Many of us travel a similar road once diagnosed with breast cancer…surgery, chemo, radiation and all that goes with it. Eventually we reach the end of active treatment. For some of us the road has a different course… more aggressive treatment, harder choices to make and active treatment that continues indefinitely.
For women diagnosed with rare and very aggressive cancers, women who test positive for the BRCA1 or BRCA2 genetic mutation, women diagnosed with breast cancer while pregnant and women whose first diagnosis is metastatic breast cancer, the road is long and sometimes unending.
When a woman tests positive for for either BRCA 1 or BRCA2 genetic mutation, her treatment road necessitates making choices that include having both breasts removed and her ovaries. If she has children, she has to decide how and when to tell them about her situation and encourage them to get tested to see if they are caring the gene mutation.
For women diagnosed with breast cancer during pregnancy, the treatment road means choices such as terminating an early pregnancy; beginning treatment immediately; carrying the child to term before beginning treatment; choosing to have treatment while pregnant if her medical care team feels it is safe to do so.
A pregnant woman with breast cancer lives with the fear of harming her unborn child if she has treatment while pregnant, or chooses to be induced and give birth earlier than her expected due date.
For women whose first diagnosis is metastatic breast cancer (breast cancer that has traveled beyond the breast to distant organs such as the lungs and bone), their road is breast cancer as a chronic disease with ongoing treatment, not just to prolong life but to provide a quality of life.
All of us who go through breast cancer need support, but women in these circumstances especially need the help and support of others who are going through exactly what they are going through.
While it may be unrealistic to expect to find support groups locally for each of these “road less traveled” circumstances, the Internet is a great resource for locating support sites and others living and coping with these situations.
The following sites offer up to date information. Some have message boards, others share stories of hope and practical suggestions for getting through the rough spots.
Paget’s Disease of the Nipple - www.breastcare.com/common_clinical_pagets.htm
Inflammatory Breast Cancer – The IBC Network Foundation theibcnetwork.org and IBC Foundation www.eraseibc.com/ibc.html
BRCA1 and BRCA2 – ww5.komen.org/BreastCancer/InheritedGeneticMutations.html
Triple Negative Breast Cancer Foundation - www.tnbcfoundation.org
Her2 Support Group – www.her2support.org
Hope for Two – www.pregnantwithcancer.org
