Breast Cancer Support Groups: Creating Layers of Support

Phyllis Johnson Health Guide
  • Finding the right kind of support can be difficult for breast cancer patients.  Combining support from family, other breast cancer survivors, and on-line resources can help reduce the feeling of isolation many people feel after a breast cancer diagnosis. No one should have to go through breast cancer alone.  We need layers of support.


    The first thing most people do when they find out they have breast cancer is turn to their family and friends for support. At their best, our family and friends are good listeners, and they often provide the practical support we need-rides to the doctor, babysitting, meals, and hugs.  However, unless they have had breast cancer themselves, they may not understand some of the medical decisions we have to make or the emotional toll that breast cancer takes.

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    That's where the formal support group  comes in. These groups, often run by a hospital or cancer organization, offer a trained professional to keep the group on track.  The support group I went to following my diagnosis with inflammatory breast cancer (IBC) started the meeting with information about topics like how to choose a prosthesis, or ways to deal with baldness.  Then the last forty-five minutes was a time for questions and venting.  An oncology nurse and a psychologist led the group together.  The psychologist taught us guided meditation techniques I still use today to keep me calm.  This group was designed for new patients and ran about nine weeks.


    Other professionally-led groups are long-term groups.  The group never ends.  New people come.  Some people stay around indefinitely to help the new ones, and others leave when they finish treatment.


    "I'm not a joiner," you say.  "I could never share my intimate worries with a bunch of strangers."  For some people joining a face-to-face support group is scary.  I encourage people to give them a try because they are such a great source of information about your local resources.  You may make a new friend who can understand exactly what you are going through with both cancer and with the frustrations of dealing with the medical records department at your local hospital.  Knowing someone local to go for coffee with when you are having a bad day or want to share a cancer victory is a huge source of support.


    Some non-joiners create their own personal support group.  They find a mentor who has already finished cancer treatment to call.  They make a friend in the chemo room to get together with outside the doctor's office.  These informal networks of women affected by breast cancer can provide excellent emotional support.  However, they are not the best source of medical information because each woman's medical situation is unique.


    Another important layer of support is right at your fingertips in your computer.  Websites like HealthCentral offer informative articles about your medical questions.  In the middle of the night when a worry gnaws at you, you can scan the articles at HealthCentral.  If you don't find the answer to your question, you can type it in the questions section, and the next morning a patient expert will probably have an answer for you before your doctor's office opens.  (We are not always that fast, but PJ Hamel and I coordinate our schedules to try to have someone available to answer questions every morning and evening seven days a week.)  At HealthCentral you can create your own blog of your cancer journey, and there will be people reading who understand your rants and your victories.  You can whine all you want.  Everyone reading your post has had whiny days like you.


    If your cancer is unusual-you are under forty, you have IBC, you have the BRCA gene-you may feel that other breast cancer patients understand only a part of your situation.  I felt a bit out of place in my hospital's support group.  Most of the participants were retired women in the sixties and seventies.  No one else was facing chemo, mastectomy, and radiation.  I imagine the young woman in her early thirties who came every week with her mother felt even more out of place.  She had all kinds of questions about fertility that the rest of us didn't have to worry about.  I benefited greatly from going, but I needed more.

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    That is where the specialized support group can help.  I joined the mailing list at ibcsupport. There I could ask specialized questions and get emotional support from others in my situation.  A similar mailing list exists for women with Stage IV breast cancer.  Young Survival Coalition  for women under forty and FORCE for women with genes for breast and ovarian cancer have both conferences and on-line forums for women with those concerns.  I am seeing more and more specialized breast cancer groups springing up on Facebook.


    For the first three years after my diagnosis, I managed on three layers of support.  My family and friends were great for emotional support.  I lunched with my informal network of breast cancer survivors, and I stayed in close touch with my on-line friends at ibcsupport.  But I was missing face-to-face contact with other people with my kind of cancer.  Before I left for vacation one summer, I emailed Linda who lived in Memphis to see if I could have lunch with her on my way home.  We set up a place and date.  Linda invited two other people she knew with IBC, and we had a wonderful lunch.  It was such a relief for all of us to actually see IBC survivors.


    Since then I've met many people for a single lunch or breakfast when I'm traveling, but even dearer to me is a new form of support that has developed in North Carolina in the last six years.  Debbie and Charlotte organized a lunch meeting for women with IBC in North Carolina.   North Carolina is a big state, so we meet in the middle once, sometimes twice, a year.


    Last Saturday, eight IBCers plus our friends and family gathered in Cary to share our stories.  This lunch answers my craving to put faces to my on-line friends.  There is something about hugs and voices that email and Facebook cannot provide.  The conversation bounces from diagnosis horror stories to clinical trial tips.  Women who have been through reconstruction take a trip to the ladies room to show others thinking about it what they might expect.  The experience of someone diagnosed with bone mets since our last meeting reminds all of us to call our doctors about new aches and pains.  Just seeing a long-term survivor offers hope to those just starting their journey.


    Cancer treatments can leave a person too exhausted and depressed to go for a walk with a friend, go to a support group meeting, or to write an email.  However, don't give in to the temptation to go to bed and pull the covers over your head (at least not for more than a day).


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    Cancer is not a do-it-yourself project.  Do not try to go it alone.  Stack up layers of support from family, friends, the medical community, and fellow cancer survivors.  Use the computer.  Meet face to face.  Reach out.  You will be glad you did.



Published On: June 08, 2011