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When Positive is Negative but Positive

After surgery, I was quite confident that it was all done. Not because I had been told otherwise but because I had convinced myself of it, and expected it. When I found out that one of the three sentinal lymph nodes also tested positive for cancer, I was fucking livid. This was not part of my plan.

I was so angry that I had taken good care of myself and yet, here I was with breast cancer. Although I had been separated nearly two years from my ex, I became furious with myself for having spent as much time as I had in such an unhealthy relationship with someone who was so mean and disrespectful and deserved repeated punches in his face for sucking the life out of me for as long as I let him (plot twist: the relationship with him was an outer reflection of my inner relationship with how I was treating myself. Further spoiler alert: It is always a reflection – if you don’t like what you’re seeing, look inside). I was angry that I had spent my life working at so-called “good” jobs that left me feeling unfulfilled personally. I was mad because it all meant further tests and scans, more stress and more sleepless nights waiting for results and thinking the worst possible outcome I was SO mad! Like Hulk mad!

But I was scared. I was heartbroken at the possibility of leaving my sweet little dog who had been so loyal and loving to me. I was scared of leaving the people that I loved so much and held so close to my heart. I felt like I had finally reached a point in my life where I was figuring it all out, and I wasn’t going to be able to experience it. It wasn’t fair and it just didn’t make any sense.

I’ve always been one of those “everything happens for a reason” people, and yes, sometimes that reason is because you were stupid. Sometimes though, if you’re looking for it, you will see the positive within the negative.

After the unbearable stress and debilitating fear of bone scans, CT scans, ultrasounds, and enhanced ultrasounds to ensure the cancer had not spread further, I met my medical oncologist – and things immediately became easier to bear emotionally. He was amazing, kind, and immediately put my mind at ease that guess what – there was no way I was going to die from this. Take that, Mom! I told YOU so! Lol! When I look back at this appointment, I am sure he was handpicked for me by God. I’m the kind of person who wants answers and explanations. I want to understand the “why” behind things, and what risks are associated with doing or not doing things, and how they happen. He spent 3 hours with me and my friend answering endless questions and explaining everything in detail. The man is a freaking saint.

As luck would have it (see: “everything happens for a reason”) because one of the lymph nodes had tested positive, I could potentially participate in a clinical trial that would randomize me for the amount of radiation therapy I would receive; either breast area only, or breast and lymph node (which was the current standard for all treatment protocols, so really, I had nothing to lose here). As part of this trial, I would have to receive an Oncotype score, which is an assessment of the tissue to determine the distant risk recurrence percentage this specific cancer had. If the percentage was low enough to be considered “low risk” (less than 18%), I could participate in the clinical trial.

Well holy shitballs. A scientific analysis of the tissue that tells you the percentage of how likely cancer is to reoccur?! Yes, sign me up for that right now!! At this point, I didn’t even care where I would be randomized in the trial. I had already decided after my previous post- surgery expectations that we are often disappointed BECAUSE of our expectations. If we can just allow the experience to unfold for what it is and not what we think it should be, as hard as it may seem it can be much easier to manage.

Had I not had a lymph node test positive, I wouldn’t have been able to participate in this clinical trial or had a clue about the Oncotype score or what it is. When you’re dealing with something like cancer, the value of having percentage confirmations, distant risk recurrence and evidence of survival rates of other patients 26+ years after diagnosis is immeasurable for the medical team and also for any patient’s peace of mind.

My score came back as being considered low risk, and I was able to participate in the trial. I was randomized and received radiation in both lymph and breast areas, and I am 100% sure that was meant to be as well. Best of all, I had the peace of mind from this Oncotype score that there was no apparent benefit to chemotherapy, so there was no reason to take further risks with my putting my body through additional treatments that would have been a really tough sell for me to begin with.

If you are ever diagnosed with breast cancer, ask for this test. I cannot stress enough how much it helped me. In Canada (Alberta specifically where I live), the cost of it is covered by Alberta Health Care in specific circumstances, so speak to your oncologist. Everything does happen for a reason.

love heals for reals
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2 comments on “When Positive is Negative but Positive

  1. Here is a link with information on the Oncotype DX scores
    https://www.oncotypeiq.com/en-US/

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  2. And for any other patients in Alberta, here’s a bit of the reply i got from the Ministry of Health regarding when the oncotype score is paid for by AHS. If your oncologist doesn’t bring it up, that doesn’t mean you can’t ask about it.

    “Alberta currently covers the cost of the Oncotype Dx and/or the Prosigna test for breast cancer patients if they meet specific testing criteria and if a medical oncologist orders the tests.

    Oncotype Dx and Prosigna are only useful and accurate for some breast cancer patients. Medical oncologists in Alberta use criteria to determine which patients will benefit from, and therefore be eligible for, testing. Patients are only considered eligible for Oncotype Dx or Prosigna if they test positive for the estrogen receptor, negative for the human epidermal growth factor receptor-2, and if they have a negative or minimally positive node status and a grade 2 or 3 tumour.

    If a patient is eligible for testing, she may ask her oncologist to order the Oncotype Dx or Prosigna test. However, oncologists will not order these tests if they already have enough information, including treatment preference of the patient, to make a decision about the need for chemotherapy. For example, an oncologist may not request the test if they have already decided that the features of the cancer are too aggressive to avoid chemotherapy. Alternatively, oncologists may not offer testing if they know that the likelihood of the cancer recurring is so small that giving chemotherapy will harm more than help.”

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