What I Wish I Knew: Ask Questions Before Surgery

The cancer journey can be a long and winding road. On my 19th wedding anniversary last year my journey began when I received “the call.” I was diagnosed with invasive lobular breast cancer and my treatment would begin with a bilateral mastectomy. As part of the whirlwind of testing and doctor appointments, I interviewed two well-respected plastic surgeons about reconstruction. They would be placing tissue expanders during the same operation as my mastectomy, then later replace them with more permanent breast implants. The first surgeon closed our discussion by highlighting his complication rate and the risks involved. I walked out of the room feeling burdened by the negativity. I didn’t want complications and I did not want to think about the possibility of them. I’m a glass-half-full kind of gal and he seemed to be no match for my optimism. The second plastic surgeon said that he had a 0 percent complication rate. Wow! He was full of positivity, noting how he would be able to make me forget about my diagnosis once he restored me to my original shape. It couldn’t sound any better than that.

About 5 days home from the surgery I felt a tightness in my chest and noticed that my left (non-cancer) breast had transformed into a Dolly Parton-like feature. It was late at night (of course, it seems all medical troubles happen at night or on the weekends). I called my plastic surgeon twice but didn’t hear back until the morning. I was left to a night of worry and fear. What had happened to me? Was it an infection? Should I run to the ER? Is my body rejecting the expanders? Lo and behold I had a seroma, a pocket of fluid that sometimes forms under the skin after a reconstruction. I endured a week or so of frequent visits to the surgeon before it began to clear. It was a very frightening experience. Knowledge is power and I was powerless because I didn’t know anything about the risks and complications of a mastectomy. At the time, I simply dealt with the situation and moved on because, as someone with stage III breast cancer, I had a long road ahead of me.

I completed chemo in April and 25 sessions of radiation in June. Then, on September 18th, I had another surgery. Doctors found cancer cells in margins of the removed tissue from my initial surgery, and the skin across the bottom of my right breast had to be removed to assure that no cancer was left behind. In my pre-op meeting I was told the operation would require a DIEP flap surgery. It sounded a lot like a light tummy tuck. They would remove skin and blood vessels from my abdomen and transplant them to my breast.

What was supposed to be a 6 to 10 hour surgery lasted 12 long hours. I awoke from anesthesia with poor blood flow to the new breast skin. My hemoglobin dropped so low that I was given a blood transfusion. I spent my 20th wedding anniversary on bed rest in hopes of saving what was a dead flap. On top of developing shortness of breath and pressure sores, my abdominal incision opened about 2 weeks after the surgery and required wound care. I was not prepared for any of this. It was a harrowing 3 days in the ICU and weeks more on bed rest. Because my doctor and I never discussed these possibilities before surgery, I felt embarrassed to even ask questions about what was happening to me. Again I was in a position of fear, doubt, and confusion at a time when my body was struggling to regain balance. It took a long time for me to get answers. What do I wish I knew then? I wish I had asked the questions BEFORE I was in the hospital.

Let’s hope that you never have to worry about dealing with complications from a surgery. It’s great to be optimistic, but you should not live with your head in the sand assuming that everything will be perfect. If I could only go back in time, I would give myself the following advice:

Don’t be afraid to discuss all aspects of surgery with your doctor, the good, the bad, and the ugly. Who will be participating in the surgery? Who will be the lead surgeon? What is their complication rate? If you are having a flap procedure, what is their failure rate and how do they calculate it? What are the possible complications that could be encountered during surgery, in the hospital and once you are home? What is Plan B if complications arise in the operating room? What are the risks involved?

One surgeon I met recently for a second opinion presented me with a long list of risks and complications and had me sign the list after we discussed them. I have a new appreciation for that kind of thoroughness.

If you do experience complications, you are not alone!! Never be afraid to call your surgeons office any time, day or night. Be persistent if they do not call back. Know the signs of infection and don’t be afraid to go to the ER if you encounter them. And in non-emergency situations, online groups are an excellent resource for first-hand experience. Facebook has support groups for most cancer types and surgery types. Wherever your journey takes you, know that you have the strength and knowledge of an army of women that can hold you up.

As I continue along this winding road, working toward recovery, I am still trying hard to be a glass-half-full kind of gal. I wish you the best and I hope that my experience can help ease your journey.

If you are recently diagnosed and would like to learn more, be sure to check out our Guide for the Newly Diagnosed (PDF) and read our content on breast reconstruction. If you want to participate in the What I Wish I Knew series, you can share your story with Living Beyond Breast Cancer.