A Son's Response to His Mother's Breast Cancer Recurrence
When the oncologist proclaimed that my mom's cancer had returned, my reaction was not all that different from my reaction to her initial diagnosis of breast cancer: I felt like someone had kicked me in my teeth and punched me in the stomach at the same time. Lucky for me and my family, the recurrence (metastatic breast cancer) ultimately turned out to be a misdiagnosis - but one that took six months to confirm. So, I lived in hell for six months.
Here, I would like to describe what it was like when I was told that my mom's breast cancer had returned and metastasized. By sharing my story, I hope to present personal context for my goal, which is to help readers who are caregivers, family members or friends to move from feeling lost in a jumble of dread and emotions to finding solutions, with recurrence-specific advice informed by the C.O.P.E. (creativity, optimism, planning, and expert information) model. This SharePost also offers patients insights about what their loved ones may be thinking with regard to recurrence or end-of-life concerns.
Men Against Breast Cancer, the first national non-profit organization supporting male breast cancer caregivers, uses the C.O.P.E. model of problem solving to teach men so they are better equipped to support the women they love. C.O.P.E. is a proven problem-solving technique that will enable couples to better navigate the daily crisis of breast cancer and to ultimately improve the quality of survivorship of the patient. To learn more about the C.O.P.E. model, download a free copy of For the Women We Love: A Breast Cancer Action Plan and Caregiver's Guide for Men from the MABC Web site.
At the end of this SharePost, you'll also find a list of some of the most important things male caregivers should know about breast cancer recurrence, adapted from the MABC book.
Charting the Initial Shock of Recurrence
Of course, my overwhelming fear was that my mom was going to die, and along with that came the familiar hopelessness and helplessness I had felt the first time around. I knew that the prognosis was not as good for recurrence as it is for a localized cancer. New to this recurrence experience was an amazing amount of anger and frustration. Why again? And, why now? Mom had already beaten this devil down once. This was just not fair.
Next, the tears flowed in sorrow, not only for my mom, but for myself as well. I must confess that in my mind I had started the grieving process. Unlike the original cancer diagnosis, this recurrence and metastasis seemed like a death sentence. I felt guilty for allowing these normal and natural thoughts to creep into my consciousness.
How to Be Supportive, In Spite of the Shock
Just as with the initial diagnosis, when facing a recurrence of breast cancer, the most important thing that we can do is check with the patient to see what we can do. Ask her what would be the most helpful to her. The goal is to make sure that she knows we love and care for her, as we support her. We can't assume anything about her wishes or needs.
In addition, even though our emotions and stress levels as caregivers or loved ones are not to be ignored, the most important role we can play is that of listener. Listen to what she is feeling so you can be the most helpful and supportive. No one can tell you exactly what those feelings will be because everyone will have a different range; our role is to make sure she knows we are there every step of the way.
Moving Past the Shock
Once my family got past the initial shock of recurrence, my mom rallied us again, as she had following her initial diagnosis. Her strength and courage to reject defeat lifted our heads and our spirits. If Mom could face this head on, I thought, we must, too.
Even though we as a family took what we thought might be our last family vacation at my mom's insistence, we moved forward together. Even though we were all angry, ******, and scared for Mom, she moved us all forward together. Even though we all thought about the reality that our Mom would die, she did not allow us to feel sorrow for her or ourselves.
Rationalizing the End of Life and Our Ability to Cope
It is at times like these, facing a recurrence of cancer or a poor prognosis, that we rationalize the possibility of death. I remember thinking to myself, my mom had a full life, saw my brother and me grow up and start families. Facing a recurrence and the possibility of my mom's death hurts, but I rationalized that she had lived a full life if this was in fact her time.
I also took an inventory of myself and my character. Did I have the strength to be there again? Did I have the strength to be there if things got worse and Mom became terminal... could I bear the pain of watching her die from cancer? I hope I never have to face those questions again, because I am not sure what the answers might be. In the end, for my story, it turned out that my mom's diagnosis of metastasic breast cancer was an error. Those six months of waiting for confirming reports were hell but ultimately uneventful on the recurrence front.
To those of you who have faced this and those of you facing it now, I can't tell you how amazed I have been by the strength of your spirit when confronted with unspeakable adversity. You are all heroes and examples for us as you support the women you love. And, as in my family and, I'm sure, in most of your families, the biggest hero and greatest example for us all is the patient herself.
10 Helpful Things Male Caregivers Should Know About Dealing with Breast Cancer Recurrence
1) Cancer recurrence is not her fault. It's not your fault either.
Today's breast cancer treatments are effective but not perfect. She did not cause this. It is important that you both recognize this.
2) It's okay for her to feel more stressed out by the discovery of recurrence than the original diagnosis of breast cancer.
She may be worn down by the demands of the illness and its treatment. And, she may be aware that the prognosis is worse for a recurrence than it is for localized breast cancer.
3) It's also okay for her to feel less stressed out by the recurrence.
Having been through the diagnosis, she may feel that she knows what to expect, having acquired new coping skills. She may know that she already has a stable support system.
4) You still need to take care of yourself.
As with the initial diagnosis if you are not taking care of yourself you will not be able to be there for the women you love as much as you need to.
5) Be open and honest with your feelings.
Again, it is important that your partner know what your emotions are, and honesty is important. She wants to know how you feel. Whatever your emotions are they are yours and need to be openly talked about without any judgment.
6) Go to the doctors' appointments with her.
Especially if end-of-life issues are at hand, you need to be there to make sure everything has been done and that you are all on the same page as to what course of action you want to take.
7) Gain all knowledge possible and keep others informed.
Make sure that your loved one knows that everything is being done to maximize the quality of her life. Keep children and family members informed about her prognosis and situation.
8) Work with a palliative care team.
If you have reached this stage, invite them to a family meeting to talk with. Formulate a plan describing how you will all work as a team, with the comfort of the patient the goal.
9) If you are facing end of life issues.
If and only if she is interested, it may be the time to discuss the burial, the service, and other final requests... of course this is extremely delicate and must be handled with care.
Make sure she knows her legacy will live on and she will not be forgotten
10) The obvious.
If you are approaching these issues, no amount of words or advice can prepare for all of the emotions you will experience. An imminent loss is not any easier because you know it is around the corner. This is why it is so important to be open and honest so there are no secrets or words unsaid. Be open to supporting your loved ones in new ways, if that is what it takes. This will be your last opportunity to demonstrate you love her and will be there for her.