Thursday, February 28, 2008

When a friend gets sick

Several years ago, an acquaintance of mine died of breast cancer. We were not close friends but I had known her for years and our sons were good friends—they still are. What’s most important, though, is that I highly valued her as a person—she was simply one of those people who are plain good. I knew her cancer had returned and that she was terminal, and I kept intending to call her and tell her that she was important to my life. I didn’t call in time and I deeply, deeply regret how slowly I moved.

Why didn’t I just pick up the phone and call whenever the thought occurred to me? Part of me thought it would be an intrusion—she was sick, why would she want to talk to me? Part of it was fear—I didn’t want to call and hear she was too ill to talk, or worse. All of it, in retrospect, was stupid.

So, when a friend recently mentioned not knowing how to react to an acquaintance who had recently been diagnosed with cancer, I told her to do what I valued when I was sick:

• Visit. I cherished those times when my family and friends came to me. Those visits gave me courage, motivation, and strength, and brightened my life. One of my alums was in town and stopped by for a brief talk and he made me laugh and think about the world elsewhere. He emailed his alumni friends with a “thumbs up” on my outlook, prompting other alums to email me, which I loved. What was especially great was that, when he visited, my sister and brother were both here as well. I had a full house of people who cared about me. What an elixir!

• Call. If you don’t feel comfortable barging in, make a brief phone call. If your friend is not up to talking, tell her you’re thinking of her and ask her if there’s a better time to call again.   I got several short calls from people at various levels of connection to me and they all perked me up. Never once did I think, “Why is this person bothering me?” I always used to worry about invading people’s privacy. Showing concern is not an invasion.

• Send cards. A good friend sent me a card every two weeks or so while I was going through treatment. They were often funny, even irreverent, and helped me keep my perspective upbeat. Now I know how it feels to open up an envelope and find it filled with caring thoughts, so when friends or acquaintances get sick, I make sure I send at least one card, with a note telling them they are in my thoughts and prayers, which they are.

• Emails work as well. I loved the chatty emails I got that expressed interest in my health but touched on broader issues. Funny comments were always welcome.

• Offer food, within limits. A neighbor stopped by with a fresh loaf of bread and I was warmed by that thoughtful gesture. A friend brought me a smoothie and sat down to chat while I drank it. I was not receptive to much food, though, partially because I was trying to eat healthy and partially because food did not always taste that good, so the bread and smoothie were bland and thoughtful choices. Roughly 60 percent of all women going through chemotherapy gain weight, so don’t tempt them with brownies. Pick up a bowl of fresh fruit instead.

• Do lunch. People going through treatment still like to get out and they still eat, although their appetite will probably be somewhat modified. Ask your friend to choose the restaurant. If she has no preference, go somewhere that keeps its food smells to itself—the odor of fried foods can be especially icky to a chemo patient. I have a highly sensitive nose and was occasionally even offended by the smell of mashed potatoes. I continued to enjoy the aroma of fresh coffee, though.

• Send flowers. A graduate sent me a fun bouquet with a “Thinking of you, Prijatel!” note, which was a cheerful surprise. I still have the vase—shaped like an ice cream cone—and it makes me smile and think of her every time I open that cabinet.

• Be normal. In general, don’t treat sick people like they are broken. Show that you care and are interested in their well-being, but try for as much normalcy as you can muster. Ask them about their illness and how things are going, listen well, and then talk about other things. That way, you acknowledge their illness, you show care and respect, and you open them up to thinking about things other than being sick.

Sunday, February 17, 2008

British Black Women at Risk of Hormone-Negative

British black women are more likely to have estrogen-receptor-negative breast cancer and to get the disease at a younger age than white women, according the research published in the  British Journal of Cancer .  The clinical study, of black patients from 1994 to 2005 at an East London hospital, determined that these women:

• Were diagnosed at a median age of 46, or 21 years younger than white women.

• Had a higher rate of more advanced tumors and lymph-node involvement.

• Were more likely to have triple-negative tumors.

Results of this study are reflective of earlier research on African-American women.

Saturday, February 16, 2008

Breast Cancer Web Info Generally Accurate

Patients can depend on the information in most breast cancer Web sites, according to a study published in the journal Cancer. Researchers at the University of Texas looked at 343 Web sites and found only 41 inaccurate statements on 18 of the sites, meaning a 5.2 percent rate of error. Information about complementary and alternative medicine (CAM), they said, was 15.6 times more likely to be inaccurate than information on Western medicine. They tested accuracy by asking clinician-reviewers to assess content.

There is not much online about hormone-negative-breast cancer, but it is good to know that what is there is likely to be on target. And the coverage is increasing—most likely because of increased research on negative.

I found the Web invaluable when I was diagnosed. Apparently being a bit of an egghead, I used the cancer sites as a starting point, then dug into the research itself for a deeper perspective. Few folks want to read medical journals, though, and the sites I have listed on the left do an excellent job of presenting up-to-date research in accessible language. Research articles were especially important in my quest for information about hormone-negative. I especially like’s research updates

My advice on using Web information:

• Use multiple sites for multiple perspectives. This will help guard against accuracy problems—you’ll see inconsistencies and know which information might be suspect.  This is true of all media—you're more likely to get a broader base of information if you have a broad base of media use.  Depending too much on television can be especially problematic, as TV reporters have only a minute or two to decode complex information—and you have no opportunity to go back and reread the data for clarity.

• Use sites associated with known organizations, or that come recommended by others.  

• Don’t look to cancer chat rooms for information. These are OK for support, perhaps, but it’s too easy for a person to share her misinformation in these arenas.   

• Don’t forget good old-fashioned books. In an earlier post, I recommended my favorites .

• Talk to your doctor or nurse about questions you have, and don’t let them dismiss your research or your concerns. They are medical experts, but it is your body and your life. If you don’t feel your doctor is on the right track, get another opinion. This is too important an issue to leave to somebody you might not entirely trust or who does not answer your questions with clarity and respect.  My favorite doctor—my radiation oncologist—even drew me a picture of how radiation works. 

Sunday, February 10, 2008

Alcohol Raises the Risk of Breast Cancer; Folic Acid Can Help

One lovely ritual my husband and I enjoy is a martini in front of the fire as we listen to Prairie Home Companion on Saturday evening. Alcohol can be a pleasant addition to a social occasion—or a cause for one. I have relaxed over an Irish coffee with family on the Colorado ski slopes; watched the sun set over the island of Lesbos, Greece, while sipping a glass of the Greek’s legendary retsina  (which tastes a little like turpentine); and warmed up with the Slovene pear brandy slivovka while shopping for a Christmas tree in the Ljubljana open market.

I like the taste of alcohol and I love its rituals, so it has been difficult for me to step back and cut down my drinking, but I have done it because several studies have linked alcohol and the risk of breast cancer. The most recent, by Kaiser Permanente researchers and presented to the European Cancer Conference in September 2007, showed that one drink a day of alcohol of any type—beer, wine, spirits—increased breast cancer risk by ten percent. The risk rose by the drink—three drinks equaled  a 30 percent risk. This is a relative risk—it is compared to the risk faced by a woman who drinks no alcohol or less than one drink a day.

Folic acid can help—just 600 micrograms can reduce the effect of alcohol on breast cancer risk, according to research in the Journal of the American Medical Association.  Folic acid is the synthetic form of the B-vitamin folate.   Folic acid can also reduce the risk of colon cancer, control the side effects of the cancer drug methotrexate and help with everything from inflammatory bowel disease to rheumatoid arthritis.  The National Institute of Health gives a good overview of folic acid—where you can get it, how it can help with various medical conditions, how much you need, plus some cautionary notes about how it interacts with B12. They warn again too large a dose—1000 micrograms or more.

My daily green drink and my broccoli snack both have folate.  Fortified breakfast cereals have a good deal of the stuff, as does beef liver.  Ugh!   Natural foods, though, are not as good a source of folic acid as dietary supplements—I'd have to eat six cups of broccoli to get my 600 micrograms—so I take a B-complex capsule every day, plus a multivitamin with folic acid.

With ample fortification, I feel I can still enjoy the one martini. And, occasionally, a glass of wine or a beer during the week.  I find I do not miss alcohol as much as I thought I would.  I often sip pure black cherry juice in a wine glass and find it highly satisfying—the ritual without the risk.  And when I go back to Greece, I may just enjoy its beauty without the turpentine.

Please consider a donation to Positives About Negative to keep this site going.  This work is entirely supported by readers.  Just click on the Donate button in the right of the page.  Thank you!

Read more about TNBC in my book, Surviving Triple-Negative Breast Cancer.

Wednesday, February 6, 2008

Great Gifts Support Breast Cancer has a gift shop that offers books, candles, Lenox crystal, jewelry, clothing, plus services such as hotel reservations. A portion of all sales goes to the fight against breast cancer. Some nice ideas for birthdays, weddings, anniversaries, Valentine's Day, or whatever. You can also buy red and pink roses through Organic Bouquet. It's a fun shop, with some unusual items, so it could come in handy even if it weren't supporting the cause. Just click on the title of this post and you'll get to the shop.

Monday, February 4, 2008

Nurse Navigators As Breast Cancer Caretakers

When I was going through breast cancer treatment, I would have given even more of my breast if I could have had a nurse navigator guiding my care. These professionals follow cancer patients from diagnosis through follow-up care and help make sense of the doctors, treatments, jargon, and options while providing a supportive presence. In most cases, navigators collaborate with all members of the medical team; educate and counsel patients and their families; and coordinate care with oncologists, surgeons, pharmacists, dieticians, and counselors.

Nurse navigators are available at hospitals across the country. Their numbers are growing, as more nurses are being trained in this speciality. Most so far are focused on breast cancer, although other types of cancer are increasingly starting to be covered. To see what nurse navigators can do, check out the information about the navigator program at Mission Hospitals in Asheville North Carolina. Denise Steuber has been a nurse navigator at Mission for 12 years. She specifically works with breast cancer patients—even going to chemo and doctors' appointments with them—but she says the Mission nurses are also involved with overall cancer screenings. The program is funded by the Mission Foundation and is free to patients.

Check with your doctor about the possibility of having a nurse navigator on your team. If your hospital does not have this service yet, encourage them to start one. This might be a good time to be a squeaky wheel.