I started the email to friends and family with the subject line: You might not get what you want …
I sure didn’t get what I wanted. But the experts who have all weighed in on the yes/no question of whether or not I get chemotherapy are making sure I get what I need. The answer was yes – we highly recommend you get chemotherapy.
In that moment, it really made the fact that I have cancer real. Until then, with the likelihood of chemotherapy low, even though I have the scars to prove they cut something out of me, it didn’t really feel like I had cancer. Until now, it’s been a mind game.
Now it becomes real. Chemotherapy will make sure I ‘feel’ like I have cancer.
It is hard for me to find the right words to say how much I don’t want to go through this. Who in their right mind does, I can hear you say. I fought against it every step of the way. So did my oncologist. Multiple pathology reviews were ordered and we lost every round. I sent my slides away to another institution in a different country – and the answer came back the same.
The Impact of Pathology Results on Treatment Decisions
It all boiled down to the status of my sentinel nodes – the pathology results from the lumpectomy said very clearly that all nodes taken were clear of cancer. No evidence of cancer found in any node. Nada. But. And it was a BIG but. The first (and then the second and the third) pathologist found evidence of lobular cancer ‘in transit’, in the fatty tissue beside one node. It didn’t get into the node, it was only beside one node, not all three, and it was considered micrometastases. Tiny tiny tiny.
That comment in the pathology report change the status from pN0 (p = pathology, n = node, 0 = no cancer found) to pN1a (the 1a is micrometastasis). They considered that because it was beside the lymph node and in lymphatic tissue, it should be treated as if the lymph node was positive.
Sigh. That means chemotherapy is now highly recommended. With no nodes positive, you don’t get chemo, just radiation and endocrine therapy. With a positive node – even just one – chemo becomes a part of your treatment. You can always say no – and I thought about it, long and hard. The tipping point for me was – how much will this reduce my risk of recurrence if I agree to chemotherapy.
Doing the chemo will reduce my risk of recurrence by at least 30%. That’s a big roll of the dice if I didn’t do it. My risk tolerance wasn’t that high. I’d set it at anything less than 10% and I wasn’t going through it. 30% made the decision easy. Not pleasant, but easy.
It was interesting to me that my oncologist was fighting just as hard as me to make the chemo option go away. On the one hand you think ‘this is that person’s profession, their specialty, what they do every day’ and she’s trying to work herself out of a job. On the other hand you recognize that she’s fighting for your best treatment, regardless of any other consideration. I liked her even more than I already did. She wanted what was right for me, and wasn’t in a rush to shove poisons in my veins.
It’s only four sessions. Only four. Four is enough, and each one will be brutal. My hair will fall out around two weeks after the first infusion. At each infusion I’ll wear ice gloves and ice socks to try and prevent the toxins from making my nails fall off. I’ll take a drug the day before and two days after to prevent allergic reactions to the chemo elixir they pump in. Anti-nausea and heartburn drugs will be part of my daily regime. Quite the change for someone who takes not a single drug (not even aspirin) – from nothing to 5 different drugs daily, plus the chemo.
And, after each session I have to inject myself for 10 days with a shot of a drug that will protect me from getting an infection. Did I mention yet that I really really really hate needles? Having to wield a needle myself and willingly inject myself will be a true test of courage.
Acceptance vs Resignation
When I found out I had to get chemo, it wasn’t really a surprise. In my heart of hearts I’d known. The more days that passed that no one was rushing forward with “good news – the results are in and no chemo”, the more certain it became that the news was not going to be good. Over the three weeks that it took for the decision to sort itself out, I’d slowly been coming to terms with the fact that I’d be getting chemotherapy.
So when I heard the official word, I accepted it. I wasn’t resigned to it – I’m still not. Being resigned to something, to me, implies defeat and negativity. I accept that we did everything we could to make sure that the decision was an informed one based on evidence and best practice. We did the best we could and this is the right thing to do. I don’t like it, and I wish with all my heart it was different. but I’m doing it. As with any insurance policy, there’s no absolute guarantee. We pay for insurance to reduce risk as best we can – and chemotherapy combined with endocrine therapy is the best we can do. I accept that.