What I Wish I'd Known Before Beginning Chemotherapy

By , Caring.com senior editor
100% helpful

The handouts your doctors give you are all well and good, but they don't tell the whole story about what to expect during chemotherapy. To help you feel more prepared, we talked to more than 25 cancer survivors to find out what *they* wish someone had told them about cancer treatment -- the tips and insights that might have made the months of chemotherapy a little less difficult. Here's what they told us:

1. It's different for everybody.

Many cancer patients cited this as the most important thing they wanted others to know. "Don't listen to the horror stories!" counseled one colon cancer patient. "There's always someone telling you how sick or exhausted they were, but none of that happened to me, and I wish I hadn't been so scared."

Rule number one, then, is to take scare stories with a grain of salt, or at least a dash of skepticism. Some people do suffer terrible nausea, excruciating pain, or crushing fatigue. But there are just as many cancer patients who said they didn't experience these side effects, or who experience them only minimally. Still others said they experienced most of the "typical" symptoms but didn't find them as troubling as they expected. And of, course, there are some for whom the treatment is much more debilitating than they ever thought possible, and no one else's experience prepared them for that, either. Bottom line: It's different for everyone.

2. Emotional reactions are very personal -- and by no means universal.

Even a symptom or side effect that's extremely common may be experienced very differently from one person to the next. "I'm a huge foodie -- I love to cook, I love to eat, and good food has always been a big part of my life," said one lung cancer patient. "So when chemotherapy made me lose my sense of taste, that was so traumatic for me; it made me feel like a different person." Others find the taste changes that come with cancer treatment a minor inconvenience.

Another cancer symptom that causes emotional reactions all over the map is fatigue. Some cancer patients learn to take it easy fairly easily, while for others fatigue can trigger full-on depression.

3. Cancer treatment's different now, and what you experienced before may be out of date.

"I'd cared for my father when he was dying of cancer ten years ago, so I thought I knew what to expect," one cancer patient said. "I was terrified of going through the nausea and vomiting, and I kept joking with everyone about how I was finally going to lose those 20 pounds. But the new antiemetics work so well, I had hardly any nausea at all, and I actually gained weight from the steroids and Tamoxifen."

Thanks to the advent of new antinausea drugs, new painkillers, and growth cell factors to boost blood cell counts, it's possible to treat and even prevent some of the most devastating side effects that cancer patients experienced in the past. That doesn't mean the new drugs work for everyone or that you won't experience difficult side effects. It just means that what you saw someone go through in the past isn't necessarily what's in store for you.

4. Small things can make a big difference.

There are many things about our bodies that we don't appreciate until they change, cancer patients say. And while "major" side effects may turn out to be less upsetting than expected, minor ones may surprise us with their severity. "I didn't find being bald upsetting at all; it felt like a badge of honor," said one cancer patient. However, she added, "having no eyelashes was much more difficult; my eyes were constantly watering because there were no lashes to keep the dust out. Who knew lashes had such an important function?"

5. Ask every question you think of -- and more.

"I wish patients knew how important it was to ask questions when they have the chance, so they're not worrying later, alone and scared," said one Kaiser Permanente oncology nurse with many years of experience. "We want to provide patients with as much information as they'd like, but it's sometimes difficult to know how much a patient wants to know."

Cancer patients too said they found doctors and nurses much more forthcoming if they asked lots of questions. "I think because some people want the straight scoop and some don't, doctors don't open up too much about what to expect unless you ask," one lung cancer patient said. "Once I said, 'Lay it on me, I can take it,' the doctor told me the stuff that was harder to hear."