Thursday, October 31, 2013

Pink is almost over

October is almost over, and that means the incessant onslaught of pink is almost over, as well.

I'm very glad for that.

Sometimes people don't understand why I don't love all the pink. I had breast cancer. Shouldn't I love all the attention being given to "find the cure" and "awareness"?

The reason I don't love the pink is complex. First of all, there is never going to be one cure for breast cancer. Breast cancer is actually many different diseases, and likely if a cure is to be found, it will be many different cures.

Treatments are improving, no doubt, but we still don't know a lot about why women get breast cancer in the first place. Prevention -- real prevention -- is just in its infancy. (See this "helpful" infographic. How many of these things can you really do anything about?)

Also, we don't understand why some women get breast cancer and it spreads (metastasizes) even if it is found early and treated early, and some women get breast cancer and it never spreads. Remember, women don't die from breast cancer tumors in their breasts. They die from metastasis to other parts of the body.

Women are responding to these uncertainties by having mastectomies when they don't need them. This is a crisis in and of itself.

Where do we go from here? Clearly, research needs to continue. Research into prevention, into better detection that differentiates between cancers that should be treated and those that don't need treatment, into better and less toxic treatments, and into treatments to prevent metastasis. We need a reasonable approach to research. This website from the UK shows what a reasonable approach can look like.

We need better laws that force companies to test chemicals used in consumer products so that we aren't exposed daily to chemicals whose effects are unknown. However, we can't expect consumers to protect themselves on their own by careful shopping and avoiding certain products. The laws need to change. 

Most of all, I think we need some common sense. We need to realize that breast cancer isn't simple. It's not a sound bite. It's complicated, and prevention and detection and treatment are complicated, and we have to be okay with that.

And that's all I have to say. For now.



Thursday, October 24, 2013

Side effects

I was walking/running around the indoor track at the JCC recently, and the smell and sounds of the gym reminded me of that horrible period of time when I was having side effects from breast cancer study medications.  It was just about 4 years ago. I would walk the track, trying to use exercise to exorcise whatever it was that was making me feel so awful.

http://healthycollegegirl.files.wordpress.com/2011/01/indoor20track201.jpg
This is what the track (above) and the gym (below) look like
The track was upstairs, and J would play basketball on the courts below. As I walked round and round the track, I felt like I was enveloping him as I peeked down and watched him shoot. I found it very moving in my sickened state.

So this is what happened. After surgery, my oncologist encouraged me to join one or more research studies. Since I decided not to have chemotherapy (which is a whole other story), I became interested in ovarian suppression, which is supposed to reduce the amount of estrogen circulating in your body: a good thing for someone with an estrogen receptive tumor.  Some studies I read indicated that ovarian suppression might even be equivalent to chemo in terms of preventing future cancers.

The study I was interested in was called the TEXT Trial (Tamoxifen and Exemestane Trial): in it, participants would receive monthly shots to cause ovarian suppression (essentially putting subjects into pseudo-menopause) through a drug called triptorelin (which I later discovered is mostly used to treat men with prostate cancer) and either take tamoxifen, which is a typical breast cancer drug given to many women including pre-menopausal women, or an aromatase inhibitor, which is a newer breast cancer drug for women who are post-menopausal.

I signed up for the study, and after completing radiation in June 2009, I started taking tamoxifen, and set up an appointment for my first ovarian suppression shot.

Walking into the oncology department at the BIDMC, I encountered patients in various stages of cancer treatments. There were some who looked fairly normal; others with no hair, or with wigs or hats of various sorts; and some that looked thin and ghostly. When you went to speak to the receptionist, there was a basket of crackers for patients who were nauseous from their treatments. The whole place was sobering.

After some paper work and the inevitable blood drawing, I was escorted back into a remarkably sunny room with many lounge chairs. This was the chemotherapy room. I wasn’t there for chemo, but to receive my ovarian suppression shots. Anne was my nurse, and is one of the cheeriest people I’ve ever met. She would kindly instruct me to drop my pants and would inject me with the triptorelin. It hurt.

Several months of shots went by and I still was having my period as usual. I was anxious for my periods to stop. In retrospect, I’m not sure why I was so anxious to have them stop. I don’t think I realized what menopause – even pseudo-menopause – would be like.

And then my periods stopped. And the hot flashes started.

Around the same time, my oncologist wanted me to get off my tried-and-true anti-depressant Zoloft and onto something that was less likely to interfere with the tamoxifen. (At that time, there was some worry that taking tamoxifen with an SSRI would reduce the effectiveness of the tamoxifen. This has subsequently been disproven, but at the time it was a concern.) I saw a young, pregnant psychiatrist at the BI who switched me to Effexor XR which wasn’t supposed to interfere with the tamoxifen. Unfortunately it didn’t help my depression at all, either.

Once the hot flashes started, they were so strong that they started waking me up at night, and I wasn’t sleeping well. The psychiatrist gave me some sleeping pills. So now I was taking a new antidepressant, tamoxifen, the ovarian suppression shots, and sleeping pills. It was not a good combination.

I started having stomach aches and feeling really lousy. I was sleeping a bit better with the sleeping pills, but not great. Eventually, I started feeling nauseous every morning. I had to take bags of food with me to work – cottage cheese, fruit, crackers – to keep the nausea at bay. And I was losing weight.

By mid-December, I was feeling awful pretty much all the time. I was feeling dizzy and light-headed, nauseous, not sleeping well. I was also having a racing feeling in my chest. I didn’t know what to do.

I decided that I needed to go off the new anti-depressant and back on my old standby. The only problem was that I was on an anti-depressant that was notoriously difficult to get off of. Because it was the extended release version, it would stay in your system for a long time, and if you stopped taking it, you would get little “brain zaps.” I read about them, but only once I tried to go off the medication did I realize what they were really like. I would turn my head and...zap. It really felt like something inside me was going “zap.” It was freaky and weird.

It was Christmas vacation week, and I remember calling up my oncologist, completely distraught.  She agreed to see me the next day, and I remember going to the appointment with A. I tried to explain everything that was happening to me. She was sympathetic, but didn’t really have any good answers. It was so frustrating, and looking back, infuriating.

I kept Googling “tamoxifen” and "triptorelin" and “nausea.” There were some women online reporting this combination of symptoms, but not a lot. I couldn’t figure out why I was having all this nausea.

The psychiatrist I was seeing had gone on maternity leave, so I made an appointment to see a colleague of hers. This woman turned out to be one of my saviors. She knew how to wean me off the Effexor XR – without brain zaps -- using small amounts of regular Effexor at intervals during the day. I finally got off the Effexor and back onto Zoloft. But I still couldn’t sleep without the sleeping pills. And I was still having heart palpitations and nausea. I went to see my regular PCP, who set me up with a heart rate monitor. Everything was within normal limits, which wasn't particularly helpful.

I decided I needed to go off the study and off the ovarian suppression shots, and to take only Zoloft and tamoxifen. But I still needed to get off the sleeping pills. Looking back, I was addicted to them.

I finally started seeing another psychiatrist in my town to try to get some advice and try to heal from all these symptoms. She suggested limiting caffeine (which I hadn’t thought of), and that really helped with the heart palpitations. She also suggested taking smaller and smaller amounts of the sleeping meds to wean myself off them. In the end, once I was off the sleeping pills, I realized that it was the sleeping pills that were making me nauseous. I’d never even considered that.

I also did some acupuncture treatments which really helped with the hot flashes.

By spring, I was completely off the sleeping pills, and no longer receiving the ovarian suppression shots. I was back on the anti-depressant that worked for me, and still taking the tamoxifen.

I felt so much better.

This whole episode, however, still makes me really angry. Somehow with all the different doctors (who weren't talking to each other) and all the different medications, I was left to sort out this whole mess on my own. Everyone knew what medications I was taking, but no one ever said: hmm, maybe the sleeping pills are causing the nausea? Maybe this study medication isn't good for you? Maybe you should get off the trial?

I made it through this episode, and recovered, but it easily could have spiraled into something much worse. This isn't so much about breast cancer per se, but more about how uncoordinated medical care can be, and how easy it is to get caught in the cycle of taking one medicine to help with the side effects of another medicine, and then another, and then another. I hope this sort of thing doesn't happen too often, but I suspect it happens quite a lot.

Thursday, October 17, 2013

Finding out - Part 3

Note: you can read the first part of this story here and the second part here.

My primary care doc insisted that I make an appointment for Thursday so she could give me the results of the breast biopsy. A and I both took off work that day, and we sat around the house, waiting for the appointed hour. The waiting was agonizing.Was it cancer? Was it something else?

Finally the time of the appointment arrived, and we drove the short distance to my PCP's office. We checked in, waited for a bit in the waiting room, and then were brought into an exam room. We sat there, and waited. And waited. And waited. I was becoming more and more nervous.

The doctor came in, and told us that the pathology report wasn't ready yet. She had even asked them for a preliminary report, but they wouldn't give her one. She apologized, but the reality was that we weren't going to find out today.

It was so frustrating. I just wanted to know one way or the other. Not knowing was driving me crazy! We had wasted the entire day waiting. My doctor agreed that I didn't have to come back for the results; that she would call me as soon as she knew.

The day passed, and no phone call. It looked like Friday would be the day I'd find out.

On Friday, both A and I went to work. We just couldn't wait around the house anymore.

Finally, around noon, my doctor called. "It came back positive for breast cancer. It's invasive ductal carcinoma," she said. I'd never heard that term before. "It's what most of my patients have when they have breast cancer." The next step, she told me, was to call the Breast Center at the hospital to schedule an appointment.

I stuck my head into my co-worker's office to tell her what was up. I don't remember exactly what I said, something like "it's not good news." And I packed up and headed home. I don't remember crying, although I'm sure I did cry. I also must have called A on my way home to tell him the news.

When I got home, I called the Breast Center. "Hello, I've just been diagnosed with breast cancer." What a strange, strange thing to say. It was all very surreal.

They gave me an appointment the following week at the multi-disciplinary clinic. I would meet with 3 physicians in the span of a few hours: a medical oncologist, a radiation oncologist, and a breast cancer surgeon.

My memory of that day is trying to take in a lot of information in a very short amount of time. First we met the medical oncologist, a woman who was young, dark-haired, tall, and pretty. A immediately dubbed her "hot oncologist babe," a name that stuck for quite a while. She examined me, and was concerned that the tumor was very close to my nipple. She thought I might need chemo before surgery (called neoadjuvent chemo) to shrink the tumor. I'd never heard of that before.

Next we met the radiation oncologist. Also a young woman, tall, and with an accent. She seemed very nice, and talked about radiation therapy, but that was something down the road. First stop would be surgery.

Last we met with the surgeon. An older woman than the others, she was calm and lovely. She examined me and felt that she could probably take out the tumor and save my nipple. If not, she said, she'd just take the nipple off and my breast would look like a mountain with the peak removed. Our next step was to schedule surgery.

There was a nurse there kind of coordinating the visit, and before we left, she gave us one sheet of paper that had all the information I needed about my breast cancer. Looking at it now, it's kind of amazing how organized the whole process was.

In retrospect, there wasn't really a discussion of choices. The plan pretty much had been made for me. Lumpectomy, discussion with the oncologist about hormonal therapy or chemotherapy, and radiation therapy. That was the plan. Also in the mix: genetic testing for the breast cancer gene.

My surgery was scheduled for several weeks later. Now I just had to tell everyone what was going on.

P.S. The government shutdown ended today. I am very relieved, but also disgusted with many of the people running our government. It's a very strange time here in the U.S. Strange indeed.

Sunday, October 13, 2013

The things that I'm afraid of

Note: This has been a very difficult post to write, and I sure it will be difficult to read. But I want to tell the truth about breast cancer. And the truth isn't pretty.

It's been almost 5 years since my breast cancer diagnosis, and I'm doing well. My surgery scar is healed, my only major side effects from the Tamoxifen is hot flashes and (ahem) weight gain, and overall I'm feeling fine. However, there are two words out there that still -- and probably always will -- make my breath catch in my throat:  recurrence, and mets.

First, recurrence. Every breast cancer "survivor" worries that even thought she is "cured" or NED (no evidence of disease), that some day she will have a recurrence of breast cancer. The breast cancer could come back in the same breast, although this is less likely if you have had radiation therapy. Even a woman who has a mastectomy could have the breast cancer return in the scar or chest wall. According to Susan Love, this happens about 10% of the time.

You could also get another type of cancer in the same breast, your other breast, or someplace else in your body. This isn't technically a recurrence: it's another "primary" cancer.

Another thing that can happen is that you can get metastatic disease, known in the cancer world as "mets" for short.  Every breast cancer "survivor" worries that even thought she is "cured" or NED, and even though she had chemotherapy and suffered through nausea and hair loss and chemo-brain, and even though she took Tamoxifen or an Aromatase Inhibitor or some other estrogen-blocking medication for 5 years and suffered through hot flashes and aches in her bones, that some day, a tiny cancer cell will spread through her lymphatic system and take residence in her brain, her liver, her lungs, or another organ, and start growing there ... and she will have mets. Stage IV breast cancer. There is no cure for Stage IV breast cancer.

The good news is that metastatic disease has become somewhat of a "chronic" disease, with many treatments available, each of which will work for a time, and then the care team will move on to another. So women with mets can often live for many years.

The bad news is that eventually, the disease will win. Women can live a long, long time, but there is no "cure" for metastatic disease.

Dr. Susan Love explains how women get mets like this:
In order to metastasize, cancer cells have to evade the body's immune system, make new blood vessels, travel through the bloodstream, figure out what organ to go to, break out of the blood vessel, get into the new organ, and set up a new home. But even when early metastasis has occurred, it doesn't necessarily spell doom. Let's say that the cell has successfully made the journey to the lung. Once it arrives there it has to establish a new home by making new blood vessels. It's possible that other cells in the lung may be able to keep these invaders under control. The cells then act normally until something happens—a change in the lung's environment or a new genetic alteration occurs that allows the breast cancer cells to grow in the lung. This might explain why some women will have a recurrence of breast cancer many years after the first diagnosis. Those cells were there from the beginning but were dormant until the right conditions induced them to grow again.
There is an active and supportive metastatic breast cancer community, and some of the organizations include Metavivor and the Metastatic Breast Cancer Network (MBCN). 

I know people who've had recurrences, who've had new primary cancers, and unfortunately, some who have mets. I have a cousin and a friend who both died of mets related to breast cancer, both in their 40s. And I have a college friend who died of mets related to lung cancer in her 40s.

There are some women who write very eloquently about living with Stage IV breast cancer, such as Lori of Regrounding and Lisa of LisaBAdams, and Nancy of Nancy's Point doesn't have mets although her mother does, and she posted a page about mets that is full of wonderful information. I admire these women for having the courage to write about their experiences, no matter how difficult or painful.

The truth is, every now and then I go to a breast cancer blog to see what's up, and that person has died. Yes, died. It's devastating. Sometimes the husband or partner will continue writing on the blog, and that's painful to read, too.

Even though breast cancer is being discovered earlier and earlier, women are still getting mets and dying from mets at the same rate as they were many years ago. So early cancer treatment is not preventing mets. This is really important, and really difficult, to understand.

Archie Bleyer, M.D., and H. Gilbert Welch, M.D. wrote an important article in the New England Journal of Medicine about mammography and breast cancer, and one of their conclusions is this:
Despite substantial increases in the number of cases of early-stage breast cancer detected, screening mammography has only marginally reduced the rate at which women present with advanced cancer.
Early detection and treatment are NOT preventing mets.

So today, October 13, is Metastatic Breast Cancer Awareness Day, sponsored by MBCN. You can read more about it here. Here is something posted on the site:
Oct 13 is National Metastatic Breast Cancer Awareness Day. We are the Debbie Downers of the breast cancer world--feared, ignored and underfunded. Most people are familiar with early stage breast cancer. Metastatic breast cancer is very different. Treatment is ongoing and unrelenting for the 150,000 US women and men living with this incurable disease. To learn more, visit www.MBCN.org
So the truth is, I'm doing fine right now, but there is always a chance that I could get a recurrence, or mets. So there is really no "cure" and no "cancer free." There is only waiting, living, and hoping.

Wednesday, October 09, 2013

Breast cancer prevention?

The harsh reality is that there IS no breast cancer prevention. We just don't know exactly what causes breast cancer. Cancer is an overgrowth of cells - normal cells that start growing wildly. But WHY do these cells suddenly (or not so suddenly) start growing wildly?

There are a few theories. One is that estrogen-fed breast cancer, which is quite common, is caused in part by too much estrogen exposure in the body. This could be due to: early menses, late childbearing, lack of breastfeeding, late menopause, lack of exercise, drinking alcohol, hormones in the food supply, and a host of other things that could cause a woman (or girl) to be exposed to estrogen. So one theory of prevention is if women (and girls) reduce their exposure to these estrogen-causing things listed above (some of which we cannot control, you will notice), that it might help in reducing their chances of getting breast cancer.

Another theory that is espoused by Dr. Susan Love (one of my heroes) is that with cancer, the "neighborhood matters." Dr. Love feels that cells need to be in a certain "neighborhood" in order to overgrow.
My usual metaphor for this is thinking of a neighborhood where the individuals in the neighborhood with their own talents, neurosis, and problems (the actual cancer cells) interact with each other and also relate to the conditions and other people in the neighborhood i.e. graffiti, garbage on the street, drug pushers, crime, gangs etc.  All the factors combine together to lead to bad things happening.
You can read more about her theory here. This theory isn't really helpful right now, but may be helpful in the future in trying to figure out how to prevent breast cancer or how to prevent cancers from metastasizing.

Another theory, and one that is gaining traction in the scientific community, is that there are chemicals in our environment -- in the food we eat, in our homes, in our cleaning and personal care products, everywhere -- that haven't been properly tested for their impact on humans, and which are causing breast cancer as well as other cancers and other health issues as well.  It's like we are living in a giant experiment. I truly feel that some day, say 50 years from now, people will look back and say: how stupid they all were! Why did they think it was okay to use pesticides on crops and give hormones to animals and then ingest that food? Why did they think it was okay to pump chemicals into waterways and into the air, so that animals and humans breathe and drink the contaminated water and air? What were they thinking???

People always want to know what they can do to prevent breast cancer, and some people take the personal approach. They choose to eat organic food, to buy organic personal care products, to avoid using pesticides in their yard, etc. This is a fine approach, but I feel that it's just not enough. We are exposed to too many chemicals just from living in our environment. Unless we live in a bubble, we can't control everything. You can control what you do, but what if your neighbor uses pesticides on her lawn? What needs to change is the policies that allow all these chemicals out into the world.

This may not be a popular position, but I'm not thrilled with websites that tell you personally how to reduce your risk. For example, the Breast Cancer Fund's website has a section called Reduce Your Risk in which it lists all kinds "tips on how you can make simple changes to reduce your risk." The Silent Spring Institute has a new website called Too Close to Home that similarly talks about how individuals can reduce their risk through avoiding chemicals and other exposures in their homes. I just don't feel that this is enough; I also feel like it's giving people a false sense of control. It's much bigger than what each of us does personally. It's much, much bigger than our personal decisions and behaviors.

Tuesday, October 08, 2013

Finding out - Part 2

A few days later, I went in for my biopsy. This is what I remember.

The technologist had very long grayish hair, and was very sweet. She brought me into a room for the procedure. I remember that there was wallpaper in that room that reminded me of the wallpaper in our kitchen: white with little bunches of flowers, very old-fashioned looking. Everyone involved was female -- a fact I found comforting -- and women bustled around me as they set up for my procedure. It turns out that they were trying out (!) a new kind of biopsy instrument, and the rep from the company was there as well, so it was crowded in the small procedure room.

I think they started with an ultrasound, but I'm not sure. They numbed my breast with a local anesthetic, and the doctor used the instrument to take cells from the lump. It was loud, and it hurt some. I think they gave me some extra lidocaine. I remember that she showed me what she had extracted from my breast: it looked like little tiny pellets. She also inserted some kind of marker into my breast, and after the biopsy, the long-haired technologist took me into another room for a mammogram to make sure the marker was placed correctly. I really didn't want a mammogram after all that, but it was necessary, and it hurt. I remember that the tech gave me an ice pack to put into my bra. Then I went home.

They told me it would take a few days for the results to be ready.

What's odd is that now I can look at the hospital records and see if my memory is correct. This is what it says:

ULTRASOUND-GUIDED CORE BIOPSY, RIGHT BREAST: The patient was referred for an ultrasound-guided core biopsy of a mass in the right breast at 12 o'clock. The procedure, risks and benefits were explained to the patient and written informed consent was obtained. A preprocedure timeout was performed using two patient identifiers. Using standard aseptic technique and 2cc 1% lidocaine for skin anesthesia, a small skin incision was made. Then a coaxial 10g needle was placed adjacent to the tumor mass and following deeper anesthesia with 10cc lidocaine with epinephrine for local anesthesia, 12- gauge Suros ATEC vacuum- assisted biopsy device was used to obtain seven core samples of this lesion. Following the biopsy, a retangular titanium SUROS clip was deployed into the lesion under direct ultrasound observation. The patient tolerated the procedure well and there were no immediate complications. The procedure was performed by XXX M.D. IMPRESSION: Successful ultrasound-guided core biopsy of a mass in the right breast at 12 o'clock. Pathology is pending
My primary care doctor told me to make an appointment for that Thursday -- 2 days later -- so she could give me the results. The problem is, they told me it would take 2 or 3 days to get the results. I was worried that the results wouldn't be ready in time for the appointment.

To be continued...

Sunday, October 06, 2013

Too much

I just had a conversation with someone I know who was recently diagnosed with breast cancer. From what I can tell, it's a fairly small, early cancer with no spread detected (as yet), so she would be a good candidate for lumpectomy, radiation, and hormonal therapy. But the woman I was speaking with is opting instead for a double mastectomy. Having both breast surgically removed. Her reason? So she doesn't ever have to deal with breast cancer again.

In my opinion, she is doing too much. And it bothers me. A lot.

I've been hearing a lot over the past few years about women who choose to have contralateral (both sides) prophylactic (preventative) mastectomy (removal of the breast), also known as CPM for short. It seems to be, for lack of a better word, a fad. It seems to be a choice for many women with all stages of breast cancer, including Stage O, Stage 1, and Stage 2, all of which can be treated with lumpectomy, radiation and hormonal therapy. But women are choosing the most extreme approach. Why?

It turns out there was a major study just published last month in the Annals of Internal Medicine (this link is to the abstract only). This study surveyed women who had chosen CPM. 94% of the women chose to have the procedure to "improve their chance of survival," and 98% to "reduce the risk that cancer will develop in the other breast." The only problem is, as the authors note, "CPM is not likely to improve breast cancer survival rates." If a woman has cancer in one breast, her chance of getting it in the second breast is only 4-5% in the next 10 years. So women are getting this extreme procedure, not for a physical benefit, but for a psychological one.

There are several interesting articles about this study online. In this article from Medscape Medical News, one of the study doctors is quoted as saying:
“Many women have unrealistic expectations of what having their opposite breast removed will do. We did a study that was published last year in which the women we interviewed thought their average risk of getting cancer in the opposite breast over 10 years was more than 30%, when the actual risk is about 4% to 5%. The take-home message from this study, which is a great study, is that physicians need to take time and explain the facts to their patients.”
Another issue is the potential of complications from the surgery, the recovery period from the surgery, and future issues such as "unplanned operations, less than ideal cosmetic results, sexual side effects, and self-image issues," said Dr. Attai, a breast cancer surgeon quoted in the article.

A second article, from the LA Times, discusses this same study. In this article, the author states:
...the women did not seem to fully grasp that they could keep their healthy breast and have the same long-term odds of surviving breast cancer. An editorial that accompanied the study noted that over a 20-year period, no more than 1% of those who decide to keep their healthy breast later die because their breast cancer has spread there.
I wrote several months ago about the celebrities who are having CPMs and making it seem so do-able and easy. This is another part of the picture. High-profile women with breast cancer are having these procedures, and regular women think, "well, if they can do it, why not me?"

In the end, women need to make their own decisions. I tend to err on the side of being conservative with medical issues. Others would choose to err on the side of being more bold. Still, it makes me sad to think that women are so afraid of breast cancer that they would choose to cut off their breasts. It just makes me sad.

Saturday, October 05, 2013

Finding out

This is the story of how I found out that I had breast cancer.

Since my mother had breast cancer at 47, my primary care doctor considered me at higher risk, and she had me come in for a breast exam every six months, with mammograms once a year. This time -- it was December 2008 -- I went in for my six month check, and she felt something different. It was a firm lump in my right breast. She didn't act too concerned at first, and when I felt it, it really felt like just normal lumps and bumps that I'd experienced over the years. We decided that I'd come back a few days later to see if it was any different. I kept feeling the lump, and it was still there by the next week, but I'd convinced myself it was nothing.

My doctor was not convinced. She tried inserting a needle into the lump to see if she could get some fluid out of it: nothing. The lump was just there, lump-like.

"Well," she said brightly, "looks like you are going to have some extra imaging!" The office staff set me up for a mammogram and ultrasound in a few weeks. I kept feeling the lump, and kept denying to myself that it was anything.  Weeks passed.

Finally the day for the imaging came. It was early January 2009, and A and J were both home. I drove myself to the hospital for the tests. I don't remember a lot about the mammogram, but I vividly remember the ultrasound. The imaging technologist kept running the wand over my breast, over and over, and it was starting to feel uncomfortable. Then two doctors came in, an older woman and a younger man. The male doctor spoke to me, and said that they were recommending a biopsy.  "What do you think it is?" I asked. "Oh, it could be many things," he replied cryptically. Neither he or the female doctor said anything about breast cancer.

After they left, I was left in the room with the technologist. She looked at me. "I've been doing this for 20 years," she said, "and I'm pretty sure that it's breast cancer."  I started to cry.

She gave me one of those sad boxes of tissues that they have in hospitals: tissues made out of the thinnest possible paper.

I don't remember much of what happened next -- I must have changed into my clothes -- and when I got downstairs into the main lobby of the hospital, I called A, crying. "They think it's breast cancer."

And that's how it all began.

I still wonder to this day why that male doctor didn't tell me the truth, and why the older female doctor didn't correct him. What were they thinking? Did they think that not telling me was the right thing to do? I'm glad that the technologist was honest with me, but why was it left up to her to tell me the truth? I'll never understand exactly what happened in that room, but it was all confirmed about a week later. It was indeed breast cancer.

Friday, October 04, 2013

Turning pink

Our local paper the Needham Times has "turned pink" as it does every October. The newspaper is literally printed on pink newsprint (see below). To me, it's highly unnecessary at best, and at worst, feminizes and infantilizes breast cancer, but someone must feel it's a good idea. Or perhaps, to someone, it's a "feel-good" idea.
There are several articles in this week's "pink" paper about breast cancer, and one in particular that I actually found refreshing. It explained about the different subtypes of breast cancer, and a bit about how cancer treatment is becoming more personalized -- which it is -- based on the type and subtype of the cancer, stage, etc. It also mentions the issue of cancers behaving differently in different people, and the reality that some women respond better to a treatment than others, why some women have their cancer recur while others don't, and why some cancers metastasize and others don't. It's good to see a more complex and nuanced explanation being laid out, instead of just a simplistic one-size-fits-all portrayal of breast cancer that you often read about.

I'm happy also to see that the Times isn't printing the "feel-good" type stories that they have had in the past about breast cancer survivors, talking about how "strong" they are, and how "brave." It's not that we aren't strong and brave: it's that we are also weak and scared and human.

Although there seem to be less "pink" things going on this year, there are still some, and I find them annoying. For example, I read in today's Boston Globe that the Museum of Fine Arts is having an exhibition entitled Think Pink which "explores the history and changing meanings of the color as its popularity ebbed and flowed in fashion and visual culture from the 18th century to the present day." It is no coincidence that this exhibit starts Oct. 1. "The opening of “Think Pink” in October coincides with Breast Cancer Awareness Month, when the MFA will be illuminated in pink." Really? Do they need to illuminate the MFA in pink? Ugh.

In case you haven't noticed yet, I'm not a big fan of the whole pink thing.

Think Before You Pink is a project of a great organization called Breast Cancer Action. The idea behind Think Before You Pink is that companies are profiting from pink merchandize, and it is up to us to research who exactly is receiving these funds before we blithely donate to organizations selling something pink. This year, the Think Before You Pink campaign is focusing on toxic chemicals in consumer products and in the environment, which is something I feel very strongly about (and will discuss more in a future blog post).

I'll leave you with another strange example of pink-ness: apparently Chile's presidential palace is being lit up in pink lights this month for breast cancer awareness. In this article, the First Lady of Chile was quoted as saying: “still there is the mistaken and damaging assumption that not all women need to get mammograms for the prevention and early detection of this type of cancer." Well, mammograms don't prevent breast cancer, and early detection isn't always possible, but I guess they are kind of on the right track...

Thursday, October 03, 2013

What makes a Jew a Jew?

Everyone suddenly has their panties in a twist about the new Pew Research Center study that came out this week, A Portrait of Jewish America. You can read the study yourself here. One of the most prominently reported findings of this study is that one-fifth of Jews in America describe themselves "as having no religion," and instead "identify as Jewish on the basis of ancestry, ethnicity or culture."

Some argue that this is the end of the American Jewish community. Others view it as just the opposite. Still others think that this is not bad news or new goods, but shows where Jewish organizations and synagogues need to focus their work.

J.J. Goldberg of the Jewish Daily Forward comments:
The striking thing isn’t that they don’t identify with Judaism as a religion. What’s striking is that they still want to call themselves Jewish when you give them a chance—that is, when you conduct the survey in a way that makes them comfortable (which should be rule one in any survey, I’d think). What’s amazing is that 94% of those 6.7 million Jews are proud of being Jewish, 80% say it’s an important part of their lives and 75% have a strong sense of belonging to the Jewish people.
I agree. These sounds like wonderful findings to me.

As often in these reports, there is a focus on intermarriage, and the typical tired assumption that Jews marrying non-Jews leads to children who aren't Jewish. In my personal experience, friends who have chosen to marry non-Jews are still working very hard to keep Judaism in their homes and their lives, and their kids are just as Jewish as any other Jewish kids that I know. I know this is not a representative sample by any means, but I still have the sense that intermarriage isn't going to be thing that ends Judaism in the U.S.  It may be that religion in general is becoming less important in the U.S.

I think what this survey describes that is fascinating is the phenomenon of Jews -- as well as many others in the U.S. of various faiths -- who identify in some way with their religion, but don't consider themselves religious per se. People in the U.S. are simply less religious these days, period. Or rather, they consider themselves less religious.

Which raises the question, what does it mean to be religious, anyway? In Judaism, there are certain behaviors that are typically considered religious behaviors: observing Shabbat (the Sabbath), keeping kosher, attending synagogue, involvement in Jewish organizations, schools, and social events. It may be that Jews who don't do these things regularly don't consider themselves religious.

I've often wondered: what exactly is the checklist that makes one religious or not? Is it lighting Shabbat candles? Fasting on Yom Kippur? Attending a Passover seder? If you do one of these things, but not all three, are you not religious?

Rabbi Leslie Gordon gave a wonderful sermon at our shul this winter in which she pushed us to reconsider what it means to be "religious." She proposed that if we are considering the world through a Jewish lens, and making decisions based on Jewish law and Jewish ideas, even if our choices of religious practice aren't typically Jewish, that we should still consider ourselves "religious."

So in the end, this may all have to do with definitions. Perhaps the questions in the Pew survey about being religious contained too narrow a definition. Or perhaps, as I proposed earlier, Americans are simply becoming less religious in general. However, I don't see this report as the death of the Jewish community in America. Rather, I see it as a success: Jews feel proud to be Jewish, part of the community, and being Jewish is important to them. Not too shabby at all.

Wednesday, October 02, 2013

The trouble with mammograms

Mammograms are often thought of as the first line of defense in the war on breast cancer. Many breast cancer organizations, such as Komen, pay for mammograms for women who can't afford them. On its face, this seems like a good thing. Why not screen women for breast cancer? It couldn't hurt, and it could only help, right? In fact, one of Komen Massachusetts’ goals is “committed to 100% screening. “

There are several reasons why mammography isn’t always a good idea. Whenever you start screening a population as opposed to individuals with a particular risk factor, you find a lot of things that aren't really problems, but once you find them, you have to do something about them. This is called over-diagnosis and over-treatment. Over-diagnosis and over-treatment is something that drives me absolutely crazy. Thousands upon thousands of women are diagnosed with DCIS (ductal carcinoma in situ, or stage zero breast cancer) and treated with surgery, radiation, and hormones for cancers that, in some cases, could just be left well enough alone. The big problem right now is that we have no way of predicting which cancers will go on to cause harm, and which ones are slow growing and will probably not cause harm. So we have to treat everything as if it's harmful. That's over-treatment.

On the other side of the spectrum are women with dense breasts for whom mammography isn't that useful. The density makes it hard for the radiologists to see the abnormalities. This creates a false sense of reassurance when in actuality, a tumor is growing.

Mammograms are not the be-all, end-all that we've been led to believe. They are a tool, and for some women, especially those whose breasts aren't dense, they can be a good tool to detect tumors that are too small to feel.

For younger women, however, whose breasts tend to be dense, mammograms aren't so great. About 40% of women have dense breasts. For these women, breast MRI and/or ultrasound may be a better choice. (Here is a great article on breast density.)

I am one of those "dense-breasted" women. Because my mother had breast cancer at 47, I was considered at high risk, so I had yearly mammograms from my mid-30s through my 40s. Some years providers would find a lump, and do some additional testing, and then send me on my way. "Everything is fine," they'd say. Until it wasn't.

My breast cancer was discovered by my primary care doc who was doing a physical exam of my breasts. There was a firm lump in my right breast that she hadn't felt 6 months before, and which hadn't been there when I had my last mammogram. The thing is, breast cancers take 8 or 10 years to grow in a breast, so my cancer had been there for a quite a while, undetected by mammography.

According to Archie Bleyer and H. Gilbert Welch, two physicians who wrote a recent article in the New England Journal of Medicine, increased screening over the past 30 years in the U.S. has led not to decreased mortality (breast cancer deaths) but to increased over-diagnosis, which is to say, many women (about 30 percent) whose cancers would never have caused harm have been treated for those cancers with guns blazing (over-treatment).

I worry that I was one of those over-treated women. If my cancer was really there for 8 or 10 years and not causing any problem, and not spreading, did I really need 2 surgeries, radiation, hormonal therapy and all the rest? It's not that I'm not grateful for the care I received. It's that I wonder whether it was all necessary.  Right now, there is no way of knowing.  Hopefully some day we will know, and can avoid over-treating women. Women -- like me.

Tuesday, October 01, 2013

Open and shut

Today the U.S. federal government shut down, and the Affordable Care Act Health Insurance Marketplace opened. And even though it's October 1st, the official start of breast cancer awareness month, there's been much less pink than in past years. So far. Which is a good thing.

More tomorrow...