Things I Wish Someone Had Told Me Before Breast Cancer

DIMG_7026[1]r. Pamela Munster is a medical oncologist at UCSF Medical Center, who treats patients diagnosed with breast cancer in the San Francisco Bay Area. She herself was diagnosed with breast cancer in 2012 at age 48. As both a doctor and a patient, she has seen both sides of the experience, and has gained unique insight and perspective into what it’s like to face breast cancer.

With wisdom and empathy, Pamela shares some important lessons with the breast cancer community: friends, family, newly diagnosed patients, people living with metastatic disease, or anyone seeking to provide support or raise awareness.

People who want to provide support don’t always know how best to show it.

Awkwardness doesn’t happen because people don’t love you; people just do not know how to talk about cancer. There is a learning period for everyone, and people do not always say the right thing. However, becoming silent to avoid saying the wrong thing only creates more isolation, fear and pain. Here are two simple questions to start a conversation with someone who has been newly diagnosed with breast cancer:

  • “How do you feel?” What was most helpful for me was when friends and family asked me openly how I felt, and kept it neutral. It would give me the opportunity to say, “Fine,” and leave it at that. On the other hand, it gave me the opportunity to say something like, “I’m having a bad day,” and open the door for conversation.
  • “Do you want to talk about it?” This is a good follow-up question, because it allows the person with breast cancer to dictate the tone of the conversation. People can disclose as much or as little as they want, which is empowering and gives them the control. At the same time, it signals that the question-asker is seeking to support that person without being intrusive.  

 “Awkwardness doesn’t happen because people don’t love you; people just do not know how to talk about cancer.”

Emphasize connections; don’t create more distance.

I did not expect a lot of false reassurance—everyone saying, “Don’t worry, you’ll be fine.” It’s really not reassuring, and in fact it creates a bigger disconnect because it implies the other person cannot grasp the enormity of how much things have changed and what you’re going through. Acknowledging the gravity of the situation is often enough to foster a connection.

At the same time, friends shouldn’t be scared to veer towards the mundane details of everyday life. People can forget that even though you have cancer, a large part of your life is still normal. And you don’t always want people to traipse around you either. There’s cancer and then there’s life that goes on.

I found exercise and time outside very helpful, a good run or walk alone or with friends would often calm my anxieties and give me reprieve. Talking about your diagnosis and fears while you walk with someone feels less intrusive than having that person sit across from you and not know where to look.

I could sense a tremendous relief from [my kids] when I continued to play this role – that mom must be fine if she still hassles us.”

Some relationships don’t change.

Although people may surprise you, don’t expect more from a relationship that wasn’t already there. If you had a strained relationship with a friend or family member, breast cancer does not mean it’s miraculously going to change this fact. Just because you have cancer, challenging relationships will probably still be challenging.

Teenagers especially can be angry when their support system seems threatened. My kids were fairly young when I was going through treatment, and I tried very hard to keep the gravity of the situation from them. I did not want to share this stress with my kids, in the same way I would not share worries about my job with them. My husband and I are both oncologists, and so while they knew what cancer meant, I did not want them to see me personally suffer and worry even more.

I also did not feel that going through several surgeries relinquished me from my duties as a mother – I kept business as usual. My kids still had to keep up on homework, do their chores, and be nice to each other. If they didn’t, I’d let them know. I could sense a tremendous relief from them when I continued to play this role – that mom must be fine if she still hassles us. 

Physical changes can be devastating.

A major part of some patients’ experiences is losing their hair. Though my patients are aware this may happen, few are prepared for the emotional shock that accompanies the actual hair loss. I see patients, particularly young women, really struggle with losing their hair. It’s physically visible and undeniable that something has changed. For my patients, I’ve found preparing for this aspect of treatment can make a huge difference. Make sure you talk to your doctor about the possibility of using cold caps: cooling your scalp with specifically designed ice caps can prevent hair loss in many women.

You have very little control over cancer, and very little control over treatment. There are things you can do to prepare for hair loss.

Here’s my advice to those who choose to wear a wig:

  • Consider the weather: If you’re going through treatment during July in Florida, a wig may not be as comfortable as a scarf or baseball cap (some do come with hair). For those in Minnesota in January, you may prefer to invest in warm hats instead.
  • Start sooner: You wouldn’t go to a store the day before a wedding and buy a gown. For better or worse, this is a very impactful event, and it’s important to prepare.
  • Take your time: Start looking for a wig before you’ve lost your hair to get a better match in color and texture to your natural hair, and to not feel rushed through the buying process. It can take up to six months for hair to grow back, so pick a wig you’re not going to get tired of.
  • Try out a new haircut before you lose your hair: You can field compliments and attention around your new style before you start feeling more private.
  • Consider when you’ll cut your hair: Waking up to a pillow full of hair can be devastating. Sometimes it’s better to cut your hair before it starts falling out in a significant amount.
  • Use makeup and dress well: Putting yourself together and looking smart will go along way to feel more in control.

Additional tips here and here.

“The growth and personal strength that patients gain from going through the diagnosis and treatment is indescribable.”

Healing takes time.

Whether it’s intentional or not, there can be added pressure from family and friends to stop talking about cancer after a patient is out of active treatment. Family members may be exhausted from the care and trying to create a return to normal, and that lag can cause a lot of loneliness. This lag between when a patient is physically out of treatment and mentally out of treatment is a common issue for people with cancer, and also completely normal. I call it a “post-treatment pit” where everyone is convinced that this is done and over with, and expects you to have put this behind you, but you just can’t. Often patients feel a sense of uncertainty once treatment visits stop. It takes time to regain the confidence that life will go on and getting used to the physical changes that come with surgery.

For me, it took two years to not have cancer on my mind all the time. You’ve been facing your own mortality, and it takes time to come back and feel safe again, or adjust to your new reality. Allow yourself time to adjust and do not expect to be back to normal in six months. This is not a process that can be rushed, nor should feelings of anxiety, fear or depression be ignored. However, the growth and personal strength that patients gain from going through the diagnosis and treatment is indescribable.