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Breast Cancer Treatment Side Effects May Last for Years

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Me_in_cocceticut_max50

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Posted about 1 year ago

 

 

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  Treatment-related complications are common in breast cancer patients long after their therapy has been completed, a new study says.




Researchers looked at 287 Australian breast cancer patients and found that more than 60 percent of them had at least one treatment-related complication up to six years after their diagnosis, and 30 percent had at least two complications.




Complications included skin reactions to radiation therapy, weight gain, fatigue, surgery-related issues, upper body symptoms and physical limitations, and lymphedema -- a painful limb-swelling condition.




"Our work provides the first accounting of the true magnitude of the post-treatment problems suffered by breast cancer patients, and serves as a call to action for proper monitoring and rehabilitation services to care for them," study leader Kathryn Schmitz, associate professor of biostatistics and epidemiology at the University of Pennsylvania, said in a university news release.




"We can no longer pretend that the side effects of breast cancer treatment end after patients finish active treatment. The scope of these complications is shocking and upsetting, but a ready solution for many of them already exists in rehabilitative exercise," said Schmitz, who is a member of the university's Abramson Cancer Center and serves as a senior scientist on a committee overseeing creation of a surveillance model for breast cancer survivors.




The study was published online April 6 in a special issue of the journal Cancer that focuses on the physical late effects of breast cancer treatment and ways to prevent, monitor and treat these conditions.




There are 2.6 million breast cancer survivors in the United States, the authors noted in the news release.




Many factors can prevent proper monitoring of breast cancer survivors for the types of complications identified in the study, Schmitz and her colleagues said.




Patients may have fragmented care and receive different types of treatment at different hospitals; both patients and doctors may believe that certain complications are "expected" and "normal" and don't warrant treatment; and many breast cancer patients aren't aware of or referred to physical therapy professionals.


 
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 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."

 

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 don'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.

 
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Ways to Cope With "Chemo Brain"




Chemo brain: frustrating but real


The chemicals used in chemotherapy are powerful -- strong enough to kill cancer cells. That's a good thing, but they also seem to have a little-understood effect on the brain, causing cognitive problems such as memory lapses and loss of concentration.

 

While it's tempting to think that these problems are all in the patient's mind, they're all too real, experts say. In fact, a study at the University of Rochester Medical Center found that more than 80 percent of people who receive chemotherapy for cancer report annoying memory and concentration problems that often linger for months, even after treatment is finished.

 

"This is one of the things cancer patients get most frustrated about, because it makes them feel like they're not themselves," says Gloria Nelson, a senior oncology social worker at Montefiore-Einstein Cancer Center in New York City. "They used to see themselves as competent and capable, and now they keep losing things or can't finish a book because they can't remember the page they just read."

 

8 Cancer Lessons: What We Wish We'd Known


How to help someone deal with chemo brain


Here are some things you and the person you're caring for can do to prevent chemo brain from interfering with his ability to carry out day-to-day tasks and stay on top of his life.

 


1.Organize his home and car. Establish specific places to keep his keys, wallet, cell phone, and other important items. For example, you might place a hook near the front door where he can leave his keys when he enters. Don't move everything around, though, since keeping things in familiar places will help him remember where they are.

2.Make lists. Have him keep a small pad of paper in his breast pocket -- or if it's a woman, in her purse -- and have him write down anything and everything he'll need to remember. He can make lists of medication schedules, things he needs to do that day, items he needs at the store, names he wants to remember, even where he parked his car.

3.Use a calendar or organizer. Keep track of appointments, tasks, things to do, social commitments, and special days such as birthdays and anniversaries. If it's a wall calendar, hang it in a prominent place, perhaps on the refrigerator, and remind him to look at it often. If it's a personal organizer, he can carry it with him and then keep it by the phone or on the kitchen counter when he's at home, so he can remember to enter information. When he writes down an appointment, have him include pertinent information, such as the address and phone number.

4.Leave reminder messages on his phone. You can use his answering machine or voicemail to remind him of appointments, events, and other information he needs to remember.

5.Have conversations clear of distractions. When you need to talk to him about something you want him to remember, have the conversation in a quiet, uncrowded place to avoid distractions. Suggest that he make this a habit with others as well.

6.Repeat information out loud. When the doctor or someone else gives you and the person you're caring for important information, have him repeat it so it's committed to memory. Suggest that he write down key points such as instructions and directions on his pad or personal organizer and say them out loud while doing so.

7.Proofread everything he writes down. One way that the fuzzy thinking of chemo brain drives people crazy is that it causes them to make silly spelling and grammar mistakes, such as leaving out words. Have him proofread everything he writes, or offer to read it for him. You want it to be clear for others and to you if you need to refer to it later.

8.Do one thing at a time. Talk to him about the dangers of multitasking, which is not a good strategy for those with chemo brain. If he can train himself to do one task at a time with complete focus, he's much more likely to complete it successfully and remember it afterward.

9.Use memory cues. Memory experts say one of the best ways to commit something to memory is to use visual and auditory clues. If your family member keeps misplacing his cell phone, for example, he can train himself to pause and look at the phone where he's placed it on the kitchen counter and say to himself aloud, "I'm putting my phone on the kitchen counter."

10.Put his brain to work. A fun way to boost memory is to do puzzles like Sudoku or crosswords or to learn something new. Suggest that he attend a lecture on a topic that interests him, take up a new hobby, or pull out his old Spanish or biology texts and brush up.

11.Let people know about memory issues. Unless he's just too embarrassed, it can be helpful to tell family and friends that he's having memory issues. They can help with reminders and will be more understanding when something slips his mind.

12.Get plenty of exercise and sleep. Deep sleep is essential for memory and concentration, and getting at least some physical activity each day will help him sleep better. If pain or other problems are interfering with his sleep, talk to his doctor about it.

 

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