I've been away from The Huffington Post for a couple of months because my mother was in the last phase of pancreatic cancer, a somewhat rare but especially devastating cancer. The last 10 months demanded a lot of decision-making on her part. While those decisions about one's health care in the wake of a cancer diagnosis belong to the individual patient, in consultation with his or her physician, there are some questions that my mother asked -- or didn't know to ask until things went awry -- that may be helpful for others to keep in mind when chemotherapy is presented as an option.
Is chemotherapy part of a larger plan to cure the cancer, is it designed to delay metastasis, or is it used to treat particular symptoms?
Unless operable, pancreatic cancer is terminal, and very few patients survive a year after diagnosis. In my mother's case, chemotherapy was not going to cure her, and her doctors were up-front about that. When her oncologist recommended chemo anyway, her first reaction was, why bother? The physician explained that his reasoning was twofold: 1) The cancer hadn't spread, and if the chemo worked, it could delay that inevitable progress for a few months, and 2) she was already having pain that was probably related to the tumor, and chemo might "calm" the tumor and reduce pain that would otherwise increase.
Because pancreatic cancer can cause excruciating pain, my mother opted for a round -- five or six treatments -- of chemo. Cancer types and stages vary, as do patients, so her decision shouldn't be a gauge for others. But it's important to know why you opt to pursue -- or not pursue -- any treatment, especially one that can be as demanding on the body and your life as chemo.
What are the side effects of this particular chemo?
Most of us have heard about the nausea that most chemo can cause, but that's a symptom physicians can treat with additional medication. Hair loss is another symptom patients fear. My mother's chemo drugs caused thinning without complete baldness, but it's important to know what's likely so that a patient can plan ahead. You may worry about these side effects most, while your physician may worry much more about diarrhea and dehydration.
Each drug and chemo combination has different side effects. Some drugs leave the patient extremely susceptible to cold -- cold beverages cause pain -- for several days. If your oncologist says "neuropathy," for instance, ask for more explanation. Does that mean tingling or losing sensation altogether? Will it be only in the hands and feet? Is the effect cumulative, getting worse with each treatment?
Ask about chemo brain. Find out what that might mean.
PICC or port?
Ask how chemo will be administered. Some drugs can be taken as a pill or injected into a particular body part, but a lot of chemo is administered into the circulatory system, sometimes continuously over a couple of days. Even before the doctors mentioned chemo, my mother had a PICC -- peripherally-inserted central catheter -- line in her arm for administering IV fluids and medications. Basically, it's a tube inserted into a vein, usually in the upper arm and often under light sedation, and leading to a large vein.
A PICC line increases the risk of blood clots and infections, so my mother switched to a PowerPort, a cylinder implanted under the skin near her collarbone, with a catheter leading to the large vein. Medications, fluids, and even CT contrast can be given through the port, and also blood can be drawn from it, eliminating lots of extra sticks in a patient's arms. Nurses seem to prefer the port over other options, but insertion is an invasive procedure -- the incision heals over the port afterward -- performed under sedation.
What if the side effects become intolerable?
My mother had some severe side effects during her round of chemotherapy. Her oncologist adjusted the drug combination, eliminating one of the three medications. In addition, he delayed a treatment for an extra week when more recovery time seemed necessary or she had become dehydrated.
A patient who is on the road to a cure may want to tolerate more misery during treatment than a person whose time is very limited even with treatment. But even then, if side effects become life-threatening -- say, anaphylaxis, a severe allergic reaction -- it's helpful to know what the back-up plan is going to be.
How do you know whether the chemo is working?
If a patient opts to pursue chemo, you'll probably pay close attention to the negative effects. But how does someone judge the positive effects of chemo?
Ask your physician whether he will monitor cancer markers in the blood, do regular CT scans, or perform other examinations to determine whether the chemo is working. Also, find out when during and after the round of chemo he or she is likely to be able to measure the positive effects. If the chemo works well, would an additional round be added, and if so, would that follow immediately or when indicators show the cancer may be progressing?
I share these questions because my mother felt a little more in control of her situation when she had an honest back-and-forth with her physicians. Doctors don't always volunteer information, and some don't want to introduce the downside, knowing that presenting the best-case scenario offers goals and hope. Often, however, patients are faced with big decisions the first time they meet their oncologist. It's not easy for you to feel clear headed in the face of a cancer diagnosis. But asking questions -- writing them down before your appointment -- can give you helpful information and also give you time to think through your decision.
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