50 Shades of Pink-And Why It Helps to Know the Difference

May 17, 2013

Buy toxic chemicals and support breast cancer research! Not lying-just saw an ad on TV for weed killer and it had a pink ribbon logo on its packaging indicating, “A portion of every sale goes to support breast cancer research and awareness.” We have plenty of weed killer and a perfect lawn at our house, so I am no critic of the product. But have you noticed the pink ribbon logo on virtually every conceivable item or service?

Buy toxic chemicals and support breast cancer research! Not lying-just saw an ad on TV for weed killer and it had a pink ribbon logo on its packaging indicating, “A portion of every sale goes to support breast cancer research and awareness.” We have plenty of weed killer and a perfect lawn at our house, so I am no critic of the product. But have you noticed the pink ribbon logo on virtually every conceivable item or service? More women die of heart disease. They can be overweight, drink a bit too much wine, and skip the exercise, but miss a mammogram? Society does not tolerate that.

At our breast tumor board this week, we had a spirited discussion about Peggy Orenstein’s excellent (you can tell my opinion) article in the New York Times magazine from April 28. Indeed, I found it unemotional, balanced, and fair. One of the radiologists said Ms. Orenstein had slammed mammography as a cash cow for radiologists. A surgeon said we have to be diligent about treating DCIS, so no woman dies unnecessarily. The pathologist said it was a problem, with misleading nomenclature. A med onc agreed, pointing out that in no other anatomical location of in situ or precancerous tissue do we treat as aggressively.

My colleagues and I like to point out, tongue in cheek, that it is not the radiologist, surgeon, or rad onc who saves breast cancer patients’ lives, it is us! We treat the whole body-you don’t die from the local disease; it’s the metastases that get you. It is our job to figure out what is the optimal systemic therapy to reduce the risk of death. We are able to characterize breast tumors much more specifically now and increasingly have new therapies to utilize for metastatic and adjuvant treatment. Certainly there is robust discourse about the best adjuvant choice for luminal A or B, or triple negative. It can be challenging to pick an adjuvant or third-line metastatic regimen. For any patient, the first choice is always a clinical trial. At least with breast cancer, we have agents to choose from. The cupboard is not bare.

So you decide on a treatment plan, educate the patient about risks and benefits, and press on. But we also need to be acutely aware of the mental component of dealing with a diagnosis of breast cancer, whether it is DCIS, which we have deemed “cancer,” or Stage IV disease. Expectations have been shaped by the overexposure of the pink disease.

In large part, precisely because breast cancer has become the most heavily promoted disease in this country, women walk in with information, misinformation, strongly held beliefs, opinions, and frequently a literal army of supporters. It is always critical to pick up on visual and verbal cues with patients, but I find it even more significant with breast cancer.

Some are obvious. You walk in the door, and the patient with five friends and family members are all swathed in pink garb, toting pink carryalls, sporting pink lipstick, socks, tattoos, and hair. This is frequently the women with DCIS. Whatever works for them. I can tailor my discussion to whatever I think they will hear and understand, while always being completely honest. I will support the team in attitude. It can tempt you to roll your eyes and dread each visit, attempting to answer everyone’s queries, but at least it is an engaged patient! I do draw the line at so-called supporters who come with an agenda and pick a fight each visit. Hey, we are all here to help the patient! I’m on her side!

Support groups can be friend or foe. Patients who are doing well may participate and hear of terrible outcomes or recurrences and make immediate calls for “new” symptoms, which are really just anxiety episodes brought on by exposure to sometimes frightening scenarios. Not to mention that each patient is an individual and does not share the same treatment, goals, or management, and cannot be compared apples to apples. I try to caution patients to call me if they have questions, to not think that what someone else does or needs is right for them. Some patients even find our waiting room to be stressful. They see patients who are struggling, and it makes them fearful that they will “be like that.” It is helpful to have them express those worries rather than come in and just demand testing because they suddenly became nervous about their disease.

At the other extreme are the ladies who wedge my visit in between lunch and shopping. I better be on time because they only drop in to visit with me; they have more important things to do. “I have a reservation at Trio, and you are 10 minutes late!” They humor me for follow-up visits. They have already decided that their “episode” was a blip on the screen of life, and they are too busy to be wringing their hands. They never wear pink; many of their friends are not even aware of their diagnosis and they have no interest in sharing their experience. For them, I try to make sure they know to call if they have anything “unusual” going on. They tend to downplay symptoms.

After 30 years of practice, I have a lot of patients who are well beyond 10 years from diagnosis. At that point, most do not need to see me on a regular basis as long as they get their annual mammogram. I do offer to continue to see them yearly if they choose, and I am thrilled to keep in touch with many of them as they have become important to me as individuals-I have shared their lives for a long time. But others are satisfied to know I am available as needed and go on their merry way. Sometimes I don’t hear from them for years, but then suddenly they have a symptom or life event, and they need to be evaluated and assured that their cancer has not recurred. Sometimes I flatter myself and think maybe they just like to see me! I know I love seeing them.

The point is that breast cancer patients are a particular entity, heavily influenced by the media, social networks, and well-meaning friends. They envision themselves as patients, victims, warriors, survivors, experts, activists, victors, and people who just hit a bump in the road and kept moving forward. Pay attention to which one is sitting in front of you. It will make for a better experience for everyone.