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Angelina Jolie Pitt reveals she had ovaries removed

March 28, 2015

The actress has the BRCA1 mutation, which puts her at high risk for breast and ovarian cancer

By Diane Mapes / Fred Hutch News Service

Angelina Jolie Pitt announced Tuesday that she's had her ovaries and Fallopian tubes removed to combat her risk of cancer. File photo by Matt Sayles / AP

Angelina Jolie Pitt announced Tuesday that she’s had her ovaries and Fallopian tubes removed to combat her risk of cancer.
File photo by Matt Sayles / AP

After actress and filmmaker Angelina Jolie Pitt went public two years ago with her choice to have a preventive double mastectomy to combat the risk of breast cancer, she hinted that another surgery awaited her. Jolie, who lost her mother, grandmother and aunt to cancer, has the BRCA1 genetic mutation, which puts her at high risk for breast and ovarian cancer.

Now, in an opinion piece published in The New York Times, she has announced that last week she also had surgery to remove her ovaries and fallopian tubes.

“Surgery to remove my tubes and ovaries was the best option because on top of the BRCA gene, three women in my family have died from cancer,” she wrote. “My doctors indicated I should have preventive surgery about a decade before the earliest onset of cancer in my female relatives. My mother’s ovarian cancer was diagnosed when she was 49. I’m 39. Last week, I had the procedure: a laparoscopic bilateral salpingo-oophorectomy.”

Dr. Elizabeth Swisher, medical director of the Breast and Ovarian Cancer Prevention Program at Fred Hutchinson Cancer Research Center’s treatment arm, Seattle Cancer Care Alliance, said Jolie made a lifesaving decision.

“Women with a BRCA mutation have a 40 to 50 percent chance of getting ovarian cancer in their lifetime compared to somebody with an average risk, who has a 1.8 percent lifetime risk,” she said. “They have a huge risk for ovarian cancer and unlike other cancers, we don’t have adequate early detection. If you just wait and get ovarian cancer, the chance of dying is very high. It’s a very deadly disease.”

Swisher said studies have shown that prophylactic measures, such as the removal of ovaries and fallopian tubes, are effective in avoiding both breast and ovarian cancer.

“Women with the BRCA1 and BRCA2 mutation who get their ovaries out decrease their chances of ovarian cancer and they also decrease their chance of breast cancer because of the hormonal changes,” she said. “They decrease their mortality. There’s very good data that you lengthen your lifespan if you have a BRCA mutation and you take out your ovaries. Not to mention the improved quality of life of not having to live through cancer treatment.”

Not a decision that’s made lightly

Amy Byer Shainman, a 45-year-old stay-at-home mom from Jupiter, Florida, discovered she was BRCA1 in December of 2009. Like Jolie, she had lost family members to breast and ovarian cancers at a young age. Like Jolie, she also had a very high risk of being diagnosed with both cancers, a grim prospect for the mother of two.

After being tested, Shainman met with a genetic counselor who referred her to a high-risk oncologist. The oncologist laid out her risk management options, which included extra screenings, estrogen-blocking drugs (for women over 60) and prophylactic surgeries.

“You leave that appointment feeling like you’ve been run over by a truck,” said Shainman. “I spent the next month drinking a lot of wine, eating a lot of chocolate and doing a lot of research. I’m a researcher by nature and I had the fortitude to know you have to research, get a second opinion, get a third opinion and go about this the right way.”

In February of 2010, Shainman made her decision. She first had a full hysterectomy – a prophylactic removal of her ovaries, fallopian tubes and uterus (her family history included uterine as well as breast and ovarian cancer). Then several months later, she had a bilateral prophylactic mastectomy.

“It was not a decision that was made lightly,” she said. “But I feel lucky. I haven’t had cancer. And I’d like to stay that way if possible.”

In her opinion piece, Jolie stressed that knowledge was power. She also emphasized that women should make the choice that’s appropriate for them.

“The most important thing is to learn about the options and choose what is right for you personally,” she wrote.

Who should consider genetic testing?

Most breast cancers are not hereditary. The National Cancer Institute estimates no more than 10 percent of all breast cancers are due to inherited gene mutations such as BRCA1 or 2 (there are others). According to NCI, about 12 percent of all U.S. women will develop breast cancer and about 1.4 percent will develop ovarian cancer sometime during their lives.

For women (and men) with a BRCA gene mutation, however, the risks are much higher. These risks vary depending on family history and other factors, but around 55 to 65 percent of BRCA1 women and around 45 percent of BRCA2 women will be diagnosed with breast cancer by age 70. And nearly 40 percent of BRCA1 women and 11 to 17 percent of BRCA2 women will develop ovarian cancer.

The NCI recommends that genetic testing should only be performed when the person’s family history suggests the “the possible presence of a harmful mutation in BRCA1 or BRCA2,” i.e., a history of breast, ovarian, fallopian tube or peritoneal cancers.

Some of the factors associated with an increased likelihood of a BRCA1 or BRCA2 mutation include breast cancer diagnosis before age 50; both breast and ovarian cancers; multiple breast cancers; cases of male breast cancer and Ashkenazi Jewish ethnicity.

Benefits of genetic counseling

But genetic counseling is key, Shainman stressed (as does the NCI).

“They’re the experts who can decipher the cancer risks,” she said, pointing to accredited organizations such as the National Society for Genetic Counselors. “Plus they know the ins and outs and protocols with regard to insurance and which genetic testing companies are less expensive. They know if any of them have reduced fee plans or even free testing.”

Shainman, who has become an advocate for BRCA individuals since 2009, said her insurance covered most of the costs of her genetic testing and prophylactic surgeries.

Dr. Julie Gralow, a clinical researcher and breast cancer oncologist at Fred Hutch and Seattle Cancer Care Alliance, said that’s not unusual.

“In the U.S., most insurance plans would cover oophorectomy in BRCA-positive individuals,” she said. “It is the recommendation of many societies.”

Gralow, currently at a Breast Cancer in the Arab World conference in Amman, Jordan, stressed that this is not necessarily the case everywhere, however.

“Worldwide, it’s a much bigger issue,” she said. “Being in Jordan right now, with representatives from dozens of Middle East countries, I’d say that the wealthier patient could get testing and surgery but not the masses.”

Gralow added that Jolie’s willingness to come forward with her story has definitely helped to educate people around the globe as to the risks posed by BRCA mutations, though. Surveys and studies have also shown Jolie’s willingness to come forward has had a “global and long lasting” effect.

“This is something that women all over the world can relate to,” she said. ”Her willingness to be public about this will create awareness and likely save many lives.”

Shainman heartily agreed.

“Now everyone is a lot more familiar with genetic mutations,” she said. “Even if they don’t exactly know what it is, they know that Angelina Jolie did something for her health and I look at that as progress. It’s saving lives. It’s getting the message out.”

Solid tumors, such as those of breast and ovaries, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.

Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at dmapes@fredhutch.org.

Kilimanjaro 2015 ~ The Roof of Africa

March 18, 2015

IMG_2187I just returned from Tanzania and my CLIMB to Fight Breast Cancer to the roof of Africa- the 19,340ft summit of Mt. Kilimanjaro. It was an amazing experience from sightseeing around Arusha, Tanzania to summiting Kilimanjaro at sunrise to an awesome 3 ½ day safari in some of the best parks in east Africa.

Our group consisted of 5 middle-aged climbers from the United States plus Alpine Ascents guide Eric Murphy (he has 70 Kili ascents and he is heading to Mt. Everest to guide later this month), and Tanzanian guides Julius (325 ascents), Daniel (100+ ascents), and Daniel (70+ ascents). In addition, there were 29 other cooks, porters, and other camp staff to support our amazing journey.

We started in Arusha with introductions and a gear check before driving 2 hours the next day to our starting point, the Machame gate at 6000ft elevation. We began in 80 degree heat walking through the rain forest watching the blue and colobus monkeys in the huge trees. After a couple of hours we stopped for lunch at a small clearing in which a large table, chairs, 2 flower arrangements, and toilet tent had been set up. We had a filling 4-course meal then headed up another couple of hours to camp. This was the typical day- a little walking (sometimes quite steep up or down), a filling sit-down lunch then another couple of hours on the trail. When we would reach camp, the tents had already been set up by the crew and snacks and water were ready. Another large dinner, and early to bed completed the day.

Day 2 was a little shorter hiking through the heather and moorlands zone (dryer, smaller vegetation as we got above 10,000ft). We reached Shira camp after 4-5 hrs with great views up closer to the mountain and its still significant south side glaciers. Day 3 was the longest day other than summit day with about 9 hours of walking. We started at 12,500ft, went up to a rocky volcanic pinnacle called Lava Tower at 15,200ft then back down to the prettiest camp at 12,900ft Barranco camp. There were very unusual lobelia plants and senesius trees that looked like something out of a Dr. Seuss book all around the valleys near Barranco. There were great views down the valley, up to the mountain, and across the valley to the next day’s initial objective-scaling the 1000ft Barranco wall. We arose at 5AM to our usual favorite hot beverage brought to our tent. We left early to beat the other groups on the mountain so that we would not get bogged down on the wall. It took a little scrambling to get up the wall, but nothing too difficult. At the top, incredible views awaited us–bright blue sky, tremendous glaciers, the whole mountain seemed like it was RIGHT THERE.

It was still another couple of days to reach the summit, however. We had a short day reaching Karanga camp at 13,300ft at lunch time, so we all rested that afternoon. The next day we finally started our push to gain more altitude reaching 15,800ft Kosovo camp about 1PM. We had the camp all to ourselves as most others use Barafu camp about 1000ft lower. This allowed us a little bit of a head start for summit night. We were awoken at 11PM for a short meal before leaving at midnight for the summit. After 6 hours of steep walking using our headlights to guide us, we finally reached the crater rim at Stella Point at about 6AM. We had tremendous views all around us as the sun rose over the African continent. 17,000 Mowenzi Peak, the glaciers, the HUGE crater all there for us to enjoy. It took about another hour of easy walking to make it to the true summit at Uhuru peak-19,340 feet of sea level. FINALLY, the whole group made it (in fact, of the 6 trips that Eric Murphy led this winter season, 100% made it to the top). We spent about 45 minutes taking in the views, taking lots of pictures, resting, eating, and drinking. When it was time to begin our real descent back at Stella Point, Eric asked us who wanted to go the “fast route” down. I, of course, volunteered. He said “follow me and if I spread my arms out, it means there’s a jump”. I wasn’t really sure what I was getting myself into, but we took off running/jumping down the mountain plunge-stepping into the deep sand/gravel. We dropped almost 2500ft in about 20 minutes. What a great way to get back down to camp for a little rest. The others eventually caught up with us at camp exhausted after about a 6000ft descent. The next day we had another 6000ft to descend to get back to our final stop at the Mweke gate where we were met by an enthusiastic group singing, dancing, celebrating our successful summit. What a trip it was!

But that was only the beginning. After driving back to Arusha for LONG, HOT showers, rest and a celebratory dinner, the next morning we departed for Tarangire National Park. To say it was incredible, is an understatement. We literally saw more than a 1000 elephants, 100 giraffe, baboons, impala, zebra, etc. all in an awe-inspiring landscape of grasslands, acacia trees and the huge boabab trees (the tree of life in the Lion King movies). Next, we drove to the famous Ngorongoro crater for another afternoon game drive. There were animals EVERYWHERE-thousands of wildebeest and gazelle, lions, hippos, 3 black rhino (one of which walked just in front of our truck). More animals that I would have dreamed for one small enclosed ecosystem. We finished our safari at the famous Serengeti National Park. There we saw hundreds of lions, a leopard, tons of zebra, gazelle, and elephants just as you may have dreamed. The following morning I got up early for a sunrise balloon ride over the Serengeti with the highlight being about 20 feet above a huge group of hippos that were lounging, walking, swimming, just hanging out.

What a trip! It would be hard to imagine a more diverse experience from summiting the great Kilimanjaro to seeing up close the animals of east Africa all for a great cause-the CLIMB to Fight Breast Cancer.

~ Dr. Keith Heaton

KILIMANJARO SUMMITS! CONGRATULATIONS!

February 23, 2015
Photo courtesy of Keith Heaton.

Photo courtesy of Keith Heaton.

ACONCAGUA SUMMITS!

January 28, 2015

photo-17

The things I wish I’d said

December 17, 2014

IMG_9823When Robin passed away two years ago, I wanted to write her a love note. I sat down several times to pen some memories, but it was too soon. I couldn’t get out what I wanted to say without it sounding cliché or just plain sad. That’s not who she was; she wasn’t sad in life and I didn’t want to make her sad in death.

We were lucky in countless ways, the smallest of which was that she had a long goodbye. Robin’s August 2010 Stage 4 Colon Cancer diagnosis could have robbed her before the seasons change. But the seasons did change, and while I’m sure she never forgot about the cancer ravaging her body, sometimes I did. It was easy not to dwell on it, because she never did. Even when her insides were upside down, she came to family gatherings and enjoyed good food and red wine. She would wink at me and tell me she’d pay for it later.

Robin never allowed her cancer fight to be an elephant in the room. You could ask her anything, even the hard questions, and she would answer and move on. She did pitch perfect imitations of her doctors. They had become like family to her. She remained hopeful and grateful throughout those harrowing two years. Hopeful that research, like that pioneered at Fred Hutchinson Cancer Research Center, would “catch up” with her cancer. Grateful to the doctors who never stopped fighting to have her participate in the latest trial or eligible for the newest promising exploratory drug.

IMG_9824About a year before she died, she called to tell me about her latest hospital stay. She said she thought it could have been the end of her road. She made me promise I’d watch out for her sweet daughter if she didn’t beat it. I thought I was being reassuring by telling her of course I would, but she’d get better and it wouldn’t be necessary. I wish I’d just listened.

I wish I’d told her how much I loved her girlish voice. It didn’t matter how many birthdays she celebrated, she had the voice of a 13-year-old.

I wish I’d told her I always looked forward to seeing her.

I wish I’d told her I admired her for making her own way, having been on her own since age 16.

I wish I’d complimented her on her strong marriage and devotion to motherhood, as I know she worked hard at both even though it looked effortless. IMG_9825

I wish I’d visited her frequently, as I know she would have driven the 2.5 hours to my house every week had our circumstances been reversed.

I wish I’d realized she may not have had a handle on everything, as it always appeared she did.

I’ve run through our last conversation endless times. She hated being photographed, yet she let me take this one. To this day I don’t know why I did because nothing in my conscience mind knew it would be our last.

Robin would say I was brave because I climb mountains, but I don’t possess a fraction of her bravery. She stared down her fears. She never stopped hoping, laughing, volunteering and living.

 

Volcanoes of Mexico

November 9, 2014
Popo lets off a little steam. Photo by Carol Roll.

Popo lets off a little steam. Photo by Carol Roll.

We are excited to announce the 2014 Volcanoes of Mexico Climb to Fight Breast Cancer team had a safe and successful summit of both Iztaccíhuatl and El Pico de Orizaba in the last two weeks!

Iztaccihuatl (17,343 ft) – Oct 27th 

The team drove up El Paso de Cortez to the La Joya hut at 12,000 ft. The hut is a rustic cement building with 3 bunk bed rooms. On the second day the team hiked up to 14,000 ft to help with altitude acclimatization. Nearby Popo volcano (2nd highest mountain in Mexico) erupted a few times daily and they got great views of it. Day 3 they packed up their heavy 45 lb packs and hiked up to the Ottis Mcallister hut at around 16,000 ft. This hut was much more primitive and small so the team slept in tents, melted snow for water, and prepared for the 2:00 am alpine wake-up. On summit day the team could feel the altitude but practiced pressure breathing and made their way up the long boulder/scree field and then onto the snow slopes mixed with rock. Izta stands for “sleeping lady” and the team reached the high ridge about at her “knees.” They continued on up and down the ridge (Ridge of the Sun) until they finally reached the summit. They celebrated for a few minutes on the summit, long enough to get a small eruption from Popo volcano in the distance. Popo was celebrating and providing real-life fireworks to mark the Climb to Fight Breast Cancer team’s summit!

Volcanoes of Mexico summit team. Photo by Carol Roll.

Volcanoes of Mexico summit team. Photo by Carol Roll.

Orizaba (18,490 ft) – Nov 1st
Their next climbing objective was El Pico de Orizaba to the South, the tallest mountain in Mexico. The team rode in 4×4 vehicles to drive up “the road” about 2 hrs to the Piedra Grande hut at 14,000. The hut has 3 levels of plywood platforms for climbers to stay and prepare for their summit attempts. Day 2 the team had planned to go for an acclimatization hike but soggy weather and thick fog kept them playing cards and eating Pringles in the hut all day. With the drastic recession of the Jampa glacier, it is no longer possible to make a high camp because of lack of a water source, so they had to make their summit attempt from the hut…a very long summit day.

On day 3 they set out for the top, leaving the hut at 14,000 ft at about 3:45am. They traveled on a paved aqueduct at first, and then continued up the rock and scree. After several hours they reach the Labyrinth where route finding through the large rocks was very difficult and hard to navigate with heavy packs.  Their local guide, Oso, has over 300 summits of Orizaba, so he was a tremendous asset in route finding.  Finally, after several hours, they reached the base of the Jampa glacier and Sarcophagus rock around 16,500 ft. They put on all their technical gear (crampons, rope, harnesses and ice axes) and started up the glacier. Snow conditions were perfect but the slopes were still icy and a steady very steep 40-45 degree slope. After several hours of traversing the glacier the team finally reached the top of Mexico – North America’s 3rd highest peak, and the highest volcano in North America. Great views into the crater and sunshine made for a happy summit team.

Touring

Also on the trip the team did some sightseeing. They went to a great anthropology museum in Mexico City and learned about theIMG_9384 regions’ Aztec and Mayan history. Between climbs they stayed in Puebla, visited many ornate churches, the ruins of the largest pyramid in the world, shopped for colorful pottery at the market and ate lots of mole sauce. Their final evening before flying back to the U.S. was Dia de Los Muertos (Day of the Dead) and Mexico City was alive with celebration, decorative altars and offerings, face paintings and costumes.

Muchos Felicitantes to our Volcanoes of Mexico team and Alpine Ascents International, not only for the successful summits but the support of breast cancer research at Fred Hutch!  See our Smug Mug album for more photos.

Living with Stage 4: The cancer no one understands

October 26, 2014

In a culture focused on survivorship, those with metastatic breast cancer who will be in treatment for the rest of their lives can feel isolated and misunderstood
Oct. 24, 2014

By Diane Mapes / Fred Hutch News Service

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Teri Pollastro,a 54-year-old Stage 4 patient from Seattle, said, “People don’t understand the word metastatic to begin with. … When I’d tell them I was Stage 4, they’d give me pity or stay away or see me a year later and think I was a ghost. They couldn’t believe I was alive.”

A no-nonsense Texan of 60 years, Jody Schoger has a very no-nonsense way of educating people about her metastatic breast cancer.

“Someone will say, ‘When are you done with treatment?’ and I’ll tell them, ‘When I’m dead,’” said Schoger, a writer and cancer advocate who lives near Houston. “So many people interpret survivorship as going across the board. That everybody survives cancer now. But everybody does not survive cancer.”

An estimated 155,000 plus women (and men) in the U.S. currently live with “mets,” Stage 4 breast cancer that’s traveled through the bloodstream to create tumors in the liver, lungs, brain, bones and/or other parts of the body. While treatable, metastatic breast cancer (MBC) is incurable. Between 20 and 30 percent of women with early stage breast cancer go on to develop MBC. Median survival is three years; annually, the disease takes 40,000 lives.

As with primary breast cancer, treatment for mets can often be harsh and unforgiving. But dealing with an incurable illness and the side effects of its treatment aren’t the only burden MBC patients have to bear. Many also have to educate others about their disease, explaining over and over that no, the scans and blood tests and treatments will never come to end. No, the metastasized breast cancer in their lungs is neither lung cancer nor linked to smoking. No, staying positive and “just fighting hard” isn’t going to beat back their late stage disease.

As one mets patient in this Living Beyond Breast Cancer video put it, “It’s almost like having another job … My wish would be that the larger support circle would just get it more.”

A disease no one ‘gets’

Sadly, people don’t “get” mets. In fact, a recent survey sponsored by Pfizer Oncology shows just how misunderstood it is. Sixty percent of the 2,000 people surveyed knew little to nothing about MBC while 72 percent believed advanced breast cancer was curable as long as it was diagnosed early. Even more disheartening, a full 50 percent thought breast cancer progressed because patients either didn’t take the right treatment or the right preventative measures.

“They’ve built an industry built on four words – early detection equals cure — and that doesn’t even begin to define breast cancer,” said Schoger, who helped found Breast Cancer Social Media, a virtual community for breast cancer survivors, surgeons, oncologists and others. “Women are blamed for the fate of bad biology.”

The MBC Alliance, a consortium of 29 cancer organizations including the biggest names in breast cancer (think Avon, Komen, Susan Love, etc.), addressed this lack of understanding and support as well as what many patient advocates term the underfunding of MBC research in a recently published landmark report.

“The dominance of the ‘breast cancer survivor’ identity masks the reality that patients treated for early stage breast cancer can experience metastatic recurrence … [anywhere from] a few months [to] 20 years or more after initial diagnosis,” the report states. “Public messaging about the ‘cure’ and survivorship is so pervasive that people diagnosed at Stage 4 with MBC can be stigmatized by the perception that they’ve failed to take care of themselves or undergo annual screening.”

‘You end up on Mars’

Schoger’s breast cancer — called invasive lobular carcinoma or ILC — came back 15 years after her original diagnosis and treatment.

“You think you’re going to be flying to Chicago and land at O’Hare and you end up on Mars,” she said of her April 2013 mets diagnosis. “It’s not well known that you can have late recurrence. I even had an oncology nurse tell me ‘Oh, you’re cured’ at eight years.”

Schoger’s doctors threw everything at her cancer after her initial diagnosis: mastectomy, chemotherapy, radiation and the daily medication tamoxifen, a form of hormone (or endocrine) therapy designed to cut off the food supply of her estrogen-receptor-positive (ER+) breast cancer.

But with MBC, the treatment philosophy is different.

“With primary cancer, they say, ‘We’re going to pull out all the big guns. We’re going to put it in permanent remission,’” she said. “With MBC, you use as little as possible to get the biggest effect. You attempt to stabilize the disease.”

For Schoger, that means a daily aromatase inhibitor (AI), which shuts down estrogen production even further to starve her cancer, along with a monthly infusion of Xgeva, a bone strengthening agent designed to combat the bone-zapping side effects of her AI treatment.

Schoger said she will remain on this therapy until it stops working. Then, like most patients with MBC, she’ll move on to something else.

“With metastasis, you’ll have times where you’re responding well and your disease is stable,” she said. “And then there will be a scary time of progression. Then there will be a new treatment, a time of stability again, then – boom – progression. And it’s all sort of going down each time that happens.

“None of us knows which way our disease is going to go,” said Schoger, who has lost many friends to MBC. “Everybody hopes for the longest possible time for the first therapy you’re given. But some women have aggressive disease and just blow through their therapies.”

From ‘cured’ to Stage 4

Others, like Teri Pollastro, a 54-year-old Stage 4 patient from Seattle, respond surprisingly well.

Diagnosed with early stage ductal carcinoma in situ (DCIS) in 1999, Pollastro underwent a mastectomy but did not receive chemotherapy, radiation or tamoxifen, since her cancer was ER negative.

“They used the C-word with me, they told me I was cured,” she said. “Every time I went back to my oncologist, he would roll his eyes at me when I had questions.”

In 2003, Pollastro switched to Seattle Cancer Care Alliance where she saw Dr. Julie Gralow, a breast cancer oncologist and clinical researcher at Fred Hutchinson Cancer Research Center. Gralow discovered Pollastro’s cancer had metastasized to her liver.

“My husband and I were in shock,” said Pollastro of her mets diagnosis. “You don’t go from being cured to Stage 4.”

Pollastro went on Herceptin, a type of immunotherapy for women with HER2 positive metastatic breast cancer, and did six months of chemotherapy.

“I felt better right away with the treatment,” she said. “But the problem is, it stopped [working]. That’s what you can expect with mets. And there’s always some residual cancer. And that starts percolating.”

And along with mets, she also had to deal with many misconceptions regarding her disease.

“People don’t understand the word metastatic to begin with,” she said. “They’d say, ‘Oh now you have liver cancer? How could that happen? Doesn’t it go to the other breast first? And when I’d tell them I was Stage 4, they’d give me pity or stay away or see me a year later and think I was a ghost. They couldn’t believe I was alive.”

The Mercer Island, Wash., mother of two, who often counsels newly diagnosed patients, sometimes even found it difficult to relate to early stage breast cancer survivors.

“They’re like, ‘I did this’ and ‘I did that’ and ‘I beat cancer’ and they think they’re going to be fine and I think, ‘Well, so did I,’” she said. “Or people will ask me, ‘Aren’t you worried about all that radiation you’re getting from your scans?’ and I’ll think, ‘Are you kidding me? You think I’ve got a choice here?’”

New targeted therapies

As new treatments are slowly being approved, MBC patients are starting to have more choices, though.

Gralow said the human genome project has led to a much better understanding of breast cancer with all of its subsets and behavior patterns. Therapies are no longer “one-size-fits-all” but targeted for each cancer subset.

“We still have a long way to go and we are still losing too many women … but there is a lot more hope for many years of good quality life for a patient diagnosed with a metastatic recurrence now than there was two decades ago,” she said.

One new drug, Perjeta, has shown particular promise when teamed with Herceptin and chemo, bumping survival rates in HER2 positive mets patients by nearly 16 months.

“That’s meaningful,” said Gralow. “If you look at the old textbooks, we used to predict that you’d live a year or maybe two at most. And if you were HER2 positive, it was much shorter.”

Pollastro, who was on Herceptin for seven years, has also benefited from new therapies. In 2004, she participated in a vaccine clinical study run by Fred Hutch’s Dr. Nora Disis and also received targeted radiation therapy at a cancer treatment center in Rochester, New York. As a result, she’s currently NED (no evidence of disease).

But she’s still cautious about using the word “cured”.

“The longer I go, the less worried I get,” she said. “But I feel like I’m on a merry-go-round and I keep waiting for it to stop. I’ve lost a lot of friends and feel bad about that. I have a little survivor’s guilt. But It’s like musical chairs. I keep wondering, ‘When am I going to miss the chair?’ So far, I’ve been lucky.”

Schoger whose disease has stabilized but not disappeared entirely, said she too feels lucky.

“I feel like I’m on Easy Street,” she said. “I’m not on chemo right now, I’m on endocrine therapy and it’s shrinking the cancer and relieving symptoms.”

As for the stigma surrounding mets, there are signs that that, too, may be starting to shrink, thanks to the work of advocates.

“This is the first year since I can remember that I’ve seen media reports that have included women with metastatic disease,” said Schoger. “And the MBC Alliance report was very blunt about how the survivorship story has masked the issues of the mets community. If an alliance of breast cancer organizations comes out and makes that strong statement, that’s phenomenal progress. That’s a great step forward.”

Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has also written extensively about health issues for nbcnews.com, TODAY.com, CNN.com, MSN.com, Columns and several other publications. She also writes the breast cancer blog, doublewhammied.com.Reach her at dmapes@fredhutch.org.

Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.

Are you interested in reprinting or republishing this story? Be our guest! We want to help connect people with the information they need. We just ask that you link back to the original article, preserve the author’s byline and refrain from making edits that alter the original context. Questions? Email editor Linda Dahlstrom at ldahlstr@fredhutch.org.

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