It's Not Over When it's Over

This article really sums up everything I'm feeling...

It's Not Over: Life After Breast Cancer
By Christine Haran

It's often assumed that coping with the shock of a breast cancer diagnosis is the most difficult part of living with breast cancer, but women who have had breast cancer know that life is often hardest after treatment ends.

While women and their friends and family are eager for life to return to normal, many women struggle to move from the crisis mode they entered to get though treatment back to everyday activity.

Women who have had breast cancer often say that they are physically and spiritually transformed by having faced a life-threatening illness. These changes can permeate all facets of life and both strain and strengthen relationships.

Hester Hill Schnipper, a breast cancer survivor and chief of oncology social work at Beth Israel Deaconess in Boston, is the author of After Breast Cancer: A Common-Sense Guide to Life After Breast Cancer, which was published by Bantam in October 2003. Below, Schnipper explains how women and their loved ones can learn to cope with the complexities of life after breast cancer.

Why is finishing treatment sometimes more frightening than actually undergoing treatment?

There is a huge relief associated with being completed with the treatment, but it's also frightening for lots of reasons.

The most important one is probably the feeling that, "Uh-oh, now I'm not doing anything active to fight the cancer, and what if there are cells left in my body lurking somewhere that now will be free to flourish and grow."

It's also frightening because while going through treatment, women become accustomed to frequently seeing their doctors or nurses or other caregivers. Particularly during radiation, which is a daily occurrence, the techs that administer the radiation can feel like your closest buddies for a month or six weeks. To all of a sudden be cut off from people who have been so reassuring by being told by your doctor, "Okay, you're done, see you in six months," feels as though you've kind of been pushed out the door precipitously.

The last thing is that because chemotherapy particularly can be so physically arduous, many women have used all of their emotional and physical energy just to get through it day-by-day. When the crisis is over, and you have a chance to sit down, you think, "Oh, my God, what did I just get through?"

How does it affect families and friends?

Most people's family and friends are hugely relieved that it's over and are more than ready to have life get back to normal, though it might be embarrassing for them to admit it. By the time the months of treatment are over, they've really had it, even if they've been wonderfully loving and supportive and helpful all along.

Also, many friends and family members think that when the treatment is over, breast cancer is over. Lots of people really are unaware that there's never a way for a woman to be promised that the cancer will never come back, that she is still very much living with all the same kinds of uncertainty and fear that she's been living with since the moment of diagnosis.

Do you have advice about improving communication about this?

Probably the best advice is to try to be as honest and open as you can about what you're feeling. Women often need to be really specific with their families and friends about what they need. That gets tricky because what we need changes daily. Sometimes our families and our friends really can't win, because on the one hand, we get very tired of being asked in the very sympathetic voice, "Oh, how are you?" when we want to be treated as though we're normal. And then five minutes later, we want somebody to remember what we've been through, and that we may still really be struggling with this.

What shouldn't people say to someone who has just finished treatment?

Probably one of the ones I hear the most often from women is: "How do they know it worked?" Or, "Are you cured now?" Or, "How are they going to check and make sure the cancer's really gone?" Of course, the answer to all those questions is there's no way to know for sure, and questions like that generally just make the woman feel scared all over again.

How can women cope with the longer-term physical effects of treatment?

The rule of thumb is that it takes approximately as long as the total duration of treatment to feel really well again. So it generally takes months for somebody to really feel as sturdy and well as she was feeling before her breast cancer diagnosis.

Beyond hair growing in and the return of energy after chemotherapy, there are some physical changes and side effects that persist for a long time. The most obvious one is probably if there are physical changes caused by surgery. If a woman has had a mastectomy or reconstruction, or even with lesser breast surgery, breasts usually look different than they did before and they certainly feel different after radiation. Getting used to what your new body is like takes a while.

Are there any special considerations for women with young children?

For most mothers, one of the most, if not the most, upsetting thing(s) about breast cancer is worrying about dying and leaving children before they're grown. Of course, moms of young adult children are also very much needed by their kids.

Through treatment, particularly if a mother has been really sick, she may have not been able to be the fully active participatory mom that she usually is. She probably hasn't been able to drive the same carpools or get to all the games or just not been able to be there in the same ways. That just has to be rebuilt gradually as energy and strength come back.

What about the kids?

Mothers also need to give their children chances to talk about cancer. What we find is that most kids behave as though nothing happened because most mothers have made an heroic effort to have their kids' lives go on as normally as possible. And that's the best thing we can do for our kids. But you can be sure that your children did notice. They may, at some point, want to talk about it, and they may not.

My best advice to women is to occasionally bring it up in conversation. Perhaps say at the dinner table, "I have a doctor's appointment tomorrow and I'm feeling fine, but I'll be glad when we're sitting here at dinner tomorrow night, and I can tell you all that everything went well at the doctor just as I think it's going to." Just make occasional comments to suggest that the cancer experience is an acceptable topic and that any time the child wants to say something about it, he or she can feel free to do that—that it's not taboo.

How can breast cancer be spiritually transforming?

I certainly experienced it myself, and I hear it from women all the time, that just the way they aren't any atheists in a foxhole, there aren't too many women who've been diagnosed with a life-threatening illness who don't begin to really grapple with the big existential questions in life. For lots of women, that means beginning to think about whether they believe in God or some kind of guiding spirit.

Lots of women find that they return to a church or a temple that they maybe attended in their childhood. Other people may go church or temple shopping and try to find a place that feels comfortable now. Plenty of people never feel the need to join any kind of organized and formal religion, but do feel a need to get their own sort of souls in order as they think about "How do I find meaning?"

How do women learn to live with the fear of recurrence?

For most of us, that is the very hardest part of breast cancer. We can never be promised that we can stop worrying. We know that something like 60 percent of all recurrences happen in the first three years, so after three years, I tell women they can let out half a sigh of relief. Then with every passing year that you stay well, the odds increase that you're going to stay well. So things look brighter after six years than they did after four years. But the truth is that breast cancer can recur years later, so we're never completely out from under the cloud.

It really helps most women to talk about it. Even though the instinct might be to not express the fear, bottling it up probably makes it worse. To find a person or a couple people or a support group where a woman can talk about what she's afraid of is helpful.

In the early weeks, months, even years after finishing treatment it is so hard to build a life that is the way you want it.

I want to reassure women that no matter how sad, scared, terrified or crazy you feel in the first weeks and months after finishing breast cancer treatment, it really does get better as time goes on. There are lots of us living out there and living very well and very happily.