Strong and Wrong

 

The last couple of weeks have been complete insanity. And I hardly know where to start with everything that has happened in the last 24 hours, but I’m going to give it a shot…

First, I had an annual appointment with my gynecologist. She did go ahead and do a breast exam and did not find anything out of the ordinary in my scar tissue or anything. While I was there, we also discussed a weird issue with my prescription. This medication was ordered by my gynecologist and approved by my oncologist and deemed as safe for a hormone positive breast cancer patient. It’s intended to help mitigate symptoms from being on hormone suppression, which are numerous and miserable for most people. They ordered it through a compounding pharmacy in Michigan, and I received a 3-month supply. The pharmacy called earlier this week and said I had one month left, and asked if I wanted to fill it and I agreed. I mentioned to my doctor that I needed a refill, and she said that was very odd because they had ordered a year’s worth of refills in 3-month increments so the “one month left” thing didn’t make any sense. She didn’t like that, so she gave me samples from a different company and then set up orders to go through them from now on.

The next day I finally had the appointment with my oncologist. I’d hoped that she would have some answers, but she really didn’t. In fact, I could hear office staff on a call with Signatera when I arrived, so I don’t know for sure how much it was researched prior to my appointment. Im pretty sure the oncology nurse was looking into it, though.

I did learn that Dr. Joyce still considers me to be “NED” (which stands for no evidence of disease) regardless of the test results. She felt the remaining lymph nodes in my armpits and neck and did not feel anything abnormal. She said that we would retest, and hope that the number would not go up. If it does go up- especially quickly (multiple tests in a row) or gets significantly larger, we would do scans. I asked if I should take Verzenio to help improve my chances. She said that she didn’t think I should discontinue my hormone suppression to take that since I’m doing well. I was confused and said that I thought those meds are taken together?? She said that I was right, they are, and we could consider adding that if my numbers increase. This was a bit…unsettling.

I also asked if we were certain that I was on the right hormone suppression medication, or if there was any way to check that. She said there really isn’t, but did agree to do an estradiol blood test, just to make sure my estrogen is low enough. I asked if it’s still safe to take the medication my gyno prescribed, in light of the positive Signatera results. She said she didn’t know if the medication was safe at all, and had no memory of ever researching it.(???!?!!) My gynecologist is the one who ordered it, but my oncologist’s office had actually ordered it as well, they just didn’t have it at our local compounding  pharmacy so my other doctor ordered it elsewhere. I was floored. She asked me how often I’ve been taking it, which is every day! For THREE MONTHS!! She said she definitely wouldn’t advise taking it every day. 

Too late now! W.T.F.??!

As I was leaving the oncologist’s office, my favorite oncology nurse stopped me to give me the number for the “breast cancer specialist” at Signatera, who had graciously agreed to join us virtually for my onc appointment and, when we didn’t end up doing that, said I could call with any questions.

After we got home, I decided to call her. And, I decided to put it on speaker so Brant and Nurse Jennifer could listen, as well. I’m really glad I did because she was not awesome. She was extremely hostile, defensive, and generally mocking. She blamed all of my issues regarding the Signatera test on my oncologist and my insurance company, but I got my information from their website, their, rep, and their genetic counselor, so...? I did additional research, as well, and she got snarky about “Google” but luckily I was able to cite my sources. She tried to manage me and bully me, but she picked the wrong cancer patient. 

You know what she did. 

And she found out. 

🙃

Partway through the conversation, she realized “who I am”. I have tried really hard to get the word out in online breast cancer groups about what happens (and what doesn’t) if you get a positive test. I have apparently been discussed in Natera boardrooms…😆 She said she knew there was a patient who was upset, and now she realizes I’m that patient. I told her I’m ABSOLUTELY “that patient”, and I’m always going to be “that patient”! 😂🤣😂🤣

She did change her tune, at this point, and I finally got some information. I’m going to basically just list what’s relevant.

1. They DO get false positives.

2. My number was not .03, it was *below* .03.

3. The hormone suppression I’m on does, in fact, count as “active treatment”.

4. They expect my number to go down. A number as low as mine typically disappears.

5. If it goes up, they have paperwork to use to get insurance to cover scans, but it is true that they would not find anything this early- I would have to just wait for a high enough number and/or symptoms.

6. There is no treatment for people with a “higher” positive test (lower than what would be visible on scans but higher than my results)  but they are “working on it”…

7. She said that she expects my number to go to zero by the next test.

I asked if I needed to worry about them telling me it’s zero just to shut me up? Cuz….😬 She assured me that they use outside testing and our names are not attached, but I’m still a little nervous, to be honest.

It was a weird call, and it did not make me feel any better about their company, but it was very good news to learn that they expect my “positive” to disappear.

This morning I went back to my oncologist’s office to get the repeat test drawn, to get my estradiol levels checked, and to get my flu shot. I discovered that Signatera had come in earlier that morning and told them all the same basic stuff that the specialist FINALLY told me at the end of our call yesterday. We are all confused as to why they didn’t just tell us that from the start, and why they would even do the test this soon after starting hormone suppression, and why they would push me to get scans when they said in both conversations that nothing would be visible on scans at this time.

“Tell me you’re in an unofficial clinical trial without telling me you’re in an unofficial clinical trial…” is what my brain keeps coming up with.

Anyway, I got my blood draws and shot. My test has been sent to Signatera, and the results should be back in about a week. I don’t know when my estradiol results will be back, but I did learn today that the medication I’ve been taking daily for 3 months is actually NOT safe for hormone positive cancer, so… that’s not good. I also realized that my gynecologist probably wrote it for 1-2 times/week, but the pharmacy label said every day, and that’s why a year’s worth of medicine only lasted 4 months! I called my gynecologist’s office immediately to let them know that the pharmacy may have messed up. They told me I should “do whatever my oncologist recommends”. I was confused, and said that I *will* do what my oncologist recommends, but I think the pharmacy messed up my instructions. They just repeated “you should just do whatever your oncologist recommends”, which was my breaking point.

I spent the next 20 minutes or so hysterical, and just so upset that I went through all of the trauma of the last couple of weeks when they knew all along that my test results would likely go down over time. But now I guess they actually might not, because my oncologist said it was safe to take something that is not safe!! Then my gynecologist ordered it and someone (either my gyno or the pharmacy) gave me the wrong instructions, making my overall dosage much higher and risks much worse!!!

I’m just so tired of how hard it is to reach anyone at oncology at IU Health, and I was simply lucky that I already had a follow up scheduled for this week. I’m tired of how much I have to do my own research and check and double check things just to find out errors are happening, anyway. I’m flabbergasted that a branch of company that deals exclusively with cancer patients would tell someone that their cancer is definitely coming back and that they don’t have false positives and be hostile when they’re pushed on it. (They were completely delightful to oncology, though…) I’ve been so stressed and exhausted and overwhelmed and I feel like I’ve gotten very little actual medical help. I am sometimes amazed that people who aren’t vigilant assholes even survive medical issues, at all!

For now, I’m awaiting my repeat test results, and assuming that they will be fine unless the meds screwed me up. 

The shittiest part of all of this is that I was very worried that I would live the rest of my life with fear of recurrence, but after chemo I “felt like” it was gone, and I believed that it was! So I didn’t have a lot of worry about it. I thought I would do this test more for insurance and not because I really thought it would come back positive anytime soon. Logically, my greatest risk is after I stop hormone suppression in 7-10 years! But all of this has shaken my confidence, and now I AM worried about recurrence, which affects my quality of life, and it never had to happen this way. It’s disappointing, infuriating, and exhausting. 

Nonetheless, I am grateful that I have plenty of reason to hope that these cells are going to die off, and that it will likely happen soon. I am grateful that the science is evolving, even if some of the companies behind it are money grubbing, dishonest, misleading jerks. And I’m grateful that I have time this weekend to decompress from it all and move forward.

I’ll update with my results when I get them.