Blog Entries

Guilt and Cancer

Wed, 19 Jun 2013 09:12:13 -0400

Many of us easily feel guilty, to a greater or lesser degree, about any number of things. There are jokes about "high octane" guilt, often attached to particular ethnic or cultural backgrounds. Coming from a very WASPy family, guilt was not a central theme of my childhood (instead, the emphasis was generally on "pulling up your socks and getting on with it"), but I surely know lots of women who feel that guilt was part of their daily diet. Guilt related to a cancer diagnosis comes in many flavors. The cancer guilt that I hear most often is either related to feeling responsible for the diagnosis (e.g. eating too many hamburgers, not managing stress, not getting enough sleep, not exercising daily, etc) or is survivors' guilt ("why was I so 'lucky' to have Stage I cancer and am doing fine?").

How to Be a Friend

Tue, 18 Jun 2013 09:47:54 -0400

Finally, a really excellent book that we can give to all our friends. Or at least we can tell our friends about it and strongly hint that they buy it. I am talking about Letty Cottin Pogrebin's new book, How to Be a Friend to a Friend Who is Sick. Written after her own experience with breast cancer, it is especially helpful in cancer situations, but I suspect the advice is quite relevant to all kinds of crisis and sadness and hardship. The suggestion, for example, to say:' It is good to see you" rather than the dreaded:"How are you? I mean, really how are you" would work just as well after a house fire or a death or a horrible accident.

Facebook and Mastectomy Photos

Mon, 17 Jun 2013 09:38:28 -0400

This is a story that you either will find important or completely trivial. Apparently there has been a simmering controversy about mastectomy (I think with or without reconstruction and maybe other smaller breast surgeries, too) photographs being posted on Facebook. Those in favor of the pictures presumably feel that it can be helpful information for other women and that it destigmatizes the surgery. The opposing views are obvious.

UK Study Finds No Mortality Benefit for Mammograms

Sun, 16 Jun 2013 16:49:32 -0400

To keep the pot boiling, I want to draw your attention to this new study from the UK that suggests that screening mammograms do not reduce mortality. There have been a number of US studies over the past few years that have found that screening mammograms (remember that, when the word "screening" is used, it means that we are talking about annual mammograms for the general population, not for women with a personal history of breast cancer) do not reduce deaths from breast cancer. Whenever we talk about this, feelings run hot and deep as many women have a story of their own breast cancer being found by a mammogram.

Conquer Fear

Fri, 14 Jun 2013 11:37:48 -0400

Just a few days ago, I wrote about the new study from Lancet that suggests many women and couples experience persistent anxiety about recurrence for a very long time after cancer. This came as no surprise to most of us, but it surely raises the question about what might help. Since none of us are going to get a promise from our doctors that we are cured, we have to find a way to live with the uncertainty and, sometimes, sharp fear. How long does it take before a backache is a sore muscle and not a possible sign of cancer spread? How long does it take before we head for an annual mammogram without a seething stomach?

Supreme Court Ruling on Patenting Human Genes

Thu, 13 Jun 2013 10:48:42 -0400

This is important. The Supreme Court has just announced a unanimous ruling that it is illegal to patent human genes. For us, this relates to the patent Myriad Genetics has held on testing for the BRCA1 and BRACA2 gene mutations; they have, until now, "owned" the patent on human genes. No more.

Triple Negative Breast Cancer

Wed, 12 Jun 2013 09:37:26 -0400

As many of you know, "triple negative" is a relatively new term used to describe breast cancers that are estrogen receptor negative, progesterone receptor negative, and her2 negative. For treatments, this means that neither the hormonal/anti-estrogen treatments or herceptin are useful. Often, triple negative breast cancers are grade III and believed to be of an aggressive nature. The "good" news about this is that they are particularly sensitive to chemotherapy as all chemo drugs attack fast growing cells.

Review of 2012 Research

Tue, 11 Jun 2013 10:07:51 -0400

Think of this as a companion piece to yesterday's entry about the basic biology of breast cancer. This is an interview with Dr Eric Winer and Dr Shom Goal about recent research and directions as we move further into 2013. Frankly, nothing in this piece is brand new information, but it is a very nice summary and captures the many areas of interest.

Breast Cancer Primer

Mon, 10 Jun 2013 14:03:35 -0400

This interview with Larry Norton, MD of Memorial Sloan Kettering, published in MedScape, is an excellent overview of breast cancer. If you have ever wondered about the basics of breast cancer biology and treatment, spending a few minutes with Dr Norton will be time well spent.

Love Poison and Intrigue at MD Anderson

Sun, 09 Jun 2013 16:40:55 -0400

First, I do know the basic rules (and many of the arcance ones) of grammar, and I surely know the title of this blog should read "Love, Poison, and Intrigue at MD Anderson". However this system won't accept punctuation of any kind in the title, so I am left looking poorly educated. I am quite certain that my English/grammar teachers at St Agnes Episcopal School would be horrified.

Come to think of it, there likely was a fair amount of love and intrigue going on there, but most of it went right by me. I do remember that a history teacher quietly vanished after there were many complaints that she talked too much about the sexual habits of ancient civilizations, and there was a girl a year ahead of me who quietly vanished, taking with her a loud chorus of rumors about pregnancy. Otherwise, I was pretty naive.

Anxiety But Not Depression Persists

Sat, 08 Jun 2013 16:38:06 -0400

It is so very satisfying when a study comes along and says what I (and you) have known all along. In this case, this study from Lancet compared results from a number of studies to find that, compared to adults who had not had cancer, cancer survivors had a similar level of depression but were 27% more likely to harbor anxiety two years after diagnosis and 50% more likely to have those feelings ten years later.

Non-Profits Use More Expensive Radiation Option

Fri, 07 Jun 2013 09:43:00 -0400

This is quite an alarming report from ASCO. The concerns about escalating health care costs identify many reasons for the expense. One that seems especially ugly is any suggestion that doctors or hospitals or other companies and institutions are driving up costs by providing more expensive treatments that are no more effective than less expensive alternatives. This article from MedPage, reporting on a study from Yale, states that Medicare recipients are 30% more likely to receive brachytherapy for radiation at for-profit hospitals than they are at non-profit institutions. Since Medicare reimburses at a higher rate for this choice, the implications seems pretty clear.

WIll Life Ever Feel Normal Again

Thu, 06 Jun 2013 09:03:45 -0400

This excellent essay by Heather Millar is more supporting evidence for both the prolonged time recovery takes after cancer treatment and the poor job that most doctors/nurses/social workers do to prepare women for that reality. As I say over and over and over, it takes at least as long as the total duration of your treatment (starting to count from the first day you worried or knew there was a problem until the final chemotherapy or radiation) to feel fully well physically and emotionally. And, for many women, it takes even longer than that.

Soy and Breast Cancer

Wed, 05 Jun 2013 09:48:00 -0400

There has long been expressed concern about the possible negative link between soyfoods and breast cancer recurrence risk. Since soy is a phytoestrogen, the belief has been that it may act as estrogen in the body--not a good thing for women who have ER positive breast cancers and are trying to reduce estrogen. There has even been worry that soy might diminish some of the positive effects of tamoxifen or the AIs. For some women, being told not to eat soyfoods is not an issue, but for others, it means a big dietary change.

Radiation without More Surgery Sometimes OK

Tue, 04 Jun 2013 11:52:03 -0400

This report from ASCO may be the beginnings of a game changer for some women with early breast cancer. A study from The Netherlands Cancer Institute found that some women with a positive sentinel lymph node who went on to radiation therapy without the intermmediate step of a full axillary dissection did just as well as women who had another surgery. If this results holds up in other studies, it could save many women more surgical time an the increased risk of lymphedema that comes from a full axillary dissection.

Taxol Schedules Equally Effective

Mon, 03 Jun 2013 11:05:48 -0400

Many of us have received Taxol as part of our chemotherapy regimen. You likely know that it is generally given in one of two ways: either 4 times in the Dose Dense regimen (meaning an infusion every two weeks), or a smaller dose weekly for 9 or 12 weeks. The total amount of Taxol given is the same, but the dose can vary a lot depending on the schedule. This study, just presented at ASCO, suggests that the two schedules are equally effective, and the smaller weekly doses are much easier to take--fewer side effects. The disadvantage is that one has to show up for chemo every week, but many of us would choose the increased visits for fewer side effects.

Ten Years of Tamoxifen

Sun, 02 Jun 2013 16:26:18 -0400

This is today's breaking news from ASCO. A study from the UK indicates that ten years of tamoxifen is even more helpful than five years. Until the introduction of the AIs, Tamoxifen was the only anti-estrogen or hormonal treatment for women of all ages with ER positive breast cancer. The standard of care with any of these drugs initially was five years, but, if you have been a regular reader of this blog, you know that there have been recent studies suggesting that longer duration of therapy with AIs is helpful. Now there is evidence that is true, too, for Tamoxifen.

ASCO 2013

Sat, 01 Jun 2013 16:24:48 -0400

The annual ASCO (American Society of Clinical Oncology) began yesterday in Chicago. For the next five days, 28,000 (!) physicians, scientists, other health care professionals, advocates, related industry representatives, and others will hear all the latest news about cancer and cancer research. Occasionally (as in when the results of the first herceptin trials were announced or when Gleevac was shown to literally pull some people with CLL back from the almost-grave) there is huge excitement. Much more often, there is slow progress. Beware of what you read in the media as it is almost always exaggerated.

Scalp Cooling and Hair Loss

Fri, 31 May 2013 09:23:30 -0400

There is no need to go into the usual diatribe about hair loss. We all know how horrible and distressing and stressful it is....and that we somehow settle into baldness and cope. Twenty or twenty five years ago there was a brief period when an ice cap was popular and recommended as a way to reduce hair loss. The idea was that a woman wore it (looked kind of like a big shower cap, filled with ice) during a chemo infusion. In theory, the cold constrcited the blood vessels in the scalp, reducing the flow of blood to that area, and thereby reduced the damage and subsequent hair loss. There were a few problems: it gave people horrible headaches, there was some concern about the wisdom of the theory, and it didn't work.

AIs and Hair Loss

Thu, 30 May 2013 09:40:15 -0400

Is it better to worse to read confirmation of some (bad) thing we have known about but not had proven? As any woman who has taken one of the AIs for any period of time knows, there is associated hair loss. It is surely not like the hair loss from chemotherapy, but there is thinning and textural change and a general diminishment of one's previous "crowning glory".

Financial Concerns

Wed, 29 May 2013 10:30:05 -0400

Even with gold-plated medical insurance, cancer is expensive. With less comprehensive insurance, it can be devastating. We like to think this is less of a problem in Massachusetts, where we thankfully have close to universal health care coverage, but it is surely still a problem. Many people have insurance, but also have large co-pays and deductibles. Oral cancer drugs are not always covered by insurance, and lots of creative thinking goes into how to deliver treatments and medications in the optimal and safe and "covered" (by insurance) way. An example would be Neulasta injections that cost upwards of 5K each; some insurances require that individuals receive those injections, given approximately 24 hours after a chemo infusion, at the Hospital--which adds the costs of a nurse and the hospital overhead as well as the patient's inconvenience, gas, and parking.

Rationing of Some Cancer Care

Tue, 28 May 2013 12:00:00 -0400

This is about to get really interesting. I am stunned to see the preview of this study from Penn Medicine about surveying attitudes re cancer care. The report, to be presented at ASCO in a few days, indicates that a majority of the general public, cancer doctors, and patients support not offering/paying for treatments that do not improve survival or quality of life.

Memorial Day

Mon, 27 May 2013 19:54:04 -0400

It is now the evening of Memorial Day, and the dusk's golden light is falling across the garden and through the windows. Such a gorgeous time of day, and especially so when it is the first sun we have seen in days. It was a disappointment to have pouring rain all over the Northeast through this long first of the summer weekend, but we do all know that having picnics is not the real meaning of Memorial Day. I come from a many-generationed miltary family; both my grandfathers and a few earlier ancestors and my father and brother and first husband were all West Pointers. It is in my blood, and I grew up knowing that Memorial Day was almost sacred.

Disparities in Breast Cancer Treatment

Sun, 26 May 2013 15:53:32 -0400

Volumes could be written about disparities in breast cancer (or any kind of cancer or health care in general) treatment, but this important topic has been receiving extra attention since Angelina Jolie went public with her decision about prophylactic bilateral mastectomies. Yes, she she "priviledged" to even have the choice to make, let alone to proceed through the surgeries and recovery with the best care and support that money can buy. That in no way minimizes her personal pain. Choosing to remove two heathy breasts is terrible for any woman.

Mothers with Cancer

Sat, 25 May 2013 11:17:46 -0400

Mothers with cancer. Our grief and terror about possibly leaving our children before they are grown. Our grief about leaving our children after they are grown. These are the most tender topics for most all parents with cancer. Given that I have had two breast cancers, twelve years apart, I have had two very different mothering experieces. The first time I was a single parent of an 11 year old and a 19 year old; the older daughter was away at college where she could likely pretend sometimes that this wasn't happening. I told her over and over to keep her own life going, that her doing so would help me the most. She did, and it did. My younger girl, at home, was forced to witnesss every difficult day, and I worried particularly about her. Without an involved and loving biological father, what would happen to her if I died? Many painful conversations with my older brother answered this question, and I had some solace knowing that he and his family would welcome and love her.

Targeted Therapies and Breast Cancer

Fri, 24 May 2013 15:11:46 -0400

All of us have heard the buzz around "targeted therapies", and most of it is good. The simplistic definition is that these are molecular agents that are designed to attack a particular part of a breast (or other) cancer cell. Rather than trying to kill the whole cell all at once, as does chemotherapy, a targeted therapy uses stealth to depower or kill or otherwise ruin a single tiny part that then makes the whole cell inoperable--or dead. Think of tamoxifen (perhaps the first targeted therapy although it wasn't called that) and ER positive breast cancers or, more recently, herceptin and her2 positive ones.

Mammaprint Helps with Treatment Decisions

Thu, 23 May 2013 17:32:30 -0400

Some of you are likely familiar with the Oncotype DX test, a gene-testing profile that examines 21 genes of a breast tumor to suggest whether chemotherapy will be needed/useful. Results come back that a woman is in a low, medium, or high recurrence risk group. This information, along with the pathology report and AdjuvantOnline, helps that woman and her oncologist make the decision re chemo. There are some limitations to the value of the Oncotype--most specifically that it is only for women who are ER positive, and less validated in cases of one or two positive nodes and her2 positive disease. The Mammoprint is a newer test that examines 70 genes, but has the disadvantage of requiring fresh tissue.

VIctorias Secret and Mastectomy Bras

Thu, 23 May 2013 09:51:08 -0400

First, I need to explain the incorrect punctuation in the title. I know that "Victoria's Secret" has a hypen in the name, but the system won't accept any punctuation marks. Hence, "Victorias Secret".

This is a story that received quite broad press a few days ago about a young woman who led an effort to convince Victoria's Secret to offer a line of pretty mastectomy bras. Any of us who are in the market for such lingerie know that even those that try to be attractive...really aren't. As an aside: many normal bras with underwires work just fine without pockets. Try and see if that works for you.

Dietary Supplements

Wed, 22 May 2013 12:47:38 -0400

This is another controversial and frequently misunderstood topic. Many, if not most, cancer patients at least think about their diets and wonder if there are foods that can be added or subtracted that would make a difference in their cancer progression. As far as I know (and I do try to keep up), there is zero proof that anything we eat or don't eat causes cancer or cures cancer or even has an impact on recurrence risk or progression. Certainly there is a great deal known about healthy eating, and the usual advice is the usual advice: meaning eat lots of fruits and vegetables, minimize the amounts of red meat, white flour, sugar. Today's article takes this all a step further with a careful look by the Clinical Practice Committee of the Society of Integrative Oncology at commonly used nutritional supplements.

Cancer Experience Registry

Tue, 21 May 2013 09:12:23 -0400

It is such a pleasure to write this morning about the Cancer Experience Registry, a program of the Cancer Support Community. The Cancer Support Community (www.cancersupportcommunity.org) is the name of the merged Wellness Community and Gilda's Club, and provides a multitude of support and educational services to cancer patients and their families at their many affiliates around the country. The Registry has been developed by their Research and Training Institute to identify and advance the understanding of the emotional and social needs of people who have been diagnosed with all kinds of cancer.

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.