What happens after treatment for malignant mesothelioma?

What happens after treatment for malignant

mesothelioma?

For some people with mesothelioma, treatment may remove or destroy the cancer.

Completing treatment can be both stressful and exciting. You may be relieved to finish

treatment, but find it hard not to worry about cancer growing or coming back. (When

cancer comes back after treatment, it is called recurrence .) This is a very common

concern in people who have had cancer.

It may take a while before your fears lessen. But it may help to know that many cancer

survivors have learned to live with this uncertainty and are leading full lives. Our

document, Living With Uncertainty: The Fear of Cancer Recurrence, gives more detailed

information on this.

For many people, the mesothelioma may never go away completely. These people may

get regular treatments with chemotherapy, radiation therapy, or other therapies to help

keep the cancer in check. Learning to live with cancer that doesn’t go away can be

difficult and very stressful. It has its own type of uncertainty.

Follow-up care

If you have completed treatment, your doctors will still want to watch you closely. It is

very important to keep all follow-up appointments. During these visits, your doctors will

ask about symptoms, do physical exams, and may order blood tests (such as the

osteopontin or MesoMark tests) or imaging tests such as CT scans or PET scans. There is

no widely agreed upon follow-up schedule for people with mesothelioma. Your doctor

will most likely want to see you fairly often (at least every couple of months or so) at

first. The time between visits may be extended if there are no problems.

Follow-up is needed to check for cancer recurrence or spread, as well as possible side

effects of certain treatments. This is the time for you to ask your health care team any

questions you need answered and to discuss any concerns you might have.

Almost any cancer treatment can have side effects. Some may last for a few weeks to

several months, but others can be permanent. Don’t hesitate to tell your cancer care team

about any symptoms or side effects that bother you so they can help you manage them.

If the cancer does recur, further treatment will depend on the location of the cancer, what

treatments you’ve had before, and your health. For more information on how recurrent

cancer is treated, see the section “Treatment of mesothelioma based on the extent of the

cancer.” For more general information on dealing with a recurrence, you may also want

to our document, When Your Cancer Comes Back: Cancer Recurrence. You can get this

document by calling 1-800-227-2345. Keep your health insurance and copies of your medical

records

At some point after your cancer diagnosis and treatment, you may find yourself seeing a

new doctor who does not know anything about your medical history. It is important that

you be able to give your new doctor the details of your diagnosis and treatment. Make

sure you have the following information handy:

• A copy of your pathology report(s) from any biopsies or surgeries

• If you had surgery, a copy of your operative report(s)

• If you stayed in the hospital, a copy of the discharge summary that doctors prepare

when patients are sent home

• If you had radiation therapy, a summary of the type and dose of radiation and when

and where it was given

• If you had chemotherapy, a list of your drugs, drug doses, and when you took them

It is also important to keep health insurance. Tests and doctor visits cost a lot, and even

though no one wants to think of their cancer coming back, this could happen.

Lifestyle changes after malignant mesothelioma

You can’t change the fact that you have had cancer. What you can change is how you live

the rest of your life – making choices to help you stay healthy and feel as well as you can.

This can be a time to look at your life in new ways. Maybe you are thinking about how to

improve your health over the long term. Some people even start during cancer treatment.

Make healthier choices

For many people, a diagnosis of cancer helps them focus on their health in ways they

may not have thought much about in the past. Are there things you could do that might

make you healthier? Maybe you could try to eat better or get more exercise. Maybe you

could cut down on the alcohol, or give up tobacco. Even things like keeping your stress

level under control may help. Now is a good time to think about making changes that can

have positive effects for the rest of your life. You will feel better and you will also be

healthier.

You can start by working on those things that worry you most. Get help with those that

are harder for you. For instance, if you are thinking about quitting smoking and need

help, call the American Cancer Society at 1-800-227-2345.

Eating better

Eating right can be hard for anyone, but it can get even tougher during and after cancer

treatment. Treatment may change your sense of taste. Nausea can be a problem. You may not feel like eating and lose weight when you don’t want to. Or you may have gained

weight that you can’t seem to lose. All of these things can be very frustrating.

If treatment caused weight changes or eating or taste problems, do the best you can and

keep in mind that these problems usually get better over time. You may find it helps to

eat small portions every 2 to 3 hours until you feel better. You may also want to ask your

cancer team about seeing a dietitian, an expert in nutrition who can give you ideas on

how to deal with these treatment side effects.

One of the best things you can do after cancer treatment is put healthy eating habits into

place. You may be surprised at the long-term benefits of some simple changes, like

increasing the variety of healthy foods you eat. Getting to and staying at a healthy weight,

eating a healthy diet, and limiting your alcohol intake may lower your risk for a number

of types of cancer, as well as having many other health benefits.

Rest, fatigue, and exercise

Extreme tiredness, called fatigue, is very common in people treated for cancer. This is not

a normal tiredness, but a bone-weary exhaustion that doesn’t get better with rest. For

some people, fatigue lasts a long time after treatment, and can make it hard for them to

exercise and do other things they want to do. But exercise can help reduce fatigue.

Studies have shown that patients who follow an exercise program tailored to their

personal needs feel better physically and emotionally and can cope better, too.  

If you were sick and not very active during treatment, it is normal for your fitness,

endurance, and muscle strength to decline. Any plan for physical activity should fit your

own situation. An older person who has never exercised will not be able to take on the

same amount of exercise as a 20-year-old who plays tennis twice a week. If you haven’t

exercised in a few years, you will have to start slowly – maybe just by taking short walks.

Talk with your health care team before starting anything. Get their opinion about your

exercise plans. Then, try to find an exercise buddy so you’re not doing it alone. Having

family or friends involved when starting a new exercise program can give you that extra

boost of support to keep you going when the push just isn’t there.  

If you are very tired, you will need to balance activity with rest. It is OK to rest when you

need to. Sometimes it’s really hard for people to allow themselves to rest when they are

used to working all day or taking care of a household, but this is not the time to push

yourself too hard. Listen to your body and rest when you need to. (For more information

on dealing with fatigue, please see Fatigue in People With Cancer and Anemia in People

With Cancer.)

Keep in mind exercise can improve your physical and emotional health.

• It improves your cardiovascular (heart and circulation) fitness.

• Along with a good diet, it will help you get to and stay at a healthy weight.

• It makes your muscles stronger.  • It reduces fatigue and helps you have more energy.

• It can help lower anxiety and depression.

• It can make you feel happier.

• It helps you feel better about yourself.

And long term, we know that getting regular physical activity plays a role in helping to

lower the risk of some cancers, as well as having other health benefits.

Can I lower my risk of the cancer progressing or coming back?

Most people want to know if there are specific lifestyle changes they can make to reduce

their risk of cancer progressing or coming back. Unfortunately, for most cancers there is

little solid evidence to guide people. This doesn’t mean that nothing will help – it’s just

that for the most part this is an area that hasn’t been well studied. Most studies have

looked at lifestyle changes as ways of preventing cancer in the first place, not slowing it

down or preventing it from coming back.

At this time, not enough is known about mesothelioma to say for sure if there are things

you can do that will be helpful. Adopting healthy behaviors such as not smoking, eating

well, exercising, and maintaining a healthy weight may help, but no one knows for sure.

However, we do know that these types of changes can have positive effects on your

health that can extend beyond your risk of cancer.

How does having malignant mesothelioma affect your

emotional health?

During and after treatment, you may find yourself overcome with many different

emotions. This happens to a lot of people.

You may find yourself thinking about death and dying. Or maybe you’re more aware of

the effect the cancer has on your family, friends, and career. You may take a new look at

your relationships with those around you. Unexpected issues may also cause concern. For

instance, you may see your health care team less often after treatment and have more time

on your hands. These changes can make some people anxious.

Almost everyone who is going through or has been through cancer can benefit from

getting some type of support. You need people you can turn to for strength and comfort.

Support can come in many forms: family, friends, cancer support groups, church or

spiritual groups, online support communities, or one-on-one counselors. What’s best for

you depends on your situation and personality. Some people feel safe in peer-support

groups or education groups. Others would rather talk in an informal setting, such as

church. Others may feel more at ease talking one-on-one with a trusted friend or

counselor. Whatever your source of strength or comfort, make sure you have a place to

go with your concerns.

The cancer journey can feel very lonely. It is not necessary or good for you to try to deal

with everything on your own. And your friends and family may feel shut out if you do

not include them. Let them in, and let in anyone else who you feel may help. If you aren’t

sure who can help, call your American Cancer Society at 1-800-227-2345 and we can put

you in touch with a group or resource that may work for you.

If treatment of malignant mesothelioma stops working

If cancer keeps growing or comes back after one kind of treatment, it may be possible to

try another treatment plan that might still cure the cancer, or at least shrink the tumors

enough to help you live longer and feel better. But when a person has tried many

different treatments and the cancer has not gotten any better, the cancer tends to become

resistant to all treatment. If this happens, it’s important to weigh the possible limited

benefits of a new treatment against the possible downsides, including treatment side

effects. Everyone has their own way of looking at this.

This is likely to be the hardest part of your battle with cancer – when you have been

through many medical treatments and nothing’s working anymore. Your doctor may offer

you new options, but at some point you may need to consider that treatment is not likely

to improve your health or change your outcome or survival.

If you want to continue to get treatment for as long as you can, you need to think about

the odds of treatment having any benefit and how this compares to the possible risks and

side effects. In many cases, your doctor can estimate how likely it is the cancer will

respond to treatment you are considering. For instance, the doctor may say that more

treatment might have about a 1 in 100 chance of working. Some people are still tempted

to try this. But it is important to think about and understand your reasons for choosing

this plan.

No matter what you decide to do, it is important that you feel as good as you can. Make

sure you are asking for and getting treatment for any symptoms you might have, such as

nausea or pain. This type of treatment is called palliative care .

Palliative care helps relieve symptoms, but it is not expected to cure the disease. It can be

given along with cancer treatment, or can even be cancer treatment. The difference is its

purpose – the main goal of palliative care is to improve the quality of your life, or help

you feel as good as you can for as long as you can. Sometimes this means using drugs to

help with symptoms like pain or nausea. Sometimes, though, the treatments used to

control your symptoms are the same as those used to treat cancer. For instance, radiation

might be used to help relieve bone pain caused by cancer that has spread to the bones. Or

chemo might be used to help shrink a tumor and keep it from blocking the bowels. But

this is not the same as treatment to try to cure the cancer.

At some point, you may benefit from hospice care. This is special care that treats the

person rather than the disease; it focuses on quality rather than length of life. Most of the

time, it is given at home. Your cancer may be causing problems that need to be managed,

and hospice focuses on your comfort. You should know that while getting hospice care

often means the end of treatments such as chemo and radiation, it doesn’t mean you can’t have treatment for the problems caused by your cancer or other health conditions. In

hospice the focus of your care is on living life as fully as possible and feeling as well as

you can at this difficult time. You can learn more about hospice in our document called

Hospice Care.

Staying hopeful is important, too. Your hope for a cure may not be as bright, but there is

still hope for good times with family and friends – times that are filled with happiness

and meaning. Pausing at this time in your cancer treatment gives you a chance to refocus

on the most important things in your life. Now is the time to do some things you’ve

always wanted to do and to stop doing the things you no longer want to do. Though the

cancer may be beyond your control, there are still choices you can make.