Reign of Error

 

Well, I don’t really want to do this, but here goes.

I got through all of my cancer treatments, did very well, and all scans throughout the process were clear. Everybody saw me as a success story. I started my AI’s in August, and have been doing fairly well with those, too. Things have been really good, and we’ve been making plans for the future. 

I recently learned about a test called Signatera, which uses the DNA from your own tumor to search for tumor cells in your bloodstream. These cells can help detect recurrence quickly- much faster than imaging.

Their website says “99% of positive tests lead to recurrence without further treatment”. I thought- wow, it would be great to catch a recurrence and treat it before it has the chance to become metastatic!!! My oncologist ordered the test and we started the process. We expected the first test to be negative, and then we would test every 3 months to monitor for changes. This seemed like a really positive, proactive plan.

Unfortunately, my very first test was positive. It was low- only .03 mTM per mL of blood, but it doesn’t matter how low the results are. A positive test is a positive test. This was pretty devastating news, in itself, but also… that whole “99% chance of recurrence without further treatment” quote was only partially true. I have a virtual guarantee of recurrence, but there actually is NO treatment at this point. That means that I will have a recurrence, and there is nothing I can do about it until I’m already metastatic, and metastatic is incurable, which is terminal, which, of course, really fucking sucks.

Anywho, the way all of this works is that cancer cells shed their DNA into your bloodstream, and they quickly clear the body after they are shed, so there should not be any after surgery, and especially not after chemo and radiation. Finding these cells after treatment is indicative of a “poor prognosis” and a virtual guarantee of recurrence which, without stopping it now, will be stage 4.

I’ve tried and tried to find data that contradicts this, but there isn’t any. Everything seems to back it up. I am my oncologist’s very first Signatera patient, let alone positive result, so she is at a total loss. Additional research tells me that all of oncology is pretty much in the same boat, though lots of clinical tests are in the works.

I have no idea when it’s going to “come back”, but average time after a positive test is 10 months to 2 years. This timeframe is in keeping with the notion that “most breast cancer recurrence happens within the first 5 years”, but it could really occur at any time. Hormone positive breast cancers can recur after decades! It will likely happen sooner for me, though.

I’m essentially standing on the tracks waiting for the train, which is terrifying and heartbreaking and awful. However, I’m not really the type of person who can sit back and wait to get clobbered without a fight, so this is my plan of action, so far:

1. I am getting retested. It is extremely unlikely that it’s a false positive, and I don’t want to mislead anyone about that, but because the number is SO LOW, everyone wants me to do it again just to be absolutely sure.

2. My oncologist is looking into whether adding the drug Verzenio to my hormone suppression could improve my chances or at least slow down progression. Unfortunately, they don’t think I’ll be able to have a PET scan with “just” a positive Signatera test, so there isn’t much chance of imaging finding anything at this point. Once my numbers are higher, or I experience symptoms, then I might be approved for one.

3. I contacted my primary care physician who is putting together a protocol to help boost my immune system. It is extremely unlikely to kill off cancer, but if I’m looking at surviving as long as possible, I will need my immune system to be strong.

4. I contacted my breast surgeon. I did learn that there are a few people who had extremely low positives like mine who actually “just” had a positive lymph node. She might be willing to use ultrasound to check my lymph nodes, and if anything has changed, maybe I can remove the rest of them. Unlikely, but worth looking into!

5. My oncology nurse is going to contact a genomic sequencing specialist (who is also a breast cancer specialist) to see if there’s anything specific to my cancer that might be able to be targeted. It’s not likely, because hormone positive cancers don’t have many options in this department. However, there are several clinical trials around the world for people with MRD (molecular residual disease) and if I’m eligible for any he’s the person who can probably get me in.

6. I’m actively seeking out other people on social media who have had positive tests. My oncologist and many others have no idea what to do, but that doesn’t mean there isn’t someone out there whose onc had an idea. If there is, I want to find them.

I guess that’s all I’ve got so far. I’m trying to keep it together, but I’ve already lost 5 pounds and regularly alternate between hysterics and sobbing. I got to experience something the other day that can only be described as “hyperventi-screaming”… Sometimes I can’t even look at Patton. I had done so well and was such an early stage that we all thought I was in the clear. I had fully resumed normal life and felt completely healthy. To say this is a “blow” would be the understatement of the year.

For now, we are desperately clinging to the hope that the results were a mistake, but the most realistic “best case scenario” is that we can use this information to catch it as early as possible, treat it aggressively, and buy me the most time possible. There are very real benefits to this testing, but I think they got ahead of themselves by offering it before treatments are available. Regardless, knowing is awful, but it gives me a head start so I can have more years with my loves.

In other shitty news, my friend Kimby died of complications from the TBI she suffered last summer. She was a good person who at the very least deserved a better ending, but things just happen the way they happen, I guess. I’m going to sponsor a cat at the shelter in her honor, but I’m going to wait until things calm down here a bit, first. If you knew Kimby, her family assured me she would love the idea of a cat (or cats!) being saved, so feel free to donate to your local shelter or sponsor an adoption of your own in her honor!

https://www.greinerfuneralhome.com/obituary/Kimberly-Brown