Breast Cancer: Recovering from a Lumpectomy or Mastectomy

Going Home

Mastectomy patients generally spend one night in the hospital after surgery. They will leave the hospital with the following: a bandage over the incision, a sling for the arm next to their incision, medication for pain, and plastic tubes that come out of one side and end in a plastic sphere (drains). Most patients feel tired and have limited energy.

Lumpectomy patients may or may not spend a night in the hospital. However, they also are likely to have drains, medication, and feel fatigued.

My biggest lesson learned: Do not short yourself on the pain meds. You cannot heal if you are in substantial pain. Also, under-medicating your pain may lead to guarding of the sore areas and poor posture, which can, in turn, cause other problems. You won't become dependent on the narcotics by taking the full dose that the doctor's prescription allows. The doctor will give you guidance on when you have the option to switch to an anti-inflammatory medication such as aspirin, ibuprofen, or naproxen. The reason that you need to wait a few days is because these drugs have anti-clotting properties, and you don't want the surgical sites to bleed.

Have plenty of cold packs on hand. Traumatized tissue really puts out the heat. I used two lightweight cotton sports bras and slipped the cold pack in between them. I covered that with a loose, button-down shirt, and nobody was the wiser when I was out in public or had a guest at the house. I also used a very soft cotton bandana for padding under my arm to minimize irritation. And sometimes it just felt best to wear an old and very soft, silk camisole.

Drains

The tubes and spheres help drain fluid from the incision and the armpit if your axillary lymph nodes were removed. You will get instructions to empty the spheres several times a day and measure the output. This process involves squeezing the fluid down the tube and recapping the sphere with a slight suction on it. The point at which the tube enters your skin is tender, which can make this process uncomfortable. For the first few days, it also may be difficult to move the affected arm properly. The drains will be removed in the surgeon's office when they no longer collect much fluid—usually one to two weeks.

The area where the drains were may be sensitive for a long time. Don't be alarmed if it takes years to forget about those spots. Once the drains are removed, fluid may accumulate under the skin at the surgical site, at the drain sites, or in the armpit. This is called a seroma. Your surgeon will check for this and if there is a seroma, could drain it with a needle.

I found the whole business with the drains just awful. That's one big reason I haven't returned for a prophylactic mastectomy.

There was a cleansing feeling associated with pulling the fluid down the tubes. I could tell I was healing because there was less fluid after a few days. It was a hassle to walk around with the drains pinned to my pants, though.

After my drains were removed I retained fluid under my arm. It was quite painful and I dreaded having it drawn off, but it didn't hurt a bit. I had that done twice in the surgeon's office.

I figured out a way to tie the tubes and drains into my shirttail, which hid them quite nicely.

Bandage

The bandage over your incision will be small. Doctors generally recommend that mastectomy patients change the gauze once a day to keep the wound clean; lumpectomy patients may not have to replace the bandage after it is removed. The incision itself is often closed with surgical tape ("Steri-Strip™"), which enables the edges to heal in a clean, thin line. The bandage may only be needed over the mastectomy incision for a week. The strips will loosen and fall off on their own; don't try to pull them off and don't worry if this takes awhile.

Some of the tissue around a lumpectomy site may be traumatized and bleed internally, forming a hematoma. If you have extensive bruising, schedule an appointment so your doctor can check it out. Minor bruises will dissolve in time.

Healing Muscles

The removal of a breast involves the separation of muscle and breast tissue from an area that extends from your collarbone around to your shoulder blade and down your rib cage. That entire quadrant of your chest is likely to feel tight, swollen, and very sore for a while. One of your pain medications will help muscle inflammation and encourage healing. Most of the muscle pain will occur in the first two weeks and subside, but do not be worried if you have sudden new twinges of pain months to years after the surgery as scar tissue changes and heals.

I felt like I had been run over by a truck, or struck by a fast-moving football. But this didn't stop me from using a keyboard or a telephone, so I went to work half-time during the second week.

It is amazing how many common chores use chest muscles—dipping ice cream, sweeping the floor, spinning salad. It was several weeks before simple things were easy.

I found the exercises from the American Cancer Society (ACS), Reach to Recovery volunteer very helpful. They are designed to help lessen the tight swollen feeling under the chest/arm area. If your doctor doesn't contact ACS, then I would suggest calling; they are in the phone book. You can either pick up the information from the ACS office nearest you or they may be able to send a volunteer to visit with you and show you how to do the exercises. This will prepare you for when the doctor tells you that you're healing and it's time to start the exercises.

Two weeks after surgery, I had company for a week. It was a mixed blessing because I tried to do more than I really felt like doing. I don't remember anyone in the hospital telling me not to lift or do anything—I think I did too much. I got an infection in the breast that delayed radiation treatments. My mistake was to think that I could do everything I had always done.

"The Breast Cancer Survivor's Fitness Plan" by Carolyn M. Kaelin is well-written, well-organized, has useful and ample illustrations, and provides specific plans for different procedures and conditions. The author is a surgical oncologist and a breast cancer survivor. I've had professional physical therapy for my knees, shoulder, and back, so I know a good exercise book when I see it—women might want to pick it up before their surgery.

Healing Nerves

Nerves that were cut during surgery will leave your skin numb. Most women have no feeling on both sides of the incision and in their armpit. Nerves that were damaged during surgery will cause shooting pains, twitching pains, or burning sensations as they heal. The sharp shooting pains should calm down after the first week, but the tingling, twitching, and burning pains may bother you for as much as a year. One of your pain medications will probably be a narcotic. It works by affecting your perception of pain in your brain, so the nerve pain will effectively "go away." Even without the pain medication, the nerve pain improves over time, though the numbness may be long-lasting.

Every time I leaned over and then straightened up, it felt like I had pulled tape off my skin. That little jolt was uncomfortable, but not really painful. Someone told me later that was muscle tissue coming unglued.

Seat belts are the worst. The shoulder strap cuts across tender muscles and nerves. It took four months before I could use it again; it was worse after radiation.

When driving, I found that the seat belt was very uncomfortable, so I placed the shoulder strap behind my body but kept the seat strap on until the tenderness went away.

The stinging and shooting pains from my lumpectomy went on for months.

The skin in my armpit felt like it was burning for several weeks. An herbal oil helped relieve the sting better than anything I tried.

I had no numbness near the incision after my lumpectomy, but the sentinel node biopsy and lymph node removal made me numb near my armpit.

Restoring Arm Movement

Between the breast tissue removal and the lymph node removal, the muscles that move your arm got pulled, sliced, and stitched. You may not want to move your arm around very much during the first week, so feel free to use a sling if that helps you protect the incision. Keep in mind, though, that not moving your arm at all means it will be more difficult to restore full arm movement later. During the first week, you might try to use your arm for small tasks to keep the elbow flexible. Plan on wearing shirts that button in the front for several weeks; you may not be able to pull a shirt on over your head.

When the drains and bandages are removed, ask your doctor if you are able to exercise your shoulder and begin to restore full movement. You will need to stretch the chest and armpit muscles to get your arm over your head. Continue to push and stretch a little bit every day, but don't go overboard. It often takes six weeks to get your arm movement back to normal. Many women find physical therapy or massage to be a great benefit. Licensed physical or massage therapists can recommend a wide variety of exercises that address each muscle in your shoulder, chest, and back. Even if your surgeon does not specifically mention physical therapy, you should ask and plan to exercise.

Just after surgery, I wanted to wear a soft, cotton T-shirt in the worst way. It was a good three weeks before I could satisfy that longing!

Doing the ACS exercises helped to restore my arm movement after surgery. I think it is also a good idea to do the exercises before surgery.

My doctor sent a woman who had a mastectomy previously and was an ACS volunteer to my home to talk with me. She provided me with a lightweight prosthesis, which worked very well, and she had ideas of what to ask my doctor about, like exercises that will help with my recovery.

Mental Recovery

The process of having cancer and going through surgery is stressful and challenging. Many women report that they experience difficulty remembering things, coming up with the right words, and thinking through problems. These symptoms are normal and reversible. Research indicates that one strategy for speeding up the recovery process is spending time doing enjoyable things that don't require high-intensity levels of mental attention. Knitting, bird watching, light gardening, and walking are examples of activities that some women have found particularly helpful at restoring their brain power. It also is important to express your feelings to your family and friends, as you become comfortable with your diagnosis and treatment. Many women find support groups useful.

Always write down the questions you have for your doctor(s), since you may not remember when you're in their office. It is also helpful to take someone with you who can help remember what the doctor said. Some women even like to tape record their discussions with their doctor to listen to later; you can check with your doctor to see if s/he is okay with this.

About two months after surgery I went to the beach with my husband's sisters for two weeks. We walked along the ocean everyday; they got groceries and did housework. It was a wonderful vacation and helped a great deal in my recovery.

Bathing

During the first week of healing, the incision should not get wet. You can take a shower if you aim the water to one corner of the shower, drape a towel over your shoulder covering the bandages, and move in and out of the water. You may need help if you really want to get clean!

I asked the surgeon about bathing, because the boilerplate discharge papers said to keep the area dry until I saw the surgeon. My post-op appointment was nearly two weeks after surgery; talk about stinky! The surgeon said that I could get the area wet the next day. So, I think that this varies depending on the patient's situation and perhaps also the surgeon's preference.

Sleeping

Plan to sleep on your back. Getting in and out of bed could be difficult at first. You might be able to roll onto the unaffected side in the second week, if you have somewhere to put your arm (you may not want to rest it on your sore side). The healing side may take several months to a year before you can roll on it.

I used a pillow to prop under my affected arm for comfort. A large body pillow may help if you are a side sleeper.

I slept on my side with a pillow to hold up my arm. I think it helped.

Getting out of bed for the first time after surgery was torture. I felt like I was plastered to the bed and could not sit up.

I surrounded myself with pillows on both sides, which cushioned me nicely. Also, for a few nights, my husband slept in the other room so as to avoid accidentally bumping me in the night.

Reconstruction

Some women choose to have surgery that restores their breast, called "breast reconstruction." Reconstructed breasts can be made from synthetic inserts or from fat and muscle tissue that is moved from another part of your body, usually the lower abdomen or shoulder area. The latter involves lengthy surgeries (over eight hours) and requires a long recovery period. When you are ready to explore these options, make an appointment to speak with several plastic surgeons before you make a final decision. Some women find they need surgery on their other breast to make it appear the same size as the reconstructed breast. Most insurance plans cover breast reconstruction even years after the original breast cancer surgery, so you have time to think about this. It is often beneficial to have the curative surgery and then consider your options later.

I had reconstruction about a year after I was done with all of my chemo and radiation treatment. I'm very glad I made the decision to do it. It may not be for everyone, but I was young and had to have the prophylactic mastectomy anyway, so I did both sides at one time. When I was considering the doctor I wanted to do the surgery I went to four different doctors for an opinion. I asked how many surgeries they had performed, and if I could see pictures and talk to his patients. The most important thing I asked was which procedure was right for me and my body, not what procedure the doctor was accustomed to doing. I would do the procedure again because I just feel more like I used to feel before cancer. For me, the reconstruction was easier on me than the mastectomy, though I don't know why; maybe I was more prepared, maybe I had better drugs.

I had a prophylactic mastectomy at the same time I had reconstruction on the affected breast. I had the Tram Flap procedure (tummy tuck), and later had a nipple added. Now the prophylactic side doesn't have as many scars because they tunneled the tissue under the skin.

I decided to try the prosthesis for a while before making a decision about reconstruction. Now I'm used to it and don't really see a need to reconstruct a breast. It is hard to want surgery if I don't need it.

Prophylactic Mastectomy

Some women choose to have both breasts removed when they have cancer in only one. Lymph nodes may or may not be removed on the non-cancer side, but the muscle damage and incision will be the same.

I had a double mastectomy. At the time I made that decision, it seemed easier to have it all done at once with one surgery. Afterward, however, I wished I had at least one arm that worked. It was difficult to do almost everything for several weeks. I think the recovery period was just as long as having them done separately.

Going Back to Work

Although everyone heals at a different rate, nearly all mastectomy patients spend one week at home before they attempt to return to work. Some women take two weeks or longer. During the first week, it is normal to feel tired and to take pain medication. In addition, most women go home with drains, which can feel uncomfortable.

When you want to go out in public, there is the challenge of filling the gap where your breast used to be. It may take a few months before you'll want to wear a bra since your chest will be tender. Some women try a shoulder pad pinned to their blouse. Your doctor can prescribe a Softee®—a camisole with a round fluff-pad that attaches by Velcro. Many insurance plans cover mastectomy bras, camisoles, and prostheses. Ask your doctor for a prescription.

That 'softie' was a wonderful help to me. I felt like I looked normal.

I'm a size D and there was no way I could be seen in public without a bra. I just winced and wore one anyway, and stuffed a sock on the empty side.

My surgeon told me to take three weeks off from work, and then return part-time. I can't really take time off from cooking and taking care of the dogs, however. I think healing takes a lot of energy and it may take more than three weeks to get back to a fairly normal routine and stamina.

Follow-Up

If your doctor doesn't call the American Cancer Society to request a visit from a Reach to Recovery volunteer, you can contact them either before or after your surgery. They will bring you a temporary fiber-filled breast form, a bra extender (which helps to lengthen the bra if your chest is swollen), and a variety of booklets.

The temporary prosthesis can be pinned inside your bra, shirt, or even nightgown. I also used mine in my swimsuit.

Your doctor will want to follow your health in the future. These visits may be scheduled every three months at first, then every six months, and then yearly, depending on the doctor and your situation.

It is a bit difficult to relax and enjoy life when I'm always on the lookout for symptoms of additional cancer. There is a lot of responsibility associated with being the first one who will identify a future problem. But I figure if it happens, it will be something I'll notice easily, and that helps me ignore the minor aches and pains of living.

Summary

There are a host of things to learn, know, question, discover, and expect when recovering from breast cancer surgery. It is a challenging process that requires time and energy. If the information in this fact sheet is helpful, you may appreciate attending a breast cancer support group meeting to find out more. The assistance of a support group may help you regain a "normal" life by seeing how other women have coped with breast cancer surgery and treatments.

The best information that I can give to anyone going through breast cancer treatments is to get connected with a local breast cancer support group. People who have had this disease and who have gone through some of the same things and feelings can be of benefit to you. The more you know about what's happening to you, the more prepared and informed you'll be.

Mainly, I wish I had the connection with a support group prior to surgery. I was so stunned [by the diagnosis], I became a robot, and went into the surgery doing whatever the doctor said—never thinking about a support group or questions.

Acknowledgments

M.C. Monroe is a professor in the UF/IFAS School of Forest Resources and Conservation, Gainesville, FL. B. F. Shea is an oncologist at the Wentworth-Douglas Hospital in Dover, NH.

Our thanks to the women of the Gainesville Breast Cancer Support Group who offered recollections of their experiences, fears, and questions as they recovered from surgery.