A dear friend was recently diagnosed with breast cancer. To protect her privacy, I will call her E. E is 41 years old. She works as a fitness professional. She has never smoked and rarely drinks alcohol. She works out vigorously every day. She has no family history of breast or ovarian cancer. She does have, thanks heavens, health insurance through Kaiser Permanente, an HMO with an integrated delivery system. You will see, as I tell this tale why this is such a blessing.
So, anyway, E tells me and my husband, during our morning workout, that she found a lump just above her right breast. Since we are both doctors, of course, we wanted to palpate the mass and give our opinions on what she should do. The mass was actually pretty big – not the grain of sand ditzel that had me scurrying to the doctor recently. It seemed to be about an inch long and maybe a half inch wide. But it was soft. It felt like a cyst or a fatty tumor (aka, lipoma), not the hard consistency you typically expect in a cancer. But, we said, “Get thee to Kaiser…never, ever ignore a lump”.
E was seen in less than a week and had a mammogram (oh, no, it showed calcifications) and a sonogram (not a cyst, rather solid). On the same day she had six core biopsies (“That hurt like hell,” she said). Three or four days later, the doctor called and told her the biopsy revealed infiltrating ductal carcinoma. She was going to need surgery.
Kaiser kicked into high gear. E was going to need a lumpectomy and sentinel node biopsy. E’s doctor explained everything in detail (confirmed by my husband who attended the appointment with her) and Kaiser nurses and other staff called her frequently to make sure all the arrangements were nailed down and answering any questions she might have.
Surgery was scheduled for a Friday morning. E’s mom flew in to stay with her and be with her in the days before and after her surgery. She had to show up at Kaiser at 8 in the morning for an injection that would guide the surgeons to the lymph nodes that needed to be excised and examined for tumor. She had her surgery and was on her way home by 1 pm – feeling well enough to stop by her favorite cupcake store, “Sweet Things”.
E was told she would get the results of the node biopsy by the following Wednesday or Thursday. On Thursday, my husband and I went with E to her post-op appointment with her surgeon. He had the biopsy results. “There is good news and not so good news,” he said. “Your lymph nodes are free of cancer. That is great. The not so good news is that the lower border of the biopsy specimen has atypical cells right up to the border – in other words, the margins are not completely clean. You are going to need another surgery. But the surgery will be minor – only taking about 45 minutes. You won’t require deep anesthesia or an endotracheal tube.” Patiently, he drew pictures for her of what was involved and talked about why this had happened and what it means. He gave her a three page print out of the biopsy report so she could read it and discuss it with us and others in her support network. He was warm and friendly and was completely “there” for her for more than an hour.
After the surgical appointment, E went to see the oncology support nurse. She spent about 40 minutes with E telling her about the additional support services that Kaiser offers for women in treatment for breast cancer (alternative therapies, such as massage and acupuncture and breast cancer support groups and more) and she gave E information about community resources, including free home delivery of organic meals for women getting chemotherapy (is this an “only in Marin” service?).
The next day, my husband and I went with E to her oncologist appointment. Her doctor was completely prepared for the office visit. He had a printout, customized for her, that outlined her treatment options. He was not at all put off that E had two doctors there with her in the exam room to provide her with an extra set of eyes and ears and to be sure that she got all the information she needed. He talked to her and to each of us as though he had all the time in the world and sent the message that what he wanted most was for E (and her support team–us) to understand the options.
He began the conversation by telling her that he had already spoken to her surgeon and had reviewed the pathology with him. He knew about the second operation and what the surgeon planned to do. He showed E a color chart that clearly, in layman’s language, showed her 10 year cancer-free survival with each of the potential treatments: tamoxifen alone (he showed her with his hands how tamoxifen blocks the estrogen receptors present on her tumor cells); chemotherapy alone (slightly better cancer-free survival) and the combination of tamoxifen and chemotherapy that increased cancer-free survival by “24 out of a hundred people like her.” The red bar on the chart (people with cancer recurrence) was much smaller for the combination treatment than for either of the treatments alone.
He then explained that she was estrogen receptor positive (that is good, he said) and HER2 receptor negative (but not absent – he said he would come back to that). He then explained the side effects of each of the drugs – including being explicit that she would lose her hair (but it would grow back) and that she would have other side effects (but they could be controlled). He conveyed that he had all the time in the world to answer her questions and to be sure she had the information she needed to make an informed choice of therapies.
He then described a clinical trial that she may want to consider: adding Herceptin to her chemotherapy regimen of Taxotere and Cytoxin (T+C). It would increase her chemotherapy rounds from 4 to 6 and she would have to return to clinic for a year to get the Herceptin. He did not oversell the trial and was clear that she could be randomized to T+C without Herceptin arm.
We asked questions – what about fertility? He said, “I will refer you to our infertility expert to discuss harvesting eggs.” We will make the appointment for you today. When could she start chemotherapy? –a long discussion about whether she wanted to get treatment before or after Thanksgiving. He closed by saying the next part of the visit would be working with his nurse to get the chemo treatments on the calendar and giving her a tour of the facility. E fretted over whether she would remember to come in the day before her chemo for required blood tests. He said, “I can call and remind you if you like.”
The visit with this amazing oncologist lasted almost an hour – so much for the perception of rushed 10 minute visits in HMOs. He was fully engaged with E and us – we felt like he had nothing more important in his world to do than to be sure E had everything she needed as she embarked on this journey of a lifetime. As a physician, health policy wonk and frequent critic of our healthcare non-system, I could not think of a single thing that he could of done better. Truly amazing!
Since this was Kaiser, E did not have to worry about what this was going to cost her. Outside of some very modest office visit co-pays, E’s care, including all of the wrap-around support (nurses, group sessions, etc) is simply a part of her health care coverage. Kaiser understands that providing support to ensure “cure,” if possible, is much better than having a breast cancer patient out there on her own, getting delayed treatments, inadequate psychological support, and having poor (and costly) outcomes as a result. E is not going to have to worry about getting indecipherable, shockingly large bills over the next 6 months. She is going to be able to concentrate on getting cured….plain and simple. This is financially stress-free health care. Thank you, KP.
While we were waiting for the oncologist to arrive, E got a text message from one of her friends. This is the tale of the second cancer patient. Daniel had found a lump inside his mouth on the inner side of his cheek a few days ago. He went to see an ear, nose and throat doctor who did a biopsy. Like E, the diagnosis was shocking. This 37 year old previously healthy man had head and neck cancer. His doctor ordered an MRI to determine the extent of the disease. Daniel was texting E because his insurer had denied payment for the imaging test. “What should he do?” he asked. “Fight,” we said. But why should this already “shocked and awed” young man have to fight for coverage instead of saving up all his fight for his cancer? We do not know if he got “wrap-around support” like E did as he tries to internalize his new reality, but we do know that he got a sucker punch….in addition to his cancer, he was going to have to face a battle with his “insurer” to get his tests and treatments paid for. Not right!
Now, I don’t know about you…but I for one prefer the first tale. The benefits of an organized delivery system and integrated health insurance, like Kaiser Permanente, trump any perception of “choice” hyped by purveyors of PPOs and other “free choice of provider” insurance options. I have had Kaiser coverage almost all of my adult life, with a few notable gaps related to changes in employment. After coming back from Houston, where I had a “rich” PPO benefit with a typical insurer, I was able to get on my husband’s Kaiser plan. I let out a whoop of joy and ran around the house, pumping my arms in the air, shouting: “ I got my Kaiser back. Hallelujah! My Kaiser is back!”
This is only the beginning of the story of E and Daniel. E still has to have her second surgery and get her chemo, radiation, and tamoxifen. There is a lot in front of her. But she won’t have to worry about enormous medical bills or denials of coverage. We will help her friend Daniel navigate his “insurance” as best we can. And we will let you know how it goes.
Some months from now, there will be another installment to this tale of two cancer patients. Until then, join me in sending all your good thoughts (good vibes, good energy, prayers, meditations, or whatever else is in your “get well soon” armamentarium) to E and Daniel.