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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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…