Understanding Soft Tissue Sarcoma: Amputation
Amputation is surgery to remove part or all of an arm or leg. The surgeon removes the part of the limb with the tumor. The surgeon will also remove everything below it and some healthy tissue above it. For some patients, amputation may be the best option. For example, if the patient has a large tumor that extends into the nerves and/or the blood vessels, it might not be possible to save the limb.
The pathologists tissue analysis and MRI scans will help the surgeon decide how much of the arm or leg needs to be removed. The surgery will be performed so that muscles and skin will form a cuff around the amputated bone. This cuff fits into the end of an artificial limb. This is called a prosthesis. Part of rehabilitation is learning to use the prosthesis. Most patients are walking again 3 to 6 months after a leg amputation.
Sometimes, an amputation is still the only way to remove all of the cancer. Or, critical nerves, muscles, bone, and blood vessels would have to be removed along with the cancer which could lower quality of life after limn-sparing surgery. Amputation may be the best option if removing this tissue would leave a limb that can’t function well or result in chronic pain.
Discuss your treatment options with your healthcare team. Ask about the advantages or disadvantages that go along with each type of surgery. Although amputation may initially sound worse, consider your quality of life. For example, if you are an athlete, a prosthetic limb may actually allow you to continue to be more active than limb-sparing surgery.
What To Expect
You will be asked not to eat or drink anything the night before the surgery. You will need someone to drive you to the hospital and to pick you up after the surgery. Depending on the extent of your surgery, you may have to spend time recovering in the hospital.
When you arrive at the hospital, you will change into a gown. A member of your healthcare team will come by to clean the area and mark the surgery location with a felt tip marker.
You will be given anesthesia for the surgery. First, a nurse will insert a needle connected to a long tube. This is called an intravenous infusion (IV) line. It will be either in your hand or your arm and will be taped into place. The nurse will give you medication to relax you through this IV line. Once you are in the operating room, you will be given general anesthesia. You will not remember the surgery.
Recovery: In the Hospital
After the surgery, you will wake up in the recovery room. You may feel disoriented, nauseated, or tired. Let your healthcare team know how you are feeling. If you are in pain, let them know immediately to help you control your pain. Your healthcare team will stop by frequently to check on you and monitor your vitals. Your family may be allowed to visit you once you are awake.
You will still have your IV in your hand or arm. You may also have an oxygen tube in your nose. Depending on the surgery, you may also have a catheter to remove urine from your body. The oxygen tube and catheter will be removed within a day or two of surgery.
Preventing Blood Clots
Depending on your surgery, you may feel pressure or something lightly squeezing your legs. This is a sequential compression device. If you stay in one place for a long period of time, such as during a surgery, you can be at risk for blood clots. The device keeps the blood in your legs flowing to prevent blood clots. It does not hurt. You may also have on compression stocking or tight, long socks to prevent blood clots.
Your healthcare team may give you a PCA (patient-controlled analgesia) pump. This is a device that you hold in your hand. It has a button on top. If you are in pain, you press the button and a dose of pain medication is administered through an IV. Don’t worry! There is a lock on the pump. You cannot give yourself too much pain medicine. However, do not allow your family or friends to push the button for you. Your nurse will give you instructions on how to use the PCA pump.
Soon after your surgery, a nurse or therapist will teach you breathing exercises. These keep your lungs clear, strengthen your breathing muscles, and help prevent complications, such as pneumonia.
You will be given a device called an incentive spirometer (pictured). To do the breathing exercises, place your lips around the mouthpiece at the end of the tube. Hold the device upright. Slowly, inhale as much air as you can through the mouthpiece. Hold your breath long enough to keep the ball or disk raised for at least 3 seconds. Repeat the exercise regularly. Your healthcare team will give you instructions for how often to do the breathing exercises.
Do not try to get out of bed without assistance from your healthcare team. Even if you feel fine, you may injure yourself. A physical therapist will assist you. After an amputation, make sure your healthcare team assists you with all movements. You will be taught how to move the limb safely. You will also be taught how to transfer yourself from surface to surface, for example, bed to wheelchair.
Pain is a concern with any surgery. You shouldn’t ignore your pain or try to tough it out. Pain after an amputation can be from the skin, nerves, or muscles. An important part of pain management is accurately describing your pain to your healthcare team. You can describe you pain level using a 1-10 scale. It is also helpful to describe the type of pain. Some words you may use include:
Other things to consider—does anything cause the pain to be worse such as moving? Is your pain worse in the morning or evening?
The most common pain management strategy post-surgery involves pain medications. There are a few different types of pain medications including opioids (narcotics) and non-steroidal anti-inflammatory drug (NSAIDS). It may take time to get the dosage correct for you. Always take these medications as prescribed by your doctor.
After an amputation, you healthcare team may also prescribe antidepressants or anticonvulsants (anti-seizure). These medications have been shown to help with pain after an amputation.
Phantom Pain and Phantom Sensation
After an amputation, it takes time for your body to adjust. Your brain may misinterpret signals from your remaining nerves. Many people with amputations report “phantom sensation” or “phantom pain.” Phantom sensations do not hurt, but they may be unpleasant. It may feel as if the missing limb itches, tickles, or tingles. Phantom pain may feel like sharp pain in the missing limb or a burning, cramping, or aching. Phantom pain is less common than phantom sensation.
Phantom pain and phantom sensation may come and go, and it’s more likely to happen at night. Typically, phantom pain and phantom sensation improves over time. Massaging and rubbing the residual limb may help. Wearing a shrinker sock that provides steady pressure on the limb also may help. If phantom pain does not improve, you healthcare team may provide antidepressants, anticonvulsants (anti-seizure), or other nerve medications to help.
To learn more about pain management strategies, turn to the Pain section of the Handbook on page 79.
Caring for the Residual Limb
After an amputation, caring for the residual limb is very important to make sure the limb heals properly and to prepare you for a prosthesis.
After surgery, the surgeon closes the wound with sutures or staples. The residual limb will be in a case, splint, or tight bandage for protection and to control swelling. The bandages will be changed often by your healthcare team while in the hospital. A nurse will teach you or your caregiver how to change the bandage as well. You will need to keep the area dry at all times.
Approximately three weeks after surgery, your healthcare team will remove the sutures or staples. At this point, you start desensitization. This means getting the residual limb used to touch and feeling. You will massage or rub the residual limb a few times a day. This prepares the limb for a prosthesis, improves circulation, and helps with pain.
After the sutures of staples are removed, you can wash the limb with soap and water and pat it dry, gently. Do not pick at any scabs.
A shrinker sock is a special sleeve or sock that fits over the residual limb. The sock applies pressure to the bottom of the limb. It controls swelling and shapes the limb for a prosthesis. You will wear the shrinker sock every day after the sutures or staples are removed.
When To Call Your Healthcare Team
When caring for a residual limb after surgery, call your healthcare team immediately if any of the following happen:
- the dressing comes off or feels loose (prior to suture or staple removal)
- the wound smells bad or leaks pus
- the wound is hot, red, or swollen
- the wound reopens
- pain level changes suddenly
Physical Therapy/ Occupational Therapy
After an amputation, you will need physical therapy and/or occupational therapy.
Physical Therapy: During physical therapy, you work with a physical therapist who teaches you exercises, stretches, and movements to help condition muscles to restore strength and improve mobility.
Occupational Therapy: During occupational therapy, you work with an occupational therapist who teaches you to manage your daily activities. Occupational therapy, like physical therapy, may also include exercise, stretches, or massage. Occupational therapists teach you how to adjust your movements to complete daily tasks safely.
You may begin physical therapy in the hospital soon after surgery to prevent muscle and joint tightening. If you have surgery on your leg or a leg amputation, a physical therapist will also teach you how to safely transfer yourself from bed to wheelchair and how to use walker, crutches, or cane safely.
After you leave the hospital, you will continue to meet with a physical therapist or occupational therapist regularly. After an amputation, once the residual limb heals, your therapist will also help you be fitted with a prosthesis. You therapist will also teach you how to walk with a leg prosthesis or use an arm prosthesis.
Your physical therapist or occupational therapist will give you exercises to do at home. Your therapist will likely provide you with printed instructions with pictures showing how to do the exercise the right way. It’s important to follow all your therapist’s instructions to build your strength and mobility and for your safety.
A prosthesis refers to a device that replace a part of the body such as an artificial arm or leg. After an amputation, you may be able to use a prosthesis. A prosthesis has two purposes— look and function. Many prosthetic legs function like a real leg, and with the help from a physical therapist, you can learn to walk and sometimes even run with a prosthesis. The type of prosthesis you receive will depend on the extent of your surgery, your overall health, and your activity level.
A prosthestist is an expert who makes and its prosthesis. A prosthetist can help you work through your options depending on your goals and health. Do you hope to be able to run or play sports? Would you prefer a more natural looking prosthesis? All of these are things to consider.
Being Fitted for a Prosthesis
4-5 weeks after surgery, you will meet with a prosthetist for your first fitting. Your physical therapist may be the one who arranges the appointment. At the first fitting you will be fitted for a preparatory or temporary prosthesis. You will use the preparatory prosthesis to being learning how to use and care for a prosthesis.
After the residual limb has completely healed and reached a stable size, you will be fitted for a definitive or permanent prosthesis. Your definitive prosthesis may look more natural or be more advanced than your temporary one.
Using and Caring for a Prosthesis
Your physical therapist will teach you everything you need to know about using and caring for your prosthesis. It will take you some time to learn to walk on a leg prosthesis or to use an arm prosthesis. Here are some of the things your physical therapist will teach you:
- To don (put on) and doff (take off) your prosthesis
- To adjust the sock that protects the residual limb
- To walk (with or without a walker or cane)
- To care and clean the prosthesis
Learning to use a prosthesis takes time. Be patient with yourself and continue to work with your therapist. The prosthesis may be uncomfortable at first, but it will improve overtime. You will gradually increase the amount of time you wear the prosthesis each day. In time, you will be able to return to most of your routine activities.
Emotional Care and Support
An amputation or major limb reconstruction, comes with emotional issues as well as physical ones. These feelings can be amplified when the surgery is because of a cancer diagnosis. You may feel sad, angry, anxious, or frustrated. You may feel the need to grieve for the lost limb. All of this is normal.
If you are undergoing an amputation, your healthcare team will likely refer you to a psychiatrist. A psychiatrist is an expert in mental health who can talk work through your feelings. It may take time to adjust to your new body and body image—both after surgery and once you receive a prosthesis. Acceptance will take time so give yourself the time you need. Seek out help when you need it.
You may find it helpful to connect with other people who have underwent an amputation.
For support groups or peer-to-peer connections, visit the Amputee Coalition at www.amputee-coalition.org or call (888) 267-5669.