Next steps

The thing with cancer is that nobody tells you what to do.

When I went in to see my surgeon the day I got the results of my biopsy via email, I expected her to lay out the exact plan of attack. I wanted her to tell me exactly what to do for my best chance of survival and give me my action steps.

But she didn't do that. Instead, she gave me "options." Leaving me to make decisions about extending my life that frankly I'm ill-equipped to make.

What the hell do I know about cancer?

The only thing that was made clear to me was that at some point, I was going to need to undergo chemotherapy. The biopsy showed a triple negative cancer - meaning hormones weren't driving it, and tamoxifen is not an option. If you google triple negative breast cancer, you'll find some scary shit. It's particularly gnarly and aggressive. So chemo was a must.

But how and when chemo would happen would be dependent on how I wanted to remove the tumor. Here were my options as presented to me by my surgeon:

Option 1: Double mastectomy (I remember my reaction: "You want to take both of them???") - given the diagnosis and higher chance of recurrence, I could choose to have both breasts removed at the same time. Pros: getting all surgeries done at the same time - but there's no definitive evidence this prevents recurrence. So why do people do it? Peace of mind maybe? Cons: obviously, having 0.0 boobs is not ideal. Plus you have to wait until you are fully healed to begin chemotherapy, which is of the utmost importance. If anything goes awry with the surgery (infection at the surgical sites), chemo would need to be delayed which is not good.

Option 2: Single mastectomy - Just remove the broken boob. Pros and cons are similar to having a double mastectomy, except you are only losing one breast and the surgery is less complex so hopefully you'd heal sooner with no problems and begin chemotherapy asap. This is what my mother had done so many years ago, and was the option she was pushing for me to do.

Option 3: Neoadjuvant chemotherapy with a lumpectomy to happen at the end of treatment - There would be a chance to save the broken boob by going this route. I google'd the hell out of triple negative cancer and it seemed this was a popular approach given how important chemotherapy is in the treatment of this type of cancer. With this approach, chemotherapy is given before surgery. The tumor actually shrinks as a result of chemo, making removal a little bit easier. Pros: Starting chemotherapy sooner results in a better prognosis, and you have visible confirmation treatment is working because your tumor shrinks. Plus, who wouldn't want to save their boob? Cons: You're living with an intact tumor in your body for a longer period of time. You also won't know your cancer staging and whether or not cancer has spread to the lymph nodes until surgery actually occurs. You also risk not getting cancer-free surgical margins with a lumpectomy.

So I couldn't really take any next steps until I made a decision about surgery. My surgeon couldn't give me any information about staging - that would happen after surgery once they removed some lymph nodes to see if the cancer had spread. She did share that they could see an enlarged lymph node on my ultrasound and suggested performing a biopsy that day on that particular lymph node to check. If positive, we'd know sooner rather than later if it had spread. If negative, we'd still be unclear on staging as they'd have to check all of the "sentinel lymph nodes" as they are called to be sure it hadn't spread.

Of course I said yes, even though biopsies suck. I also provided some blood for genetic testing as it had been a few years since my mother had completed testing and maybe there were some new findings since then. A positive result could help me lean towards double mastectomy. But overall, I left her office feeling overwhelmed by the fact I really had no clear plan for treatment.

She did refer me to an oncologist, at least, whom I met with later that week. He - just like my surgeon - wouldn't tell me what to do, but suggested if I were his wife/daughter/sister/mother, he'd encourage a double mastectomy. But, as I understand it, oncologists are scared shitless of triple negative cancers so I think they all lean towards the most aggressive approaches.

It took two weeks to make an official plan for treatment - and it was the longest two weeks of my life.