Woman to Woman: What It's Like to Have Breast Reconstruction Surgery
by Sheri Waldrop, RN, BSN

You may be faced with the decision about whether you will have reconstruction surgery after a mastectomy, and are wondering what it is like. During this emotional time, questions will come up and you may feel unsure about what to do. Brochures answer clinical questions, but it would be nice to hear from other women who have undergone this surgery.

We agree, and have contacted several women who have undergone breast reconstruction surgery. Here these women share their personal experience with breast reconstruction and what it was like for them. Their responses are based on the different choices that each woman made.

Surgery Right Away or Wait?

Some women choose to have a temporary expander put in immediately after the mastectomy. Andrea* is 67 years old, and chose this option: "They put the expander in when they did the mastectomy, so I never had to deal with waking up from surgery and seeing myself flat on one side. I'm really glad I decided to have it done at the same time."

Marlyn is 53 years old and was diagnosed with breast cancer in 1996. She also opted for immediate breast reconstruction. "Because I was dealing with so much at that time…my own daughter was diagnosed with leukemia, I felt that reconstruction was a 'quick fix' for myself. I didn't want to have to bother with a prosthesis. I had so much other stuff going on. This made me most sense for me at the time."

Sandy, who lives in New York, chose to delay reconstruction surgery. "I told my doctor I didn't want it at first," she remembers. "I changed my mind after going a whole summer wearing the prosthesis and the special bra. I'm pretty active and it was uncomfortable, so I told my doctor I changed my mind, and that I wanted the surgery. I'm glad I did."

Even if a woman opts for immediate surgery, she may choose to have a revision done later. Bea is a 61year-old registered nurse who had her original surgery done in May of 2000. She shares, "About one year later, I realized that my breasts were not evenly proportioned, and I felt disappointed. My plastic surgeon (Dr. Shamoun of Newport Beach, CA) is very caring, has a great talent, and revised my surgery. I had another expander put in. Then, three months later, I received my permanent gel implant and had a nipple put in place at the same time."

Bea feels her experience has been good in part because she took the time to research surgeons who do excellent work. This is how she found Dr. Shamoun. "Choose a well-established oncologist with a Breast Care Center," she suggests. She is also happy with the fact that before surgery, she was well informed about her surgery options: "We do not need surgery. It is a choice. After much research, and reading information that I received from my doctors and other sources, I decided to have surgery. It is important to be informed of all of our options. We are faced with many decisions and must feel perfectly comfortable with our choice."

The First Few Days Are The Hardest

When asked about any discomforts they experienced after the surgery, the women I interviewed were all in agreement: the first two weeks are the hardest; then things get better.

Most of them, like Andrea, felt the initial discomfort from the post-operative drains. "I also had a breast reduction on the other side, so the two sides would match," she remembers." It was a little uncomfortable at first, with the drains on both sides, but I healed well and feel great now."

Sandy agrees that the first two weeks were hardest for her, too: "I had both sides worked on, because I had a breast reduction on the other side. I like to sleep on my side, and couldn't those first weeks." She laughs, and adds, "Instead, I slept in my recliner… I really recommend having one for those first weeks after the surgery!"

Liz* is a 45 year-old registered nurse who helps lead a breast cancer support group for women at a major medical center in Texas. She discusses how it felt during those first weeks for her: "The drains make you sore, and I found it hard to sleep. I like to sleep on my left side, and I couldn't because of the surgery. Instead, I've had to learn to sleep on my right side."

Marlyn had several infections the first few months, "One time requiring i.v. antibiotics and oral antibiotics at the same time. They had to remove the implant until it healed, then try again. My main reason for attempting again was that I wanted to be able to look down and see some cleavage. I was not interested in being in any beauty pageant, I just wanted to feel like a woman again."

Bea feels that in the first weeks, the discomfort she experienced was not unexpected but found that she had an adverse reaction to pain medication: "I did expect pain and knew that it would be controlled with analgesics. Unfortunately, I could only take plain Tylenol, as all other medication made me nauseous. I chose pain instead of vomiting and constant nausea. Of course I had Demerol immediately post- op."

Scarring

These women noted that there was some scarring after reconstructive surgery, but none were uncomfortable with it, especially since the other surgery had already left scars.

"There is a larger scar from the mastectomy across my chest, and a smaller one where they put in the implant, "says Sandy. "There is also a small scar under the breast that they reduced, but they don't bother me. "

Liz also notes that there was some scarring, and adds, "I'm a little disappointed that they haven't faded more. But it's nothing that I can't live with."

Radiation Therapy and Reconstruction

Two of the women underwent radiation therapy after their reconstruction, which affected their experience with the reconstruction.

"I chose to have the reconstruction at the same time I had the mastectomy, to cut down on the number of surgeries", Liz remembers. "But then I had radiation therapy, which made my skin thinner, and the implant started coming through. They had to take it out awhile, and I had to wait until the radiation therapy was over to try again. I wish that I had known that I had the option to wait until after finishing radiation to put the implant in. It wasn't discussed enough, or maybe I just didn't hear it at the time. If I could do it again, I would have waited." At the same time, she notes, "I did choose to have it (the implant) reinserted later, and I'm really glad I have it now."

Sandy also saw skin changes from her radiation therapy: "The radiation toughened my skin, so it doesn't stretch as easily, so my doctor decided to go slowly with the stretching. But even the first time, when he partially filled the temporary implant with saline, it made a huge difference, and the process didn't bother me at all. It's just gone a little slower."

What Helps Recovery

Each woman found different things that helped her during her recovery time that either helped prevent complications or contributed to healing of her body and spirit.

Andrea attributes her excellent recovery to being active: "I do a lot of water aerobics, and use my arms and exercise; I recommend this for anyone. Just be sure to check with your doctor and get his okay first. "

Two women found that massage therapy was helpful after their surgery:

"I am happy to say that after the many infections and after vigorous, deep tissue massages, my range of motion and surface feeling is quite remarkable," says Marlyn.

Liz believes that massage and other measures helped prevent swelling for her: "I had 15 lymph glands taken out, so I have to be careful with my arms; I carry my purse on my right side, I wear my watch on that side, and I'm careful what I lift. I also go to a massage therapist, who breaks up my adhesions and I think this has helped to prevent swelling."

Bea found that meditation was helpful during her healing: "This can help mind, body, and spirit healing. My belief is that it should be integrated into the medical field. To my surprise, my breast care center already offers complementary medicine. They have courses on meditation, guided imagery, hypnosis, diet, and more, which is helpful."

The Importance of Support

According to Sandy, family support was an important part of her healing: "I had wonderful support- my mother took me to my doctor appointments, and my chemo and radiation therapy treatments. My family has been behind me all this time and it has helped tremendously."

Liz reflects on the support that helped her through some low points. "It was really hard to have both a hysterectomy and a mastectomy; I remember crying and feeling as though 'all my female parts are being taken out.' But I had wonderful support. My family would call, or bring me meals, friends were there for me, and I would come home and find gifts left on my doorstep. This made all the difference, knowing they were there for me." She also believes her faith was a big help. "Prayer and my faith got me through, too."

She also visited support groups, and this led to a career change. "I now work at the cancer center. I changed jobs because of going through this and enjoy what I do."

Andrea discovered that support was important during her recovery: "I joined a support group, and it helped so much to talk to other women going through what I am. We understand each other." Andrea's three daughters helped her, too. "It made a big difference, having their support during this time in my life."

"Take one step at a time, many caring people will guide you," reflects Bea as she discusses support. "The power of prayer is very powerful. Ask your friends to pray for you. I asked my friends of all different faiths to pray and send me healings."

Self-Image

The women interviewed felt very positive about the effect of the reconstruction on their self-image and feelings of femininity.

"Being a larger- breasted woman, I feel reconstruction helped me feel better as a whole person," says Marlyn. "I was fortunate enough to be dealing with an aesthetic surgeon and am pleased with the results. The best compliment came from my own mother when I was in a swimming suit. She said, 'Sis, you really look great. One would never know you have had surgery.'"

Sandy laughs as she shares, "When I had the prosthesis, I was always afraid that if I bent over, it would fall out! It was also uncomfortable. I feel very positive about my implant already, and I don't even have the permanent one. I don't feel so self-conscious. I can wear a swimsuit and a V-neck, and no one can tell the difference."
Sandy adds another benefit for her: "I have large breasts that were cumbersome. So when the doctor told me I would have a reduction to help them both match, I was excited! I look better and feel better than I ever did before now."

In spite of early setbacks, Liz is glad that she had reconstruction surgery: "I hated it when they took the implant out for a few months, and I had a flat chest. Having the implant really helps my body image, and I am very pleased to have it."

Bea is a registered nurse, and because of her experience in the medical field, feels even more positive about her experience with breast reconstruction: "When I started nursing forty years ago, I nursed patients with total radical mastectomies who had their collar bone removed. The skin was pulled so tight that the healing process was difficult. Implants were not yet invented. They had to live with prostheses of poor quality, and a flat, almost concave chest. I remember these women well. Today we have choices, and medicine is advancing very rapidly. I am grateful to be living in these times, and I am happy with the results. I feel that my breasts look beautiful; they feel and look like my own. I feel truly blessed. I look at my breasts, and I see a miracle."

And finally, Andrea shares: "I'm very happy with the results. I encourage anyone to have it done. My body image is better now and with the insert and the breast reduction I feel more youthful. I'm especially happy since I swim a lot, and I don't have to bother with a prosthesis. I'm not so sure I would be as active as I am now if I had to wear one. I had a great surgeon, and my family and I are happy with how I look."

As you can see, the women who have shared have had slightly different experiences with their breast reconstruction, based on the different choices they made. Some chose to have their reconstruction immediately, while others delayed surgery, and one chose to have her surgery revised. While they note that the immediate post-operative period was uncomfortable, most felt that they healed quickly and well.

And all state they are glad they chose to have reconstruction, because of the benefits to both their self-image and their activity level. According to these women who shared, support during the early days after surgery is extremely important, whether from friends, family members, or both. I want to thank each of them for sharing from their experience, as they discussed the different options and choices that they exercised, what helped them during recovery, and how the surgery affected them personally. Their greatest wish? Sandy shares, "I hope that by doing this, it will help other women who are afraid or not sure what it's like."

* Name changed
** Dr. Shamoun's office can be reached at (949) 759-3077