IDLEs

Lately, much has been written about the rush-to-mastectomy decisions adopted by women with DCIS diagnoses. DCIS (ductal carcinoma in situ) is the diagnosis given when abnormal cells reside in the milk ducts. It is precancerous and noninvasive. It is not life-threatening, although it can lead to an increased risk of developing an invasive cancer. While it is unquestionably scary to receive such a diagnosis, some in the medical community are questioning whether a slash-and-burn reaction to DCIS is appropriate. The current standard of care for DCIS is surgery and radiation. A natural reaction for a woman with DCIS is to undergo the most far-reaching form of treatment available. I won’t argue with that, because no one has the right to judge another person’s reaction to or decisions toward a cancer diagnosis. Anyone who tries to should be punched in the brain. Repeatedly.

That said, data don’t lie, and the case being made for a less-aggressive approach to DCIS is gaining ground.  Dr Laura Esserman, a breast surgeon at the University of California, San Francisco, is setting the pace. In a recent New York Times article, Esserman says her goal is “to move the field and do right by our patients.”

Jim Wilson, The New York Times

Jim Wilson, The New York Times

Instead of immediately ordering biopsies for women with unsettling findings on their mammograms, Dr Esserman recommends active surveillance. She favors the “wait and see” approach, speaking out about the myriad ways in which a woman is adversely affected by slash-and-burn treatment for cancers that rarely progress beyond DCIS.

Dr Esserman is bringing to light the fact that mammograms — while valuable — find the slow-growing, non-metastasizing cancers that lead to panic more than they find the most lethal forms of breast cancer. She is lobbying for big changes in the early-detection world and has asked the National Cancer Institute to consider dropping the word “carcinoma” from the DCIS label. Instead, Esserman would like for DCIS to be renamed “indolent lesions of epithelial origin.” IDLE would replace DCIS as the way to describe a stage 0 diagnosis. IDLE is catchy and much friendlier than DCIS, if you ask me.

This woman is turning the breast-cancer world on its head, and I like it. In an era of less face-time with doctors, Dr Esserman spends as much time as needed with each patient, often texting or calling them at home. A big part of her “wait and see” approach to DCIS is asking the patients soul-searching questions and utilizing specific testing to gather further evidence before recommending surgery. She’s pushing for more innovation in clinical trials and for fine-tuning the process of screening for breast cancer.  In cases for which she does recommend surgery, Dr Esserman counsels and frets like a family member, and even sings to her patients as they undergo anesthesia. Personally, I’d much prefer a serenade to a prayer before I go under the knife. I can imagine her patients, smiling and relaxed, as they enter the last blissful sleep they will enjoy for a while to come.

I love Dr Esserman. I don’t know her, but I love her. I love that she’s crashing through long-standing views and taking the road less traveled. I believe she will enact great change in the landscape of breast cancer. I wonder how I would have reacted to my own breast cancer diagnosis if mine had lacked an invasive tumor. If my cancer was simply DCIS, would I have chosen a different path? I don’t know, but I do know how scary my diagnosis was. I know that the scorched-earth treatment plan was right for me. I had watched my mom die from cancer at age 67. My kids were still in grade school when “the C word” was applied to me. I wanted to be as aggressive as possible, so my choice was to go balls-out against cancer. And it’s a good thing I did, because my “non-affected” breast turned out to be riddled with cancer. Nothing showed up, though, on any of the screenings. Nothing. When Dr Esserman mentioned that mammograms don’t find the more lethal forms of breast cancer, I nodded my head knowingly and actively talked myself off the roof rather than allowing myself to think “what if?” What if I had chosen a single lumpectomy or single mastectomy, and that smattering of cancer cells and Paget disease in my “unaffected” breast had continued to evade detection? Would I be sitting here, typing this post? Would I be glancing up from my computer to see this guy outside my window? IMG_4795What if?

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The space inside

I read a lot about breast cancer and how it affects those it strikes. Sometimes the reading is hard — like when an intrepid blogger dies from metastatic breast cancer — sometimes the reading is sad — like when a blogger pours out her heart on the topic of life and loss — but usually it’s uplifting, restorative, and comforting.

I’ve not done a good job in this space of writing about — and railing against — metastatic breast cancer, the kind that kills. MBC is every pink-ribbon girl’s biggest fear. Once that cancer leaves the breast and travels to points far afield, usually the liver, bones, and/or brain, the game changes completely. No matter what stage one begins the cancer “journey,” once the cancer spreads, it’s stage IV and incurable. Treatable, but not curable.

The stats on MBC are horrifying, both the number of women who are afflicted and the shockingly low percentage of funds allocated for research: 30 percent of women with early-stage breast cancer will develop MBC, and 90 percent of breast cancer deaths result from MBC yet only 2 percent of funds go toward research for it, according to metavivor.org. MBC is the pink elephant in the room. Or the elephant in the pink room, as the latest metavivor campaign calls it. 

I encourage you to click on this link and go to the metavivor website. There are easy ways to get involved and ensure that more funds go toward research for MBC. Each time someone likes metavivor on Facebook, a dollar goes into the research pot. Share the image above on Facebook, add another dollar. Sign up to receive emails from metavivor and add one more Benajamin. Follow metavivor on Twitter, add one more, and mention it on Twitter with the hashtag #MBCAware for one more dollar donated. The money comes from Eisai, a research-based pharmaceutical company. I don’t know how to pronounce its name, but I like what it is doing for oncology research.

I think about MBC a lot. I’ve written about it a lot. Recurrence is the scariest part of the breast cancer “journey,” IMHO, and that’s saying a lot because this “journey” is full of pitfalls, roadblocks, speed bumps, potholes, and unpleasant detours.

Yesterday I read a fantastic post about MBC by Yvonne at Consider the Lillies, and one part really stuck with me. Much of the post resonates, but this part especially, as it perfectly describes the recurrence side of the breast cancer “journey”:

“I am afraid that the cancer that was removed along with my breast, will reappear in my bones or my brain or my liver. That it will sneakily take up residence in a vital organ. So every little headache is a warning bell, every twinge in my left hip is a harbinger of disease. The series of appointments with oncologists, plastic surgeons, breast surgeons is unsettling. Scribbled in a planner, the dates remind me that my life has been forever altered by breast cancer. I suppose I am doing just fine. I’ve even been told I look just like myself, that God would never give me more than I can handle, and admonished to put my “big girl pants on.” The thing is that those tests and scans shocked me once, and I have prepared a little space inside to be shocked once again.”

I pondered this for a long while yesterday, and realized that I too have prepared a little space inside to be shocked once again. It’s one of the many hard truths about the aftermath of cancer. On one hand, surviving such an ordeal provides a zest for life, a desire to gobble up life in big, gulping bites, to live it to the fullest, in whatever form that takes. But on the other hand, it’s hard to live fearlessly and zestfully while waiting for the other shoe to drop. It’s not a question of thinking positively or hoping for the best. It goes beyond having done the homework and made the hard decisions and undergone treatments to slay the beast. One can do all of those things and still lose this game. One can do everything right, yet breast cancer recurs. That’s why we prepare that little space inside.

In her post, Yvonne calls for an online revolution about the realities of breast cancer, especially the metastatic kind. I’m in. Me and that little space inside are all in.


Houston, we have a vaccine…

Well, not officially, but the initial studies sure look promising.

Front-page news today in Houston declares that researchers at M.D. Anderson Cancer Center right here in my fine city have good things to say about results from an experimental vaccine. The researchers are hailing the potential vaccine as “a promising developement in an emerging field in cancer care.”

M.D. Anderson nurse Sara Stassen working on AE37
chron.com

Sounds mighty good to me.

Much has been written on the blogosphere about finding a cure — or, more accurately, the utter lack of progress in finding a cure — for this disease that fells one in eight women in the United States each year. The statistics are scary, and you can’t swing a cat without hitting someone who’s been touched by breast cancer. And by “touched by” I mean gobsmacked by. It’s a vicious, insidious, relentless disease, and in the decades of research, precious little progress has been made in finding a way to eradicate breast cancer.

All of that could change, however, with this potential vaccine.

It’s not too early to celebrate, is it?

Its focus is significantly reducing breast cancer recurrence. So it won’t eradicate the disease itself, but may (hopefully, please please please, fingers crossed, with sugar and a cherry on top) prevent women who have had BC from suffering a recurrence. Once BC comes back, no matter what stage it initially was or how effective the treatments were, you proceed straight to Stage IV and are considered incurable. That’s not to say the cancer can’t be managed, because it can, but it will never be cured. And therein lies the promise of this new potential vaccine.

I’ve gotten to know many Stage IV BC gals in the blogosphere, and their struggle is rough, to say the least. Ongoing treatment, escalating side-effects and financial burdens, and hopelessness are common in their fight. Not to mention mortality. Up front and in your face with Stage IV BC is mortality, in sharper focus and with a shorter shelf-life than ever imagined.

As one of the “lucky ones” in the cancer world considering my type of BC is lazy, slow-growing, and non-aggressive (touch wood here for good measure), I have a low recurrence rate. At least according to the charts and graphs and stats. That doesn’t mean I don’t think about it every single day, fear it and dread it. Even though I’m “lucky” and for all intents & purposes my cancer is gone, as I’ve learned from the brave cancerchicks who’ve gone boldly into the night before me, it’s never over, and the fear of recurrence is always there.

mdanderson.org

That’s where Dr Elizabeth Mittendorf comes in. She’s a professor of oncology at M.D. Anderson and this study’s chief investigator. She says that cancer researchers such as herself are “in the dawn of a new era” as they manipulate the immune system to recognize cancer cells and prevent or treat the disease.

The potential vaccine, called AE37, trains the body’s immune system to attack the infamous HER2 protein, which helps tumors grow and which is present in the vast majority of BC. One of the most important factors in a BC diagnosis is whether the cancer is HER2 positive or HER2 negative. Upon diagnosis, one waits to hear that HER2 status. HER2 positive breast cancers tend to be more aggressive and harder to treat. The hope with AE37 is that the proteins that make up HER2 will be taken down. Dr Mittendorf says, “If some rogue tumor cell is floating around, AE37 can recognize it and take care of it before it can settle into bone or other parts of the body. It’ll teach the T cells to recognize that HER2 protein. So the thought would be that if the T cells were educated in this way, if the tumor cell were to come back, the immune system could identify it, attack it and destroy it before the patient would have, as we see, a measurable recurrence.”

The beauty of AE37 is that it may be helpful in fighting other types of cancer as well. Because HER2 proteins occur in prostate, ovarian, and gastric cancers as well as in breast cancers, AE37 has a lot of potential across the board. For “lucky” breast cancer gals who are HER2 negative, like me, the potential vaccine may still be helpful. Dr Mittendorf is excited that the vaccine seems to reduce the risk of recurrent breast cancer in women who had both high and low levels of HER2. Mittendorf and her team studied 201 patients whose average age was 50 and who had previously had BC but who are currently cancer-free. Half of them received the vaccine, while the other half did not, and the initial results are encouraging. Mittendorf says, “We projected that breast cancer would come back for 10.3 percent of the women who got the vaccine compared with 18 percent of the women who had not been vaccinated. That translates to a 43 percent reduced risk of recurrent breast cancer.”

While AE37 won’t replace the traditional treatments — mastectomy, chemotherapy, and radiation — it could become part of standard care and would likely work in combination with the weapons currently used against the disease. The vaccine is given once a month for 6 months and then every 6 months for 3 years. While AE37 needs some fine-tuning, and a longer-term study would yield more information into its potential, this is very good, extremely hopeful news for those of us in the BC trenches. The fact that it may be able to cut recurrence rates nearly in half makes me giddy. The fact that this important research is taking place in my city is an added bonus. Kinda makes me want to run on down to Anderson and deliver some fresh-baked cookies to Mittendorf and her team. Just a little token of my appreciation for all their hard work. Should I make chocolate chip or snickerdoodles? In this case, I think I’ll make both.