Blog Entries

Friends are Good for Your Health

Mon, 20 May 2013 10:59:34 -0400

We already knew this. We all need friends, and we especially need friends when we have troubles. We need friends, then, who can comfort us, cry with us, hug us and care for us. We also need friends who make us laugh and push us a bit and plan excursions when we can't begin to imagine finding the energy to do so. In Social Work 101, they teach you that people with strong social support networks do better in all kinds of ways in life. They are less likely to be depressed, are more successful, even live longer.

Caffeine Intake and Coffee and Breast Cancer Risk

Sun, 19 May 2013 12:47:06 -0400

I debated whether or not to write about this, but decided that it is too good an example of the deluge of confusing and conflicting news to ignore. If you are a regular reader of this blog, you will remember that not long ago, I wrote about a study that suggested that moderate coffee drinkers had a lower risk of breast cancer than those who drank less or no coffee.

What do I Say

Sat, 18 May 2013 13:11:19 -0400

We all have had people say really stupid, at best, or hurtful, at worst, things to us about our cancer. When you are feeling well and forgiving, it is possible to remember that these remarks usually come from a place of good will and that hardly anyone has the overt intention of cruelty. When you are not feeling so well, it is very easy to be hurt and angry. Comments that often stimulate our strong negative responses may be the stories about the speaker's friend/cousin/co-worker/neighbor who "had just your kind of cancer....and died." or words that make it clear that the speaker is trying to put distance between us.

TSA Tries to be Helpful

Fri, 17 May 2013 12:43:00 -0400

Many of us have horror stories about interactions with the TSA at various airports. Some of them have even made the national news; do you remember the very old woman in a wheelchair who was taken aside and frisked because she was wearing Depends? My own infuriating experiences have always been related to the newer x-ray screening machines and the fact that I wear a prosthesis. To be fair, the bad episodes are happening less often as (I assume) the TSA people who read those images have become more experienced at differentiating a prosthesis from a bomb. It does still happen, however, so I approach each machine with some trepidation. As I have written before, my strategies depend upon the mood of the moment. If I am feeling especially tough and feisty, I whip out the prosthesis and toss it in the bin along with my shoes. That always garners a number of horrified looks, but sometimes I don't care. If I am feeling more shy or vulnerable, I take it out in the ladies' room and stick it in my purse. And sometimes I just take my chances.

And Still More about Angelina Jolie and her Decision

Thu, 16 May 2013 10:21:47 -0400

I am aware that one way of looking at this is that I can't let it go or know when enough is enough or am obsessed with the news about Angelina Jolie's decision. I suppose that all three views are a little true, and I am sometimes (my husband might say often) guilty of not knowing when enough is enough. However, in my defense in this instance, this news has continued to dominate my time, and I am hearing from so many women who are reacting strongly. At the end of a group for women post treatment yesterday, this came up. One woman, who has had bilateral mastectomies after a high risk breast cancer, began to talk passionately about her own situation, and it was clear that the news had stirred up many intense feelings that were overwhelming.

More about Angelina Jolie and Choices

Wed, 15 May 2013 09:36:43 -0400

I sort of feel that I should apologize for continuing the conversation about yesterday's big news regarding Angelina Jolie's choice to have bilateral prophylactic mastectomies. However, it is very clear from the continuing deluge of news articles and all the emails that I have been receiving that this is still very much on our minds. The women whom I know, virtually all of whom have had breast or ovarian cancer, have had strong and mixed opinions about her decision. They have been honest and self-aware about their reactions--one of my favorites was one woman, a nurse, who chose this same surgery after a breast cancer diagnosis. She said that, although she knows it is very trivial, she is bothered by the "double mastectomy" phrase that is so often used. As she commented, there is no such thing as a "triple" mastectomy.

Angelina Jolie and Breast Cancer

Tue, 14 May 2013 10:39:00 -0400

Today's obvious topic is all over the news: Angelina Jolie had bilateral prophylactic mastectomies and reconstruction earlier this year. Her mother died of breast cancer at 56, and Ms Jolie tested positive for the BRCA1 gene. She has six children and, very understandably, is scared of her risk and wants to do everything that she can to stay healthy and well. As one friend said this morning: "She may have done more for breast cancer than all the pink ribbons of the past decade."
Yes and not so fast....

Sex and Cancer

Mon, 13 May 2013 08:48:44 -0400

I have written many times before about sexuality and cancer. The bottom line is that cancer is never a sexual aide, that a diagnosis and treatment impacts intimacy for everyone, and that it is not talked about as much as it should be. For most people with a new diagnosis, worries about sex are not at the top of the worry list; there are exceptions, but most of us are more distressed about possibly dying, the impact on our children, worrying about chemo and hair loss and nausea, professional issues, etc. It is also usually not at the top of our doctors' lists as there are so many things to discuss in the relatively brief appointment times. And, of course, are doctors are human and not all are so comfortable talking about sex. In our practice, I know that one of the common reasons for a referral to me is sexual concerns--expressed to the oncologist and quickly referred.

Barbara Brenner

Sun, 12 May 2013 14:03:17 -0400

There is only one possible blog to write today, a sad one. Barbara Brenner, a longtime breast cancer activist and all around extraordinary woman, has died of ALS. She was the Executive Direction of Breast Cancer Action in San Francisco, and especially well known for the Think Before You Pink campaign. Until a few days before her death, she continued to write her Heatlhy Barbs blog, and this was the final entry:

Thanks and Blessings
Posted on May 7, 2013 by bbzinger
As my life comes to an end, I want to thank readers of this blog (and our Caring Bridge site for reading all that I have written while I deal with ALS. I’m sure some of what I wrote was difficult to read, some of what I wrote helped others, while other pieces just made you think. This blog will be up awhile — and some ambitious person might turn it into a book. If you think of others who might benefit from anything I’ve written, please send it along to them.

I have been blessed to lead a rich life, full of love and culture and travel and work that had meaning for me. I have no regrets except that I got ALS in the first place.

I have met amazing people both in person and on-line. Everyone I have come in contact with has had something unique to offer the world. The world is a better place because these people are or were in it. Some of these people I have mentored (and you know who you are), others have taught me. What I know about all of these people is that I have been blessed to know them, and that they will succeed at what they set their hearts and minds to do.

In the Jewish tradition there is a Priestly Blessing. I copy below it because it is what I wish for all readers of these words:

May the Lord bless you

and keep you;

May the Lord make his face shine on you

and be gracious to you;

May the Lord turn his face toward you

and give you peace.

Changing Names of DCIS and LCIS

Sat, 11 May 2013 14:27:59 -0400

DCIS (ductal carcinoma in situ) and LCIS (lobular carcinoma in situ) cause a lot of misery and confusion. The "misery" part is obvious, but the confusion part often makes the misery worse. Numerous studies have suggested that women who are diagnosed with one of these conditions experience the same anxiety and sadness as those who are diagnosed with an invasive cancer. Indeed, not too long ago, both DCIS and LCIS were routinely treated with mastectomy. Only within the past 20 years or so has wide excision and radiation become a standard of care. When mastectomy was the surgery dictated, it was really confusing for women to try to understand why they, with a "cancer" (and most would say these are not cancer) that could not spread, were given only the option of mastectomy while women with invasive breast cancers could often be treated with a wide excision or lumpectomy.

Mothers Day

Fri, 10 May 2013 09:43:34 -0400

Mothers Day is one of those "holidays" that we love to hate. Like Fathers Day (which gets less of the marketing push and seems to have less of the emotional whallop) and Valentines Day (which I have long thought is important only to high schoolers and singles who wish they were partnered), it takes a lovely concept and then buries it in ads and cliches. How can it possibly make any mother feel cherished to receive a new vacuum cleaner? And although those breakfasts in beds carried tenuously by small children and prepared by only slightly older ones sound charming, most of us would really rather have brunch out with adults.Add cancer to the mix, and it quickly becomes more complicated and charged.

Prophylactic Mastectomies

Thu, 09 May 2013 10:10:50 -0400

I have written before about the increasing incidence of prophylactic bilateral mastectomies for women with early breast cancer who "only" need surgery on one side. It is terrifying to hear the cancer word, and most of us are frantic to do whatever we can to protect ourselves now and to insure our future good health. For some women, that translates to a strong wish to "get rid" of the other breast, a possible source of another crisis in the future. It may not be soothing to be told that the future risk of a second cancer in the other breast is very small, about 1% per year, and that breast cancer almost never goes to the other breast. The worries of cancer spreading are that it might metastisize to another part of the body; removing the second breast does nothing to minimize that risk.

Cancer and Marriage

Wed, 08 May 2013 13:31:51 -0400

Cancer is so very hard on marriages. Couples with good communication skills, loving connections, and adequate resources generally manage to get through the tough months and even to set aside whatever their usual issues may be. Couples with less solid marriages likely endure even more stress and harder times although they, too, may find a way to pull together through the crisis. Here are some of the most common soft spots: If treatment goes on a long time, everyone wears out--physically and emotionally. If there are children, it is much harder because of the strong feelings and worries as well as the immense work and responsibilities related to caring for them. If there is not enough money or time or other helpful people, the stress is worse. Sex always suffers, and many couples generally experience intimacy as one of the things that binds them closest together. And most married women with cancer feel obligated to only praise their husbands and describe them as "my rock".

New Techniques for Lymphedema

Tue, 07 May 2013 11:38:03 -0400

The really good news is that more attention is being paid to lymphedema and surgeons are increasingly willing to acknowledge that it happens, and that women should be educated about the possibilities even prior to surgery. The not so good news is that it continues to happen, that it is impossible to predict who will develop this problem, and that it is treatable, but not curable. The statistics re incidence are all over the place, so no one seems to really know how many women have been affected.

Celebration of Life

Mon, 06 May 2013 16:06:13 -0400

Many of you are aware that this June 2nd will be the 20th annual Celebration of Life. I literally began this event on my kitchen table, paying my then 10 year old daughter and a friend to stuff envelopes. The first year, we gathered at BIDMC, using the Sherman Auditorium for the large events, the cafeteria for lunch (others were directed down the hall to eat in various meeting rooms), and spaces around the main hospital for the workshops. I believe a few more than 100 people came, and we considered that to be a rousing success.

Seasons and Home

Sat, 04 May 2013 13:59:36 -0400

Many of you know that several years ago we bought a very small cottage on the water in Maine. Specifically, it is on an enormous tidal poond on Mt Desert Island, a place we have visited every year for decades. Before this cottage, we rented for a week or two each summer and dreamed of someday owning our own place. MDI is a four to five hour drive from Boston, so not very convenient, and real estate, especially on the water,is not cheap.Over the years we read real estate ads and occasionally, during a stretch of rain, actually went out and looked at properties, Nothing was ever possible.

Same Issues in England

Fri, 03 May 2013 08:27:53 -0400

It is always comforting to me to realize that others share our concerns. There is nothing surprising in this article from the BBC about survivorship issues in England and the need for physicians to expand the conversation beyond the specific medical concerns. People completing cancer treatment the world over must share the same worries about returning to work, families, sexuality, energy, etc. The health care system is somewhat different in Britain, and GPs (general practitioners, similar to our PCPs) seem to do more of the oncology follow up than is generally true in the US. Studies here have suggested that women who are followed by their PCPs after breast cancer treatment do just as well as those who continue to see their medical oncologists, but that is generally not the system. I suspect, in the era of more attention to costs, that may become increasingly true here, too. It is less expensive to see the PCP than to see a specialist.

Coffee and Recurrence

Thu, 02 May 2013 12:23:42 -0400

There hasn't been the same amount of attention paid to any relationship between coffee and breast cancer risk or recurrence as there has been to any associations with alcohol. However, a group in Sweden has just published the results of a study that suggest that, for women with a hormone positive breast cancer, drinking at least two cups of coffee (and, no, I don't know if that means a Grande or something bigger) may cut the rate of recurrence by half.

Understanding Risk of DCIS

Wed, 01 May 2013 09:49:11 -0400

Whatever the specifics of a breast cancer diagnosis, women worry. Of course we may worry a little more or a litte less depending on the statistics we hear or some of the details of the pathology, but we generally understand that no one gets a guarantee and that we are each an "n" of one. It has always interested me that this is equally true for women who are diagnosed with DCIS (or LCIS) which is generally described as "Stage 0". In fact, some doctors say that DCIS is not cancer, that it is something that might become cancer in the future if not treated. And the real kicker there is that many DCISs (is that the plural?) would never become invasive, but that we don't know how to tell those sleeper ones from the potentially dangerous ones.

Behind the Cover Story

Tue, 30 Apr 2013 10:20:20 -0400

This is a companion or follow up piece to the blog of Anpril 25th which linked to Peggy Orenstein's marvelous work about screening and mammograms and pink ribbons. Not surprisingly, there has been a lot of reaction to that cover story in the New York Times Magazine. I am on the Board of several professional groups that wish to write letters of dispute with her facts. There are always ways and other ways of looking at the data, but surely her essay is thoughtful and provocative and forces us to examine our assumptions.

Side Effects and AIs

Mon, 29 Apr 2013 09:44:48 -0400

Rarely do I receive an email from one of my doctor colleagues with the suggestion that I share a particular study with you. This, however, is one of those rare moments. The study, from JCO, suggests that women who experience side effects (vaginal dryness, stiffness, etc) may have a lower recurrence rate than those who do not. The very big caveat is that this is a single study, and, especially if you are one of the rather rare women who does not have any side effects, do not be concerned.

Fear

Sun, 28 Apr 2013 19:15:40 -0400

Fear and anxiety are constant companions in the early months or even years of living with breast cancer. As time passes and, if we are lucky and stay well, they diminish, but they rarely vanish forever. All it takes is hearing about a friend whose cancer has recurred or experiencing a symptom that likely will go away but causes panic in the short term or reading something about a woman who has died of breast cancer...and the fear grips us.

Reasons for Cognitive Complaints

Fri, 26 Apr 2013 15:59:00 -0400

Chemo brain is an often discussed and debated issue. Most of us feel some degree of mental fuzziness during treatment, and it seems impossible to know where to ascribe the blame. Is the change due to stress or fatigue or anxiety or all the drugs we are taking? Any of us who have taken, or are taking chemotherapy, know the unpleasant feeling of "my body has become a toxic waste dump." We are just not the same, and our minds usually are not either. Fortunately, for almost everyone, this fairly quickly resolves when the treatment ends.

Mammograms and Early Detection and PInk Ribbons

Thu, 25 Apr 2013 09:31:30 -0400

As many of you know, I can never pass up an opportunity to be critical of the Pink Ribbon Breast Cancer World. It offends me in all manner of ways, but one of the central ones is the absolute hypocrisy of many sponsors, and the misinformation that is foisted onto the world. "Early detection and you will be cured" is the message, and that is just not necessarily true. This all ties into the controversy about screening, most specifically about the value of mammograms.

Talking with our Children

Wed, 24 Apr 2013 10:37:02 -0400

I have written before about talking with our children, but the topic has been active this week in Boston as parents have wondered and worried about how to discuss the bombing and its aftermath with their families. The basic rules, I think, apply to any crisis or problem or difficult situation: use honest, age appropriate information and raise the subject more than once, in a way that can be explored or kept short.

Coping Differences between Straight and Sexual Minority Women

Tue, 23 Apr 2013 09:56:45 -0400

It is always dangerous to make sweeping (or even semi-sweeping) generalizations, and that surely applies to any assumptions about coping. I have read a number of article through the years that compare the Quality of Life (QOL) or coping of straight vs lesbian women with breast cancer, but this study is the first I have seen that breaks it down even further. Speaking only from a perspective of clinical observation, I would be hard pressed to make any statements about differences among groups. Of course, different women process a breast cancer diagnosis and treatment very differently, but I could not generalize about particular groups or populations. The variables have always seemed to be related to the individual and her unique perspectives, resources, and life experiences.

Acupuncture and Lymphedema

Mon, 22 Apr 2013 10:39:08 -0400

Lymphedema can be an intractable problem. Although most women with breast cancer do not ever develop this problem (thankfully), those who do quickly find that it never can be cured. Yes, there are treatments, and, yes, it waxes and wanes, but it is a chronic problem. It is pretty impossible to get accurate statistics on the incidence of lymphedema. Depending on who you ask, the number seems to fluctuate wildly, and many surgeons insist that "this never happens to my patients." This, of course, is just not true, and the development of lymphedema is not a negative reflection on the surgeon's skills.

What is a Survivor

Sun, 21 Apr 2013 17:56:57 -0400

What or who is a survivor? Is it the definition first proposed by Fitzhugh Mullen for the National Coalition of Cancer Survivors--that you are a survivor from the moment of diagnosis? Is it someone who has lived in good health for X number of years (and what might that X be?) post diagnosis? Is it, as is suggested sometimes in the darkest of black humors, someone who has not had a cancer recurrence but can only be called a "cancer survivor" as she is dropping dead from some other cause?

Radiation after Reconstruction

Sat, 20 Apr 2013 12:37:44 -0400

It is extremely difficult to make a decision about reconstruction. Women who need or opt for a mastectomy are then faced with the choice of whether or not to have reconstruction surgery--and, if so, which kind to choose. I always recommend that a woman talk with more than one plastic surgeon, no matter how highly recommended and respected the first was. Different plastic surgeons frequently make different recommendations, and it is wise to have as much information as possible. If both suggest the same surgery, that makes the decision a bit easier. I digress, however as this article is about the possible risk of having radiation therapy after reconstruction, and that is often an unknown factor at the time of surgical choice.

Birth Control and Fertility Drugs and Breast Cancer

Thu, 18 Apr 2013 09:19:36 -0400

This is one of those entries that will either have a great deal of interest to you or none at all. There are lots of ongoing questions and concerns about the possible impact of birth control pills and fertility drugs/treatments on breast cancer risk. I have worked with a number of women who had IVF and then breast cancer. Was there a connection? None has been proven, but they surely have wondered and worried.

Meditation

Wed, 17 Apr 2013 09:55:43 -0400

Once again, full disclosure: I am a (relatively) recent convert to daily meditation, so I am a zealot. My husband and I attended a meditation course in January 2012 and have quite regularly meditated twice a day ever since. On long plane flights, e.g. our recent trip to Africa, we meditated a lot more, and found it truly helped with fatigue and jet lag. On some days, when my schedule is especially busy and unusual (because habit helps), I forget and suddenly realize at bedtime that I have missed meditation.

Yesterday and Today

Tue, 16 Apr 2013 12:25:46 -0400

There is only one conversation in Boston today. The events of yesterday afternoon, at the finish line of the Marathon, are shocking and evil and tragic. There likely have been millions of words written and spoken about the bombs, and I surely have nothing new to contribute. I do want, however, to say something here about my colleagues at BIDMC.

The Other Shoe

Mon, 15 Apr 2013 10:12:27 -0400

Oh, yes, that proverbial other shoe. We are all indeed poised to hear it drop. Or to feel the noose again around our necks or the sword hanging over our heads or the black cloud getting a little more dense. We know the feeling. I often suggest to women that, whether or not you were a hypochondriac or a worrier before cancer, it is pretty tough not to take on those traits after the diagnosis. After all, since our bodies have proven that they can make a cancer, it is hard to trust that it won't happen again. Since it has happened twice to me (three times if you want to count a relatively minor skin cancert), I surely expect an encore.

Being a Friend

Sun, 14 Apr 2013 15:23:57 -0400

Tomorrow, I promise, I will find another theme for the day's entry. There has been some similarity over the past few days as I have written and shared wonderful essays about friendships and relationships and supporting one another. This is one more. From Lisa Boncheck Adams, whom I have surely quoted before, in the Huff Post, this is directed at those who want to be our friends. This could be another thing to xexox and have handy to give to people--either before or after they put their foot in their mouth.

Who Suffered Most

Sat, 13 Apr 2013 09:57:47 -0400

This is a perfect companion piece to yesterday's entry about the wonderful Ring Theory. Surely this describes a woman who was unfamiliar with those suggestions! From Joyce Wadler in the New York Times comes this essay about responses to others' problems--as in, my suffering/accident/loss/illness was worse than yours. I often hear this concern described as an issue in some support groups--that is, it can seem as though there is a hierarchy of breast cancer misery, and a woman who needs less treatment than others may be made to feel that she shouldn't complain. I truly hope that no one ever feels that way in one of my groups; I am on alert for such a sequence of feelings, and I think I manage it satisfactorily. Of course some of us need more treatment than others or longer treatment or have even scarier diagnoses, but we are all in this together.

How Not to Say the Wrong Thing

Fri, 12 Apr 2013 09:52:56 -0400

First, a thousand thank yous to Carolyn who sent me this link. I have read many articles about how to support a friend in trouble, and even written a few that attempted to make good suggestions. This is the best. Susan Silk has developed a simple system for how to support your friend and how to take care of yourself. She calls it the "RIng Theory" and the basic plan is: Support In, Dump Out. That will make sense when you read it.

Alcohol and Survival

Thu, 11 Apr 2013 08:52:27 -0400

This is excellent news for those of us who really enjoy a cocktail in the evening or a glass of wine with dinner. If you have been reading this blog for any length of time, you know this is a recurring topic, and it is often to share another study that suggests even moderate alcohol intake may increase breast cancer risk or recurrence risk. This newest study from Journal of Clinical Oncology suggests the opposite: that moderate drinking may not impact whether or not one survives breast cancer and might even increase your odds.

Free Stuff and Comments

Wed, 10 Apr 2013 09:35:05 -0400

First, a comment about the "Comments" section of this blog. I have heard from several women that they tried to leave comments and the system would not accept them. Many thanks for trying! It is a rather surreal experience to write this every day, send it out to the universe, and have no idea whether anyone is reading it. I spoke this morning with our IT people, and they are aware of the problem. It's not you and it's not me; it is bigger than all of us. They have hired a consultant (seemingly the cure for all ills), and, hopefully, it will soon be functional. When that happy moment comes, I will let you know. In the meantime, if you have comments or questions, please feel free to email me: hhill@bidmc.harvard.edu, and I will respond.

The topic of the day is "Free Stuff for Cancer Patients." The free stuff that I have long known about is things like being bald! Losing your eyebrows! Feeling sick and tired! Apparently, there are actually some good free things that might come our way.

Diet and Cancer Risk

Tue, 09 Apr 2013 09:44:16 -0400

Once again, we have researchers telling us that we really don't know much, if anything, about the impact of diet on cancer risk. Note that this isn't about the possible associations between diet and risk of cancer recurrence--that is an even less well known and illusive topic. Once again, we do hear that a "healthy diet" is a good thing, and even that living a "heart healthy lifestyle" (healthy diet, exercise, don't smoke, weight control, etc.) is a good thing. I come back often to this topic because there is so much interest in the foods we eat and the magical wish that, by controlling our diets, we could control our risks.

Non-compliance with Tamoxifen and Recurrence Rate

Mon, 08 Apr 2013 09:52:15 -0400

This is quite a serious and important study. The rate of non-compliance among women who are taking Tamoxifen or any of the AIs is quite high. There are many suggested reasons for this problem: side effects or perceived side effects, cost of the drugs, denial or a sense that the medication may not be needed. Whatever the cause, we know that women who stop taking these medications sooner than five years have a higher recurrence rate than those who finish the course.

Lymphedema and Exercise

Sun, 07 Apr 2013 12:19:18 -0400

Occasionally, there is a nice convergence of events. This entry arises from one of those moments. This morning at the gym, I was thinking (who knows why) about lymphedema and the sometimes contradictory advice about exercise and the risk of developing it. As I write this, I can see myself doing leg presses while watching a woman who was lying on the window sill, on a mat, doing arm lifts with small bar bells. I assume she was lying on the window sill, instead of the floor, as she wanted her arm to hang down. I don't think I have ever seen anyone do this before, and I was curious why she chose this position rather than standing up to do the lifts. I didn't ask her, so, unless one of you knows the answer and responds, this will remain a mystery. Anyhow, this moment happened, and then I came home and read this study about the possible impact of both heavy and light resistance exercises on the risk of developing lymphedema.

Benefits of Yoga

Sat, 06 Apr 2013 15:30:21 -0400

Learning more about the potential benefits of yoga is not really surpising, but it is nice to read more positives about this special form of exercise. For several years, I participated in a weekly class for women who had been treated for breast cancer, and it was great. Indeed, I felt strong and more flexible and very relaxed in the immediate moments afterwards. Life changed, and that particular class stopped, and I have not really done yoga since. Last summer, I went one morning to a drop in yoga class near our cottage in Maine. I had seen the sign, and it seemed like an easy and good opportunity to try this again. Instead, it was a stark reminder of the difference a few years (maybe 8, not really sure when the earlier yoga class ended) can make, and that, although I do go to the gym daily, yoga clearly uses different muscles. Several of the poses were very tough, and the larger problem was the next morning when I could barely move.

Truthiness

Fri, 05 Apr 2013 09:40:24 -0400

I love this word, "truthiness", and I love this essay by Susan Gubar that introduced me to it. The word, coined by Stephen Colbert, refers to the insistent belief in something despite there being no objective/real evidence to support it. Vis a vis cancer, Ms Gubar uses this word to describe her instinctive firm belief in her continuing good health in spite of rising cancer markers and in spite of her oncologist telling her that the ovarian cancer had returned. It also makes me think of several conversations I have had with women this week re their inability to separate wish from superstition from instinct from knowledge. Their examples had to do with a sense before diagnosis that something was wrong, and their worry now that concern abot a symptom or just a vague unease might carry the same unwanted truth.

Five Year Survival Rates

Thu, 04 Apr 2013 09:36:06 -0400

In a way, this is a companion piece to my recent blog on the use (or not) of the word "cure" in Cancer World. In Breast Cancer World, five year survival rates are misleading, often misused, and not so important. As I have said before, each year that you stay healthy, the odds of remaining healthy increase. But three years or five years or even ten years have no special magic for women who have had breast cancer. Research and statistics have to be organized in some way, and the standard format is five and ten years.

Help for Neuropathy

Wed, 03 Apr 2013 10:08:06 -0400

If you don't know what "neuropathy" is, consider yourself lucky. It is nerve pain/numbness, usually in the hands and feet, that can be caused by a number of chemotherapy drugs. For women with breast cancer, the usual culprits are the taxanes: Taxol and Taxotere. Certainly, not every woman develops this side effect, but it can be very distressing and even disabling for those who do.

The Cure Word

Tue, 02 Apr 2013 09:44:09 -0400

"Cure" is a word rarely heard in Cancer World. Generally speaking, the closest that our doctors ever say is something along the "You're doing fine" or "Everything looks good" or "NED" (which means "no evidence of disease"). For most kinds of cancer, and certainly for breast cancer, the five year mark is meaningless. For leukemia, if you are healthy for five years, you almost surely are cured. For solid tumors, including breast cancer, nope. Each year that you stay well, the odds increase that you will continue to stay well, but the possibility never goes away that the cancer might return.

Lymphedema

Mon, 01 Apr 2013 10:05:52 -0400

Lymphedema, arm or hand swelling after removal of axillary lymph nodes, is a major concern for many women. The risk is higher for women who have a full axillary dissection, rather than "just" a sentinel node dissection, and higher still for women who had the larger surgery and then radiation therapy. However, even for those women (and I am one), the actual incidence is rather low. It seems impossible to pin down any well documented or exact figures re the rate of lymphedema; the reported numbers vary so widely that it is almost funny. What is not disputed is that this is a serious problem for affected women.

Nutrition Guidelines are Inconsistent

Sun, 31 Mar 2013 12:15:00 -0400

In a nutshell, here is what we know about nutrition and cancer: Not Much. If you Google nutrition/cancer or stand in a bookstore or look on Amazon, you will be rapidly overwhelmed by all the advice. The problem is that very little of it is based on sound research and much of it is contradictory and misleading. Since diet is something that we can contol, most of us wonder what we should or should not be eating. Will be make the cancer grow if I eat sugar? What about dairy? (I chose those two examples as it is easy to find, in the unproven press, prohibitions against those foods)

The Scar Project

Sat, 30 Mar 2013 11:05:05 -0400

I was aware of this project but am grateful to Susan Gubar's essay for reminding me about it. No one gets through cancer without scars--some are larger and more visible than others, but we all have them. The Scar Project (http://thescarproject,org) is an astonishing collection of beautiful photographs of young women who have had mastectomies. Its' subtitle, "Breast Cancer is Not a Pink Ribbon" makes me like it even more.

Tyranny of Positive Thinking

Fri, 29 Mar 2013 07:30:00 -0400

I wish that I could take credit for the wonderful (I think) phrase that titles today's entry. Instead, the credit goes to Dr Jimmie Holland at Memorial Sloan Kettering in New York. It is a phrase that we can all immediately recognize and relate to. All of us have been warned by others that "you have to think positively" or "don't be negative" or some other injunction that suggests that the flavor of our thoughts and attitudes will make the difference between life and death from cancer.