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.

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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.

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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.

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A New Gig

I’m happy to announce that I’m now going to be blogging for WebMD.

Here, at “My Left Breast,” I’ll continue to write about breast cancer: my experience, of course, as well as the history, science, culture and ethics of the pink ribbon disease.

Starting tomorrow, I’ll also blog about the cancer patient experience more generally for the WebMD Cancer Realties blog. The WebMD blog features posts from an oncologist, a nurse, a caregiver and a patient, that is, me.

You can find the WebMD link here. There’s also a link to the right of this post, under “Blogroll.” My bio and profile are there now. My first post will go live tomorrow.

Hope to see you in both places!

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Caution: Eating may be bad for your health

My husband jokes that I’ve never forgotten a meal. He also teases me because as soon as I’ve finished one meal, a big burger for a Saturday lunch say, I’m already planning the next, “What do you want for dinner tonight?” I love to cook. I love to eat.

Thus, it always makes me a little sad, in my reporting travels, when I come across studies that show that the process of taking in food, and breaking it down into chemicals our bodies can use, seems to play a huge role in aging and disease. Scientists call the main culprit “oxidation.” That’s what happens when oxygen molecules interact with other substances. That’s why so many health foods tout the “anti-oxidants” in their ingredients.

Oxidation is what’s happening when a nail rusts, oxygen is interacting with the iron in the nail. It’s also what happens when fragments of this and that break off and interact with oxygen in your cells. It makes me smile to think that aging and disease may be linked to the biological equivalent of rusting. We’re all like the Tin Man from the Wizard of Oz!

Apparently, eating takes its toll over decades. I suspect that’s why many studies have shown that eating the bare minimum can slow aging and stave off disease.

We can now add another wrinkle to this calorie reduction story. A study just out in the journal “Science Translational Medicine” has shown that mice who fast for two days prior to receiving chemotherapy not only slow the progress of their cancer, they may also enhance the effectiveness of the chemo.

Drat. One more knock against eating. But I’m still wondering, “What shall I make for dinner tonight?”

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I’m not really worried, but

So last week, I go into the UCSF Cancer Center for my 6-month oncology check-up. I’ve really been trying to NOT worry about these appointments. You’ve got to do the checkups. Otherwise, why go through all that chemotherapy and radiation and surgery?

As the Russian technician compresses my left breast in the mammogram machine, I suck in my breath. Wow, it doesn’t usually hurt this much. The technician is very concerned and personable. Gentle, though, she is not. “Here move your chest against the machine. Turn your head. I’m going to go deep. Very tight. Now relax your shoulders! Don’t move!” Hah. Easy for her to say!

I’m guessing it’s a cultural thing. My impression when I’ve traveled through Russia is that people there expect life to be difficult. What, you thought getting a mammogram was supposed to be pleasant? Do you want us to find any cancer that might be there, or not? I’m sorry it hurts, but what did you expect? A massage?

After the mammogram, I walk across the hall to the Breast Care Center. There, my oncology nurse practitioner, Tara, tells that I’m looking good. She reassures me when I say I’m disappointed that the UC scale doesn’t register as much weight loss as my home scale. She says that the wine at night may be triggering my hot flashes and interrupting my sleep. That may be why I’ve been feeling so tired. I guess that’s a compelling reason to cut down on the booze. Buh-BYE nightcaps! Becoming a mostly teetotaler will make the weight come off faster, I know, I’ve just been too lazy to give up this one last vice.

Then Tara gestures to the exam table. I assume the position: sitting up, exam gown open, left hand resting on Tara’s shoulder so she can examine my breast while I’m relaxed. She kneads and pushes around. Everything seems fine.

But what about this little sore, right at the place where an underwire bra would make contact? I ask Tara about it. It was there when I have my radiation check-up a month earlier. I’ve been putting antibiotic salve and other things on it. It’s still there.

Tara’s eyes narrow. “I don’t like it,” she says. “I don’t like anything on your breast. We should check it out.”

She goes to look for another nurse practitioner, then bumps into my radiation oncologist, Dr. Fowble. Tara and Dr. Fowble come in together, look at the spot. It’s probably nothing, they say. It might be a bit of the psoriasis you have on your scalp. It might be irritation from a bra. But still, let’s get you a dermatologist, they say.

“I just don’t like anything on your breast,” Tara says again.

So I walk out of the Breast Care Center with a mostly clean bill of health, and a referral to the head of the UC Dermatology department.

It’s probably nothing, I’m sure. I mean, how often does breast cancer metastasize to skin? Actually, I have no earthly idea. But I agree we should check it out. It would be pretty dumb to spend more than a year and half a million dollars saving my life and then NOT check it out.

I’m not worried. Well, not very much.

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You can lead a horse to water

I’ll never forget the first days and weeks after I was diagnosed with breast cancer. The outpouring of friends and family, and friends of friends and family, just blow me away.

But the breast cancer survivors are incredible: I email a dear friend about my diagnosis. Within five minutes, his sister in Los Angeles, who’d survived a double mastectomy and chemo, is calling. Other friends who’d had breast cancer answer my questions and offer to do, whatever, whenever. Just call. Just let us know.

I will always be in the debt of these women who answered my questions, who rushed in when I needed it and held back when they saw I just couldn’t handle any more.

So now, I’m the breast cancer survivor and breast cancer has reached into my household yet again. As I wrote in my last post, one of my bedridden mother’s caregivers has breast cancer. I just found out this morning that she has had her mastectomy. She’s in the hospital now. I figured something was up because her older sister has been covering her shifts for a couple days.

When I learn of her diagnosis, I want to shower this woman and her sister, my mother’s other caregiver, with information. I write down lists. I give them booklets. I ask them questions. I urge them to get a second opinion and to be aggressive with their insurance company. These women are wonderful; I don’t what we would do without them. I want them to have the best. I want them to live long and prosper.

I’m still not sure what sort of breast cancer we’re talking about. Estrogen reactive? Progesterone reactive? Her2 positive? Inflammatory? Triple negative? Invasive or in situ? Stage I, II, or III? Who knows!

The older sister tells me this morning that she doesn’t know if there are any lymph nodes involved. I smile and nod, but I want to scream when I hear this. They’re supposed to do the pathology on the lymph nodes DURING surgery. That way, they’ll know if they need to take out more nodes. This has huge implications for how her case will go. The more lymph nodes are involved, the more serious the case. That will determine what sort of chemo she will have, and whether radiation might also be indicated.

“Well,” the healthy sister says. “We just have to wait for the doctors. The surgeon and the pathologist will have to put their heads together. They will let us know when they are ready.”

I smile again. And again, I want to scream, “You need to take charge! You need to ask questions! Why don’t you know any details? Why won’t you tell me?”

But I don’t. I know that culture, and economics and a thousand other things mean that it will go how it will go. I cannot control their reaction.

The toughest thing about being a survivor is that you can’t make another woman face her breast cancer in the way that you did. You just open the door. Call me. Whatever I can do.

Or not.

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