December 2010 Ask the Expert: Communicating With Loved Ones
Talking about cancer with those close to you, especially your partner, immediate family members and close friends, can be one of the most challenging aspects of a breast cancer diagnosis. Communication is the basis of any intimate relationship, but talking openly about breast cancer can be frightening. And what you may need may not match what your loved ones are able to give you.
During the month of December 2010, Living Beyond Breast Cancer expert Neal Niznan, LCSW, answered your questions about how to how to help you, your partners, family and friends feel more comfortable talking about your breast cancer experience.
I am a one-year survivor of triple-negative breast cancer. My diagnosis and treatment plan changed rapidly as my tumor grew from 2 cm (we’ll handle that with a little lumpectomy) to 6 cm (mastectomy plus some muscle damage, dose-dense chemo and radiation). Many members of my family, most importantly my husband, speak of my experience as “glad that's over” or “proud of you for getting thru it.” But it’s not over for me, and I’m not through dealing with it. I have peripheral neuropathy related to chemo, some bouts of phantom nerve pain, fatigue and lymphedema from surgery and radiation, and it still hurts while I am learning to use my arm and chest muscles again. Plus, there are so many websites speaking of breast cancer recurrence rates as low as 2 – 10 percent, but my doctors put mine as probably closer to 50 percent. While I have resumed most of my life prior to diagnosis, I do have some limitations, and I still need emotional and physical support. I understand the desire to put my cancer behind us—I have it, too! But I think there is a bit of denial going on, bolstered by misinformation gathering from surfing the web. Any suggestions?
I have metastatic breast cancer so I will never really be done with treatment, but many people don’t understand that I’m dealing with permanent changes to my lifestyle. Can you give me some tips on how I can communicate to my friends (who are always asking how they can help) about my changing needs?
Question: I am a one-year survivor of triple-negative breast cancer. My diagnosis and treatment plan changed rapidly as my tumor grew from 2 cm (we’ll handle that with a little lumpectomy) to 6 cm (mastectomy plus some muscle damage, dose-dense chemo and radiation). Many members of my family, most importantly my husband, speak of my experience as “glad that's over” or “proud of you for getting thru it.” But it’s not over for me, and I’m not through dealing with it. I have peripheral neuropathy related to chemo, some bouts of phantom nerve pain, fatigue and lymphedema from surgery and radiation, and it still hurts while I am learning to use my arm and chest muscles again. Plus, there are so many websites speaking of breast cancer recurrence rates as low as 2 – 10 percent, but my doctors put mine as probably closer to 50 percent. While I have resumed most of my life prior to diagnosis, I do have some limitations, and I still need emotional and physical support. I understand the desire to put my cancer behind us—I have it, too! But I think there is a bit of denial going on, bolstered by misinformation gathering from surfing the web. Any suggestions?
Mr. Niznan: I am happy to hear that you feel you are resuming most of your life prior to being diagnosed.
Your question raises a valid point concerning your perception of the breast cancer experience and those around you. Only you know how you feel both physically and emotionally. Even though it has been a year since diagnosis, each day is still touched in some way by all that you have gone through.
Your family and friends are sincerely proud of you for coping with everything during treatment and feel relieved that you do not have to face the challenges of treatment. Their desire for you, and themselves, is to move forward and get back to “normal” again. Only you really know what this “new normal” in your life is like. You are right in saying it feels like it is “not over” and you are “not thru dealing with it.”
You may need to take initiative and talk more openly with your spouse and close friends about what this phase of the breast cancer experience is like for you. You are not asking them to deny your experience or try to make it all better for you any more than they could have changed your diagnosis initially. You just want them to listen and understand what you go through on a daily basis. You are asking them to be there for you on both the good days and on the more challenging days as well.
The fear of recurrence you mentioned is inherent in many cancer diagnoses. It feels very real and at times comes out of nowhere when you least expect it. This fear may be experienced by you and family and friends, but it may be difficult to talk about it. No one who supports you wants your breast cancer to return. The fear is that if we talk about being afraid of recurrence, it will somehow happen.
You are right in saying that information on the web, which does not pertain specifically to your breast cancer diagnosis and treatment, can be interpreted by the reader to either inflate the fear or cover it up. Either way it impedes others from talking about what they are feeling and enables them to hide behind professional-looking medical advice.
It is OK to talk about your fear of recurrence. It is also important to temper the intensity of that feeling with a realistic balance between fear and hopefulness based on the prognosis shared by your oncologist.
Mr. Niznan: Speaking to your children about what is happening is very important. Some parents initially tell me they want to keep everything from their young children and pretend nothing is happening. Trying to maintain this secret only adds more emotional stress to an already stressful situation and is very hard to pull off.
Parents often think their children will not be aware that something is going on, but children are very tuned in to the daily schedule and flow of the family life. The structure of the family routine helps them feel comfortable and safe. They will know something is going on when the routine changes due to doctor’s appointments, treatment schedules and increased phone calls from relatives and friends, not to mention a myriad of side effects from treatment. It is better to tell them what is happening. Without your guidance they are left to construct their own explanation, and it usually is a scarier scenario than what is actually happening.
How you explain your diagnosis and treatment depends on the age of your children. You need to use language that is age appropriate so they can understand. Because this is happening to “the family,” it is suggested that you talk with everyone at the same time.
Tell them that the doctor has found something in your breast that should not be there. To make it go away, you will have an operation and take some medicine. If you know your treatment plan, you can explain how treatments will impact the family routine.
Next, ask your children to tell you what they heard you say. It is important to correct any misconceptions they may express like they caused you to get sick or they can get sick by touching you. Let them know that you will always answer any questions they have about your illness and that they are allowed to tell you how they are feeling about the disruptions in the family routine.
End your discussion with a hopeful message like, “The doctor feels that the medicine will make it go away, and I will start to feel better.”
Some other points to consider:
- Prepare what you are going to say before talking with your children, and make it consistent with what you tell other relatives and friends who will interact with your kids.
- It is ok to say the word “cancer.” It’s better for your children to hear it from you and ask you questions about cancer than to overhear it from a neighbor, relative, coach, etc.
- Periodically ask your children how they feel about your cancer and how it is affecting them and the family. It is OK to share your feelings, too. Expressing your feelings gives them permission to talk about their feelings. When parents do not express their feelings, there is an unspoken rule that says, “We don’t talk about this in our family.”
- Do not be put off or hurt when after talking with your younger children, their immediate response is “OK,” and they run off to watch their favorite television show. Know that they heard you but may not have any questions for a few days.
- Let significant adults in your children’s life like teachers, coaches, etc. know what is happening so they can emotionally support your kids if necessary. They can also let you know if they see any overt changes in your child’s attitude or behavior.
Mr. Niznan: This is the million dollar question. Know that over time, you will have little control over who knows about your diagnosis. I propose sharing this information on a “need to know basis.”
Only let those who you feel are really going to be there for you and support you both physically and emotionally be the first to know, even if it is just two or three close friends. You can always widen the circle later to include others.
Once the word is out, many well-intentioned friends and family will want to help, but many times they may be clueless to what would really benefit you. In fact, their efforts may be counterproductive and their supportive comments may be anything but. After ending a conversation with them, you may wonder how they could have been so insensitive!
When someone truly wants to help but does not know what to do, give them a task they are capable of doing and that would really benefit you. In this way, it is a win/win. They get to feel like they have helped, and you receive something you need at the time.
Mr. Niznan: You can feel completely drained emotionally by continually answering the onslaught of phone messages asking about scan results or if you would like another lasagna this week. Your energy and stress level would be better served by assigning a “point person” to send and receive information.
There are also websites that keep family and friends connected by logging on to your “care page.” You only have to write one update for everyone else to read.
Surround yourself with only positive supportive people. You may be blessed to have one special person in your life that, without being asked, just knows what to do. They do what is necessary, behind the scenes, orchestrating your support so you don’t have to. They are the ones who are always there for you and at times can just sit next to you and not need to say anything. I call them the “stage managers.”
Try not to chase after your best friend who you have known for a zillion years and now, when you need them the most, is nowhere to be found. Their absence, as hurtful as it feels, is more a reflection of their own fearfulness about your illness and not about your friendship. You may be pleasantly surprised to find when treatment is over, they will be right back in your life like nothing happened.
Mr. Niznan: How much information you share depends on who you are talking to and their level of understanding about breast cancer.
Share with others whom you feel can be supportive to you and also keep your information private. It may be best in the beginning to use one general statement regarding your diagnosis and proposed treatment.
Some may react with excessive worry and concern which in turn may raise your level of worry. Give more information to those who can understand the details and can provide support.
Question: I have metastatic breast cancer so I will never really be done with treatment, but many people don’t understand that I’m dealing with permanent changes to my lifestyle. Can you give me some tips on how I can communicate to my friends (who are always asking how they can help) about my changing needs?
Mr. Niznan: Ask directly for what you need from those you feel can provide it. Living with metastatic breast cancer with continual treatment is a relatively “new” concept for many. They may not fully grasp your ongoing physical and emotional needs. You may have to educate those you feel can understand about your cancer and its treatment.
Mr. Niznan: Always be polite and thank them for their concern. Then, explain that you have designated today as a “cancer-free day” where you give yourself a break from anything cancer-related. On these days, you do not even talk about your cancer. You appreciate their support and will keep them informed if anything changes.