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
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 email@example.com.
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.
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Every year, outdoor enthusiasts join together to ascend some of the world’s most breathtaking mountains in honor or memory of loved ones who have battled breast cancer. The Climb to Fight Breast Cancer® allows you to touch the top of states, countries and continents while raising vital funds and awareness toward finding a cure.
You can register today for the 2015 Climb to Fight Breast Cancer. Climb a Mountain. Save a Life.
That would be Mt Rainier, Columbia Crest; 14,411 ft above sea level. Did you know that climbers who have aspirations of climbing Mt Everest or Denali will climb Mt Rainier as a prep climb? Mt Rainier is the most heavily glaciated mountain in the continental United States with quite a few routes to get to the summit.
The route taken with the Climb to Fight Breast Cancer is via the Disappointment Cleaver. The day starts early with an arrival at Alpine Ascents headquarters in Seattle no later than 6 am. This is because it takes a few hours to drive to the mountain, and you still have to hike to Camp Muir. The hike is only 4 miles but nearly 4700 ft in elevation.
The Paradise parking lot is where you disembark, altitude 5400 ft. You change your clothes and say goodbye to the van. It’s boots up from here. The Alpine Ascents guides do a fantastic job of pacing the ascent. It is so easy to over-walk your breathing and then get out of breath, with fatigue soon arriving. A gentle, easy pace makes the climb more enjoyable. There are breaks every hour to grab a quick bite, drink fluids, and start back up the mountain. This is a steep climb, it’s not easy, and your pack weighs about 40 lbs.
Camp Muir is stop number one on our Mt. Rainier summit climb, altitude 10,188 feet. The ascent will take anywhere between 5 to 7 hours depending on weather and the climbers’ fitness levels. This is the spot where you stay the night in the guide’s hut, which is a nice way of saying plywood shelter with bunk beds. Hydration is important to acclimatization, as well as simply spending the night at this altitude. This night is truly key to maximizing your success.
The following morning, snow school is conducted to help people become familiar with walking on the snow, in crampons, and using an ice axe. Then off you go to Ingraham Flats (11,100 ft). This is over the Cowlitz Glacier, so you are roped up and using your crampons. There is a traverse on snow, then on rock through Cathedral Gap, then another traverse to the Flats. This route will take you 1000 feet higher in altitude, which also means you start out summit night 1000 feet higher—another key to success. Here you rest, drink fluids, and get ready for the summit!
Around midnight, you “awaken” (it’s okay if you don’t sleep), eat breakfast and off you go again! The route goes up and then to the right to the Disappointment Cleaver. This is a huge stone outcropping that is sometimes filled with snow early in the season, and more rock as the season wears on. Walking on rock with crampons takes vigilant attention, and this is a steep area but it’s very doable. A break is taken at the top of the Cleaver (around 12,500 ft) and again at “high break” which tends to be around 13,200 to 13,500 ft. Tidbit: Early in the season, the guides will actually create a spot for “high break” and chop out platforms for you to sit on and rest. This is part of their route maintenance and care of the route.
Soon the sun comes out and you see the rocks of the crater rim as you look up the mountain. You’re nearly there! You enter the crater rim and are amazed at what you just did….you made the summit! The crater rim is like a huge football field of snow with a rim of rocks around it. The true summit is across the crater to Columbia Crest. Don’t forget to sign the register in your excitement!
On the summit, high 5’s abound, cameras are clicking, everyone is excited and congratulating one another on the successful journey. If it’s a nice day, you can see for miles – with views of Mts Hood, Adams, Jefferson, St. Helens and more. About an hour is spent at the summit, weather permitting; eating, drinking fluids, photo-ops, selfies, etc.
On the way down, you get to see what you ‘missed’ on the way up (since you were in the dark much of the time). There are beautiful seracs, huge crevasses off in the distance, and more climbers coming up the mountain as well as going down. This is a beautiful route, full of versatility in terms of what you are climbing on (rock, snow, ice). It is a monumental achievement to get to the summit and such a sense of accomplishment. Training pays off in a big way—the more prepared you are, the better your chances at success. In 2010, 10,643 people attempted to climb Mount Rainier; 4,920 of them actually reached the summit (Credit: NPS website).
Climb to Fight Breast Cancer climbs have remarkable summit success. Barring weather issues, the great majority of climbers make the summit. Part of that success is training preparation, which cannot be underestimated. The other part of the success is the route taken, the speed of ascent, and amazing guides from Alpine Ascents International. Together, we make a fantastic team. Together, we fight our way up the mountain to fight breast cancer.
On the weekend of July 25-27, 2014, the “Pink Fireballs” set out to enjoy the sweetness of climbing the 10,781 foot peak. I was truly looking forward to being a part of this group of climbers who had come together for the Climb to Fight Breast Cancer.
Filled with excitement and anticipation, we gathered at Schreibers Meadow trailhead. Thankfully, our Alpine Ascents International climbing guides (“the Nicks, Kyle and Tom) gave us a leisurely meeting time of 9am! Introductions were made, and a quick briefing was given on what to expect for the day. Our group was actually divided into two climbing teams, five per team. One team would head up the Easton route and one team would ascend the Squak route. As we set off, I was convinced someone had come during the night and filled my pack with lead!
The morning was meant for hiking. Sunny, but not too warm…yet. We fell into line and made our way through the trees, crossing the river, and onto the knife-edge known as the Railroad Grade. It’s a narrow trail that drops a few hundred feet on either side. Rocky meadow on one side, snow and rocks on the other.
As we hiked our way up to the climbers’ camp, we encountered marmots sunning themselves and no doubt enjoying the view as much as we were. Within a few hours, we were at our destination, setting up tents and readying our gear. The guides made us dinner and we talked about what was in store for us the next day.
The morning was clear and warm. Our guides made coffee and offered us breakfast, and before we knew it, we were gearing up for snow school. This is where the guides teach (or in some cases, refresh) climbing techniques, ice axe arrest and how to use crampons. As we wrapped up, the guides brought up the idea of trying a sunset summit.
When climbing, there is the traditional summit, where the team gets going around 1am. The idea is to climb when the snow is solid, and the summit happens in the early morning hours. With the sunset summit, climbers leave in the afternoon, and summit in the early evening. After bringing it up to the teams, the Nicks’, Tom and Kyle discussed the idea. Finally a decision was made: we would try a sunset summit.
In no time, our two teams were geared up and ready to go. The sparkling white snow against the backdrop of the azure blue sky was a sight to behold. Each time the teams rested in the snow, we took in the breathtaking views of the North Cascade mountains. Peaks as far as the eyes could see. As the day wore on, various injuries and other issues had some of our climbers turn back. Eventually, after hours on the glacier, five of us summited.
Views from the summit were stunning! You could turn 360 degrees and see for miles. It was quite windy at the top, so we quickly took our summit photo and began our descent.
We made it back to camp safely, ate dinner and settled in for a much deserved night of sleep. The next day, we packed up and headed back to the parking lot where fresh clothes were welcomed and cold drinks and lots of hugs were shared.
Marina Rockinger is an anchor, reporter, voice talent and Lifebeat host on KOMO Newsradio, Talk 570 KVI and Star 101.5 in Seattle. She is an outdoor enthusiast, adventurer and longtime supporter of the Climb to Fight Breast Cancer. Thank you Marina for your endless gusto, great humor and contagious zest for life.
It was that time of the year again. I was about to embark on my annual Climb to Fight Breast Cancer, benefitting Seattle’s Fred Hutchinson Cancer Research Center.
Bachelor Party. This year my team chose Mt. Adams (12,276 ft) on the southern end of beautiful Washington state. It was a reunion of last year’s Mt. Olympus summit team. The team included Marybeth Dingledy, David “Mangler” Kendall, Jeff Hazeltine, Steve Bley and soon-to-be-groom Chris Awad. Chris benefitted greatly from the team’s valuable advice on “How to Propose” in previous years’ climbs. A high altitude bachelor party was on the menu!
Chris Cleaver, Chris Dillard and Kris Rietmann also joined us. Yes, there were four people with acoustically indistinguishable names. I kept thinking, why can’t parents name their kids something unique like Satnam (that’s me)? Kris happened to be the very charming intellectual, Kristina.
The Beginning. This was to be a challenging weekend for me. First, I tore my calf muscles while bending down for a dropped glazed doughnut. This incident severely abbreviated my training routine. Then, the flight to Seattle from my home state of Colorado was marked with a 4-hour delay; two hours were spent inside the plane sitting on the tarmac. Seattle climber Steve Bley was kind enough to come pick me up and take me to his home.
The night before our ascent began, we lodged at the lovely Trout Lake Valley Inn. The drive from Seattle turns scenic as one turns on highway 84 along the gorgeous Columbia River, which divides Washington state from Oregon. The Oregon side of the drive is lined with many waterfalls. I highly recommend stopping at Multnomah Falls. Our team got together for some pre-climb libations and carbo-loading in Hood River, Oregon.
The Adventure Begins. The next day, after a leisurely start to gear check at the Trout Lake Ranger station, we were told by our guides with Timberline Mountain Guides that the trailhead was under and hour away. After driving 45 minutes down a dirt road, we had to turn around and take a new road. The adventure began!
When we finally arrived at the trailhead we put on our backpacks and we were on our way. The first part of the trail passes through a dense forest, which was burned in a fire recently. We were chugging along. Due to the late start, our guides decided that the pace was a little below par and decided to take a direct short-cut by bush-whacking.
We followed and two hours later ended up in a large gulch with snow at the base. It was lined with over 20 ft of straight scree on both sides. Apparently this gulch is usually snow-filled to the brim and crossing it is easy. Not this day. After finding a part of the scree that seemed negotiable on one side, everyone crossed over and we made it to our base camp at 7 pm.
The route was remote, wild and beautiful. We were climbing the less traveled Avalanche Glacier Route. Most climbers on Mt. Adams opt for the South Spur route, which does not require a rope or technical skills. Our route sees fewer climbers and offers a full mountaineering experience. Our team was 9 climbers and 3 professional guides.
It was a wind-wind situation. The night wind was howling and the fluttering sound of the tent fly was really loud. Our guides came around in the morning to wake us for breakfast after we’d all had a restless night.
Snow skills school was the first order of business after food and some hot drinks. Snow school was a lot more elaborate than anything I have done in the past and I personally thought it was pretty good. After snow school, rope teams were divided and we geared up with crampons. In spite of the challenging weather forecast and consistent winds we were giving the summit a shot.
A matter of degree. A somewhat gentle slope turned soon into a relentless 40-degree slope and the real climb was on. It didn’t matter how much distance we covered, every time I looked up, the destination seemed to be the same distance as before.
As we got higher the wind picked up. It brought frozen moisture, which hit us like little stones. We hunkered down with ice axes dug in a few times. We were still a good 1500 ft below the summit when we decided to call it off and return to base camp.
Turning around is always a difficult decision. Weather and conditions dictate a summit day, and on this day, the conditions were just too precarious to continue. We carefully descended the way we came, and made our way back down the mountain. Unbeknownst to us, the Climb to Fight Breast Cancer Mt. Rainier team was also turning around.
And in the end, a quote. On the last day, we all got down the mountain safely. We returned to Hood River together. We shared stories from the past and our laughter rose from the bottom of our souls. Climb to Fight Breast Cancer teams always have the cause in the forefront of our minds, and the summit is a nice bonus when it happens. We will be back to climb another peak next year and continue to provide private support for life-saving research.
Chris Awad had the best and most unusual of bachelor parties. Much of it is not printable for family reading. Next year, we’ll be back to celebrate his nuptials.
There are a few reasons why we do this. Primary reason is that we want to raise money for breast cancer research. Second reason is that we want to spend time climbing a mountain with people whose company we really enjoy. And after that, if we can reach the summit sometimes, then that is good too. – Climber Steve Bley
Editor’s note: Thank you Satnam Doad for this excellent trip summary. Congratulations to Chris Awad and his bride. The bachelor party was a first for the Climb to Fight Breast Cancer, we hope you started a trend!