We have choices!

A staggering 70% of women who undergo breast cancer treatment are not fully informed about their options for reconstructive surgery, according to a recent report by the American Society of Plastic Surgeons. A woman being given a cancer diagnosis is indisputedly at one of the most vulnerable times in her life, and is forced to make quick decisions. Most are not encouraged to educate themselves. The internet has provided us with the world at our fingertips, yet some doctors actually discourage this form of research!   Unfortunately, the system fails us when our doctors don’t give us complete information. Informed consent to any surgery or procedure demands that full relevant information is provided so that the patient is fully aware of all available options, risks and benefits. We need information about the options for surgical removal of the cancer–lumpectomy and radiation vs. mastectomy and possibly avoiding rads. We need to know whether a lumpectomy will be so disfiguring as to necessitate reconstruction to restore the breast’s natural shape. We need to know that today’s mastectomy is not the same as it was when our mothers endured this–that breasts are not necessarily “chopped off”, but rather, the inside tissue can be replaced with fat from another part of our body, providing a warm and soft breast that lasts forever. We need to know that implant reconstruction carries an extremely high complication rate, including capsular contraction, infection even years later, rupture, etc. We need to know that reconstruction using core muscles can cripple us or compromise our posture and function as we age. We need to know what the latest surgical techniques are and where to get them. We need to know these things from the onset, so that we can make the best choices for ourselves and for the best reconstruction result possible.

These are actual internet forum posts, identification withheld to protect privacy. Any spelling or grammatical errors are left intact. Explanations of terminology are in parentheses.

“My orginal BS (breast surgeon) never gave me the option of MX (mastectomy), just said lump and rads (radiation). If she had given me a choice I would have done this last year and skipped rads altogether. It was not fun and I had lots of problems including the permant nerve damage. I had no idea that radiation would make reconstruction so much more difficult. I am trying not be upset about not being given all my treatment options upfront. Just trying to move forward from here.”

“I was given my diagnosis by a doctor I’d never met before. He told me the cancer was small and that the treatment was lumpectomy and radiation. It was only through talking to friends and a relative who’d had a bilateral mastectomy that I discovered I could avoid radiation by choosing mastectomy. Once I researched the latest procedures for reconstruction and saw photos online of DIEP (flap reconstruction using abdominal fat without use of muscle) breasts, my mind was made up. I didn’t want to risk radiation damage to my heart or lungs. I had bilateral mastectomy with immediate DIEP and never looked back. I’m so glad to be off the mammogram/ultrasound/biopsy/fear roller coaster, and am indebted to my cousin for encouraging me to research alternatives.”

Sadly, this woman didn’t have enough information about radiation until it was too late to make another choice: “I still remember the day I was presented ‘the list’ and the acknowledgement form I was given prior to rads. “The list” was the known possible side effects of radiation treatments — you know, the potential heart attacks, the weakened ribs that might break when you sneeze, the heart damage, and that’s just the ones I can remember offhand. This list was presented to me while I was sitting in the waiting room wearing the flimsy gown, moments before I was to be called in for the setup.”