Cancer without known primary tumor, CUP

Cancer with no known primary tumor, CUP, means you have one or more metastases. Metastases mean that there is a primary tumor somewhere in the body, but at CUP it cannot be found. You can get treatment anyway.

What is cancer without known primary tumor, CUP?

Cancer without a known primary tumor is shortened CUP. About 1300 people are diagnosed each year. Most are over 50 years old.

The CUP diagnosis means that the doctor will find one or more metastases but not the cancer tumor that they come from. The cancer tumor is called the primary tumor.

Cancer can have varying origins from different organs. As a result, treatment and prognosis at CUP vary widely from person to person. The prognosis may be better if the doctor finds the primary tumor.

Why is the primary tumor not found?

Sometimes the primary tumor is so small that it does not appear in X-rays or other examinations, or it has disappeared from the body by itself.

Sometimes the primary tumor has already been removed. For example, it may have been a birthmark with a precursor to cancer.

Symptoms of cancer

Cancer can have various symptoms that can also be due to other things. For example, you may be unusually tired, have a poor appetite, lose weight without knowing why, or have pain somewhere without hurting yourself. You may have a severe swelling somewhere on the body or be swollen in the stomach. 

Your doctor may find you have cancer when you are being examined for any other reason.

In the text Frequently asked questions about cancer, you can read more about symptoms that can sometimes be due to cancer.

When and where should I seek care?

Contact a health care center if you have new symptoms that do not go over and that you do not find any explanation. You can contact most receptions by logging in.

Investigations

When you see your doctor, you will be told about your symptoms, possible past illnesses, and surgeries. It is important to mention if you have removed birthmarks.

It is common to have one or more x-ray examinations that can show if there is any change that may explain your complaints. You will be examined with computed tomography if the doctor finds a suspected tumor. It is for mapping it. 

Often, a tissue sample, called a biopsy, is also needed. Then the doctor takes small samples from a suspected tumor, for example by inserting a needle into it. You will be stunned if you need it.

Other examinations may be colonoscopy and bronchoscopy.

The examinations are performed in accordance with a standardized course of care

You are offered an examination according to a standardized course of care if the doctor suspects you have a CUP. 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 surveys you may need to do.

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.

Treatment can vary greatly

The treatment is adapted to what type of cancer it is, wherein the body it is and how you are feeling.

If the primary tumor is found, you will receive the treatment that is routine for that particular type of cancer.

If the primary tumor is not found, you can still receive treatment. The metastases can be removed if they have not spread as much. Sometimes it is possible to receive radiotherapy or, for example, various types of cell-inhibitory drugs, such as cytostatic drugs or targeted drugs. You also get the treatment for cancer you need to relieve symptoms, for example, if you are in pain.

Good to quit smoking

You who smoke have much to gain from quitting. Stop smoking completely, if you can. Otherwise, pause.

Those who are going to have surgery will recover sooner afterward. Here you can read more about quitting smoking before an operation.

You who are to be treated with radiation can have a more effective result.

Other treatments for cancer may also be more effective if you refrain from smoking. It also reduces the risk of you getting sick again.

Talk to your doctor if you need help to quit smoking. 

If the disease is not removable

The disease cannot be rid of if it has spread widely in the body. Then it can sometimes be possible to get cytostatic treatment  which slows down the disease instead. You also continue with the treatment you need to relieve the hassles you may have. The care that slows or relieves a disease is called palliative care.

How is life affected by CUP?

It can be stressful not knowing where in the body the primary tumor is, or if it remains at all. All the different examinations that may be needed can also feel strenuous, especially if the primary tumor is not detected.

Talk to your doctor or contact the nurse if you need support or advice..

Be involved and influence your care

You have the right to be involved in your care whenever 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 decide on the care plan

You can make a care plan together with the contact nurse, the doctor and other staff. The care plan should answer questions that are important to you.

New medical assessment

You can get a  new medical assessment if you are unsure if you are receiving the care and treatment that is best for you. You will then see another doctor, usually at another specialist clinic. Ask your doctor if you want to know more about how to get a new medical assessment.

Getting a cancer message

There are many ways to respond to a cancer message. You may 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 have the right to understand

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 interpreting assistance if you have a hearing impairment.

Many hospitals have special nurses called contact nurses.  The contact nurse can provide support and also help with various practical things.

For many, it usually feels easier once treatment has begun and they know what is going to happen.

You can get support in several places

The contact nurse or the hospital’s curator can help you if you need to talk more or have questions.

You can contact Cancer Counseling, the Cancer Foundation or, for example, a patient association.

Children also need to know

A minor child 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, regardless of age. That doesn’t mean you have to tell everything.

Support if you are related

Sometimes it can be 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 other people in your area, try letting them support you. It can be family members, friends or acquaintances. Often it will be easier for them to help you if you tell them how it feels and shows if you are worried or sad.

You can get help from the contact nurse or a curator at the hospital if you are close and need supportive calls.

Pregnancy and breastfeeding

Avoid pregnancy if you are being treated for cancer, regardless of your gender. Some treatments can be harmful to a fetus.

Talk to your doctor about which contraceptive is appropriate.

Talk to your doctor before starting treatment if you want to try to get pregnant or use your sperm in pregnancy when you are finished.

Treatment for cancer if you are already pregnant

You can be examined and receive treatment even if you are pregnant. Sometimes care may need to be adapted in different ways.

Radiation examinations and treatments need to be replaced by other methods, or done later, or in a way that protects the fetus.

You can operate. You can receive cytostatic treatment after pregnancy in week 14.

Pregnancy does not affect the disease. Cancer cannot be transmitted to the fetus.

It is only if the cancer is growing rapidly or if it is early in pregnancy that the doctor sometimes recommends that you abort the pregnancy. It is you who decides.

You will be contacted by specialist maternity care.

Talk to your doctor if you want to breastfeed.

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