Breast Cancer Patients Often Lack Knowledge Of Their Tumors

Breast Cancer Patients Often Lack Knowledge Of Their Tumors
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By Andrew M. Seaman

(Reuters Health) - Women with breast cancer often don't know what kind of tumors they have, a new study found.

Not knowing one's tumor features isn't necessarily tied to worse outcomes, but better knowledge might help women understand treatment decisions and take medications as directed, said Dr. Rachel Freedman, the study's lead author from the Dana-Farber Cancer Institute in Boston.

Also, she said, cancer patients who understand the basis for their treatment are generally more satisfied with that treatment.

"Nobody to my knowledge has asked how much knowledge someone had of their own disease," she added.

For the new study, published in the journal Cancer, Freedman and her colleagues asked 500 women from northern California about their breast cancers, which had been diagnosed between 2010 and 2011.

Participants were asked about their tumor grade, tumor stage and whether or not their cancer feeds off the hormone estrogen or a protein called human epidermal growth factor receptor 2 (HER2).

Fifty-five percent of women said they knew if their tumor fed off estrogen, and about a third said they knew their HER2 status. About a third said they knew their tumor's grade, which is the cancer's aggressiveness. And 82 percent of women said they knew their tumor's stage, which is how advanced the cancer is.

Based on their medical records, only 56 percent of women reported the correct estrogen status, 58 percent reported the correct HER2 status and 57 percent reported the correct stage. Only about one in five women reported the correct grade.

Overall, only 8 percent of women correctly answered all four questions, but the lack of knowledge was more pronounced among minority women, the researchers report.

"Even though all these questions were low for all women, we did see difference by race and ethnicity," Freedman said.

"What's really nice about finding something like this is that it's a modifiable problem," Freedman said. "If you can improve education and provider awareness of this, you can do something about this in the clinic."

Dr. Michelle Shayne of the James P. Wilmot Cancer Center at the University of Rochester School of Medicine and Dentistry in Rochester, New York, who was not involved in the study, told Reuters Health, "Breast cancer patients in general are a very savvy group of individuals."

They "tend to read a lot and bring a lot of clippings in to their oncologist and ask a lot of questions," she said, so the study findings surprised her.

The results show that oncologists need to tailor their discussions about cancer to individual patients as much as they tailor the treatments, she said.

Also, she said, cancer survivors should receive detailed treatment histories and information about their tumors for future medical care.

Freedman said that in her own practice, she's been trying to explain patients' cancers in more detail, writing down the specifics and making sure they understand the information.

"I think this raises awareness of the issue," she said. "This may be a more important issue than we previously appreciated."

SOURCE: http://bit.ly/1gaOuII Cancer, online January 26, 2015.

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Celebrities Who Have Faced Breast Cancer
Kathy Bates(01 of15)
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The actress, who beat ovarian cancer close to a decade ago, shared last month that she had been diagnosed with breast cancer and underwent a double mastectomy, The Huffington Post reported at the time."Luckily, I don't have to undergo radiation or chemo," she told People magazine. "My family calls me Kat because I always land on my feet and thankfully this is no exception." She also shared the news on Twitter -- with her signature sense of humor intact. "I don't miss my breasts as much as I miss Harry's Law. ;-) Thanks for all the sweet tweets," she wrote. "Y’all kept me going." (credit:AP)
Maura Tierney(02 of15)
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Tierney was diagnosed with breast cancer in 2009, but she didn't open up publicly about it until earlier this year. "I remember thinking, 'I'm so young, this can't be happening,'" she told People magazine."In 2009, I was diagnosed with breast cancer and found out I would need chemotherapy," she said in a video for the Chemotherapy Myths Or Facts campaign. "I asked myself all these questions and was utterly terrified, not just because of the cancer diagnosis, but the fear of chemo itself."And that sense of the unknown is what triggered Tierney, whose cancer was found in its early stages, to sign up as a spokesperson for the campaign. "It's important that you feel educated and confident during this time," she said in her introductory video. (credit:Getty Images)
Judy Blume(03 of15)
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The beloved author of favorites such as "Are You There God? It's Me, Margaret," and "Tales Of A Fourth Grade Nothing," revealed that she was diagnosed with invasive ductal carcinoma in a blog post on her website this past September."I haven’t eaten red meat in more than 30 years. I’ve never smoked, I exercise every day, forget alcohol -- it’s bad for my reflux -- I’ve been the same weight my whole adult life," she wrote. "How is this possible? Well, guess what -- it’s possible."Blume had a mastectomy on July 30. She wrote in her blog:
As I've told my friends who've also been treated for breast cancer, I've joined The Club -- not one I wanted to join or even thought I would ever be joining -- but here I am. I’m part of this Sisterhood of the Traveling Breast Cells (apologies to Ann Brashares). Medical diagnoses can leave you feeling alone and scared. When it comes to breast cancer you’re not alone, and scary though it is, there’s a network of amazing women to help you through it.
(credit:AP)
Ann Romney (04 of15)
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Wife to Republican presidential hopeful Mitt Romney, Ann was diagnosed with breast cancer in early 2009. "It's great to have loved ones around you," she told America's Radio News Network in an interview earlier this year of where she found post-diagnosis comfort. "And you just fight these battles, listen you don't fight them alone. You fight them with friends and with family. And you put your arms around each other and you move forward."Romney, whose mother and grandmother died from ovarian cancer and whose great-grandmother died from breast cancer, told the program she's most grateful to have been diagnosed early -- she needed surgery and radiation, but not chemo."Life is an interesting game, and you just always deal with whatever you're dealt with that day or that week or that month or that year," said Romney, who has also been diagnosed with multiple sclerosis. "No matter what you're living through, we all push forward." (credit:AP)
Edie Falco(05 of15)
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The TV star was diagnosed with breast cancer in 2003, when she was starring in "The Sopranos.""I take very good care of myself (mostly because I didn’t many years ago), and that served me well during chemo," she later wrote in an article for Health magazine. "Running every day made me feel calm and strong, even as my self-image suffered from my hair falling out."After her cancer went into remission, Falco decided to adopt -- her baby boy, Anderson, was born in January 2005. She later adopted a daughter, as well."Obviously, it wasn’t meant for me to die of cancer at 40," she wrote in Health. "Every day my life surprises me, just like my cancer diagnosis surprised me." (credit:AP)
Suzanne Somers(06 of15)
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The "Three's Company" and "Step By Step" actress was first diagnosed with breast cancer in 2000. "We were silent, hardly talking, in disbelief, like this can't be happening, wondering is this a little blip or the end of my life?" she told People magazine in 2001, of hearing the news for the first time with her husband Alan Hamel.Just earlier this year -- more than a decade since her diagnosis -- Somers shared with People that she underwent an experimental breast reconstruction surgery, to repair the damage from a lumpectomy and radiation treatments. (credit:Getty)
Olivia Newton-John(07 of15)
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The "Grease" star and singer was diagnosed with breast cancer in 1992 after feeling a lump in a self exam -- her treatment included surgery, chemotherapy, a radical mastectomy and reconstruction."When you're first diagnosed, people are pulling you in every direction: Do this! Do that! You really have to gather yourself, because you're the one who has to make the hard choices," she said in a Q&A on Susan G. Komen For The Cure's website. "I researched a lot and felt satisfied with my course of treatment. It was sort of an East-meets-West approach."And that meant taking care of her whole body, not just the cancer."I did everything I could to take care of myself -- body, mind, and spirit," she told EverydayHealth.com. "I look at my cancer journey as a gift: It made me slow down and realize the important things in life and taught me to not sweat the small stuff." (credit:Getty Images)
Giuliana Rancic(08 of15)
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The 36-year-old "E! News" host announced last October on NBC's Today show that she has breast cancer, and that she was alerted to the cancer via a mammogram during her third in vitro fertilization attempt."Through my attempt to get pregnant for the third time, we sadly found out that I have early stages of breast cancer," she said on the Today show. "It's been a shock. A lot of people have been asking, we saw that you went and got IVF, are you pregnant? But sadly, we've had to put that off."Rancic underwent a double lumpectomy and removal of several of her lymph nodes, but she later went on the TODAY show last December to say that the cancer was not completely cleared by those treatments and that she will undergo a double mastectomy. This year, Rancic finally got her happy ending, with the birth of son Edward Duke via gestational surrogate on August 29. (credit:Getty)
Wanda Sykes(09 of15)
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In a 2011 interview with Ellen DeGeneres, Wanda Sykes revealed that she had been diagnosed with breast cancer and underwent a double mastectomy."I had breast cancer. Yeah, I know it's scary," Sykes said in the interview. "This was in February. I went for the reduction. I had real big boobs and I just got tired of knocking over stuff. Every time I eat ... Oh lord. I'd carry a Tide stick everywhere I go. My back was sore so it was time to have a reduction."After the reduction, the pathology report found ductal carcinoma in situ in her left breast, which prompted Skykes, who has a family history of breast cancer, to opt for a double mastectomy.And while the diagnosis is scary, she hasn't lost her signature humor."I was like, 'I don't know, should I talk about it or what?' How many things could I have? I'm black, then lesbian. I can't be the poster child for everything ... At least with the LGBT issues we get a parade, we get a float, it's a party. [But] I was real hesitant about doing this, because I hate walking. I got a lot of [cancer] walks coming up."
Christina Applegate(10 of15)
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In 2008, actress Christina Applegate shared in a "Good Morning America" interview that she had been diagnosed with breast cancer at the age of 36 -- she opted for a bilateral mastectomy instead of radiation or chemotherapy. "I didn't want to go back to the doctors every four months for testing and squishing and everything. I just wanted to kind of get rid of this whole thing for me. This was the choice that I made and it was a tough one," she said in the interview. "Sometimes, you know, I cry. And sometimes I scream. And I get really angry. And I get really upset, you know, into wallowing in self-pity sometimes. And I think that it's all part of the healing."Perhaps the best healing of all came in 2011 when Applegate gave birth to baby Sadie with musician Martyn LeNoble. "She's healed me in so many ways. She's just made my life so much better. I've been kind of sad for a long time, and she's just opened my whole soul," Applegate told People in an exclusive interview in 2011. (credit:Getty)
Melissa Etheridge(11 of15)
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In 2005, rock-and-roll artist Etheridge underwent a lumpectomy and five rounds of chemotherapy and radiation to eradicate her breast cancer. "I had been running along in my life at a fast pace. When I heard it was cancer, I just stood still," Etheridge told Shape magazine in a 2009 interview. "My life passed over me like a big wave, and after, I was left there standing. This turned out to be a very good thing. I stopped. I looked at my life, I looked at my body and spirit."In the midst of her treatment, Etheridge found out she was nominated for a Grammy for her song "Breathe" -- and while she wasn't sure she'd make an appearance at first, Etheridge ultimately decided not only to attend, but to perform in a Janis Joplin tribute. Taking to the stage bald and with no eyebrows -- a side-effect of the chemo -- she belted out Joplin's classic, "Piece Of My Heart.""It was very special that I had been presented with a day, that I could come back into this entertainment world, and show everyone that you are back and okay, and thought, okay," Etheridge told MSNBC at the time. "I'm going to do this. And I'm not gonna be afraid of the truth. The truth is, yes I had cancer. Yes, I got it out of me. Yes, I went through chemotherapy. Yes, I'm bald."Check out Etheridge's breast cancer causes on her Pink Rage website.
Robin Roberts(12 of15)
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ABC's "Good Morning America" co-host Robin Roberts was diagnosed with breast cancer in 2007."I never thought I'd be writing this. ... I have breast cancer," she said in a message released by ABC in August 2007. While working on a tribute to her colleague Joel Siegel, who had died from cancer, Robins reported on how key early detection is -- and, taking her own advice, she did a self breast exam and found a lump. "Much as I was hoping the doctor would say it was nothing, she did a biopsy and confirmed that the lump I'd found was indeed an early form of breast cancer," Robins continued in her statement.Robins underwent a partial mastectomy, chemotherapy and radiation. In 2008, she told People magazine that she complemented her regular doctor's visits with acupuncture, exercise and advice from a nutritionist. "Yes, I am living with cancer," she told People. "But don't go 'woe is me.' I don't want it. Don't need it. I'm still in the game. I don't want to say 'survivor.' I want to thrive."Earlier this year, Roberts announced that she was diagnosed with a rare blood disorder called myelodysplastic syndrome. (credit:Getty)
Kylie Minogue(13 of15)
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Australian singer Minogue was first diagnosed with breast cancer in May 2005 and underwent surgery and chemotherapy treatment."When you are stripped of everything and you have to grow your eyelashes back, grow your hair back, it's just astonishing," Minogue told British Glamour magazine. "It's hard to express what I've learned from that, but a deep psychological and emotional shift has obviously taken place."This open and honest approach to her diagnosis led Minogue to be voted the most inspirational breast cancer celebrity in an online British-based poll, Reuters reports. (credit:Getty)
Sheryl Crow(14 of15)
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Singer Sheryl Crow was diagnosed with breast cancer in 2006 and, thanks to early detection, underwent a minimally invasive surgery and seven weeks of radiation therapy.Crow told Health magazine that she saw a nutritionist when she was first diagnosed and began a diet full of fish, walnuts, colorful vegetables, fiber and healthy spices."I kept my breast cancer tattoos -- where the radiation was lined up on my chest," Crow told Health. "Once in a while I look at it to remind myself that I have to put on my oxygen mask first before I put it on anybody else."Today, Crow is focused on spreading the message of early detection. In 2010, she founded the Sheryl Crow Center as part of the Pink Lotus Breast Center, which was founded by her own surgeon, ABC News reports.This past June, Crow also revealed that she was diagnosed late last year with a benign brain tumor. (credit:Getty)
Cynthia Nixon(15 of15)
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In 2008, the "Sex and the City" star went public with her cancer diagnosis, revealing that she found a lump in its early stages and had it removed through radiation, The Huffington Post reported at the time.Nixon wrote in a 2008 Newsweek article that her mother was diagnosed with breast cancer twice -- the first time, Nixon was just 13."I feel like I have a very concrete story to tell. My story isn't just my story, it's mine and my mother's story," the Susan G. Komen for the Cure spokesperson has said. (credit:Getty)

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