Limb Loss and Amputation After Sarcoma

Losing a limb to sarcoma is a surgical decision, a rehabilitation project, and a change in how you move through a day. This page covers what the National Cancer Institute and MedlinePlus document about each.

Two operations are usually on the table. NCI describes them plainly.

"Limb-sparing surgery removes a tumor in an arm or leg without amputation." NCI notes it is often an option for children with osteosarcoma in an arm or leg.

"Amputation removes part or all of an arm or leg." It is used "when it is not possible to remove all of the tumor in limb-sparing surgery."

Now the sentence that changes many conversations. NCI states: "Studies have shown that survival is the same whether the first surgery done is a limb-sparing surgery or an amputation."

That is worth sitting with. Choosing amputation is not choosing a worse chance of survival. The decision turns on whether the whole tumor can be removed, and on what function you want afterward. Ask your surgeon to explain which factor is driving their recommendation in your case.

If a tumor sits at the knee, a third operation may be offered. It sounds strange until you see what it does.

NCI describes it: "Rotationplasty removes the tumor and the knee joint. The part of the leg that remains below the knee is then attached to the part of the leg that remains above the knee, with the foot facing backward and the ankle acting as a knee."

The backward ankle becomes a working knee joint inside a prosthesis. People are often shocked by the appearance and then surprised by the function. Ask to speak with someone who has had one before you decide.

NCI names the specialist and the time frame. "If prosthesis is part of the plan, fitting and training will take place with a prosthetist (a specialist in artificial limbs) over several weeks to months."

Weeks to months. Not days. MedlinePlus says the same thing in plainer words: "It will take time for your prosthesis to be made. When you have it, getting used to it will also take time."

MedlinePlus adds where the other half of the work happens. "Many amputees use an artificial limb. Learning how to use it takes time. Physical therapy can help you adapt."

Ask to meet the prosthetist before surgery if the schedule allows. Ask what the first device will be, and what replaces it once the limb has settled.

MedlinePlus gives specific discharge instructions after leg amputation. These are the habits that decide whether a prosthesis fits well later.

• "Keep your wound clean and dry unless your surgeon tells you it is OK to get it wet."
• Once dressings are off, "wash your stump daily with mild soap and water. Do not soak it. Dry it well."
• "Inspect your stump every day. Use a mirror if it is hard for you to see all around it."
• "Wear your elastic bandage all the time. Rewrap it every 2 to 4 hours."
• After the wound has healed, "keep it open to the air" unless your team says otherwise.

The daily inspection is the one people skip. Skin under a socket is skin you cannot see while the device is on.

Joints stiffen fast in a shortened limb. MedlinePlus is specific:

• "When you are sitting, keep your stump straight and level."
• "Do not cross your legs when you are sitting. It can stop the blood flow to your stump."
• "Lie on your stomach 3 or 4 times a day for about 20 minutes. This will stretch out your hip muscle."

Twenty minutes, three or four times a day, is a real prescription. A hip that tightens now can make a prosthesis harder to use later.

MedlinePlus lists these warning signs after a leg amputation. Do not wait for the next appointment:

• "Your stump looks redder or there are red streaks on your skin going up your leg"
• "Your skin feels warmer to touch"
• "There is swelling or bulging around the wound"
• "There is new drainage or bleeding from the wound"
• "There are new openings in the wound, or the skin around the wound is pulling away"
• "Your temperature is above 101.5°F (38.6°C) more than once"
• "Your skin around the stump or wound is dark or it is turning black"
• "Your pain is worse and your pain medicines are not controlling it"
• "Your wound has gotten larger"
• "A foul smell is coming from the wound"

Two of those deserve emphasis. Skin turning dark or black is on the list. So is pain that your medicines have stopped controlling. Neither is something to tolerate until Monday.

This is normal and it is not imaginary. MedlinePlus explains: "After one of your limbs is amputated, you may feel as if the limb is still there. This is called phantom sensation."

The feelings vary. People report pain in a limb that is not there, along with tingling, prickling, numbness, and changes in temperature. Some feel toes or fingers moving, or feel the limb held in an odd position.

On how it changes over time, MedlinePlus is honest rather than reassuring: "These phantom sensations slowly get weaker. You should also feel them less often. They may not ever go away completely."

Several things can make it worse, and most are fixable. MedlinePlus names fatigue, pressure on the stump, weather changes, stress, infection, a poorly fitting prosthesis, poor blood flow, and swelling.

Look at that list again. A poorly fitting prosthesis and an infection are both on it. So a sudden change in phantom pain is a reason to have the fit and the skin checked, not a reason to increase painkillers alone.

Treatments MedlinePlus lists include over-the-counter non-steroidal anti-inflammatory medicines, prescription anti-seizure medicines and antidepressants, and injections of botulinum toxin. Non-drug options include relaxation, distraction, warm baths, keeping the remaining limb warm, exercise, adjusting the prosthesis, elastic bandages, compression stockings, and gentle massage.

MedlinePlus does not soften this part. "Recovery from the loss of a limb can be hard. Sadness, anger, and frustration are common."

NCI lists a psychologist and a child-life specialist among the sarcoma care team. Ask who fills those roles for adults at your center.

NCI also says treatment planning should take account of "your child's and family's goals, such as being able to participate in sports, or concerns about physical appearance." Those are legitimate planning inputs, not vanity. Say them out loud in the surgical consultation, because they can influence which operation is chosen.

NCI notes that some tests continue "from time to time after treatment has ended." Ask which ones, and how often.

Late effects are a separate issue from the limb. NCI lists them as "physical problems, such as infertility; changes in mood, feelings, thinking, learning, or memory; second cancers." Sarcoma treatment often includes chemotherapy, so ask for a written survivorship plan that covers more than the surgical site.

• Osteosarcoma and Undifferentiated Pleomorphic Sarcoma of Bone Treatment (PDQ), Patient Version — National Cancer Institute
• Leg Amputation, Discharge Instructions — MedlinePlus
• Phantom Limb Pain — MedlinePlus
• Amputation and Limb Loss — MedlinePlus