes to help with nutrition while my stomach is on strike.

 I wish that supplements could cure cancer, but that (for now, at least) is nothing but wishful thinking. That said, every, single cancer treatment available is extremely hard on the body, so if there’s anything at all that I can do to improve my odds of doing well with whatever comes next, I will do it. My doctor thinks these things could make me stronger, so as long as they aren’t harmful, I’ll try them.

Things have been so stressful, but we’ve still managed to have some fun. Patton got to (finally!) participate in the Candy Stripe Crew with IUWBB again Saturday. I think he had a good time. He was on a team with Sydney Parrish, Grace Berger (!!) and Mona Zaric, with a workout with Ali Patberg at the end.

 I will update again after I talk to Dr. Joyce.