Your cancer diagnosis - Choosing to keep it private

Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work

SEPTEMBER 04, 2019

Woman Makes Keep Quiet GestureOne of the best things about my work is that I am always learning. Listening to my patients, I hear wisdom and choices that I might not have considered.

I am committed to truth telling, and have resisted the belief that there are times when it may be smarter not to share news of a cancer diagnosis. Over the years of talking with hundreds, probably thousands, of people with cancer, I have learned that I was wrong, and that there indeed are situations where silence is preferable.

If you have been newly diagnosed with cancer or with a recurrence of cancer, it is wisest to pause and consider how much you want to tell. Generally speaking, most people are quite public with a new cancer diagnosis, and many people are quieter about a cancer recurrence. This makes sense as a recurrence usually means that cancer and cancer treatment will be part of the rest of your life, and you don't want to contend with endless discussions and delivered lasagnas and some people assuming that death is just around the bend. At the start, there is often a lot of authentic hope, and it is a matter of getting through a prescribed number of treatments and then going on with life.

As you consider whether and how to talk about your cancer, there are several large groups to consider: family, friends, professional colleagues, and acquaintances. It is obvious that the least concern is due to the last crowd. It is also obvious that you can't avoid telling family members with whom you live or whom you see often. If, for example, you have an elderly, frail parent who lives in a nursing home a thousand miles away, you probably have a choice. In that instance, be guided by the maxim: First, do no harm. If your 96 year old parent is demented and ill, s/he is not going to be able to provide the loving support you would like and may not be able to understand or remember your situation. Remember that, in their generation, The C Word was rarely spoken, and the equation was cancer=death. Knowing that their beloved child has been diagnosed will be difficult. If you see your parent fairly often and have a meaningful connection, it will be better to share what has happened — but, if possible, to do so in person and with a positive and hopeful perspective. If you don't often visit and know that s/he won't remember or understand and may become overwhelmed by anxiety, think carefully about what you say.

I do believe that you always have to tell your children. Remembering the basic rule about sharing honest and age-appropriate information and trying not to disrupt their routines any more than necessary, you can consider when and how much to say. Children who are living in your home will immediately know that something is going on; you must tell them. Young adult children who are away at school or working in another city also need the truth, but sometimes parents choose to wait until there is more information, a definite plan, or exams have been completed. When you talk with children of any age, use the real words and include something like this important line: This is not the time that you have to worry. If that time comes, I promise that I will tell you.

Telling friends can be complicated. Unfortunately, most people find it hard to keep secrets, so you can assume that, once you begin to share the news, others will also learn what has happened. Of course you want to talk with your close friends; you need their loving support, and you value those relationships. Less close friends and acquaintances don't need much information, and you can remind yourself that you don't owe them any more details than you want to share. You absolutely don't need to tell them how big a tumor was or what the doctor said about prognosis or how diffuse is the spread of cancer unless it will help you to be this frank. Otherwise, keep it short and simple, and be prepared to respond to nosy questions by saying: I would rather not talk more about this. If they persist, you can just repeat that or a similar line.

Deciding what to say at work can be really challenging. You will need to speak with your manager, as you will need some time away. It is smart, if possible, to speak first with someone in HR to find out your options. Do you have sick time or short-term disability and how can you sign up for FMLA? If you ask your manager to respect your confidence, she has to do so. Most of us will want to tell our close colleagues and work friends, and that certainly can be helpful in terms of eliciting their support and offers of assistance. People dealing with recurrent or metastatic cancer appropriately worry that others will write them off, assume they are soon leaving the job (or even soon dying), and treat them differently. I can't promise you that these responses won't happen because they probably will. Taking a little time to think about how you want to manage the situation will help. Remember, once you have disclosed your diagnosis, you can't take back the words.

What is the summary here? Remember that there are few hard and fast rules about sharing your news, and that you are in charge of the telling. Consider the consequences, both positive and negative, or different people or groups of people knowing about your cancer. Be realistic about what you can hide, if you choose, and what will be obvious to those around you. Take your time.

Have you chosen to not share the news of your cancer with someone important in your life? Share your story

Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.