The Other “F” Word

I went to see my oncologist for my six-month checkup yesterday. All was routine, other than my blood pressure being 131 over something when it’s usually in the 115 range, even when I see my family doctor. No anxiety there.

When he asked what had changed in the last six months, I told him about the endoscopy I had in December, which turned out to be normal. But what prompted it is something anyone whose had cancer faces whether you want to admit it or not (and I usually don’t)–fear. I was having stomach discomfort that went beyond what over the counter drugs could handle. I finally got worried enough to get in touch with my family doctor. Her practice has a secure portal, so I was able to email her and spew out all my fears.

Ten years ago I wouldn’t have shared my fears at all, so that’s a kind of progress. But 10 years ago, I didn’t appreciate how your body can turn on you. Thanks to early-stage breast cancer I do, and it’s hard for my mind not to immediately go to the worst-case scenario. I shared every cancer scenario that kept me awake at 2 a.m. and scheduled an appointment. 

When I came in for the appointment, she was wonderful. I did a brief recap of why I was there. She listened, then said, “Let’s put all that stuff you’re worried about over here,” waving her hand, “and focus on the symptoms.” Based on my situation and history she prescribed a stomach acid drug and endoscopy. I want to stress that she didn’t order the test because I was scared, and I wouldn’t want her to. She ordered it because it was medically indicated. I’m not a big hugger but I asked for a hug after that because her rational but respectful approach was just what I needed. I feel blessed to have her as my doctor.  

I feel blessed to have my oncologist too. When I told him about sharing a wheelbarrow full of fears with my family doctor, he nodded and said, “That’s what happens when you have cancer.” Then he paused and smiled and said, “It doesn’t help to be a cancer doctor either.” I said no kidding.

It reminded me of the “No Fear’ brand of clothing that came into vogue because of motocross. A few years back I spotted a young guy wearing a shirt that said, “Some Fear.” I laughed then, but it’s even funnier now.

The #BCSM (breast cancer social media) community has discussed this residual fear on their great Monday night tweetchat. If you feel like you could use (or lend) some support and you’re comfortable with Twitter, it’s a great chat. You can also visit their website. And they’re not snobs; some things, like fear, are universal, and people with other kinds of cancer have been made welcome there.

Advertisements

Should We Rename DCIS?

Ductal carcinoma in situ was all over the news this week, after the Journal of the American Medical Association published “Overdiagnosis and Overtreatment in Cancer, An Opportunity for Improvement.” This is a good, and necessary, conversation. DCIS was front and center as one of the prime candidates for overtreatment, and the panel proposed renaming it Indolent Lesions of Epithelial Origin (or its evocative acronym, IDLE), to lessen fear and potential overtreatment.

I can speak with some authority on the subject, as I was diagnosed and treated for DCIS five years ago. After considerable discussion and two attempts at breast-conserving surgery that failed to get the desired clean margins, the treatment plan my doctors and I landed on was a (single) mastectomy with auxiliary lymph node removal to make sure some cells hadn’t escaped. Luckily, they had not, although the mastectomy uncovered still more cells lurking beyond what the earlier surgeries captured.

I won’t repeat what others have said, but here’s my take on it. You can call it whatever you want. Call it DCIS or precancer. Call it indolent or IDLE. Call it a cab, for all I care. But if I were diagnosed today, with the same circumstances, I’m willing to bet my doctors would make the same recommendation and I would make the same choice. My oncologist told me the odds of my DCIS becoming invasive were 50/50, and I didn’t like those odds. He also told me he would support me if I chose radiation instead. “Wait and see” was not an option then, and I don’t think it would be now given my specific situation.

The other point I want to make is related to that. My book, From Zero to Mastectomy, was reviewed last week on the Breast Cancer Consortium website. While I appreciate the thoughtful treatment Bonnie Spanier gave it and her overall positive review, I want to respond to one area. She said my trajectory took me farther away from the full spectrum of the disease as a precancer, and while she conceded that was understandable at the time, she didn’t feel I gave enough attention to the complexities of DCIS.

The book was not an academic exercise for me. I did not set out to write The Emperor of All Precancers. I felt, then and now, that the best way I could help other women was by sharing my experience.

Here are some links to recent and not-so-recent stories about DCIS.

If you read only one thing regarding the current debate, read “What’s In A Name?” posted on the #BCSM Community website. This piece, by Jody Schoger and Drs. Deanna Attai and Michael Cowher, is the best summary of the issue I’ve read.

Bloomberg News ran a well-balanced story on handling this confusing diagnosis, and I was one of the women interviewed.

CURE Today magazine ran the piece “Redefining the Word Cancer,” in which Debu Tripathy wisely said, “one cannot just declare a new system into existence.”  (Especially a belief system: See: Mammograms, Annual.)

The same point was raised in the New York Times “Well” blog, in its excellent “Scientists Seek to Rein in Diagnoses of Cancer.” My favorite part of this piece was when Memorial Sloan-Kettering’s Dr. Larry Norton said changing the terminology does not solve the problem of doctors not being able to tell patients which cancers will remain indolent and which will go on to kill them.

The best path we have remains the one we’ve always had: individual consultations between doctor and patient, based on individual physical characteristics and risk factors. I would also add levels of risk tolerance. I discussed it a bit in my Bloomberg News interview, and I’ve also written about women who opt for bilateral mastectomies after being diagnosed with DCIS. As the discussion about this poorly understood condition heats up again and the public opinion pendulum swings in favor of watching and waiting, let’s not stand in judgment of their choice.

My Other Life

A few weeks ago Marie Ennis-O’Connor, who blogs at the terrific Journeying Beyond Breast Cancer, invited the breast cancer blogging community to write about our Other Life; to share who we are when we aren’t talking about cancer. She got wonderful responses from Stacey at Bringing Up Goliath and Jody at Women With Cancer, among others. It’s been so much fun to learn more about these great bloggers and great women.

When I started thinking about my other life the thing that surfaced most quickly was poetry. My life is like anyone’s: work, family, friends, volunteering, recreational activities like watching college sports, concerts, travel. But the thing that’s strictly mine and the thing I want to get better at is poetry. When I write for myself, the shape it takes is a poem.

I’ve been writing poems since I was a little kid. I wrote poems through grade school and high school. Then, after taking a couple of poetry writing classes in college and getting a handful of things published, it stopped. I was too caught up in day-to-day life, and my only after-hours writing was freelance articles about technology or public relations. I really thought that part of my life was over, and I missed it but I didn’t try to do anything about it.

Poetry stayed away from my life for close to 20 years, until I was diagnosed with DCIS. Since this is a stage 0 breast cancer, I wasn’t in a fight for my life but it still served as a wake-up call. You could say cancer turned into a weird but welcome muse. Poetry started speaking to me again, and better still, I started writing again. Like before, I’ve had a handful of things published. I have a few different areas I want to dig into, including the effects of digital communications. I’ve written a few poems focused on that, including the sonnet below.

I wrote it last year and had no particular plans for it until I saw a call for entries for the annual Anne Dittrick sonnet writing contest this spring, sponsored by Nebraska Shakespeare. It ended up getting  honorable mention out of 100 entries, so it was printed in the program for this year’s Shakespeare on the Green performances in Omaha. (I believe the “starving artist” stereotype originated with poetry because you’re usually paid in copies. I’ve been paid with money only once, when three of my poems were accepted by Rolling Stone and I got a whopping 10 bucks apiece. Believe it or not, they used to publish poetry back in the ’80s. They only published one of them before they stopped including poetry, which is too bad. Poetry needs as many mainstream venues as it can get.)

21st Century Sonnet

How Shakespeare ever managed, I don’t know.
Although the language mattered so much more
it had to give him confidence to sow
such sublime music, freeing words to soar.
And what of now, you wonder. Well to ask
when texts and tweets and IMs all hold sway.
Can any of us comprehend the task
of holding short attention spans at bay?
I cannot help but think of what we’ve lost
when words are something to fast forward through.
U R the 1? Okay, but at what cost
these shorthand thoughts, what love we never knew?
The music in the bones of words has gone;
without it, can the food of love play on?

Welcome to Grand Rounds, Vol. 7, No. 31

Welcome to Grand Rounds! First, a quick shout-out to Nick Genes, an emergency medicine physician who blogs at blogborygmi (possibly the best blog name ever) and is one of the founders of Grand Rounds. I had no plans to host GR a second time until I saw Nick’s APB for April hosts. I had forgotten how much fun this was until the posts started coming in. So thanks, Nick.

The theme this time is what gives your life or work meaning. One of the loveliest, most contemplative posts I’ve seen on this topic is Nourishing Healthy Seeds from Deb Thomas, who blogs at Debbie’s Cancer Blog. Another one I loved comes from psychiatrist Greg Smith. He has become one of my favorite bloggers and The Day The Music Died is one of many reasons why. He captures music’s power to heal and bring us together during times of profound sadness.

Psychiatrists are famous for answering questions with a question, such as “What do you think it means?” But in all seriousness, the good doctors at ShrinkRap want to know what meaning we ascribe to psychiatry. Here’s the survey.

Dr. Val, who blogs at Better Health and coincidentally, is the other founder of Grand Rounds, submitted the wonderful The Hug That May Have Saved A Life, or as she called it, “meaningful use of a hug.” If you ever needed a testimonial about the healing power of touch, this is it.

I triple dog dare you not to be inspired by Diabetes Polar Flight, Take-Off Today! It’s a Diabetes Mine interview with Douglas Cairns. Kicked out of the Royal Air Force when he was diagnosed with Type 1 diabetes, this record-breaking pilot is on a mission to show what you can achieve.

Bongi, a South African surgeon who blogs at Other Things Amanzi, submitted Tongue Twister. Honestly, I have no clue how this fits, other than “it means what it means,” his Zen response when I asked about it. Bongi is one of the best, most vivid storytellers out there, and you are likely to get a laugh if not a vicarious thrill out of this one. Call it the sound of one hand klapping.

Some submissions were love letters from doctors to their chosen profession. ACP Hospitalist submitted Life At Grady: Medicine Nerd by Kimberly Manning, in which she explains why she loves being a doctor. And no, it has nothing to do with the long white coat. Beth Renzulli, who blogs at The Happy Internist, submitted I Love Medicine. And John Mandrola, who blogs at Dr. John M, shared a heartfelt thank you letter in The Most Noble Nobel. It’s the best illustration I’ve ever seen of the intimate connection between research and life.

While doctors love their work, they are less enamored of a system that seems determined to marginalize them. Doug Perednia, who blogs at Road to Hellth (you know what it’s paved with), submitted How to Sabotage A Health Care System. He and many other doctors are questioning the meaning and value of what they do thanks to Kafkaesque experiences like the one he recounts here. After reading it, I can tell you that sabotage is not too strong a term.

Some submissions found meaning in teaching. Christopher Bayne, a urology resident who blogs at hokieMD, submitted The Essence of Medical Education. Chris explained he thinks the open sharing of knowledge has the greatest meaning in medical education, or as he said in his post,”The essence of medicine is sharing our human gains with the rest of society.” 

ACP Internist submitted QD: News Every Day–Physicians Are Peeking Behind Dr. Oz’s Curtain and told me this post was especially meaningful because their physician audience has to contend with patients who get their information from television personalities. I applaud these doctors. It’s bad enough when someone like Oprah values ratings above science. It’s way worse to have an MD go native the way Dr. Oz did. We expect more from doctors.

Social media has become a meaningful way to connect, but it comes with healthcare confidentiality issues. One doctor recently learned this the hard way, as David Harlow explains at HealthBlawg.

Beth Gainer, a breast cancer survivor who blogs at Calling The Shots, submitted Sexualizing Breast Cancer, a topic she said means a lot to her because society needs to change the way it views breast cancer, and because the conversation should be meaningful instead of degrading. Of late, it’s been rather heated as well.

I’m always interested in where posts come from, and the following three came from Canada. Many of us find meaning in sports, and Carolyn Thomas, who blogs at The Ethical Nag, submitted the lighthearted Do It Yourself Psychotherapy for Suffering Hockey Fans. Psychologist Will Meeks took a slightly more serious approach in Emotion Maps. Will explained that being able to sort through and understand our emotions helps us live a healthier life. Finally, a post that really resonated with me came from Susan Biali, MD by way of KevinMD. Its title, Stop and Really Think About What You Want From Life, says it all. Dr. Biali did not let her passion for medicine extinguish her passion for flamenco.

Barbara Kivowitz, who blogs at In Sickness and In Health, submitted the thoughtful Taking A Break, in which she and her partner took a much needed break from illness and caregiving.

I’d like to close with a bit of a counterpoint from Dr. Jessie Gruman at Better Health. It’s called Finding Meaning in Illness: Lemons and the Demand for Lemonade, in which Dr. Gruman contends that her illness is neither blessing nor lesson.

Thanks so much to everyone who submitted, and I hope you have as much fun reading these great stories as I did.

New Study Offers Glimpse Into Future of DCIS Treatment

Thanks to researchers at the University of California-San Francisco, we have a brand new set of acronyms to add to the breast cancer lexicon. The one you may already be familiar with is BRCA. BRCA 1 and 2 are genes that, when mutated, are linked to hereditary breast and ovarian cancer.

Researchers at UC-SF identified three biomarkers specifically related to ductal carcinoma in situ, or DCIS, a very early stage breast cancer that is confined to the milk ducts. The new biomarkers are called p16, COX-2 and Ki67. (I’d love to know how they come up with these names.) When all three were positive, a woman’s risk of developing invasive cancer within eight years was 28 percent. When all three were negative, the risk was 4 percent. You can read the article at The Journal of the National Cancer Institute. There’s also a more user-friendly article at the New York Times Well blog.

The study is not comprehensive. It included only 1,162 women, the women were treated with lumpectomy only–lumpectomy plus radiation, or mastectomy, are the typical treatments–and it only studied their risk for developing invasive cancer and not recurrent DCIS. Still, it’s a great start.

I’m one of the thousands of women diagnosed with DCIS each year. I chose mastectomy after two attempts at breast-conserving surgery failed to get the desired clear surgical margins. I could have opted for radiation but I wanted a sure bet–DCIS is virtually curable with mastectomy.

Radiation can also be a very good choice but it will depend on your individual circumstance. In my case, I had an awful lot of DCIS. Because of that and some other red flags, one oncologist I talked to estimated my risk of developing invasive cancer within five years at 50 percent.

DCIS is sneaky. Doctors call it “multi-focal”–it could take up residence at one end of a milk duct, or at both ends, and in the middle too. When they biopsied my breast tissue after the mastectomy, some DCIS cells were still lurking in the tissue.

I have absolutely no regrets about the choice I made. But it’s nice to know that in the future, women will be able to make even more informed choices. Just as BRCA lets women make choices based on their genetic predisposition to breast cancer, p16, COX-2 and Ki67 will allow them to make choices based on their individual biomarkers. And that’s good news.

The Warrior Princess Needs Your Vote

If you’ve read my previous blog posts, you may recall mentions of my friend Pam, who is in round 2 of a battle with the Stage 4 breast cancer monster and she’s not even 40 years old yet. She was an amazing mentor to me when I was diagnosed with ductal carcinoma in situ. One of my fondest memories is when she sent his and hers “F*ck cancer” stocking hats to my husband Bruce and me. My hat was a big hit at my second lumpectomy.

What can I tell you about Pam? She’s a life force. She lives each moment to the fullest, with zest and joy. She also induces whiplash in any men in the general vicinity. Pam has the face of a beauty queen and the heart of a lion. I wrote a poem for her called “Warrior Princess” and may post it here one day, but I’m trying to get it published and some venues won’t accept work previously posted, even in a blog.  

Pam is also a contestant in the Susan G. Komen for the Cure Honorary Bat Girl Contest, which is in its sixth year. Major league teams will have honorary bat girls for the home games taking place on or near Mother’s Day. Pam wants to be the bat girl for the Kansas City Royals, and could use your help.

If you want to vote for Pam, please click on the link in the previous paragraph, then click on Vote for A Story. The list will appear in alphabetical order, so click on the little search box and select “Nick Name Z to A” to bring up Pam’s nickname “Warrior Princess.” When you bring up her story, you’ll be able to vote for her, and you can vote as many times as you want. They don’t show a specific date when voting will close but the official rules say it will be on or around April 12th.

Disclosure: I have selfish reasons for asking for your vote, because if they pick Pam, Bruce and I will be in the stands yelling our heads off. Thanks.

Paying for Mastectomy/Reconstruction: Good Luck if You’re Uninsured

If I had a nickel for every time someone mentions health-care reform, I’d be doing better than Warren Buffett or Bill Gates. And nickels are what I’d like to focus on right now. Anyone who has been following this issue at all knows that people are being driven into bankruptcy if they develop medical conditions such as breast cancer and are unlucky enough not to have health insurance. I’d like to offer my two cents (I know, the money metaphors are just flowing today) on how that can happen by giving you a feel for what some of this costs.

My experience is limited to surgery since neither radiation nor chemotherapy was part of my treatment plan. I had a total of five surgical procedures for my ductal carcinoma in situ: two lumpectomies, one coupled with a wire localization procedure; a simple mastectomy combined with sentinel node biopsy and first-stage reconstruction, second-stage reconstruction coupled with augmenting and lifting the other breast to provide symmetry, and nipple reconstruction.

Grand total for these procedures, which does not include dozens of consultations, follow-up office visits and lab work not directly tied to each surgery, was just under $83,000 (in 2008).

I’m one of the lucky ones. Both my husband and I are employed and have health insurance. I met our family deductible quickly and it was smooth sailing from there. I hate to think of what would have happened if we did not have that access. We would have been taking out a second mortgage, which isn’t an option if you already have one, or don’t own a house.

I can’t help wondering what this cost scenario would look like if the health insurance landscape was different. What if health insurers could no longer cherry pick clients by denying people with pre-existing conditions? We know that hospitals have to factor the costs of treating uninsured and lower-compensation Medicare patients into what they charge the rest of us. What if there were fewer uninsured out there? What if doctors didn’t have to practice medicine with one eye on what insurance will accept and another on what they might get sued over? We keep talking about health-care reform and I would argue we need to be framing it in terms of insurance reform and tort reform. The health care I received was stellar and doesn’t need reform.

Surely someone has done or is doing studies on what these costs would look like if doctors and hospitals didn’t carry these burdens. The thing that has always resonated the most with me in this discussion was when President Obama said he remembers his mom fighting with insurance companies as she was dying of cancer. If only we could trust either political party to be looking at it from this angle instead of trying to score points at the other’s expense. Let’s just hope that whichever side “wins,” it’s not a Pyrrhic victory.