It's startling, when you visit the "side effects" page on the website breastcancer.org.
The list that pops up reads like "100 different ways to be in pain"--stomach pain, armpit pain, back pain, bruising, bone and joint pain, chest pain, headaches, leg cramps, mouth sores, skin sensitivity…All, potential side effects of cancer.
The disease itself causes pain and so do many of the treatments.
And if you've ever sat next to someone with a chemo IV in their arm, you might know what I'm talking about here.
Pain is the ugly step-sister of cancer. They go hand in hand.
PUNDOLE: If somebody hugs me, I'll feel pain on my ribs. Or if someone comes in to kiss me, my face and my…when they push me back a little bit, I just feel like I'm going to break.
Judy Pundole has stage IV breast cancer. Doctors have given her anywhere from 10 years to 6 months to live.
We spoke at her home in Shaker Heights. She arranged herself carefully on the couch. Her knees were bent, feet up on the coffee table, and she was wrapped in a blanket.
PUNDOLE: That's hard, you know when they're trying to help me out of bed--put an arm behind me--and I'll say "Be careful, you're hurting me," too many times, that can be annoying for them.
Pundole is 66 years old, a retired schoolteacher. She traveled the world with her husband and taught English in the Philippines and Saipan.
She didn't anticipate the pain she's been in. She has head and neck pain, cheek pain, bouts of intense pain in her Achilles tendon; she’s also battled gout, shingles and constipation, and says that the pain in her bones feels like when a dentist grinds into your teeth.
A wheelchair is folded up in the corner of her living room. She's been in and out of it over the years.
PUNDOLE: Sometimes I feel like I'm older than my mother. My mother is 87 years old.
Cancer pain can come from the tumor pressing up on nerves or organs. It can also come from nerve damage or other effects of chemotherapy, radiation, or surgery.
Pundole takes methadone, a narcotic painkiller, and is fortunate to have her pain under control now.
But many don't. Cancer pain is widely undertreated. Studies indicate that nearly half of those with cancer don’t get proper pain care even though much of that pain could be avoided or reduced.
Here's the problem: oncologists are great at what they do: find and destroy cancer. But many of them aren't so great, and don't have much training, in treating pain.
This shortcoming was confirmed recently in a study in the Journal of Clinical Oncology which found little progress in this area over the last 20 years.
DAVIS: We had about a one hour lecture on morphine and some lectures on nausea. So I felt very well-equipped to manage the disease and very ill-equipped to manage the experience of cancer.
Dr. Mellar Davis is an oncologist at the Cleveland Clinic. After practicing oncology for a while, he went back for more training in how to manage pain.
He says patients often have misconceptions about cancer pain:
DAVIS: Pain means I'm dying. If I take a lot morphine that means I'm going to get addicted.
Pain doesn't necessarily mean the cancer is growing. Even survivors can have lingering pain from the nerve damage.
And, there's a range of painkillers out there -- opioids, or narcotics, and non-narcotics like anti-depressants and most patients do alright on them, and get relief.
Physical therapy also can relieve some cancer pain. Heat pads, massage, and things like guided imagery or Reiki may help too.
Davis says the take-home message is that cancer pain can be managed.
This is important to remember even when talking about a form of pain called “breakthrough cancer pain.”
This type of pain comes on suddenly and is very intense. It can be shooting, sharp, or radiating pain that lasts anywhere from a couple minutes to several hours.
Patients need additional help to control this. And there are some options out there, such as a quick-acting narcotic lozenge, but the solutions aren’t perfect because the drugs can cause side effects like severe constipation and nausea.
The best plan may be for patients to talk to a pain specialist, such as someone in palliative care.