Cancer Realities

By Richard C. Frank, MD

I recently attended the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago. With 30,000 members from around the world, ASCO is the leading organization of professionals involved in the care of patients with cancer. The main focus of the meeting is for researchers and clinicians to report on and learn about new therapies to treat cancer or new ways of thinking about the biology of the disease. As with any large, scientific meeting of this kind, there is an enormous amount of information, from very substantial advances to “incremental’ ones, as well as many failed efforts.

I viewed the meeting from two perspectives. The first was to look at the big picture and report to you my impressions of whether or not we are winning the war on cancer. The second was as a practicing oncologist, with boots on the ground, asking if my patients are significantly better off because of what I learned at the meeting.

The “war on cancer,” a term coined in the 1970’s by the Nixon administration, is actually not quite a war but thousands of different battles, being waged in the lab and in the clinic.  There are hundreds of different types of cancers and each will ultimately have its cure. There will not be one cure for all of cancer. But, the strategy to treat most cancers is becoming rather uniform. As scientists discover the main genes that drive a cancer cell to grow, pharmaceutical companies develop specific drugs to block those genes (actually, the proteins they give rise to). The new drugs are “targeted therapies,” chemically designed to block the function of one or a few important targets in a cancer cell. Major advances in targeted therapy have already led to the cure of certain cancers, such as chronic myelogenous leukemia (CML) using imatinib (Gleevec), Her2 positive breast cancer using trastuzumab (Herceptin) and non-Hodgkin’s lymphomas using rituximab (Rituxan).

Many of the studies discussed at the conference used new drugs to fight cancer; others combined existing drugs in new ways. But, disappointingly, there were no announcements of new cures or major advances in treating the most difficult to treat cancers, which include the advanced stages of bladder, colorectal, esophageal, kidney, lung, ovarian, and pancreatic cancers and brain tumors. Some studies were “positive” but only added a few weeks or months of life. Several “negative” studies were also announced. Other approaches are clearly needed.

Fortunately, new drugs that target the immune system are leading to very promising results. For example, when the immune-targeting drugs ipilimumab (Yervoy) and nivolumab (anti-PD-1) were combined to treat patients with metastatic melanoma, 30% of patients experienced an over 80% reduction in their tumors, which were long lasting.  These therapies are being applied to other cancers.

Interestingly, and of interest to many, there were several studies using herbal or other natural supplements to treat or prevent cancer. Several of these did appear promising, for example using a combination of herbal supplements to treat recurrent prostate cancer.

In terms of the war on cancer, although the ASCO 2013 meeting was characterized mainly by small advances, I do believe we are making forward progress, winning some battle skirmishes. Still, we are far from victory over the cancers that remain incurable.

As for the patients I see every day, engaged in their own unique battles, the meeting did not change much of how I presently care for them. It did however encourage me to continue to be a strong advocate for research and to guide cancer patients into clinical trials that may help them or others in a similar situation.

By Heather Millar

I just took an on-line test from The Lung Cancer Project, a joint effort of the oncology biotech company Genentech and leading academic researchers in psychology and oncology. I’m a little bit stunned: It seems that I strongly associate lung cancer with the word, “shameful,” and that I also link lung cancer with smoking, and a generally hopeless prognosis.

Consciously, I knew these facts before I even logged on to take the test:

• More Americans die from lung cancer than from breast, prostate and colon cancers combined: 160,000 people every year.

• Yet lung cancer receives less research funding than any of those other common cancers: breast, lung and prostate.

• People who have never smoked can get lung cancer. Approximately 1 in 10 lung cancer patients have never taken a pull on a cigarette or a cigar.

• People can develop lung cancer from exposure to environmental pollutants like radon, asbestos, or second-hand smoke.

The online test I took suggests that, unconsciously, my ideas are different. The test had me respond to a bunch of images: Cigars, ashtrays, lighter, lung tumors; breasts, breast tumors, French fries, burgers and candy. They kept switching which images were linked to breast cancer, and which to lung cancer, and which keys I should press. Sometimes the cigarettes went with breast cancer, and sometimes lung. I admit that it was more difficult for me to remember that cigarettes went with breast cancer than to link them with lung cancer.

Now it’s my turn to feel ashamed: I helped take care of my Dad as he died from lung cancer. I’m now cooking meals for a family friend who struggles with advanced lung cancer. That friend has never smoked. At least I’ve got company in my prejudice and self-deception: After results from more than 1,700 tests were tabulated, the Project showed that 3 in 4 people have a negative bias toward people with lung cancer, even if they’re cancer patients, or healthcare professionals or caregivers. That’s me. That’s you.

And that’s a problem: A growing number of studies show that more than half of all people with advanced lung cancer never receive treatment. And, of those advanced cancer patients who never receive cancer care like chemo or radiation, 68 percent are lung cancer patients. That’s almost seven out of ten: a whopping number.

Emerging research shows that one reason these patients never get care is the terrible associations most of us have with lung cancer. You know the ones: “Only smokers get lung cancer,” or, “What do expect if you smoke?” or, “Lung cancer’s a death sentence.”

Dr. Joan Schiller, a lung cancer specialist and president of The National Lung Cancer Partnership, had a lung cancer patient who just told everyone that she had breast cancer. She didn’t want to deal with people’s assumptions and judgments, explains Schiller, who’s also the head of hematology oncology at University of Texas Southwestern Medical Center in Dallas.

That’s unbelievably sad, isn’t it?

Schiller thinks so, and she’s working to change things. The Partnership funds lung cancer research, helps patients make treatment decisions, and is hoping to double lung cancer survival by 2022.

Lung cancer survival stats are still rather grim. Over half of all people diagnosed with lung cancer die within a year. The 5-year survival rate is just over 16 percent. But these numbers are improving, Schiller says. And remember: Patients who get diagnosed early double their chances of surviving more than five years post diagnosis.

“If we’re ever going to improve outcomes, we need to get over this stigma,” Schiller says.

Don Stranathan, a Stage IV lung cancer survivor from Santa Rosa, California, agrees. Stranathan hiked and mountain-biked through his chemo and radiation treatments and has been in remission four years.

Stranathan works with the Lung Cancer Project and frequently posts about lung cancer awareness. You can follow him on Twitter,  @don450sl.

“People don’t want to talk about it because of the stigma. But we’ve got to be more open,” says Stranathan. “If you’ve got lungs, you can get lung cancer.”

What do you think?

By Heather Millar

Before the Angelina Jolie mastectomy stories have even faded from the pages of People magazine, a celebrity once again has brought cancer into the headlines. It would be hard to miss this story this week, but in case you have: Actor Michael Douglas, while promoting his new biopic about the flamboyant pianist Liberace, allegedly told The Guardian of London that his 2010 neck and throat cancer was caused by the human papilloma virus (HPV). The HPV, he allegedly said, was caused by oral sex of the kind that a man performs on a woman.

Douglas’ comment brought all kinds of publicity to him and to his movie Behind the Candelabra, but perhaps not exactly as he would have wanted. The remark went viral on the Internet. Then Douglas’ ex-wife, to whom he was married from 1977 to 2000 made a statement the he didn’t get the virus from her. Douglas backtracked, claiming he’d been misunderstood. So The Guardian released the audio recording of the interview.

Like Angelina Jolie’s mastectomy, the best thing you can say about Michael Douglas’ HPV comment is that it got us all talking.

Here are some of the main things to know:

• HPV is incredibly common. About 85 percent of us will be infected by it at some point during our lives; approximately 20 million are actively infected at any one time. Usually, we fight it off. But in a few cases, it will progress and cause a cancerous lesion.

• Docs used to think that the biggest danger from HPV was cervical cancer. That’s why we women get Pap smears. But in recent years, HPV has been shown to cause more neck and throat cancers than smoking.

• Yes, oral sex is one way that HPV might move from one person to another. But there’s not a straight line from oral sex to cancer. (This is the main substance of Michael Douglas’ backtracking.) Just because you’re HPV positive doesn’t mean you’re going to get cancer, but it does raise your risk.

• HPV-related cancers of the neck and throat are six times more likely to occur in men than in women.

• The typical neck and throat cancer patient used to be a drinker and a smoker. That’s no longer true. HPV-related oral cancers are on the rise.

• Currently, doctors don’t have a way to screen for oral HPV. But watch out if you have any of these symptoms: hoarseness, a sore throat that persists, pain or difficulty swallowing or chewing, mouth sores that don’t heal, a lump in the neck.

• If you do contract a cancer of the head or neck, that cancer may be easier to treat if you’re HPV positive.

Mount Sinai Medical Center in Manhattan has created this awesome infographic about HPV and head and neck cancers. WebMD has a write-up here. You can check out the Centers for Disease Control (CDC)’s FAQ here. There’s an award-winning piece in the cancer magazine, Cure, here.

Cancer patients know more than most people how hard it is to determine exactly what prevents cancer, beyond the usual “eat right, exercise, don’t smoke” exhortations. Yet here’s one thing we can absolutely do to prevent cancer: The CDC recommends the HPV vaccines.

Yes, sometimes vaccines cause side effects. The Centers for Disease Control (CDC) lists them here. But 90 percent of the time, the problems remain mild (fevers, soreness). Really serious side effects like brain swelling or pneumonia usually affect 1 percent or less of those who receive vaccines. As the CDC says in its statement about the Hepatitis A vaccine, it’s “the vaccine is much safer than getting the disease.”

Vaccines have been controversial since the first vaccine, for small pox, was introduced in the late 1700s. I can understand the fears about side effects; I have a dear friend who has had three heart attacks because of a medication interaction. But the most serious popular notions about vaccines, such as the idea that some of them can cause autism, have been disproved again and again. Remember: vaccines are given to prevent diseases that used to kill people in the tens of millions.

As a cancer survivor, I can’t imagine passing on a vaccine that might prevent cancer. Would you wish the harrowing experience of cancer treatment on anyone? Alas, in the United States, despite the CDC recommendation that both girls and boys get the HPV vaccine, only about 35 percent of girls 13 to 17 have received a full course of the shots. Part of this reluctance, I think, is that HPV involves that hot button issue of sex. Parents don’t want to think about the future sex life of their tweens and teens. A study published this spring says that 44 percent of parents don’t intend to vaccinate for HPV, up from 40 percent in 2008.

I can’t tell you how sad this makes me. Giving the HPV vaccine just protects kids; it doesn’t condone or cause promiscuity. How many boys and girls are going to grow up and get cervical, throat or neck cancer because they didn’t take advantage of this simple preventive measure?

My own daughter is 12. She got her first HPV shot in April, and gets the first of two booster shots next week. I can’t protect my kid from all the nasty things in the world, but I can protect her from this one danger. For me, it’s a no-brainer. What about you?

By Heather Millar

About two months ago, I went in for my annual ob-gyn check-up. My doctor, Mindy Goldman, a professor at University of California San Francisco, has made a research specialty of exploring the problems that breast cancer survivors have. Dr. Goldman checks in on many levels: family, work, sex, social life, energy level, medication side effects.

At my appointment, when I complained about how difficult it is to reclaim your life—all of your life, sex, work, friends, energy—after cancer. Dr. Goldman asked, “How long since you finished active treatment?”

“About two years,” I replied.

“Well,” she said. “That sounds about right. I’ve observed that it usually takes a couple years before cancer survivors start to feel normal again. It takes a long time to feel like you’ve got your life back. Now’s about the right time to start working on your relationship with your husband, if you feel there’s room for improvement there.”

On the outside, I nodded dutifully and listened to her advice about how to get my romantic life back on track. But on the inside, this was my internal dialog: “What?!! Two years?! Why didn’t anyone tell me it would take that long? Why does everyone talk about post-treatment depression, work re-entry anxiety and all those things, but not the fact that it might take two years to feel normal again?!!”

In my medical team’s defense, I suppose they don’t tell patients this because everyone is different: Nancy Brinker, who started the Susan G. Komen Foundation in memory of her sister who died of breast cancer in her mid-30s, seemed to have barely skipped a beat when she herself got breast cancer. She didn’t stop working, or traveling, or going to social functions. Most patients, I think, cannot live up to this standard and take time out during treatment. Some feel pretty normal after a year. Some might take two years. Yet others might battle chronic treatment side effects and never feel quite normal again.

I wish the docs would let us know about this variation, yet tell us that normalcy takes a long time, longer than we might expect. I think this might help a lot of patients, and a lot of patients’ spouses, and a lot of patients’ families, to relax a little.

We need to know to give things time. At first, I thought I would have to just get through a couple months of depression after radiation ended. I battled through that, but then I had to face crippling stage fright about working again. Good writing, I think, comes from both reflection and a kind of extreme honesty. That’s hard to pull off when you feel you’ve been in Cancerland for more than a year while the world busily moved on. It’s hard to express yourself properly when the chemo brain still befuddles. Once I started working, I had to cope with lingering fatigue. It’s only been about six months since I stopped taking naps pretty regularly during my workday. Then, once I was working, socializing, exercising with a reasonable amount of energy, I took an honest look at my endlessly supportive and understanding husband and realized that the poor guy was not only suffering from his own kind of cancer PTSD, he’d been rather neglected since my diagnosis. So much had been about me. What about him?

We need to have the patience to let things unfold. Lord knows that cancer is about loss of control. I don’t know about you, but that doesn’t mean my control freak tendencies have completely disappeared. As a survivor, it’s when I’ve relaxed, when I’ve stopped trying to manage and control everything, that things have gotten better. This has been true not only for me, but for my husband and my family.

We also need to accept that normalcy does not mean that things will go back to exactly the way they were. I think my 12-year-old daughter will always have a vulnerable place that’s related to my cancer. She doesn’t want to talk about those fears and feelings yet, but I know they’re there. The left breast where I had my lumpectomy is partially numb; I just have to accept that. My husband has become a little tentative at times. Post-cancer, he has to fight the fear of being too demanding. None of these things are exactly optimal, but neither are they a bar to happiness.

As I write this, it is now two years and six months since I finished active treatment. I am just starting to feel normal again. My marriage is just beginning to feel normal again. I wish someone had told us it might take this long.

If normalcy is taking a while for you and your family, or for you and your spouse, don’t despair. It takes a long time. Hang in there.

By Heather Millar

As I’ve mentioned many times, I am very, very lucky to have what the press have called a “gold-plated” insurance plan through my husband’s employer. Even with that privilege, cancer was a financial black hole for my family. Though our co-pays and out-of-pocket medical expenses were kept to a minimum, we’re still paying off the credit card debts we ran up because, for 18 months, I was too sick, too addle-brained or too tired to work.

And I know so, so many people who’ve had it much worse than my family did: A woman with metastatic breast cancer who was reduced to charity fund-raising and living on friends’ couches in the last months of her life; a woman with colon cancer who shared my radiation time slot and who lost her job while in treatment, a family who had to sell their house because the Dad had pancreatic cancer.

As a society, when we talk about cancer costs, we are usually talking about the costs of drugs, chemo, radiation, scans and the like. We’re talking about hospitals and employers and insurance companies. We too seldom talk about the collateral financial damage to patients, the family upheavals, the embarrassment, or the debt burden that may go on for years afterward.

Yet patients are reluctant to bring up any of these worries with their doctors because they’re afraid it will compromise their care, according to a new report from Duke University. Researchers there surveyed 300 patients who had insurance. Even with that medical coverage, some 57 percent of the patients surveyed said that they wanted to discuss treatment costs with their doctors. But only 19 percent actually had that conversation. Why? Because they were afraid that talking about cost would compromise their care.

If you want to know a major source of our healthcare system’s dysfunction, really, you need look no further than the results of this survey: Busy doctors trained to “do everything” regardless of cost. Too little talk about “goals of care,” that is, exactly what are the goals of treatment? Because, alas, not every patient can be cured. Patients reluctant to bring up the subject of cost because they’re terrified, embarrassed and overwhelmed. Patients who don’t think their doctors should consider recovery times, time off work for appointments, travel time, transportation costs, hotel costs and lost income when outlining a treatment plan.

The Duke researchers, who will present their results at the American Society of Clinical Oncology meeting in June, further questioned the patients who had the greatest financial distress, as measured by a tool used by financial planners. Of these struggling patients, 61 percent wanted to talk about cost. Only 25 percent did so.

Here’s the headline for patients: Those who did talk to their doctors felt that they were able to hold the line on costs but did not feel that their care was compromised.

“There’s a real disconnect,” says Yousuf Zafar, M.D., MHS, assistant professor at Duke and lead author of the study. “[Our study] suggests that the perceived barriers to the cost conversation aren’t real, and we need to do more to foster a dialogue around these issues.”

Yes, yes, yes! Doctors and hospitals keep saying that patient values and preferences should be part of the medical decision-making process. For many of us, money is a HUGE issue when we’re ill. Let’s not be afraid to be honest about that.

By Heather Millar

Both my Twitter feed and my Facebook feed are crackling with discussion of a remarkable op-ed by Angelina Jolie published in the May 14 edition of The New York Times. In her essay, Jolie reveals that after 10 years of fighting, her mother died of ovarian cancer at age 56, that both she and her mother have a gene mutation that predisposes women to breast and ovarian cancer, that her doctors gave her an 87%  chance of developing breast cancer and a 50% chance of developing ovarian cancer. Jolie had a preventive double mastectomy earlier this year, and reconstructive surgery. She implies that she is also planning to have her ovaries removed.

Let’s unpack all this. First, here are the things to admire about Jolie’s actions and her opinion piece:

• Jolie has proved once again that she is not your average movie star-director. She’s thoughtful and intelligent; she seems to have written this op-ed herself. She seems committed to making the world a better place. She doesn’t shy away from the hard choices.

• For all her smarts, Jolie is a sex symbol. Now, she’s a sex symbol who’s had her breasts cut off and reconstructed. Apparently, society is still willing to consider her a beautiful woman. That’s awesome. Truly.

• Jolie did not let this become a tabloid circus. She broke the news herself in what is arguably the nation’s newspaper. Bravo.

• She’s got people talking about breast cancer. My husband tells me I live in a bubble, that not everyone is comfortable talking about breasts or cancer, let alone those two things together. OK, I’ll allow that that’s probably true. There’s still a lot of fear and ignorance out there, so thanks Ms. Jolie for starting this discussion.

I am not criticizing Jolie’s choice. Each person must face cancer in his or her own particular way. I would never presume to tell another patient what they should do. But here are the things that trouble me about this story, and about how Jolie’s actions might be interpreted.

• Jolie’s medical situation is as rare as her personal situation: How many of us have looks that compare with Jolie’s? Could we all emerge still gorgeous after something like this? Likewise, how many of us have her resources to seek out the absolutely best doctors available, whatever the cost? Only 2% of breast cancer patients have the BRCA-1 or BRCA-2 gene mutation, that figure rises to 10% for patients under 40.

You can find an excellent, but somewhat technical, overview of the BRCA mutations on the National Cancer Institute website, here and a shorter, simpler explanation on the WebMD website, here. Here’s the main take-away in my opinion: Jolie’s medical situation cannot be compared to 98% of breast cancer patients, perhaps even 99% because each woman with a BRCA mutation has a slightly different risk.

Jolie acknowledges this in her piece. She encourages women with a family history of breast or ovarian cancer to seek medical advice for their particular situation. I just hope that women do that, and don’t assume that Jolie’s situation is the same as theirs. Every cancer is different, people!

• It’s expensive to be tested for the BRCA mutations. I know. I am adopted, and know only the bare bones of my genetic heritage, so I was tested for the BRCA mutations not long after diagnosis. One company, Myriad Genetics, owns the patent on these genes and the test; people rightly question this, and the Supreme Court recently heard arguments about whether Myriad should be able to do this. Even though I have one of those “gold-plated” insurance polices through my husband’s employer, not all of the testing was covered. I ended up paying $800, the total cost was several thousand. Will Jolie’s revelation send hundreds of thousands to Myriad, seeking the test? I don’t know, but I’m not sure I could defend a run on such testing.

• A generation ago, the breast cancer treatment mantra was “a chance to cut is a chance to cure.” Radical, disfiguring mastectomies were the norm. Then, it turned out that removing women’s chest muscles and even their ribs didn’t necessarily lead to better outcomes. So now, women with small, localized cancers may have breast-conserving surgery. The term “lumpectomy” was originally coined by critics hoping to discredit the procedure. Will Jolie’s choice mean that many who might have had lumpectomies, choose mastectomy instead? I hope not. Cutting off breasts may absolutely save Jolie’s life, but it won’t necessarily save yours.

• Jolie rightly points to the progress that’s been made in reconstructive techniques. Today, it really is possible to have nipple-sparing surgery and reconstruction that looks almost as good as the real thing. But here’s a reality check: The “chest expanders” that make space for the implants hurt. (Think braces for your chest.) It doesn’t always work. I can’t count the number of times I’ve heard stories about infections around the expanders, or second, third and fourth surgeries to correct problems with the expanders or the implants. One cancer acquaintance, after three hospitalizations related to her reconstruction, just gave up. So we’ve made progress, but it’s not perfect.

• And here’s my main beef with Jolie’s piece: The idea of “taking control” of breast cancer. Her op-ed ends this way, “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.”

This may have been true in Jolie’s case, that she could take control of her risk of breast cancer. That idea of  “taking control” is so appealing, especially to Americans. If only it were the dominant reality.

Here’s where I’m going to risk sounding like an angry breast cancer survivor: We are so, so far from “taking control” of breast cancer. If we had control of this disease, then Jolie would not have had to cut off her breasts.

After decades of research, and billions of dollars spent, and jillions of pink-ribboned marchers, we still don’t understand breast cancer, or any other cancer. We’re not exactly sure how to prevent it, and we certainly don’t know how to cure it consistently. Each year, some 458,000 women and men around the world die of breast cancer. The situation is similar for many other cancers.

It’s great if you can “take control” of your cancer. Alas, my experience of cancer, and that of most patients and survivors that I know, is that having your cells and genes go haywire is an object lesson in lack of control. Our understanding of cancer is still tragically incomplete. Our treatments are still, frankly, rather barbaric. And the outcomes of treatment are still rather random.

So, bravo Angelina Jolie for being so brave and so open about your situation. I hope that someday the rest of us will be able to take control like you did. But that day has yet to come.

By Heather Millar

In my experience, sex is the big elephant in the room for cancer patients. I’ve written about this before, here and here. But in the year since I wrote those posts, I’ve begun to realize what a huge problem this is for patients and survivors alike. I’ve heard about it in support groups, I see people complain about it on on-line bulletin boards, like those at breastcancer.org.

People feel angry, ripped off. Cancer maims parts of your body, they cry. It saps your energy. It makes you miserable. All this, and it takes one of life’s great pleasures as well?

Full disclosure: My husband and I have struggled with how to be intimate after cancer. Right after my surgeries, and during chemo and radiation, he was afraid to touch me. In the couple of years since then, we’ve fought against fatigue, and schedules, and the realization that after 23 happy years of marriage, we need to reinvent the most private part of our relationship. We’re making headway, but it’s a work in progress.

We’re feeling our way, ha, ha. Part of the problem is that there’s so little advice out there, so little data on what cancer patients should do to spice it up, and to remain connected physically.

This is not a trivial problem. When might a person most need to feel loved and supported? During cancer treatment and after! Marriages and relationships are a great source of that love and support. And, in my humble opinion, sex is the glue that holds most marriages and relationships together. It’s what makes me accept that my husband will never check his pockets before putting his pants in the hamper. It’s what makes him accept that I will never update my computer or phone software unless he does it for me.

Luckily, it seems that there’s a growing scientific interest in the problem of what scientists call “sexual dysfunction” in cancer patients and survivors. Yesterday, I talked with Dr. Shari Goldfarb, a medical oncologist at Memorial Sloan Kettering Cancer Center in Manhattan. Dr. Goldfarb is part of the growing Female Sexual Medicine and Women’s Health Program there. It will be the counterpoint to a similar program for men, who most commonly struggle with these problems after prostate cancer treatment.

“We are definitely causing sexual dysfunction in women,” Dr. Goldfarb, who specializes in breast cancer, told me. “We need to understand what we’re doing and how we can fix it.

“Sex is important across the life span. For most patients, the problems have many causes. It may be medications. It may have physical and psychological components. We need to address all these things.”

So far, Dr. Goldfarb and her team have conducted a survey of 500 women, asking them to list their sexual complaints during and after treatment. She’s also looking into treatments for vaginal dryness, which is a common side effect of hormonal treatments after breast cancer. They’re following patients for five years to see when the problems begin, and when and how clinicians might intervene to help. They’re starting to look at these problems in other cancers, too.

“We’re still sort of learning,” Dr. Goldfarb says. “But there’s a growing awareness in our field. Part of it, is that doctors didn’t know what to do about this problem, so they avoided it. That’s changing.”

Dr. Goldfarb says that other cancer centers are starting to consider, or to found, programs like Sloan-Kettering’s.

As a cancer patient, all I can say is one word, “Hallelujah.”

Expect to see more in this space, as Dr. Goldfarb’s team publishes findings, and as other research groups contribute to this important research.

Has sex been a challenge for you and your partner during or after treatment? What worked for you? What didn’t? What would you like to know?

By Heather Millar

As I’ve mentioned before, I’ve been cooking for an old family friend and neighbor who has metastatic lung cancer. I can’t remember when he and his partner, both in their mid-80s, weren’t part of our lives. Yet they’re also private. They’re not the kind of guys who are going to tell you their greatest fears. They don’t gossip. They don’t complain.

I know that he just started what I think is his third chemo regimen. I hate the idea that he may spend the rest of his life either going through chemo or waiting for the next round of poisons to begin. Normally, I’m the sort who just asks questions, but something keeps me from prying into the details. I can sense that it wouldn’t be completely welcome: they would probably answer, but I’m not sure they would be comfortable doing so.

Yet I can tell things are getting tougher. Now, when the ill partner does his daily walk with the dog, his partner follows them in their vintage 1960 Volkswagen Beetle, just in case he feels too weak to finish his usual route. When I brought over a care package about a week ago, the healthy partner said the patient hadn’t eaten in a day or two. That says something, since the one who has lung cancer was once an amazing cook.

The next day, on our front stoop, I found a paper bag with emptied, clean plastic containers inside. There was a note: “Amazing!” the healthy partner had written. “He said he wasn’t hungry UNTIL he tasted your meatloaf and mashed potatoes. He ate more than he has in a week!”  I’d used the recipe from Cooks Illustrated, a resource that can make you look like a genius even with basics like meatloaf or mac-and-cheese.

It felt so good to help this old friend—the man who’d first exposed me to gourmet cooking—enjoy a meal. When my father was dying of lung cancer, I think he just gave up when he realized that he couldn’t eat any longer. My Dad always cooked and ate with gusto, giving that up was just the last straw for him.

So I’ve made it kind of a private challenge to try to tempt this family friend with various dishes. Comfort food seems to be winning out: Homemade applesauce (easy: peel, core and coarsely cut four apples, add 1 tsp cinnamon, ¼  to ½ cup sugar, cup of water, microwave for 10 minutes, mash, cool), beef stew, berry muffins, fried chicken and biscuits—all these have inspired enthusiastic notes.

Obviously, if you’re overcome with nausea from cancer treatment, the last thing you want to do is eat. If everything you put in your mouth tastes metallic, even comfort food doesn’t hold much appeal. If you’re struggling with mouth sores so bad that they make breathing painful, who wants to eat?

But many cancer patients find at least a few foods they can enjoy: When I was in active treatment, I loved spicy things. I usually had a falafel sandwich or spicy Asian noodles during my chemo infusions. (I found I could eat during chemo, when all the steroids and nausea meds were in full force; just not after chemo.) One of my mother’s caregivers had breast cancer last year, and I think she survived almost entirely on potato chips, the salt covered up the metal taste that ruined most foods for her. Even after his cancer had metastasized to his stomach and he really couldn’t eat, my Dad loved Welch’s grape juice in all its purple, stain-y glory.

Eating is such a basic pleasure, such a basic need. Eating well can actually help you marshal the strength to get through treatment. You can find pleasure in a good meal when you’re too weak to do anything else. It’s worth fighting to enjoy food, whatever the challenges. You can find some tips for healthy eating during chemo on WebMD, and also here, here, and here.

Do you have favorite treats or recipes that you enjoyed during cancer treatment? Share them here!

By Heather Millar

Should healthy women take a pill to prevent breast cancer? Last week, a government-sponsored panel of experts said that perhaps women with a higher risk of breast cancer should … but only if their risk of blood clots and stroke is low.

The drugs in question are Tamoxifen and Raloxifene, both drugs that have been prescribed for years to women whose risk of breast cancer is higher than normal. These might be women who have a BRCA1 or BRCA2 gene mutation that predisposes them to breast cancer, women who have a “first degree relative” (mother, sister) who had cancer, women who’ve had pre-cancerous breast tumors. But there are several scales and systems for assessing risk. More on that later.

Both drugs work by blocking the body’s use of estrogen. This foils breast cancers that feed on estrogen like a toddler on candy, as 75 percent of breast cancers do.

After reviewing the most recent scientific literature, the United States Preventive Services Task Force (USPSTF)—a group of epidemiologists, public health officials, and physicians charged with reviewing research and making recommendations on preventive care—published a study that says these drugs can reduce the risk of breast cancer and that doctors should recommend them to their high-risk patients.

This is baby-step trying to encourage more prescribing of these drugs to appropriate women. It adds to a 2002 recommendation saying that women should “talk with their physicians” about taking these drugs to prevent breast cancer. But women didn’t seem to listen. The phrase in the most recent pronouncement about using these drugs for “chemoprevention” is that “use is low.” So I guess the hope is that strengthening the language will get more docs and women to discuss this option for high-risk women.

With all the pink ribbon hand-wringing about breast cancer (I can be flip because I’m a breast cancer survivor), you’d think there’d be a lot of coverage of this notion of encouraging high-risk women to take a pill to prevent one of the most common cancers to afflict humanity. But there was surprisingly little media reaction, perhaps because the bombings in Boston happened two days after the study went live: There was an excellent piece in The New York Times and a couple other newspapers, a bit of coverage in a few trade journals and on women-centered websites and there it mostly ended.

I wonder whether this USPSTF panel despaired or rejoiced about the relative lack of attention. It seems that almost every time a group of USPSTF scientists makes a pronouncement, there ensues great public gnashing of teeth and comment thread flame-throwing. In the last few years, they’ve been trashed for recommending that women don’t start mammograms until 50 (rather than 40), that men don’t really need prostate-specific antigen (PSA) testing for prostate cancer, that there’s not sufficient evidence to prove that lung cancer screening works.

All cancer issues seem to be fraught, both intellectually and emotionally. Do docs buy bulletproof vests, earplugs and extra therapy sessions when they agree to serve on a USPSTF panel?

The recent Tamoxifen/Raloxifene pronouncement is a “draft recommendation.” That means it’s not final, and the public can comment until May 13. The Times comment thread ranged from outraged (“Why isn’t there a cure yet?” “Why so much breast cancer?”) to sometimes analytical (taking issue with statistics, or questioning our nation’s approach to prevention) to sometimes paranoid (“bras cause cancer” or “the docs and insurance companies just want us to take more pills so that they can get rich”—never mind that Tamoxifen is old-ish, extensively-studied and not patent-protected, there is no “Sam Walton of Tamoxifen.”). So I’m guessing the USPSTF is going to get an earful.

So exactly how did these scientists come to their conclusion? They analyzed about 20 new studies from MEDLINE and Cochrane databases from 2007 to 2012, and found several new, large placebo-controlled studies that strengthened the case for high-risk women to consider taking these medications. Women who took tamoxifen and raloxifene had a 7.5% risk of developing breast cancer over a 10-year period, compared with a 21.3% risk for women who took nothing.  Both drugs reduced the incidence of invasive breast cancer, though tamoxifen caused more problems like strokes, a small risk of endometrial (uterine) cancer and cataracts.

But there are a couple problems:

• First, even the leader of the  USPSTF panel admitted to a reporter for Blue Cross Blue Shield’s HealthDay news service [full disclosure: this is my insurance company] that “the tricky part is finding the right candidate.”  The National Cancer Institute recommends the Gail model to help doctors make a risk assessment, the original of its type. But there are others: a Breast Cancer Quiz developed by the Harvard Center for Cancer Prevention, a Breast Cancer Risk Calculator and Breast Cancer Prevention’s Risk Tool.  The USPSTF reviewed 13 different risk assessment models. And that’s before we even get into the more complicated matters of whether you’re at risks for strokes and so on, or whether you might be at greater risk because of your race.

• Second, these drugs have no joke side effects. Tamoxifen seems to increase the risk of uterine cancer slightly (4 cases per 1000 women) and stroke (4 cases per 1,000). Raloxifene seems to add the risk of stroke (7 cases per 1,000).

Granted, these risks are all less than 1 percent, (1 percent would equal 10 cases per 1,000). But you’re talking about taking healthy women and then adding a risk of stroke or uterine cancer to prevent an, admittedly greater, risk of breast cancer.

I understand that, mathematically, it makes sense to take something with a small risk of something bad to avoid an even greater risk of something bad. But even understanding that, I’m still not sure I’d do it. What if you were a woman who might be at high risk but were actually never going to get breast cancer at all? Would you let fear goad you into taking a drug that might result in your getting another serious cancer, i.e. uterine cancer? Or cataracts? Or a stroke?

Apparently, according to the recent report, about 70 percent of patients will take these drugs at the doses their docs recommend. But you can see why physicians are having trouble convincing the remaining 30 percent of patients.

This is what journalists call “burying the lead:” I take Tamoxifen. I have taken it for almost two years, and will take it for at least three more years, perhaps eight more. But I’ve HAD breast cancer. I am at a much, much greater risk that someone who’s never had breast cancer. I don’t need a risk assessment tool to know that. I had early stage, but very aggressive cancer. For me, the benefits outweigh the icky risks. But for someone healthy? I get that there’s evidence to recommend it. Yet still, I struggle with the notion.

I also have a daughter. She’s 12. Because of my cancer, she’d be considered “high-risk” by most standards. When she turns 35 or 40, do I want her to start taking drugs like Tamoxifen or Raloxifene if she’s healthy in other respects? I really, really struggle with that. Right now, a woman has a 12 percent risk of getting breast cancer. Taking a preventative drug might knock that down to a 10 percent risk, or 9 percent. Would that be worth it? I just don’t know.

Let me tell you about the “minor” side effects of Tamoxifen from a pool of one: me. It makes it impossible to lose weight. I mean, IMPOSSIBLE. It causes hot flashes. It gives me painful cramps in weird places like under my chin, over my ribs, in my fingers. It turns my inner privates all raisin-y, and it grinds my sex drive into the dust. That’s a drag for me, but it’s really a drag for my husband. Thank God he’s understanding and adaptable.

Would I want my daughter to take all that on to knock a couple percentage points off her risk? Obviously, it will be her decision, and yes, Raloxifene does not have such severe side effects. Still, I think I’d advise her against it at this point.

I know the USPSTF is doing the best it can with the data it has. In science, the difference of two or three percentage points is huge. In life, I think it’s less so.  I’d like to wait for better odds before I’d push all those side effects onto my daughter.

And I do wish we’d expand our idea of “prevention” beyond scans and drugs. Diet, exercise, lifestyle, and the limiting of environmental toxins and excessive stress should all be much bigger parts of the mix.

What do you think? Would take these drugs? Or not? Do you think the U.S. is getting cancer prevention right? Or not?

By Richard C. Frank, MD

A patient of mine whom I had become very close to was dying of cancer. I visited her at home because she was too weak to come to the office. She had stopped eating days before and was only taking sips of water now. It was painful to see the devastating effects cancer had wrought on her face and body. She smiled upon seeing me, I embraced her and sat down; she wanted to talk. She expressed her gratitude for her wonderful family, comfortable home, excellent medical insurance and all the wonderful medical professionals who cared for her along the way. She felt at peace, her children were married with their own children and were on a good course. She did worry about her husband. But it had been a four year battle with pancreatic cancer and she was done. “I’ve been holding on for everyone else and for me. But I want to let go now. It’s time. They just have to understand.” I felt privileged to be in her presence at that moment, to support her coming to terms with her impending death. Over the next several days she gathered her husband and children, then siblings and close friends and let them all know she was saying good-bye. Not long afterward she passed away.

I attend regular multi-disciplinary team meetings with a visiting nurse and hospice agency in my community. I hear the social workers, nurses and chaplains talk often about whether or not a person who is dying is “letting go.” “They can’t let go.” “Their children won’t let them let go.” “The doctor keeps giving chemo, he won’t let go.” “They need to hear that it’s ok to let go.” “They finally let go and were at peace.”

These caring professionals want their dying patients to die with dignity and grace and they feel that letting go is essential to accomplishing this. But it is scary to let go. It means admitting powerlessness and that the outcome is not in your hands.  It takes bravery to face the end of life, the disconnection from loved ones and from this world. And many fear the unknown of what comes after death. But resistance until the end does not lead to a sense of peace. We know that people with a strong support system and those with strong religious beliefs do face death with more inner peace and less turmoil.

I have seen this at work very often in my own practice of oncology. I have become aware of the need to tell patients that it is ok to let go. The most common situations include: When a patient has reached the point that there is no more that can be done to battle their cancer; when there are more treatments that could be given but none that have a very good chance of meaningfully prolonging their life or improving the quality of their lives; when the patient asks if it is alright if they stop trying and just let go and let nature take its course. In these situations, I feel that it is my role as the patient’s oncologist to support them in the choices that are right for them and to let them know when more treatment will likely do more harm than any good.

As a society, we have trouble letting go as we near the end of life. To some it means giving up all hope which they feel is unacceptable. But at some point hope has to shift to having a peaceful ending; hope is never lost. Sometimes not all family members can accept a patient’s desire to stop treatment, enroll in a hospice program and let go. Too many cancer patients in our society are in hospice for fewer than three days and many more for less than a week. But this is not nearly enough time to say what needs to be said and do what needs to be done. It takes time to achieve a sense of peace with the events that are unfolding beyond anyone’s control. It takes time to adequately express the love and grief that all involved are feeling so that there are no regrets in the future.

What are your thoughts and experiences with letting go?