Sarcoma is the collective name for about 50 different cancers. Common to the diseases is that they occur somewhere in the support tissues of the body. Examples of supporting tissues are fat, connective tissue, muscles, vessels, and skeletons. Sarcoma is a fairly rare disease.
A disease in many varieties
The sarcoma diseases are often divided into soft tissue and skeletal sarcoma. Soft tissue sarcomas are more common than skeletal sarcomas.
The possibility of getting rid of the disease is different because there are so many variants of sarcoma. A soft tissue sarcoma can almost always be lost if it is detected early and grows slowly. Then the sarcoma is easier to treat.
A skeletal sarcoma can be more difficult to get rid of if surgery is not possible. The prognosis is often better for children. This is because, among other things, cytostatic drugs are often particularly effective at that time.
There are treatments that allow you to live a good life, even if you have sarcomas that cannot be removed.
Soft tissue sarcoma
Soft tissue sarcomas are sarcomas of fat, muscle, vessels and connective tissue. Rhabdomyosarcoma occurs in the muscles and is common in sarcomas in children. But half of those who get soft tissue sarcomas are over 60 years old.
Skeletal sarcoma can also be called primary skeletal cancer. In completely different cancers, the cancerous tumor can sometimes spread and form skeletal metastases. But this is not usually called skeletal cancer. Here are some different types of skeletal sarcoma:
- Osteosarcoma is the most common form of skeletal sarcoma. It is often children and adolescents who get the disease.
- Ewing’s sarcoma can sometimes also grow outside the skeleton. Ewing’s sarcoma is most common in children with sarcoma.
- Chondrosarcoma occurs in cartilage cells and is more common in older people.
Symptoms of sarcoma
In sarcoma, you may have one or more of these symptoms:
- It hurts somewhere in the skeleton in a way that you do not recognize and cannot explain with, for example, you have overworked. It can hurt when you move or exert yourself. It can also hurt when you rest.
- You have swelling or lump that grows.
- It feels like it is pressing in the stomach or intestines.
The symptoms of sarcoma can have other causes and need not mean you have cancer.
When and where should I seek care?
Contact a health care provider if you have symptoms that you believe may be due to sarcoma. You can contact most receptions by logging in.
You can tell your doctor about your complaints. The doctor does a body examination. Here are some other common studies:
An ordinary X-ray examination can often show if there is anything in the body that needs further investigation.
Computer tomography or examination with a magnetic camera
Computer tomography or magnetic camera examination can provide answers to how large a possible sarcoma is, how it grows and whether it has spread. It is different if one is examined with computed tomography or magnetic camera. Sometimes one method fits better than the other.
Tissue test – biopsy
The doctor takes a tissue sample by inserting a needle into the suspected cancer tumor. You get local anesthesia before. The tissue sample is examined in a laboratory so that it is safe to say if it is sarcoma and what kind of sarcoma. The answers are needed for you to receive the most effective treatment possible. Another word for tissue testing is a biopsy.
Investigation according to a standardized course of care
If the doctor suspects you may have sarcoma, you are offered an examination according to a standardized course of care.
Standardized care is a way of organizing the investigation so that it goes as quickly as possible. Among other things, there are times set for the investigations that may be needed.
The doctor who writes the referral tells you why you should be investigated according to a standardized course of care, what it means and when you can be told if you have cancer or not.
It is often quick to get calls for examinations in a standardized course of care. It is good if you are clear about how the staff most safely reach you so that you do not miss any time.
Getting a cancer message
There are many ways to respond to a cancer message. Often, you need plenty of time to talk to your doctor and other healthcare professionals about what the message means. If possible, please let a relative accompany you. The related person can act as a support and help to remember what has been said.
You can also ask to have the information written down so you can read it peacefully. Ask questions if you don’t understand. You have the right to receive information in your own language. You also have the right to receive interpreting assistance if you have a hearing impairment.
In many hospitals, there are special nurses called contact nurses who can provide support and also help with various practical things.
You can get help in several places
Are you worried or have questions? Talk to the contact nurse or the hospital’s curator. You can also contact for example the Cancer Foundation or Cancer Counseling. Here you will find contact information for them and others you can also talk to.
Here you can read more about how you can get help and support in cancer.
For many, it usually feels easier once the treatment of sarcoma has begun and they know what is going to happen.
Tell the kids
An underage child living at home has the right to receive information and support based on his or her own needs if a relative is ill. It is the responsibility of care. If you want to tell the child yourself, you can get help with what you have to say. Often it is good to make children as involved as possible, no matter how big or small they are. That doesn’t mean you have to tell everything.
Treatment for sarcoma
All forms of sarcoma are mostly treated with surgery that is combined with cytostatic or radiotherapy or both cytostatic and radiotherapy.
If you are going to have surgery, you will have back anesthesia or anesthesia. Sometimes you may need both.
The cancer tumor is removed. The surgeon also removes some of the tissue around it, to make sure all cancer is present.
What is removed may need to be replaced. Then it is done at the same time as the operation. It may be skin that needs to be transplanted and then taken from another part of your body.
Rare with amputation
It is rare, but sometimes the operation involves removing some of the skeletons. It can usually be replaced with other parts of the skeleton or with a plastic or metal prosthesis. It is unusual for a body part to be completely removed due to skeletal cancer. It is only done when it is the only chance to remove the disease or to avoid another type of surgery that would result in major disability.
Meet the doctors before surgery
You will know well in advance of the operation how it is planned. You can meet with the anesthetist and surgeon so that you can ask questions and prepare as you need.
After the surgery
You need to stay in the hospital for three to five days, maybe up to a week. It depends on how you feel.
You have a small plastic tube in the surgical wound that needs to remain for a few days to drain blood and tissue fluid. It’s called drainage.
Already the day after the surgery you have to get up and go. It is important to avoid blood clots.
You will take painkillers with you when you leave the hospital. Take them as long as you need them. You also know who to contact if, for example, you need more painkillers or any other problems that you need help with.
Good to quit smoking
If you smoke, the winnings are many to stop before an operation. The wounds heal faster, blood circulation and fitness improve so you recover faster. The best thing is to quit smoking completely, but if it fails, it is good if you can refrain from smoking before the surgery and even the first weeks afterward. If you need help to quit smoking, your doctor can tell you what support is available.
Cytostatic and radiation therapy
It is common to need treatment with cytostatics or radiotherapy even if you have been operated on. Sometimes both cytostatic and radiotherapy are needed after surgery. The treatments reduce the risk of the disease coming back.
It varies how long the treatment for sarcoma needs to last. Cytostatic treatment can last from a few months to a year.
Sometimes cytostatic or radiotherapy is used before surgery. Then the purpose is for the cancer tumor to shrink to make it easier to operate.
Special cytostatic treatment can sometimes act as an alternative to amputation.
Treatment for soft tissue sarcoma
It is common for the operation of a soft tissue sarcoma to be followed by radiation therapy. You can also get radiation treatment before surgery if the cancer tumor needs to shrink. If the risk of relapse is high, you may also receive treatment with cytostatic drugs.
Treatment for osteosarcoma
It is common to need cytostatic drugs both before and after surgery of the skeletal cancer form osteosarcoma. There may be small metastases, daughter tumors, that are difficult to detect. Therefore, you get cytostatic as a safety measure. If the osteosarcoma is not operable, you may instead receive radiotherapy and cytostatic therapy to remove the cancerous tumor.
Treatment for Ewing’s sarcoma
In Ewing’s sarcoma, treatment usually begins with cytostatic drugs. Then you are operated on. Afterward, you may need both cytostatic and radiotherapy.
Treatment of chondrosarcoma
If you have chondrosarcoma, you may need radiation treatment before or after surgery. Other times, surgery is enough.
Cytostatic instead of amputation
In some sarcomas, for example in an arm or leg, a specific cytostatic treatment may be an alternative to amputation. The treatment is called isolated hyperthermic perfusion.
One form of soft tissue sarcoma is called GIST, a gastrointestinal stromal tumor. It is located in the muscle cells of the gastrointestinal tract. GIST can sometimes be treated with a form of targeted treatment called tyrosine kinase inhibitor. The treatment blocks a protein called tyrosine kinase. Tyrosine kinase is formed in altered cells and makes the cancer cells.
After the treatment, you have to go on checks. Then the doctor examines you to see how you are feeling and to see if the disease has returned. You will be examined with a magnetic camera and with x-ray or computed tomography.
It is different how often you need to be in control and how long you need to do it.
If cancer comes back
Sometimes the disease comes back. It’s called a relapse. If cancer comes back in the same place, you can get rid of the disease again. Then you are operated on or receive radiotherapy, or are both operated and receive radiotherapy.
If the disease has spread in the body and formed metastases, it may sometimes be possible to remove the metastases with cytostatic treatment, surgery or radiotherapy.
Treatment if cancer cannot be removed
Treatment with cytostatic drugs can curb the disease if it cannot be removed. Sometimes cytostatic drugs are combined with targeted drugs, such as tyrosine kinase inhibitors. You also receive treatment that relieves discomfort. It is called palliative care.
How is life affected by sarcoma?
How life is affected after treatment for sarcoma depends on how you are feeling and what kind of treatment you have received.
If you have had an easily treated sarcoma, you can quickly return to living much as you did before the illness.
If you have received a prosthesis, you will be assisted with training to make the prosthesis work well.
It is common to feel very tired during treatment and even afterward. Fatigue is called fatigue. Use energy to do things you like and feel important to you. Rest brief moments at a time. Long rest breaks can make you feel even more tired. Touch yourself as much as you can.
You always have the experience of what you have been with. It is common for it to feel painful periodically, but usually, it gets better – although it may take time. Some feel vulnerable and worried long after treatment is over.
Although it can often feel heavy and that much can be different, many may have a good quality of life after receiving treatment for sarcoma.
It can sometimes feel difficult to be close to someone who is ill. Maybe you want to give support while you have a strong concern and feel bad? It is very common to do so.
If you have people close to you, try letting them support you. Often it will be easier for them to help you if you tell them how it feels. You can also talk to the contact nurse if you are close and need supportive calls.
Be involved and influence your care
You have the right to be involved in your care as far as possible. The healthcare staff should tell you what treatment options are available. They should make sure you understand what the different options mean, what side effects are available and where you can get treatment. That way you can help decide which treatment is right for you.
You can make a care plan together with the contact nurse, the doctor and other staff. It should answer questions that are important to you. Here are suggestions on such issues:
- What is the purpose of the examinations and treatments?
- What is the next step in health care and when will it happen?
- What can I do myself to feel better?
- How can I get the rehabilitation I need?
- Who can I contact if I suddenly feel worse or feel anxious?
New medical assessment
You may get a new medical assessment from another doctor. Obtaining another doctor’s assessment can help you, for example, if you are unsure which treatment is best for you. Wanting to get a new medical assessment does not mean that you are dissatisfied with your doctor’s assessment. Ask your doctor if you want to know more.