So Alone.

Our block in San Francisco could start its own cancer support group! Within 100 yards of sidewalk, we’ve got two breast cancer survivors, one lung cancer patient and one bile duct cancer patient.

A couple days ago, I noticed all three of the other cancer patients chatting on the sidewalk. After a few minutes, one of them came up to me. He’s a retired dentist and used to be friendly with my Dad before he died of lung cancer almost 16 years ago. We’ve never actually spoken, but he came up to me that day with a smile, and said, “We have something in common.”

“Yes, I’ve heard that you have cancer,” I said. “How are you?”

“Not good,” he said in a very tired voice. “They only gave me a few months to live, but it’s been three years. My cancer is very rare, but I went back to China to get both traditional Chinese medicine treatment, and modern treatment.”

We chatted for about half an hour. He’s never been in a support group. He doesn’t really have many people to talk to about his disease. As he continued on his daily walk, I noticed how gingerly he stepped down the sidewalk, how washed out he seemed. And yet, he must have steel within to survive so long.

How different it is to have had an obscenely common cancer. Here we are in the Pink Month of Breast Cancer Awareness and everyone is walking, running, signing petitions and making symbolic gestures of support. The teenage daughter of an old friend shaved her head in solidarity this month. As cynical as I am about pink ribbons, I think that’s pretty cool.

But no one is running for bile duct cancer, this neighbor’s affliction. I can’t imagine anything more isolating than having a rare form of cancer: Little research, no community, only your own strength to sustain you.

I suggested he look for an on-line community, but he said most people with his kind of cancer don’t live more than a year. Not much time to link up on the Internet.

How alone my neighbor is. I hope we talk again soon.

The Hardest Idea: Less is More

When I was first diagnosed, my response—other than to turn the whole cancer nightmare into a research project—was to cry, “Nuke it! Nuke it! Nuke It!”

I had the Valkyrie response: “Kill the wabbit! Destroy that cancer! Do everything!”

I wanted, want, to survive for my kid, my husband, my pets, my family, my friends, and yes, myself.

And yet, on the other side of what I hope is my first and last go-round with cancer treatment, I have a more mature appreciation for all the side effects that cancer treatment inflicts. The mouthsores and chemobrain are gone, but I still have less energy than I used to have. I need more sleep, 9 or 10 hours a night, to function effectively. I’m done by 9 p.m. I know that both the Herceptin and the radiation that I received may lead to heart damage down the line (though my echocardiograms have been good so far). Every day, I have cramps caused by the Tamoxifen that blocks my body’s ability to use the estrogen that was candy for my tumor.

One of the things that I think patients find the most frustrating is that, while we’ve come a long way, much of our treatment decision process comes down to the culture of our hospital and our doctors, and our personality, our tolerance of risk. It’s all an educated guess. There’s data, sure, but not nearly enough.

So it was interesting to note a “Science Daily” story today that suggests that, in some cases, less may be more when it comes to breast cancer.

Here is a summary of the main points, from research at the Seattle Cancer Care Alliance:

• Spare the chemo but not the cancer.
Thanks to the Oncotype DX test, which analyzes a panel of genes linked to tumor recurrence, nearly 50 percent of women with early stage, estrogen-reactive cancer can skip the chemo and go straight to hormone therapy. Alas, my Oncotype score was too high to get a pass, but I’m happy for the half of my fellow pink sisters who avoided chemo.

• Use PARP Inhibitors for triple negative cancer.
For the 15 to 18 percent of women who have “triple negative” disease—that is, it doesn’t react to estrogen or progesterone and it doesn’t express the Her-2 protein—there may be hope for treatment with PARP Inhibitors. These drugs prevent the tumor DNA from repairing itself, leading to cell death.

• Spare the radiation but not the cancer.
If the cancer recurs in my left breast, the standard treatment would be a mastectomy, because I’ve reached my lifetime limit of radiation in that breast. SCCA is experiment with another solution: a second lumpectomy followed by five days of radiation delivered only to the tumor bed.

• Spare the lymph nodes but not the cancer.
Today, if they find cancer cells in the lymph nodes under your arm, they usually remove a lot of them. This can lead to painful lymphedema, or swelling of the arm. But SCCA did a study that showed that early-stage patients who had only only one or two positive lymph nodes removed did just as well five years out as those patients who had many nodes removed.

If I ever face a recurrence, it will probably be difficult for me to resist responding aggressively. And yet, what’s the point in using a sledgehammer that knocks me out? What do you think?

Eat Junk as a Kid? That might increase your breast cancer risk

Indiscretions of youth…

Every time I turn around, there seems to be another study showing that diet and lifestyle influence your risk of dread diseases. We have known that about heart disease for a while, and to that we can now add: diabetes, Alzheimer’s, liver disease, kidney disease, metabolic syndrome and a spectrum of cancers, including, of course, breast cancer.

Every time one of these studies comes out, it’s greeted with a chorus of “Gee, whiz!” I’ve long wondered why everyone finds these results at all surprising. I mean, garbage in, garbage out, right?

This week, another such study came out in the Proceedings of the National Academy of Sciences. This time, there’s an interesting wrinkle: What you eat as a kid may influence your risk of breast cancer later in life.

A team lead by scientists at University of California at Davis tested mice by feeding them a certain kind of “conjugated fatty acid” (the geek name for polyunsaturated fat, those found in plant oils) that has been linked to metabolic syndrome, diabetes and other problems of obesity.

The thought behind the study: Early breast development heightens breast cancer risk. Could dietary fat influence breast development? Apparently, epidemiological studies—number crunching Centers for Disease Control statistics and other data—have suggested this link. But no one had shown this hunch to be true in a biological system, i.e. a mouse or a human.

So what did the UC Davis team find? Mice fed these special fats did indeed start to develop breasts and, here’s the kicker: They did so even if their ovaries had been removed! Why is this important? Well, breast growth and puberty have long been thought to start up in reaction to an increase in estrogen produced by the ovaries. Now, this study seems to suggest, it turns out that just eating a lot of fat can kick start breast development, increasing breast cancer risk by increasing the amount of time that breasts are on the scene.

Apparently, according to coverage in the journal Oncology, this is the first direct evidence that dietary fat can act like estrogen, and lead to breast development.

There’s nothing I can do about the Fritos corn chips and Hostess fruit pies that I consumed as a kid, but now I’ve got one more reason to hold my ground during food battles with my own daughter.

Pretty Bras After Surgery? Wish I’d Known…

File this under the “wish I’d known” category:

Hy husband Pete has a colleague whose wife has just been diagnosed with breast cancer. She sent me an email yesterday, or rather, her husband forwarded an email to me. She’s not feeling too well.

But here’s the thing: She alerted me to the fact that Nordstrom, the Seattle-based luxury department store known for its service, has a free, in-store prosthesis program. You an make an appointment with a prosthesis fitter who will sew a pocket into any bra that strikes your fancy. She’ll do the same with a post-surgery camisole, or enhancer/equalizer post-mastectomy. She’ll help you navigate the strange world of “breast forms.”

You can see a video about the service here:

I am the most boring lingerie person in the world. I’ve worn the same two Warner’s bras and the same briefs for decades. Well, not the same ones, but the same styles! In the run-up to my lumpectomy, I completely forgot about the need for a post-surgery bra. If memory serves, I sent Pete down to the hospital gift shop to pick something up as I was being wheeled into the OR.

It was comfortable. Pretty? Um, no. It looked like something my great-grandmother would have worn 100 years ago before Lycra and elastic were invented. The post-surgery weeks are not exactly a time when you’re feeling sexy, but a more attractive bra would have made me feel a little better, especially since it took me two months to recover.

This does not have to be your fate. Check out Nordstrom’s service. It looks pretty sweet.

Not so Fast

You’d have had to be mostly asleep during the last couple days to miss the news that a big breast cancer study has come out of the National Institutes of Health’s Cancer Genome Atlas Project, a government effort that has already analyzed the genomes of certain ovarian, colorectal, lung, and brain cancers.

The traditional press and the blogosphere have been all a-twitter about how the several hundred researchers involved in the breast cancer study analyzed the genome of the breast cancer tumors from about 800 women and that they’ve “identified four genetically distinct types of breast cancer.”

I wondered about that when I first heard it. When I was first diagnosed—thrown into the deep end of the pool—that was one of the first things that I learned: There are four basic types of breast cancer:
1) Estrogen-reactive (me).
2) Progesterone-reactive (not me).
3) Her-2 positive (me).
4) “None of the above” Formally known as “triple negative” (not me).

As I followed the news coverage, it seemed to me that the big deal was not that they’d “discovered” four new types of breast cancer, but that they’d been able to analyze those four types in stunning depth and that that has revealed some surprises. For instance, they found that some breast cancers seem to have the same genetic mutations as ovarian cancers, opening up the possibility that ovarian cancer drugs might be useful in breast cancer cases. They also identified many, many genetic targets that might lead—someday—to better drugs.

Then, today, I came across a post from MIT’s Knight Science Journalism center that echoed the questions that had been rolling around in my head.

We’ve known since about 2006 that there are four broad sub-types of breast cancer; we just haven’t analyzed the full genomes of those subtypes until now.

The more I follow cancer news, the more it seems that we’re constantly setting ourselves up for disappointment. “Fill-in-the-blank just discovered! Cancer cure on horizon!” We want the cure so badly that we go nuts over every step forward.

Alas, it’s unlikely that there will ever be a single “cure.” It’s more likely that we’ll find a constellation of different targets for drugs, and different constellations for each kind of cancer, and for each subtype of cancer.

This new study is amazing work. It will undoubtedly lead to more research, and, in a few years, new drugs. But it’s not the end to the fight against breast cancer, just one step toward that goal.

Help Wanted: Medical Planning Project

The days and weeks just after diagnosis can be some of the most confusing and terrifying. There’s so much to learn, so many feelings, so many reactions, so many appointments!

You don’t have to spend much time on cancer websites and message boards to learn that it’s important to bring someone along with you to those myriad medical meetings and procedures.

Alas, there is far, far less help out there when it comes to planning for those medical appointments. How do you decide what’s most important to you as you face treatment? What questions do you want to ask your doctor? How do you identify the key decision points?

At UCSF, I was blessed to be able to take advantage of the pioneering Breast Cancer Decision Services program. The medical center had a recent pre-med graduate call me to discuss my priorities and concerns. She came to my major appointments, taped them, and then provided me with a CD recording and a summary of the information discussed and the decisions that I needed to make. I don’t know what I would have done without Decision Services, and I don’t know why this sort of service isn’t standard.

But it’s not.

Studies are just beginning to show that patients who are more involved in medical decision-making have better outcomes, both medically and psychologically, according to Jeff Belkora, Ph.D, the director of UCSF’s Decision Services. Belkora and the leaders of the UCSF program are helping to start a similar program at Dartmouth University in New Hampshire. The Informed Medical Decision Making Foundation
is funding shared decision making initiatives in Maine, Massachusetts, Iowa, Oregon and several other states. The foundation’s website also offers decision aids for various conditions, including breast cancer.

Yet this sort of doctor-patient-facilitator partnership remains far from common. A couple of Stanford University grads are working to solve this problem by creating an on-line tool that guides breast cancer patients and helps them to prepare for major medical appointments, identifying their priorities and their questions. The program, AVVA, is still in development. But breast cancer patients in the San Francisco and Boston areas can sign up to help work the kinks out of the program so that it can be released to the general public. Just send an email to patients@avvahealth.com.

If I were still in active treatment, and if I wasn’t a UCSF patient, I’d do it in a heartbeat.

Freckles are awesome

Today, I go to the UCSF dermatology department to check out this itchy spot on my left breast, the one that’s been there for more than two months, the one the oncology NP wants me to check out, just to be safe.

All week leading up to this appointment, I feel an overwhelming sense of foreboding and anxiety. I find myself so freaked that I fall off the “no drinks during the week” wagon and have a cognac nightcap once or twice just to stop the spiraling panic so that I can sink into sleep’s oblivion. Earlier in the week, I think that I’m just stressing about the usual things: career, kids, the fact that there’s never an excess of money.

Then last night, I get honest. I am scared, scared, SCARED of metastasis. I’m just feeling that life is getting back to normal, just beginning to feel strong again, just finding a new work rhythm. I’m terrified that this little spot, this probably insignificant little spot may be a skin melanoma something that will suck me back into the exhausting, scary halls of Cancerland.

Late last night, talking to my husband Pete about it, the fear feels huge. It is a cold thing. Perhaps because I’ve allowed myself to relax in the last few month, I feel this fear more sharply than I felt it while in active treatment. Pete hugs me and tells me. “It’s OK, go get a small cognac, or you’ll never get to sleep.” Drat that all those sleeping pills I had during chemo are gone.

I oversleep and cycle like a maniac to the dermatologist’s office. He’s very tall, and handsome. He looks at my spot and feels it. Then he puts on magnifying glasses and looks at it more closely. “Don’t worry,” he says. “It’s a lentigo.”

Apparently, that’s a fancy name for a big freckle. It can get irritated and stay around for a while. I can opt to have it frozen off with liquid nitrogen or I can do nothing.

Thanks, I say, I’ve had enough unpleasant medical procedures for a lifetime. I’ll skip the liquid nitrogen. It’s not like I’m going to be posing for Playboy with my lumpectomy-ed left breast. The freckle can stay as long as it’s not cancer.

As I cycle home, the sun seems brighter, the spring flowers more beautiful, the bird song more melodic. Big exhale.

It’s even harder than we thought

Today, the New England Journal of Medicine publishes a paper that shows that genetic mutations—the garbled DNA code that can kill you—often differs within the same cancer tumor. This is a huge deal.

Why?

Because dozens, if not hundreds, of academic scientists and start up companies and big pharmaceutical firms are working furiously to develop anti-cancer treatments based on genetics: drugs that target genes that help tumors to survive and grow, or tests that can identify which particular kind of genetic chaos distinguishes your cancer, so that they can tailor your regimen to your cancer’s patterns.

Genetic testing is the reason doctors advised me to do chemo and radiation after surgery, even though my tumor was less than a centimeter in diameter: Apparently, my cancer’s genetics were nasty. The fact that doctors could parse this out has always made me feel a little safer. I was amazed when I first learned that my cancer had its own genetics, separate from my normal cells. Now, I’m not sure whether to feel safe or scared. What if my “tailored treatment” only zapped part of my cancer?

Cancer genetics is now oncology’s great white hope, just as chemotherapy was in the 1950s and 1960s, and radical surgeries were in the decades before that. About 15 of these genetic drugs are on the market now, hundreds more are in various stages of clinical trials. But these drugs don’t always work, and this new study may explain why.

Every time we think we’ve got a bead on cancer, we seem to find some new way that it’s even more complex than we thought. How could chaos—essentially, that’s what cancer is—not be complex? You can think of the war on cancer as a great battle between the forces of destructive chaos and the forces of genetic order. Maybe this is why cancer captures the public imagination in ways that Parkinson’s disease and diabetes do not. Luke Skywalker where are you?

A team of scientists in the United Kingdom took biopsies from four kidney cancer patients. They took these samples from different parts of the same tumors. Then they ran extensive genetic testing on the samples, far, far more than was done my tumor samples, or is done on any other patient’s. Cancer genetics tests normally cost $5,000 to $10,000. The scientists did tests that cost about 10 times that, analyzing the tumors in far more detail than is usual. And it cost precious time: sequencing one patient’s entire cancer genome took a very big computer four months.

After all that time and expense, the researchers found that not only is each person’s cancer different, but that one tumor can be multifarious. The same cancer gene can have different mutations within the main tumor mass, or they may differ between the primary sites and places where the cancer has metastasized.

While the study is very small, only four patients given the expense, the Associated Press reports that independent experts say they expect to find similar differences in breast, lung and colon cancers. The University of Texas MD Anderson Cancer Center has amassed a genetic database of 4,000 patients. They have found similar discrepancies in 40 percent of the database’s breast cancer patients.

This doesn’t mean that genetic tests or treatments for cancer are a dead end, only that they may not be the one magic key that unlocks cancer’s secrets. I suspect that we will never find that one key, because chaos just isn’t that orderly.

No “discrete” way to say this: Rub-on Nipples

I have a neighbor whom I’ve known for decades. I grew up with her daughters. Until I was diagnosed with breast cancer, I had no idea that she had had a mastectomy, a radical one, in the 1970s. She was unbelievably solicitous when I was going through treatment, always coming over to ask how I was doing. Since I’ve realized that we’re both in the breast cancer sisterhood, I occasionally notice the strap of her prosthetic bra when her shirt or sweater slips slightly. It’s more padded than a normal strap. For decades, I didn’t notice that. It reminds me of magic tricks: If you’re not expecting something, you tend not to see it.

Luckily, things have changed a lot for breast cancer patients since the 1970s. Many women no longer want to fuss with prostheses for decades after mastectomy. Approximately half of mastectomy patients now opt to do some sort of breast reconstruction.

Reconstruction isn’t perfect, of course. It involves several surgeries, and painful “chest expanders,” to expand the pectoral muscles to accommodate the implants. I haven’t had to do this, knock wood, but people tell me it really hurts. I think of it as braces for boobs. Instead of going to the orthodontist every couple weeks to tighten your wires; you go to the plastic surgeon every couple of weeks so he can inject more saline into the expanders.

While you’re dealing with expanders, you look mostly normal in clothes, but you don’t have nipples. There are lots of options these days for recreating nipples: tattoos, 3-D reconstruction. But none of these things can be done until you’re finished with everything else. And that may mean months or years. Not only this, but not all women feel comfortable with the idea of permanent tattoos. Even though sensation is much diminished in reconstructed breasts, getting a tattoo there still sounds ouchy.

So, a fellow member of Bay Area Young Survivors, just alerted me to another option: Rub-On nipples!

Rub-on nipples, six to a pack. Last one to two weeks. Come off with rubbing alcohol.

You can check them out here.

I have no idea how well they work, but it seems something worth checking out if you’re doing reconstruction.

They don’t call anymore…

An envelope arrives from UCSF this morning.

Envelopes are always arriving from UC: Please fill out a survey about your recent visit to clinic X. Please pay that co-pay you forgot to pay on your last visit. Here’s a summary of your latest charges. Don’t forget this month’s events at the Cancer Resource Center! I don’t always open the envelopes. They tend to pile up.

This one looks like any other. For some reason, I open it: “Your recent left breast diagnostic mammography examination showed no features of breast cancer…”

Then, the UC lawyers have the clinic add a lot of caveats: Mammograms don’t show all cancers…be sure to come back in six months…call us in the unlikely event you feel a lump…keep in touch with your doctor.

When I was newly diagnosed, the nurses and nurse practitioners used to call me. Then, it seemed there were so many calls that I began to number them on this blog.

Now, we’re back to letters. The last time I got a letter that was this momentous was the certified letter the radiologist’s office sent me in July 2010 that my biopsy showed CANCER and that, if my internist had not yet told me, I should probably hightail it to a breast cancer center.

I think of the letters as brackets: The first divided my life before cancer from my life with cancer; this latest marks a division between cancer treatment and everything that comes after. Onward.