Oncology Update 

Good morning. Today is Tuesday, and I am writing an update from yesterday’s appointment. I am exhausted as I write this and just in weird headspace. My appointment with my oncologist was nearly two hours and full of names of medications, plans, side effects, and risks to consider and accept. I felt sweaty and nervous, not helped by the fact that the exam room I was in was hit directly by the sun, nor that the PA was a fast-talking dude.

It turns out that once in a blue moon, the 3rd party pathologists are wrong, and that is what they were when they examined the biopsy from the lump – they determined it was Estrogen receptor positive. Upon the review of the actual mass, it turns out it is triple-negative breast cancer. There was no mention of radiation anymore under this new plan.

Knowing it is triple negative, they will implement a very aggressive action plan. And it turns out that the sequencing of how TNBC (triple negative breast cancer) is treated with the “gold standard” is that I would have gotten chemo therapy FIRST and then surgery to remove it. Alas, here we are. I am glad that the surgery happened, though – I needed it out of my body. The knowledge that it was in me and growing quickly was concerning.

The gist of the plan is:

Following Monday, I will have CT scans to document my chest/ abdominal area. My morning post-op appointment will determine how the wounds are healing.

I will have an echocardiogram to determine if my heart is good to go, and I will have to schedule an appointment with a fertility specialist ASAP.

I will be reevaluated in two weeks to determine if I am healthy to start treatment. I will likely have to face the possibility of freezing my eggs if I want babies of my own, and honestly, this part scares me. I loved having the option of whether or not I wanted a child, but now it feels like such a daunting task when faced with everything.

I will have to schedule having a port installed in the upper chest area to aid in the delivery of the treatment. Intravenous delivery is not advised since it increases the likelihood of negatively affecting the skin surrounding the area.

Given the green light – they want to start – so likely 2 weeks – the first session will be 4 hours and scheduled for March 3rd. Subsequent sessions will be three-ish hours.

It will be a doozy treatment.

12 weeks of traditional chemotherapy – once every week.

2 weeks rest

and then 8 weeks under another aggressive treatment – it’s ddAC, but I honestly haven’t looked this up. This will make me lose my hair, and they said I could go down the route of cryo-something to try and keep my hair or get a prescription for a wig (the prescription will be so insurance can pay for it).

In the background, it will be 1 year of immunotherapy occurring alongside this plan, along with monthly shots of a drug that will make my ovaries “sleep” in a safe way while all this is going on.

Side effects.

• Nausea
• Diarrhea
• Constipation
• Excessive fatigue
• Loss of hair with the ddAC component
• Nail changes—I have to keep them short and clean. It’s a tragedy if you know me. This may be a chance for me to try press-on nails or something. Pedicures and manicures are not advised to reduce the likelihood of infection.
• Taste buds change – food will now taste differently for me.
• Increased dehydration, so gotta up the water and electrolytes.
• Increased likelihood of immune-induced issues (skin, hepatitis, cardiac events/ and lung disease)
• PERMANENT RISK of heart failure for now until the rest of my life due to the ddAC – so my cardio will be essential to keep up with
• Increased risk of Leukemia

He says I need to make sure to live as normal as possible, and I will try my best, but I want to reiterate that I’m so scared. I am SO happy I did not spiral and look up all this back when I was first diagnosed – that would have been a terrible spiral. But yes, I am scared.

This is a lot of information to process, but it is a journey already underway. It has already shown multiple ways in which this process will test me, mostly in managing my family’s expectations. I have an aunt who, in her 60s, went through BC and chemo – she remained steady and did not lose her hair, and guess who I am now being compared to? Not so much the comparison but the expectation that I will respond to treatment the same way she did, and that’s unfair, and yet there is nothing I can do about it. I continue to try to find resources for my family but am saddened that I’ve reached no viable resources, leaving me as a mediator again.

This is as much mental as it is physical, and I hope my strategies toolkit will come in handy. When I was experiencing deep sadness during grad school, I relied on my planner to help me accomplish all my tasks—I will likely have to rely on that system again.

The overwhelming sense of being robbed is something I’m trying to wrestle with, and I hate it so much.

Anyway, I scheduled my therapist appointment, and I have to email my supervisor at work to let her know about these details. I can hopefully go back to work in two weeks, but given the schedule of treatment delivery, I will have to ensure I remain remote and minimize the travel days to avoid infection or getting sick. Masking will be my best friend. I have no idea how this news will be received – FMLA does not cover me; frankly, they are not expected to continue working with me, and they could easily let me go. I am terrified of this possibility, but I pray I can remain employed and with continued access to health insurance.