With advanced breast cancer, the standard of care is chemotherapy, mastectomy, then radiation. First, systemic treatment to kill off and shrink down as much of the cancer anywhere in your body as possible. Next, local treatment with surgery to remove the cancerous tissue or area affected with clear margins. And then more local treatment with radiation to kill off any remaining cancer that couldn’t be removed with surgery. There is lots of variation within this basic approach, including the particular drugs, exact surgery, and timeline of it all. It depends on your preferences, your specific cancer and prognosis, the doctors and the treatment center. My cancer is stage 3 IBC, estrogen and progesterone (hormone) positive (ER/PR +) and Her2 -, which impacts specifically which chemo drugs/combos were chosen (and the use of hormone suppression therapy after chemo, surgery and rads). Here is a quick run down of what the big 3 treatments looked like for me. More information at the ibcnetwork.org and ibcresearch.org.
It is usually infused directly into your vein, often through a Picc line or Power Port (I had both), but can be taken orally (I did that too). It is a minor surgery to have these placed and I started with a Picc when I was pregnant and switched to a Port after my baby was born. I broke out in a terrible rash with the Picc because it has to be covered under a waterproof dressing all the time and my skin couldn’t handle it. The Port is put in your chest, just under the skin and it is accessed every time you get an infusion but otherwise just hanging out, low maintenance. Chemo can be dose-dense; a super high dose given every 2-3 weeks, or low-dose; a lower amount given more regularly. Regular blood work determines if you can receive it each time (certain counts are not too low/you are not too sick or vulnerable). It is a PROCESS. It takes a long time, several hours, but it isn’t usually painful or difficult during administration. It is all about the side effects. Trying to kill of the cancer in your body with poison has a lot of negative impact on your body. Hair loss is a recognizable one, but there is a long list, most of which are unseen. Nausea, fatigue, hand and foot toxicity (discomfort and discoloration of nails, sometimes they fall off), neuropathy (tingling and numbness in hands and feet). Each drug or drug combination has its own list and they affect everyone differently. You are given pre-meds to help with some of this and other medication to manage things as they come up. So much medication! And it doesn’t always work.
My first drugs were a combo of dose-dense Adrimiacyn and Cytoxan (A/C), 4 infusions, 2 weeks apart. My second drug was Taxol, 12 low dose weekly infusions. My complications were minimal, relatively speaking, but the impacts build up over time. Mostly, I just felt crappy a lot of the time and did a lot of sleeping. Cancer centers have different policies, but we were allowed to bring baby Daphne with us to all my infusions. Snuggling with a sleeping newborn was one of the few things I was really good at during chemo.
My nails towards the end of Taxol and in all my hairless glory during A/C.
*I will devote a post to hair, but let me say it felt like too much work for me to wear a wig or make up to mask my hair loss during chemo. Sometimes I look back at photos and wish I had made an effort here and there. Eh, whatever. I had a lot going on.
Usually a month after chemo, it is time for surgery. Some ladies have a bilateral (both breasts removed), I had a single modified radical mastectomy-one breast and lymph nodes removed. There are pros and cons to both. I went along with what my surgeon recommended and I wanted minimal recovery time so I could care for my baby. It was about a 4 hour surgery with an overnight stay in the hospital. I had two drains in place to collect blood and fluid for a couple of weeks after (that was the most uncomfortable part) that had to be stripped or cleaned a couple of times/day. I had a special camisole that zipped up the front and had pockets for the drains, which I lived in for the first few weeks. It was painful but manageable, the hardest part not being able to lift or hold my baby for a while. Cording, swelling and limited range of motion were long-term problems for me. Well, and the obvious missing body part. That took some adjusting, but I still prefer to be braless and without a prosthetic. Reconstruction is a major part of the process for some, but with IBC, not even an option for a year or two, especially because of the next steps in treatment. Right now I have no interest in more unnecessary surgery down the line. Although it is kind of awkward having just one boob, mostly it doesn’t bother me.
A month after surgery, it is time for “rads.” I had a set up appointment where they did scans, marked me up and positioned me on the table to plan out my very precise treatment, including 4-6 tiny tattoos that helped align me just right with the laser. Then a trial run, before jumping in to full on, 5 days/week for 6 weeks.We moved to Seattle for this part of treatment as it would’ve been impossible to travel back and forth daily. Some get more, some less, some 2x/day. I got in the same position on the table in the middle of a big room full of big machines and monitors. At first there were a few people right up in my business getting me set up exactly right, and then they would leave the room to zap me. So during the actual radiation you are just laying completely still by yourself. It only takes a few minutes for the lasers to do their thing, and I usually requested music to listen to while I was in there. All of it takes less than an hour, more like 30-45 minutes if it goes smoothly. I saw my radiation oncologist weekly to check on my skin, and nurses on staff as well. I was given pure aloe vera gel and Calendula cream to use daily, and needed some other stuff to manage the burns near the end. By 2 weeks after, my skin got dramatically better. I know some people’s skin gets much worse and some it is not so bad. Mine was in the middle.
*Most people are done with the big 3 here, but I had a lot of residual cancer at the time of surgery, meaning my previous chemotherapy was not effective, so my oncologist recommended another round of chemo during my radiation, to hopefully boost its effectiveness. It was a pill that I took twice/day at home. Xeloda. Only time will tell if it did the trick.