Sarcoma Treatment: An Overview
It is critical that patients and caregivers alike understand that there is no "quick fix" with regards to treatment of sarcoma. The process of evaluation, diagnosis, treatment and follow up is long and arduous, and requires a significant commitment from all involved.
By the time the patient presents to the appropriate specialists, a great deal of stress has already occurred, and is magnified when the diagnosis of cancer is made. Often the patient’s wish is to have the tumor removed as soon as possible in an effort to "get the cancer out". While this sentiment is understandable, with sarcoma, surgery usually follows after an even longer period of time for the administration of preoperative adjutants such as chemotherapy and radiation.
Though many variations exist between cancer centers in the approach to these diseases, typically some form of adjuvant therapy, such as radiation and/or chemotherapy, accompanies surgical care for sarcomas.
Treatment of bone sarcomas in most centers involves up to 3 months of chemotherapy prior to surgery (neoadjuvant or induction chemotherapy), with completion of the course after an appropriate period of recovery from surgery has occurred. In all, this process can take up to a year, assuming no other complications or need for further procedures occur.
With regards to soft tissue sarcomas, typically a course of radiation therapy (often about 5 weeks’ worth) with or without chemotherapy precedes surgical resection. While the decision to give radiation before, after or before and after surgery remains somewhat controversial (or may change on a case-by-case basis), it is certainly an integral part of the treatment plan for these tumors. Logistically, it adds a component of complexity for the patient, requiring daily treatments for about 5 weeks.
For more information, see the ESUN articles about dealing with the side effects of sarcoma treatment and coping with sarcoma.
Given the length and complexity of treatment for bone and soft tissue sarcomas, it is no wonder that patients often become disillusioned and frequently depressed during the process. It is important for patients and their families to understand that this is a very normal and natural response. Commonly, centers where sarcoma patients are treated have resources and/or personnel available to help patients and their families cope with such accompanying psychological difficulties.
Once the course of treatment has been completed, a necessary schedule of follow up begins. Usually, this means visits with some type of imaging and/or other ancillary testing (cardiac testing, laboratory exams, etc.) every three months for 2-3 years, every 6 months until 5 years after treatment, then annually. Many permutations of this certainly exist, and schedules are often varied for a particular patient, predicated on many potential factors, most frequently the presence of metastasis (disease spread).
As opposed to most types of carcinoma, there is really no time when "cure" is felt to have been definitively achieved. Sarcoma is a lifelong diagnosis, and should be treated as such. Having said this, most recurrences or metastases will be discovered within the first two to five years after treatment. Once the patient has cleared the five-year mark, the risk of recurrence diminishes greatly, but still certainly exists.
With current treatment protocols, many more are surviving sarcomas than ever before, and research is ongoing. Prognoses continue to improve. With these advances and the relatively long lifespan of many of these patients, the importance of long-term follow up and recognition of distant treatment sequelae becomes even greater.
Article Excerpts Copyright © 2005 Liddy Shriver Sarcoma Initiative
Sarcoma Treatment Protocols
The National Comprehensive Cancer Network provides treatment guidelines related to sarcomas. To access these guidelines, register for a free account at NCCN, and then login. Then click on any of the links below:
- Practice Guidelines for Bone Cancer
- Practice Guidelines for Soft Tissue Sarcomas
- Practice Guidelines for Dermatofibrosarcoma Protuberans
- Optimal Management of Patients with Gastrointestinal Stromal Tumor (GIST)
- Practice Guidelines for Uterine Neoplasms
The following practice guidelines may also be useful for sarcoma patients, caregivers and practitioners (access also requires login mentioned above):
- Adult Cancer Pain
- Cancer- and Chemotherapy-Induced Anemia
- Cancer-Related Fatigue
- Distress Management
- Palliative Care
- Pediatric Cancer Pain
- Prevention and Treatment of Cancer-Related Infections
- Senior Adult Oncology
About the National Comprehensive Cancer Network (NCCN)
The National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of 21 of the world’s leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives.
World-renowned experts from NCCN Member Institutions diagnose and treat patients with a broad spectrum of cancers and are recognized for dealing with complex, aggressive, or rare cancers. More than 160,000 new patients receive cancer care at NCCN Member Institutions over the course of any year. NCCN Member Institutions pioneered the concept of the multidisciplinary team approach to patient care and lead the fight against cancer as they integrate programs in patient care, research, and education. Our programs offer access to expert physicians, superior treatment, and quality and safety initiatives that continuously improve the effectiveness and efficiency of cancer care. Thirty-seven Nobel Prize winners have served on the faculties of NCCN Member Institutions. [From the NCCN Website]
The British Columbia Cancer Agency’s listing of chemotherapy protocols for Sarcoma treatment. Each listed protocol gives detailed information regarding eligibility and testing for that protocol, dosing levels for pre-medications and chemotherapy agents, and dose modifications for various toxicities.
European Society for Medical Oncology (ESMO) Clinical Practice Guidelines
The ESMO Clinical Practice Guidelines (CPG) are intended to provide the user with a set of recommendations for the best standards of cancer care, based on the findings of evidence-based medicine. Each CPG includes information on the incidence of the malignancy, diagnostic criteria, staging of disease and risk assessment, treatment plans and follow-up.
Sarcoma Treatment: Surgery
Surgery is the cornerstone of treatment for all soft tissue sarcomas. The goal of surgery is to eradicate all disease in the affected area. For extremity sarcomas, surgical options fall into two categories: limb-sparing and amputation. Historically, soft tissue sarcomas were treated with amputation. As our understanding of sarcoma has evolved, so has the treatment. Several studies have demonstrated no difference in patient survival with amputation versus limb-salvage. In a randomized clinical trial run by the National Cancer Institute, there was no difference in overall survival for patients with soft tissue sarcoma that had amputation (70%) versus those that had amputation (71%). Currently at least 90% of tumors are now removed using limb-sparing surgery, meaning that the tumor is removed while saving the extremity.
Limb sparing surgery should only be performed if the surgeon is confident that the tumor can be completely removed and that the remaining extremity provides reasonable function. Obviously balancing oncologic and functional outcomes is a very complex and subjective undertaking. It is very important that the patient and treating surgeon discuss the expectations of all options preoperatively. Reconstruction following tumor resection is sometimes necessary depending on the size of the tumor and what structures need to be sacrificed. For example, a bone or joint may need to be reconstructed or soft tissue flaps may be needed for wound coverage (Morris).
Once a tumor has been removed, the pathologist analyzes the entire specimen to confirm the tumor’s grade and margins. The term margin refers to the outermost edges of a resection specimen. A negative margin indicates that there are no tumor cells on the periphery of the tumor implying that a complete resection was achieved. A positive margin means that tumor cells were found on the periphery of the resection specimen which implies there is likely residual microscopic disease. Obviously one hopes to achieve negative margins at the time of surgery. Unfortunately it is not always possible to accomplish this. When possible, wide and radical procedures are attempted in order to obtain negative margins (Morris).
|Intralesional||Partial removal of the tumor|
|Marginal||Through the reactive zone; may leave residual microscopic disease|
|Wide||Entire tumor removed with a cuff of normal tissue|
|Radical||Entire compartment containing the tumor removed|
Read more in, "The Margin Matters: Someone's Life Depends Upon It."
Function after Surgery
It is important to note that even with limb-sparing procedures, functional deficits may be encountered. These may vary significantly depending on the size and location of the individual tumor, and are due to the removal of tissues associated with the tumor (i.e. muscles, tendons, nerves, etc). Reconstruction of post-resection deficits can in some instances be performed to minimize these effects (Gebhardt and Buecker).
Copyright © 2004 and 2005 Liddy Shriver Sarcoma Initiative
Sarcoma Treatment: Chemotherapy
Today chemotherapy means to most in our society the treatment of cancer with a drug or drugs. Many people believe that chemotherapy only means the use of cytotoxic drugs given intravenously. Patients are often surprised to learn that some cytotoxic drugs have been available as pills for many years. Giving a medicine as a pill or capsule is certainly more convenient but not necessarily with less side effects or potency. Other drugs that are used to treat cancer and often called "targeted agents," such as imatinib, are really chemotherapy in every sense of the word — a systemic medication used to eradicate or control a life threatening disease.
So, now the question, "Why does the word chemotherapy almost always evoke a negative response?" Part of the answer is easy. Most of the cytotoxic chemotherapies are associated with (ob) noxious side effects: profound nausea and vomiting; loss of hair; significant weakness; marked increase in susceptibility to infection, etc.
Even still, did Lance Armstrong think the chemotherapy was not worth it? Mr. Armstrong is a celebrity who had widespread testicular cancer with metastasis to his lungs and brain. But his cancer was eradicated; he recovered from the devastating side effects and went on to an extraordinary career as an athlete. More than 90% of men diagnosed with testicular cancer are cured, but not 100%. If Mr. Armstrong had died of cancer or as a consequence of the treatment, would he be a celebrity or a victim?
The fact is most patients, and especially those with a sarcoma who are treated with chemotherapy, experience these same awful side effects. The fact is, in 1972 only 20% of patients diagnosed with osteosarcoma survived and NO patient diagnosed with Ewing’s sarcoma survived. Today, approximately 60-70% of patients diagnosed with osteosarcoma or Ewing’s sarcoma are cured. We learned 25 years ago from several important clinical trials that if we used chemotherapy, more patients would be cured. We have gotten a little better managing the side effects of chemotherapy, but no new drug has been discovered to improve the clinical outcome in these past 25 years.
Chemotherapy significantly improves the prognosis of a newly diagnosed patient with osteosarcoma or Ewing’s sarcoma. But the success is not as great as the success in treating tuberculosis or syphilis. More progress is clearly needed. So, if I were the parent of a child who died of one of these sarcomas, I may think the problem is chemotherapy. It didn’t help my child! Sometimes we need demons to blame for ill fortune. But what we really need is progress. To make progress we must first define the problem. Chemotherapy is not the problem….it's cancer.
V3N5 ESUN Copyright © 2006 Liddy Shriver Sarcoma Initiative.
Sarcoma Treatment: Radiation Therapy
Radiation therapy is administered by a radiation oncologist. The purpose of radiation is to improve local tumor control by killing residual microscopic disease. Typical radiation doses vary from 45 Gy to 65 Gy.
In a prospective randomized trial from NCI, 91 patients with high grade tumors were randomized to surgery alone or surgery with post-operative external beam radiation therapy, XRT. Patients in the surgery alone group experience 20% local recurrence rates compared to 0% for the surgery plus XRT group. For both groups, there was no difference in overall survival. In general, patients treated with adequate limb-sparing surgery supplemented with radiation have a likelihood of experiencing over 85% local control.
See the recent, in-depth ESUN article: "Neoadjuvant Chemoradiation Strategies in the Treatment of Extremity Soft Tissue Sarcomas."
There are several different ways to administer radiation. The most commonly used form of radiation is external beam radiation which can be given pre-operatively, intra-operatively, post-operatively, or in some combination. Each has advantages and disadvantages (see table below). For tumors that are in contact with major nerves and blood vessels, pre-operative radiation can potentially shrink the tumor, making limb-sparing surgery possible or easier. The main disadvantage to pre-operative radiation is its association with post-operative wound complications. Post-operative radiation is probably the most commonly used modality. Typically pre- and post-operative radiation is administered over a 5 week period. Intra-operative has the advantage of delivering a large dose of radiation directly to an area of concern while sparing nearby organs such as the bowel or bladder. It is particularly useful for treating large retroperitoneal sarcomas in which it is difficult to obtain local tumor control.
Another means of administering radiation is a technique called brachytherapy. After the surgeon has removed the tumor, a radiation oncologist then places empty catheters in the operative bed. Once the wound is starting to heal (approximately 5 days after surgery), the catheters are filled with radioactive material which sits in the surgical bed for 5 days. This allows for high doses of radiation over a short period of time obviating the need to travel daily for radiation treatments over several weeks.
In a prospective randomized trial conducted at the Memorial Sloan-Kettering Cancer Center, 164 patients with extremity or superficial axial sarcomas were randomized to surgery alone versus surgery plus brachytherapy. For patients with high grade tumors, the 5-year local control rate was 89% in the brachytherapy group, compared to 66% in the surgery only group. There was no difference in overall survival between the groups. A retrospective review from the same institution examined small (<5cm) high grade sarcomas treated with brachytherapy. There was no advantage in local control or overall survival for this subgroup of patients.
Unfortunately radiation does have well known side effects. Problems with wound healing have already been described above. Problems also include scarring of the tissue resulting in firm, stiff muscles as well as skin discoloration have also been well described. The most serious complication arising from radiation is the development of a second cancer within the radiated field. This is called a post-radiation or radiation-induced sarcoma. Radiation-induced sarcomas are rare and occur in less than 5% of long-term survivors.
V2N2 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative.
Dealing with the Side Effects of Sarcoma Treatments
The side effects of sarcoma treatments can be the cause of much concern and distress for sarcoma patients, their families and friends.
There are three common causes of the side effects experienced by sarcoma patients: chemotherapy, radiation and surgery. While many of these side effects are temporary and go away when treatment ends, some side effects may be long-term or may appear long after treatment has ended (late effects).
Sarcoma treatments have their own particular type of side effects. Sarcoma surgeries often include limb salvage or amputation. These surgeries can cause patients to have difficulty with body image because of scarring, prosthetics and surgical limitations. Patients who are aware of the rarity of their condition often feel alone and isolated.
Common temporary side effects experienced by sarcoma patients who undergo surgery combined with radiation and/or chemotherapy include nausea, vomiting, mouth sores, hair loss, diarrhea, constipation, fatigue and pain. Usually these symptoms disappear after treatment is completed.
There are some patients who experience none of these side effects and others who seem to deal with many of them. Preparation and understanding can help you deal with your particular side effects as they arise.
Common Temporary Side Effects
Mucositis (mouth sores)
General tips: Keep mouth and lips moist and clean. Use a salt or baking soda rinse three or four times a day. If sores appear, notify your oncology nurse or doctor immediately for a prescribed anti-fungal or anti-bacterial rinse. The following treatments have been used by sarcoma patients and may be available through your physician or pharmacist:
- Daniel's solution is a mouth wash. A patient can swish before, during, and after treatment. It tastes pretty good, but sometimes can be hard to keep in your mouth.
- Swish and Swallow solution can be effective but is reported to taste horrible.
- Miracle Mouth Wash (lidocaine, benadryl, maalox) provides short term relief that will allow some time for eating.
- Peridex (chlorhexidine Gluconate 0.12%) is a mouthwash used to prevent mouth sores and should be used about four times a day.
- L-Glutamine is used for treating and preventing mouth sores. It can be mixed with water or juice, swished and swallowed to go through the digestive system.
- Lidocaine gel can be used for sores at the other end of the digestive tract
It might help to avoid sour foods and foods that need to be chewed. Some patients report being able to eat the following foods even when mouth sores make other eating difficult:
- ice cream
- baby food
- apricot or peach juice
- strawberry milkshakes
A visit to the dentist prior to the start of chemotherapy is a good idea. When dealing with mouth sores, try using a baby toothbrush because of its softer bristles. To replenish protein, consider using protein powders such as whey and soy.
Patients dealing with mouth sores may be able to participate in a clinical trial for mucositis.
General tips: Avoid strong odors, eat small amounts of dry food (toast/crackers), and drink liquids throughout the day. Use glass containers, and stay away from the cooking area, because cooking smells may irritate nausea. Try to eat before you get very hungry.
If nausea becomes vomiting, notify your oncology nurse or doctor for prescribed anti-nausea drugs. Sometimes the first medicine that you try does not help or does not help enough to prevent distress. There are several kinds of medicine that may work to stop or prevent nausea, so continue to report any distress to your medical team.
For additional information, consult the Nausea Page on GIST Support Wiki.
Hair loss can be sudden or slow. Getting a very short hair cut before therapy can reduce anxiety. Wigs, scarves, and scarves with hair attached are available. Some patients have used and found some relief from the following approaches:
- Make a decision about when you will shave your hair off and stick to it. Some people do this before they start losing it, and some wait until different times in the process.
- Throw a shaving party, or take a friend with you to a hairdresser.
- If you're at risk for bleeding when you need to get rid of your hair, talk to your doctor. Options include hair clippers or a beard trimmer. The key is NOT to use a bladed razor.
- In addition to wigs, try wearing hats, bandannas, or go with the natural look.
- Get creative - some girls use temporary tattoos or glitter on their heads!
General tips: Drink plenty of clear fluids. Avoid greasy fried foods, raw vegetables and fruits, gas forming foods and carbonated beverages. Metamucil or Benefiber can be mixed with half the recommended amount of fluid, to bulk up the stool. Use over the counter diarrhea medicines and keep anus area clean and dry. After the anus is clean and dry, you can apply a skin barrier and to protect the area. If diarrhea is uncontrolled for more than 24 hours, notify your oncology nurse or doctor.
For additional information, consult the Diarrhea Page on GIST Support Wiki.
General tips: Drink at least 8 glasses of water or clear liquids a day. Suck on ice chips, and eat fruits (thoroughly washed), and fiber. Get whatever exercise is possible. Stool softeners may be helpful. If you experience pain, inability to pass gas, fever or vomiting with constipation call your oncology nurse or doctor right away.
General tips: Fatigue can come on quickly and is usually not due to exertion or loss of sleep. Try to reduce work time and daily chores, plan for periodic breaks, avoid standing or sitting for long periods, and exercise. Extreme fatigue should be reported to your nurse or doctor, because it can be related to low white blood cell counts or low hemoglobin levels (anemia). Occasionally, a patient might need medication or a blood transfusion to improve blood counts and reduce fatigue.
General tips: Try to identify what is causing your pain: nerve pain, muscle pain, joint pain or bone pain. Limit exercise that intensifies pain, and wear comfortable clothing and shoes. Pace yourself! Keep a diary of pain episodes and learn when pain is most intense. Notify your oncology nurse or doctor when pain becomes intense, or if swelling and redness occur. Pain diaries and medication schedules are helpful in assessing pain.
For additional information, consult:
- Pain Control from the National Cancer Institute
- Pain Management from Memorial Sloan-Kettering Cancer Center
Additional Side Effects
Heart problems related to certain chemotherapy agents can be both acute and/or chronic. The heart muscle itself is weakened due to a class of chemotherapy drugs known as anthracyclines. The most frequently used anthracycline in sarcoma patients is Doxorubicin (or Adriamycin®). Most often, the damage is sub-clinical and does not become apparent until many years following the completion of anthracycline therapy. It is considered permanent, progressive and incurable.
There are many vulnerable populations including: children at the age of 5 and under who receive anthracyclines, patients of any age receiving greater than 300mg/m2, and patients receiving anthracyclines along with radiation to the chest/mediastinal area. This heart condition is usually discovered via echocardiograms and MUGA scans, which are recommended as follow up for the above mentioned patient populations. Some problems appear in ECG’s, as well. The cardiomyopathy is usually known as "dilated," meaning the left ventricle enlarges, and it dilates to try to compensate for the weakened state of the heart muscle, needing to meet the demands of the body. Some patients may experience arrhythmias.
The treatment for anthracycline-induced cardiomyopathy can include ACE inhibitors, which are meant to lessen the workload on the heart. The help that ACE inhibitors offer, however, is considered transitory in nature, and is not intended to "cure," but merely delay heart failure in these patients. Other patients are given diuretics in order to counteract the excess fluid build-up around the heart. Cardiomyopathy can lead to congestive heart failure. There is no cure for cardiomyopathy, and heart transplantation may eventually be the only successful treatment.
For additional information, consult:
"Chemo brain" is a term that describes cognitive impairment caused by chemotherapy with symptoms similar to Alzheimer’s disease. Patients can turn to a number of nonpharmacological approaches to manage chemo brain. Options include exercise, behavioral interventions such as relaxation therapy, and compensatory strategies such as making to-do lists. Research is ongoing into the causes of chemo brain, how to prevent it and how to repair it.
For additional information, consult:
- Cancer Treatment Related Changes in Cognitive Function (a.k.a. "Chemo Brain")
- Chemo Brain from the Mayo Clinic
- Imaging Shows Changes in Brain Function Even 10 Years After Treatment from UCLA
Edema is swelling that is caused by fluid trapped in the feet, ankles, and legs. Other parts of the body, such as the face and hands, can also be affected. Compression garments such as sleeves or stockings will help.
Cancer treatments may cause temporary or permanent infertility in both men and women. It is important to talk to your oncologist about infertility and what it means to you, preferably before treatment begins.
For additional information, consult Cancer and Fertility in the Sarcoma Learning Center.
Lymphedema is an accumulation of lymphatic fluid in tissue that causes swelling, in arms and/or legs, and occasionally in other parts of the body. Left untreated it causes reduction in oxygen availability in the transport system and interferes with wound healing. If lymphedema is caused by an infection, antibiotics will first need to be prescribed. Depending on severity of lymphedemas not caused by an infection, the recommended treatment plan is usually determined using an approach based on the Complex Decongestive Therapy (CDT) methods which consist of: a) manual lymphatic drainage; b) bandaging; c) proper skin care & diet; d) compression garments (sleeves, stockings, etc.)
For additional information, consult The National Lymphedema Network.
Some chemotherapies can do nerve damage, and radiation can inflame nerves. After the chemo/radiation is stopped, the numbness and pain can persist. There are prescription medications such as Lyrica and Neurontin to help with this. Also, biofeedback, light physical therapy and TENS units may help.
For additional information, consult: What is peripheral neuropathy and how is it related to chemotherapy? from ChemoCare.
Side Effects Related to Specific Procedures
Limb Salvage Surgery
The side effects from limb salvage vary greatly, and can depend on the age of the patient, the location of the surgery, and the extent of the surgery. The patient's mobility may be limited for days, weeks or months after surgery. Many patients benefit from physical therapy, which can continue for months after initial healing. Some patients heal well with minor physical limitations, while other patients deal with more severe physical limitations and chronic pain.
Skin grafts may be used to cover the surgical bed. The surgeon uses skin from another part of the body, such as the thigh. Seeing the extent of the damage from the skin graft can be quite disconcerting to the patient and caregiver. The actual graft site will be covered by xeroform or another type of bandage. There may be bleeding and of lymph fluid through the bandage. Some find the most painful area to be the donor site.
A free flap is a muscle that has been taken from an area in the body and moved to the surgical bed to help cover the bones or other tissue in the sarcoma removal surgical bed. The surgeon completes the tumor removal and then removes the muscle that will become the free flap. The usual sites for the donor muscle come from the thigh, abdomen or shoulder blade. Some patients have permanent swelling of the foot and ankle as a result of damaged or removed lymph channels in the leg.
To learn more about the psychological effects of surgery, read "Disfigurement, Perceived or Real."
Pelvic Tumor Surgery
Side effects can be age-related and can be dependent upon the extent of surgery. These side effects can include decreased mobility, gait abnormalities, chronic pain, pain upon exercise, leg length discrepancies (or apparent length discrepancy), scoliosis due to imbalanced pelvis and removal of surrounding muscles. Other potential side effects include deep infection, which can result in removal of a bone graft and other complications. After surgery for a pelvic tumor, the patient is usually to remain non-weight bearing for several months. Following the period of immobility and healing, the patient usually has to undergo extensive (long-term) physical therapy to "relearn" how to balance, to walk, etc.
Depending on the area that the radiation is targeting, the area can become red and tender; or if a bolus is used to target the subcutaneous regions, you will burn and blister. The doctor may advise that you keep this area out of the sun for at least a year. While you are undergoing treatment, use radiation moisturizing creams that the radiation nurses or doctor will provide. Do not wear tight clothing in the area that is being radiated. There are special bandages to put over the blisters to make you more comfortable. You may continue to burn for about a week following your last treatment.
Radiation-related fatigue is usually similar to the fatigue associated with chemotherapy. It is fatigue that does not get better with rest. Radiation can cause fatigue in two ways. If a large part of bone is in the radiation field, it will lower the blood count and make you fatigued. The other way it causes fatigue is that it affects the immune system. The body knows it is being burned and mobilizes to help the patient heal. The fatigue from radiation can last 3-4 months after treatment ends. Periodic rest periods throughout the day can be helpful when possible.
If you have oozing blisters, the fluid that you are losing contains a lot of protein. For this reason, be sure to eat protein at every meal, as this can help with healing.
Many people deal with phantom pain after amputation. This pain is like an electrical shock. The pain may be frequent and can make a limb jump. Medications, such as Neurontin or Lyrica, can be helpful. Make sure that you are fully hydrated and consuming potassium-rich food. Some patients benefit from stump massage with peppermint lotion or menthol rub. Sometimes heat or cold can help as well (talk to your physician before applying hot or cold packs).
Some patients deal with phantom sensations - feeling a limb that has been removed. The "phantom" limb can itch, tingle or smart.
After healing, most patients see a prosthetic specialist to be fitted with a preparatory limb and then the final definitive limb. After healing, the limb will be swollen and shrinkers will be used to shrink the limb down so that it can be fitted. The skin of the stump needs to be well taken care of, because any skin break-down means you can’t wear the leg until it is healed. A below the knee amputation requires 50% more energy to walk and an above the knee amputee requires 150% more energy to walk. This can make walking very difficult during or after chemotherapy.
Wearing a cannula and having oxygen continuously blowing up your nose can cause dryness and bleeding. There are products that a doctor can prescribe to help with these effects. Some physicians recommend using KY jelly in each nostril to help replace the moisture.
Oxygen tanks can be quite cumbersome. The large liquid oxygen canisters are kept in a patient's home, and an oxygen company usually come once a week to fill the tanks. There are also portable systems that will provide about 3 hours of oxygen. The Inogen One, which is a small concentrator, plugs into the wall and can be run on a battery or can be plugged into a cigarette lighter in a car. It also meets the regulations for airline travel. If you use airline oxygen, the airline charges a hefty fee for each of their canisters.
From Mimi - Online groups like The Liddy Shriver Sarcoma Initiative and the group support found in ACOR provide first-hand anecdotal information. "Been there – Done that" is the message from our contributors, and I would like to thank them. Specific acknowledgements to patients, parents, caregivers, survivors, family, friends: S. Andresen, S. Coulson, M. Fuentes, M. Gorman, M. Hyman, J. Mollica, E. Munroz, J. Tessier, B. Tunstall, M. Weigand, J. Weir.
From Mary - Members and leaders of the Adult Bone Cancer Survivors support group graciously contributed ideas for this article.
Last revised: 12/2008
Last medical review: 12/2008
V5N6 ESUN. Copyright © 2008 Liddy Shriver Sarcoma Initiative.