Should I have a mastectomy? – Supporting Angelina Jolie’s decision

As I read the article on the New York Times about Angelina Jolie’s preventative double mastectomy, I was reminded of the many patients I have seen that have considered mastectomy either for treatment of their breast cancer or for prevention.  Most people see me while in the early stages of their decision making and from my conversations with them, it is clearly not an easy process and many of them ask me for advice on what to do.  Here are some conversations I have had with some patients (skip to the end if you want to read my advice):

The youngest patient I diagnosed with breast cancer was 26 years old.  She had a lump in her breast which I thought was probably going to be benign but being that we could never really be too sure of these things, I went ahead and biopsied it.  It came back cancer and I was floored.  All I could think about was how young she was, how she had so much life left to live and how she had a two year old daughter to take care of.  We did a breast MRI and additional small areas showed up on the MRI near her cancer that may have represented additional disease.  When she came back to see me about her MRI findings, I questioned her about what she was considering for treatment.  At that time, she was thinking of only having the lump removed.  I then told her that I was worried that there was additional disease and that I wasn’t so sure that just taking out the lump would guarantee that all of her disease would be removed.  I told her that she had so much life left to live and she has a two year old daughter to take care of.  Why take those chances?  She ended up opting for mastectomy.

I recently drained a benign cyst in a 40 year old woman.  I called her with the results and she told me she was considering having a double mastectomy.  I was caught off guard as most of these conversations end with, “Great!  Thanks!  See you in a year!”  I asked her what her reasons for this were.  Her mother died from breast cancer at the age 33.  Every year she comes in for a mammogram, it gives her incredible anxiety and she was already on anti-anxiety medications.  I told her that her mammogram was fairly easy to read and that if she develops a breast cancer, we would have a good chance of finding it when it was small.  That was no reassurance for her.  She didn’t want to take the chances.

Another woman in her late 40’s had very difficult breasts to image on both mammography and ultrasound.  She had numerous cysts in both breasts and was coming in every 6 months because her breasts looked different every time we imaged them.  She had been through several cyst aspirations and a couple of benign biopsies.  When she came in to see me for her results, she told me she wanted a double mastectomy.  She asked if I thought she should have her breasts removed.  She was practically begging me to say yes so she could jump on board with the decision.

A woman in her early fifties was diagnosed with a triple negative (very aggressive) breast cancer a few years earlier.  While the mass was small, she opted for mastectomy.  She came to see me for a mammogram of her other breast which remained.  It was dense and so I discussed having a breast MRI done to screen that breast.  During that conversation, I mentioned that her breast cancer was an aggressive type, which she did not know.  I told her that I thought it was probably a good idea that she had a mastectomy as the recurrence rate with those types of breast cancers were high and that I probably would’ve done the same thing.  She almost started crying.  “You don’t how good it feels to hear someone say that.  I have had a lot of people make me question whether or not I did the right thing.”

A lot of patients ask me, “If you were me, what would you do?”  My response is, “I am not you and so I can’t answer that.  I haven’t had the same life experiences you have had that might influence my decision.”  In many instances I say, “I don’t what it’s like to watch my mother/sister/friend die from breast cancer.”

If you are considering a mastectomy, here is my advice:

1) If you are in your 30’s or 40’s and are diagnosed with breast cancer or have a family history of breast cancer (particularly in family members in their 50’s or younger), get tested for the gene.  If it is positive, then the decision might become a whole lot easier as your risk of developing breast cancer is significantly higher.

2) Seek opinions from a few breast surgeons to see what their recommendations are.  If you have breast cancer and several surgeons recommend mastectomy, it is most likely because they feel that your risk of recurrent disease would be higher with a lumpectomy.  If you don’t have breast cancer and are not gene positive, they can still assess your risk of developing breast cancer.

3)  See a few plastic surgeons.  Most people don’t know what reconstruction entails.  A lot of people are under the misconception that they will walk out of there with better breasts than what they have.  There are many different methods, some which are better for certain body types and there are complications that can be associated with each.

After doing so, you should consider:

a) What is the risk of developing breast cancer (or recurrent breast cancer) with and without mastectomy

b) What are the risks of mastectomy and reconstruction

c) What are the possible outcomes of reconstruction and how much does that matter to you

d) How much does lifestyle matter to you (whether or not you want to have continual tests to monitor for recurrence)

Ultimately, you are the one who has to live with whatever decision you choose to make, not anyone else.  As long as you are informed and have considered all of the options and their possible outcomes, whatever decision you make is the one we should support.

Questions?  Contact Me!

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Teaching Kids the Value of Money – A Failed Experiment

One day, my daughter Katherine told me she wanted a Barbie doll.  (By the way, she already has seven, more than I had in my entire childhood…)

Well, you need money to buy that.

“How do I get money?”

You need a job.

“What’s a job?”

A job is something you do for someone and then someone gives you money for doing it.

“Can I have a job?”

I paused for moment.  I had flutters in my stomach thinking about how I could use this opportunity to teach Katherine the value of money and claim it is as one of my great achievements in parenting.  I had to quickly think of something she could do.  What could a five year old do to earn money?

If you put your pajamas away in the morning, I will give you a quarter.

She gave me a look.  “A quarter?  How about a dollar?”

I was taken aback.  Apparently, this child knew more about money than I had thought.  I started to do the math… a dollar a day, 30 dollars a month, 360 dollars a year?!?  Do you know how many hours of babysitting I had to do as a teenager to make that kind of money?

Why don’t we start with a quarter.

“Okay,”  she said with a bit of disappointment.

The next day I reminded her of her “job”.  She put her pajamas away and I gave her a quarter.  She seemed excited.  This continued for a few days and then Katherine lost interest and didn’t seem to care about the quarters she earned from her “job”.  Instead, she found it easier and more satisfying to take the quarters off my dresser than having to do some work.

Now, as Katherine shakes her piggy bank filled with quarters from around the house and proudly proclaims, “Look how much money I have!”,  I think about when the next opportunity might present itself and how I might be successful next time at accomplishing what I want.  Will she ever understand how hard her mommy and daddy have worked to allow those quarters to so easily slip into her hands?  I guess only time will tell…

Breast Density and What Does It Mean?

I requested a patient return for a screening ultrasound of her breasts.  When she returned, she wanted to know what it meant to have dense breasts and if she needed to have ultrasound ever year.  We hear about breast density quite often and how mammography is limited in people with dense breasts.  But what does that really mean?  How does it affect mammography?

To make it simple for people to understand, I compare reading mammograms with hunting for deer (no, I do not actually hunt):

I am the hunter looking for deer (breast cancer).   If I am looking for a deer in a field with no trees, the deer is easily seen.  In fact, I will be able to see a small deer easily in a field.  If I am looking in a densely wooded forest, I may have more difficulty seeing deer, particularly smaller deer.

If you have fatty (not dense) breasts, you have the “field”.  If you have dense breasts you have the “forest”.  The density of your breasts depends on whether you have mostly fields or forests in your breast.

We grade density on what percentage of your breast is filled with “trees”.  If 0-25% is filled with trees, then you are predominantly fatty;  25-50% is graded as scattered densities, 50-75% heterogeneously dense, and 75-100% is extremely dense.

In reality, it is not that simple.  The distribution of “trees” in the breast can vary significantly and makes classification difficult.  Suppose one acre has 100 trees but they are spread out over the entire acre (100%).   There is enough space between the trees that you would probably be able to see a small deer between the trees.  But what if the 100 trees were packed into 1/10th of an acre (10%)?  If the deer happens to show up in that 1/10th of an acre, you might have difficulty seeing it.  The first scenario would be classified as dense (>50%) and the second would be classified as not dense (<50%).  And what does it mean if we are around 50% (borderline scattered versus heterogeneously dense)?  Our current system of grading breast density doesn’t necessarily correlate with our ability to find breast cancers.

Unfortunately, determining the density of your breasts and the likelihood of finding a breast cancer is not a perfect science.  It is left at the discretion of the radiologist.  Not every radiologist may necessarily agree on whether or not you need additional testing, such as MRI or ultrasound.  So what should you do?

1.  Have a mammogram done.  You cannot tell density by how firm your breasts feel.  There is no correlation.  If your breasts are fatty, then it mammograms may be a really good screening test for you and you may not need anything else.

2.  Have your mammogram read by a breast imaging expert.  The radiologists who read more mammograms are going to be better at it.  An easy way to tell who is an expert is to see if they have received additional training (“fellowship”) in breast imaging.

3.  Have a discussion with the radiologist when you can.  If you get called back for additional imaging, ask to speak with the radiologist.  That is the best person to tell you about your breast density and whether or not you may benefit from additional testing.

4.  If you have family history, consider seeing a breast surgeon.  If you are at increased risk of developing breast cancer, you may benefit from having breast MRIs for screening.  The breast surgeon can determine your risk and also provide you with genetic testing.  If your risk is high enough, you may benefit from additional imaging, even if your breasts are not dense.

I spent about 10 minutes with the patient I described above explaining what her breast density was and what it meant for her.  She was borderline dense and although I felt that I would probably be able to find a small cancer in her breast, her ultrasound was negative and posed no risks (such as short interval followups or benign biopsies).  I told her I was not sure she needed the ultrasound every year, but that if she wanted it, there would likely be no downsides to having it done.  So at the end, we decided together that she should have a mammogram and ultrasound together every year.

As she was walking out the door, my patient turned around and said to me, “Thank you for what you do.  I know you are trying to save lives.”  I was incredibly touched by what she said.  It makes every minute I spend talking to a patient worthwhile.

Being a Soccer Mom – Can I live up to it?

I am not sure if you are all aware, but it’s softball season.

Why is that important?  Well, all the mothers of those girls who are playing softball are going to have to add all the games to their schedules and that can get kind of hectic.  At least that is what my technologist and one of my patients were telling me.

So you have to go to all of their games?  I only remember my mother coming to one of my sporting events when I was in high school.

“Oh no.  It’s standard now.  You’d be considered a bad parent if you didn’t go,” my technologist tells me.

Really?  I suddenly got this sinking feeling.  Just recently, my daughter told me she wanted to play soccer.  This is in addition to piano lessons and dance class.  Not to mention I have another daughter who I also don’t want to deprive.  Right now, I feel like I can barely handle one activity!  As I tried to imagine myself juggling all of these activities after a full day of work, I envisioned being able to drop them off (maybe two of them at the same time) and maybe run some errands before I had to pick them up.  Or, I could have a babysitter drop them off.  Keep the kids occupied so I might have some time to do other things.  Well, that just went out the window.

So, as I checked out the schedules for soccer camps, I wondered if I was going to be able add soccer mom to the list of other titles I carry.  Can I live up to it?  I guess only time will tell…

DCIS, To Treat or Not to Treat? – 2nd part of response to Peggy Orenstein

What is DCIS, or ductal carcinoma in situ?

DCIS means that there are cancer cells in your breast but they have not gone anywhere.  They have not invaded beyond the normal breast structures (ducts and lobules) into the surrounding tissues.  Once the cells break through ducts and lobules, it is called “invasive”.  Once it is invasive, it can spread to your lymph nodes and the rest of your body.

Peggy Orenstein is correct in that DCIS alone will not kill you.  Breast cancer solely in your breast will not kill you.  Even breast cancer in your bones will not kill you.  However, when the cancer cells take over vital organs, such as the liver, lungs, and brain, that is when people eventually die from cancer.

Although some DCIS will never become invasive cancer, DCIS has the potential to become invasive.  Although there are some cancers that may never spread to other parts of your body, all invasive cancers have to potential to go to other parts of your body.   The problem is it can be hard to predict what the cancer cells in your body are going to do.  The blanket statement that DCIS in a 40 year old “quite likely would never become life threatening” (I have seen cases that have proven otherwise) is just not true.  It is not that simple and not everyone can be fit into a one size fits all category.  So, what is the likelihood that DCIS will become invasive cancer?   There are a few things to consider:

1.  How aggressive is the DCIS?   DCIS is broken down into low, intermediate and high grades, which are determined by characteristics indicative of cell growth.  High grade or comedo type DCIS means that the cells are rapidly growing and it is very likely that if you leave it in the breast, you will at some point develop invasive cancer.

2.  How much of it is there?    If you have a large area of DCIS, there are more cancer cells there, and thus a greater chance for one of those cells to start invading.

3.  How much life to you expect to have left?    The more time you let DCIS stay in your breast, the higher the risk for developing invasive disease, as you are giving it time to grow.

4.  Is it hormone sensitive and are you premenopausal?  If it is sensitive to estrogen and progesterone and you are still having menstrual cycles, then you are stimulating the cancer cells to grow.

So, if you are 40 year old woman with high grade comedo type DCIS, regardless of the size, I would say that it is in your best interests to remove whatever DCIS is there, as there is high risk that you will develop invasive breast cancer, probably sooner than later.  If you are 70 year old woman a small area of calcifications that showed low grade DCIS and you have diabetes and heart disease, the DCIS is probably not going to do you in before your diabetes and heart disease will.

And if you are somewhere in between?  It may not be so clear cut.  You will have to ask your doctors what they think the likelihood that your DCIS will be come invasive is.  Then you will have to decide, “Do I want to wait to see if this will become invasive cancer, or, do I want to remove these cells now and not give them a chance to become invasive.”  Most people would probably opt for the latter.  Perhaps the point Peggy is making is that we should be giving people the option, which is not something I am against.  It is okay not to treat DCIS as long as you understand the risks.

However, treating DCIS is reducing your risk for developing invasive breast cancer in the future.  Should it be grouped together with invasive cancers in the statistics? Maybe not.  Should it even be considered a cancer?  Maybe not.  (It should be called pre-cancerous in the least.)  To say that we are “over treating” DCIS is a matter of opinion.  Perhaps it should be looked at as a preventative measure rather than treatment.  It may be one of the few things you can do to reduce your risk of dying from breast cancer.  If someone chooses to do that, I ask, “What is so wrong with that?”

Cancer a second time

Stacy was woman in her early fifties who in for a routine mammogram.  She was diagnosed with DCIS 2 years prior and treated with lumpectomy and radiation and was currently on Tamoxifen.  Because she was only 2 years out from her diagnosis, I read her mammogram while she was there.

I opened up her study.  Oh no, those calcifications don’t look good.  I immediately knew that her DCIS had come back, but this time in two spots.  I went in to talk to her and her husband.  I could immediately tell that she was a nervous wreck.

“There are two new areas of calcifications in your right breast that look worrisome.  We need to do a biopsy to find out what is causing the calcifications.”

She breaks down hysterically and starts crying.  She screams, “I can’t go through this again!”  As her husband tried to help calm her down, I stood there awkwardly, not knowing what else I could say.  I couldn’t say anything that was going to make things better at that moment.  So, I quickly passed her on to my patient navigator to schedule an appointment.

I saw Stacy again a few days later for her biopsy.  She is much more composed and her husband is with her again.  We finish the biopsy and at the end, I thought, I’d better prepare her for what is to come.

“If the biopsy comes back benign, I am not going to be satisfied with those results.”

What do you mean?

“I am really worried that those calcifications are due to DCIS.  If the results come back benign, I would want to be extra sure that they were benign by having a surgeon take out a larger sample and make sure that I didn’t miss something.”  It started to sink in.

If it’s cancer again, I am going to need a mastectomy.

She starts crying again.  After a moment, I asked her what was going through her head.

I don’t want my husband to find me unattractive.  Men leave women for those things.

Ok, I didn’t see that one coming.  With her husband being with her every step of the way, I didn’t think that would be a concern to her.  I reassured her that breast reconstruction had come a long way and that her husband obviously cared enough about her to come to all her appointments.

She asked me to tell her husband what I had told her.  When I did, she started crying again, asking her husband how they were going tell the kids. I said, “I am sorry.  Is there anything else I can do for you right now?”

“No.  Just find a cure!” her husband barked at me.

I will never forget the look on his face when he said that to me.  I felt so small and powerless.  As a doctor, I was supposed to help people and yet it didn’t seem like I could help either one of them at all.  Again, I quickly left the room.

Stacy did ended up having DCIS, the kind that probably would’ve eventually become invasive cancer had it been left alone.  She had a breast MRI and it turned out she had DCIS in the other breast too.  She decided to have bilateral mastectomies.

Though I often see the fear and anger that patients go through, I got to experience firsthand the anger that family members have when their loved one gets cancer.  It reminded me that it wasn’t just the patients who go through emotional roller coasters with cancer, and the roller coaster can be even bigger the second time around.

Just find a cure… I wish I could…

Is Breast Cancer Awareness Overhyped? – First part of the response to Peggy Orenstein’s article

Probably.

In the past month or two, I saw three young girls for a lump in their breast.  One was 19 years old, the others 15 and 12.   The mother of the first girl was recently diagnosed with breast cancer and was finishing up chemotherapy.  I put the ultrasound probe down and saw a benign appearing mass, most likely a fibroadenoma.  I told them that just that.  I looked into both their eyes and there was no sense of relief.

Ok, maybe they need more than that.

Not entirely sure what it is they needed to hear, I continued on:

“The options for management include watching it in 6 months or biopsy.  I am not sure if you would want to consider biopsy, given your own personal experiences and that way you will have a definitive answer.”  The mother breaks down crying.

Oh shoot.  I said the wrong thing.

I gave the mother a moment.  She apologized.  It was okay.  By now I have gotten used to cancer patients having moments where they just need to break down and cry.  Finally, when she was able to gather herself, I tried again:

“I am 99% sure that this is not cancer.  It would be incredibly unlikely in someone of this age to have a mass that looks like this end up being cancer.  If she were my daughter, I would opt for watching it, just to make sure it does not rapidly grow.”  Finally, I see some relief in my patient and her mother’s eyes.

I don’t know know why I even mentioned biopsy as an option.  I almost never suggest biopsy in someone of this age because it is so unlikely to be something abnormal.  If it were my own daughter, I wouldn’t have even worried for a second.   Now, in this situation, the patient’s mother had breast cancer, and that probably contributed largely to their fear, and probably to some degree mine.  But the mother of the second girl I saw did not have cancer.   The mother of the third, 12 year old girl, repeatedly asked me if the several benign cysts were normal.  I couldn’t help but to wonder if this is just a normal parental response, or is there so much hype around breast cancer that we are now making our teenage daughters check their breasts for lumps.

I see the look of fear almost every day in my patients’ eyes.  For many patients, if I offer six month follow up, I get this look of “are you sure?”  I have actually done biopsies when I didn’t think someone needed them because the patient wanted it.  Many women can’t stand the thought of waiting, as though there was a ticking time bomb in their breast.

Awareness is a good thing.  It helps people take initiatives to get preventative services that might actually save their life.  But all of this awareness has instilled a great deal of fear, in not just patients, but their doctors as well.  We have to live up to the notion that early detection will save our patient’s life.  Don’t miss that breast cancer when it’s early!  If you don’t biopsy and something turns out to be a cancer, be ready to explain that to your patient (and possibly their lawyer)…  And it’s not just radiologists who fear it too.  When my partner and I felt that we could safely follow certain things in a year, we received some nasty responses from referring physicians who basically told us that that was not the protocol and we were putting them at risk for lawsuit.  They would no longer send us patients unless we forced people to come in at 6 months for followup.

I agree with Peggy Orenstein about how the “awareness” aspect of breast cancer is borderlining on hysteria.  We, as a community, need to have a rational outlook on breast cancer so we can better focus our energies on prevention, detection and treatment, and make sure that what we are doing is really helping women.