What I Wish I'd Known Before Beginning Chemotherapy

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 Cancer treatment's different now, and what you experienced before may be out of date.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

Tips and insights 6-10

6. Everyone has a different learning style -- and it's OK to share yours with your doctors.

Cancer treatment is incredibly complicated. For some patients, a cancer diagnosis is an invitation to become a research machine, while for others the constant onslaught of information is intimidating and even frightening. Without knowing where you fall on this spectrum, doctors can err in either direction, spouting out so many long scientific names that you leave understanding nothing, or presenting things in such simplistic terms that you feel they're talking down to you.

"Some patients can handle lots of technical information; others start saying they're overwhelmed and just want the doctor to tell them what to do," said the Kaiser oncology nurse. "So some nurses, over time, become hesitant about talking too much. But if someone asks questions, I'm happy to tell them everything they want to know."

So it's up to you to let your doctor and the rest of your medical team know if you want to understand the science behind your treatment or if you'd rather just be given your marching orders.

7. Chemotherapy itself isn't that bad.

Yes, it's scary the first time, especially if you do n't like needles or the sight of blood. But many cancer patients said they were surprised that once they became familiar with the chemotherapy procedure, it wasn't as bad as they'd expected.

"I thought the infusion center was going to be horrible -- dank, dark, and gloomy looking," said one breast cancer patient. "But it wasn't. The one I go to is light, cheery, has a beautiful aquarium, and some artwork. They serve drinks and some nibbles."

8. Make sure the weight listed on your chart is correct.

This seemingly minor issue was mentioned by several people caring for cancer patients. Believe it or not, it seems that mistakes with weight are fairly common. Why is this so important? Because chemotherapy dosage is calculated based on weight, so if the weight on the chart is wrong, you could end up getting too much or too little. If your weight changes during the course of your treatment, bring that to the attention of the medical team as well.

9. Bring someone with you to appointments.

You've never needed a friend to accompany you to the doctor in the past, so why is it different with cancer? Because cancer is much more complicated, and the information presented is much more overwhelming, than is typical for most illnesses. Even if you feel hesitant, wondering, 'Why bother someone and make them take time out from their day?' do it anyway, cancer patients said. Having someone there to take notes, hold your hand, and even just chat with the doctor when you're stuck for words can make an enormous difference in easing the decision-making process.

"I didn't even know people were bringing friends until I joined a support group," said one lung cancer patient. "Then everyone was talking about it one day, how great it was to have someone there asking questions and taking notes, and I wished someone had prodded me to do this."

10. Not all side effects are listed in the handouts.

Ever listen in on a group of women exchanging labor stories? Every story is different, because people's bodies handle pain and other issues differently. When it comes to the side effects from chemotherapy drugs, the ones doctors tell you about tend to be the ones reported by a fair number of people. But there are other side effects that are far less common, so no one bothers to mention them. You may even find you have a side effect all to yourself -- and that doesn't make it any less valid.

Don't let anyone make you feel dumb for asking about a side effect, even if they've never heard of it. Almost every cancer patient said they'd had the experience of asking about an unusual or obscure symptom and being told it was probably unrelated to the cancer. Then they asked around and found other cancer patients who'd dealt with it, too.

"I found my chemo cocktail left me with extreme light sensitivity," one patient said. "My doctors and nurses had never heard of that side effect, but I posted on an online cancer support board and several people immediately said, 'Me too! I thought I was the only one!'" She was reassured when other patients in the online support group told her their light sensitivity disappeared a few months after chemotherapy finished.

Melanie Haiken

Melanie Haiken discovered how important it is to provide accurate, targeted, usable health information to people facing difficult decisions when she was health editor of Parenting magazine. See full bio