After Cancer
During treatment, just getting through each day can take all of the energy you have, making it hard to think about anything else, especially life after treatment. After treatments are over, many people experience mixed emotions of being glad it’s over, yet anxious about what the future may hold. This may be an unexpectedly challenging period of adjustment, so be sensitive to your own needs. Don’t expect to always feel good now that you’re out of treatment, and take the time you need to come to terms with what you have been through.
I’m Living Proof – Surviving Melanoma
The term ‘survivor’ can mean different things to different people. For some, a survivor may have completed active treatment and is free from any signs of melanoma. For others, the term may refer to anyone who has been diagnosed with melanoma.
Save Your Skin Foundation wishes to bring hope and support to all those newly diagnosed, currently undergoing treatment, or to those “in remission” or referred to as “NED” – with no evidence of disease. This website focuses on those individuals that have generally completed active treatment and that are in remission or on maintenance therapy; however, we invite all melanoma patients, at any stage, to get in touch.
HAND IN HAND, WE FIGHT SKIN CANCER TOGETHER.
Follow Up Medical Care
Melanoma survivors should all receive regular medical checkups that include a review of a patient’s medical history and a physical exam. It is important to be aware of any changes in your health or any issues that may occur due to cancer treatments. These regular appointments are also opportunities to check for physical and emotional repercussions that may develop months or years after treatment ends.
Knowing what to expect after melanoma treatments can help you and your caregivers to make lifestyle changes and other important decisions about the future.
Related resources:
During your follow up medical appointments, you should tell your doctor about:
- Any emotions that you are experiencing such as depression, sadness, or anxiety
- Any symptoms that you think may be a sign that your cancer has returned
- Any pain
- Any physical problems that interfere with daily life, such as fatigue; difficulty with your bladder, bowel, or sexual function; difficulty concentrating; memory changes; trouble sleeping; and weight gain or loss
- Any medicines, vitamins, herbs, or other treatments you may be using
- Any changes in your family medical history, including any new cancers
Medical issues and recurrences are not always detected during follow-up visits. It is important for patients to be aware of their own health and to report any changes or problems to their healthcare provider/doctor.
Related resources:
National Cancer Institute: Follow-up Care After Cancer Treatment
Depending on where a patient is in the post-treatment process, they may return to their doctor for a follow up appointment every three to four months during the first two to three years after treatment, and once or twice a year after that. All patients should speak with their doctor or health provider to discuss what their personal follow up schedule should be.
During follow up appointments, it is normal for your doctor to recommend tests to check for a recurrence or to screen for other types of cancer. Speak with your doctor about what tests you may require and what follow-up care plan is most appropriate for you. It is important for patients to speak with their doctor about any questions or concerns related to follow-up care and what to expect.
You may wish to have one doctor provide the follow up post-treatment care and another doctor to provide other medical care. Choosing a doctor that you feel comfortable with will make this process easier.
Once you have completed your treatment, it is a good idea to ask your doctor for a detailed care summary and follow-up plan. You may also want to ask the below questions so that you have a better understanding about your care and what to expect next.
- What treatments and drugs have I been given?
- How often should I have a routine checkup?
- Which doctor should I see for my follow-up cancer care?
- What are the chances that my melanoma will come back or that I will get another type of cancer?
- What follow-up tests, if any, should I have?
- How often will I need these tests?
- What signs and symptoms should I watch for?
- If I notice any symptoms, whom should I contact?
- What are the common long term and late effects of the treatment I received?
- What should I do to maintain my health and well-being?
- What long term physical changes should I expect from the treatment I received?
- What emotional changes can I expect now that I have concluded treatment?
Patients do not always see the same doctor for their follow-up care, so keeping the following information to share with your follow-up healthcare providers is important:
- Your specific cancer diagnosis (what type of cancer and stage)
- Date(s) of cancer diagnosis
- Results of any diagnostic test(s)
- Details of all cancer treatments, including locations and dates where treatment was received, names and doses of drugs, and types and dates of surgeries
- Contact information for all doctors and other health care professionals involved in your care
- Side effects and complications that occurred during and after treatment
- Medications received for any side effects – i.e. medication for pain, nausea, emotional support and nutritional supplements
- Identifying number and title of clinical trial (if you participated in a clinical trial)
Physical Changes
Even though you may have had the same melanoma diagnosis or treatment as someone else, your post-treatment experience may be quite different. Your doctor should talk to you about the long-term effects of your specific cancer treatment.
Some of the most common physical changes that people report are:
- Fatigue
- Memory and concentration changes
- Pain
- Nervous system changes
- Lymphedema or swelling
- Mouth and teeth problems
- Changes in weight and eating habits
- Trouble swallowing
- Bladder or bowel control problems
- Menopause symptoms
Your doctor can help you to manage and control many of these changes. Speak with your doctor at the first sign of any problems you experience.
Related resources:
Family Issues
When treatment ends, families are sometimes unprepared for the length of time recovery can take. As a survivor, you still need support and that may be difficult for family and friends to understand. Often, recovery often lasts longer than your treatment, which can lead to worry and frustration for everyone. It may also be difficult for your friends and family to understand the support you will need as a survivor.
Your post-treatment recovery, and your life as a survivor, are personal experiences that take time to figure out. Be honest with yourself and others, and don’t be afraid to ask for support. It will be helpful to both you and your loved ones to keep them informed about your cancer, and involved in your recovery.
Here are some common issues people have shared with us:
People expect you to bounce back to who you were before cancer.
The reality is, you’re likely not physically or emotionally who you were before cancer and are no longer able to do all the things you once did. You may be able to one day – but this might take months or years. It’s important to be patient and to be open and honest with others about what you can and cannot do.
You still need the support of friends and family.
This doesn’t sound like it should be an issue, but often survivors feel guilty about asking for support when they are recovering or in remission. It’s common to feel that others have already done so much and to feel guilty for asking for more help. In most cases, however, keeping loved ones involved in your recovery and your life after cancer continues to make everyone stronger.
You expect more from your loved ones than you receive.
Your family and friends may disappoint you, which can be frustrating. The attention you received during treatment may have lessened since the ending of your active treatment. Be open and honest with loved ones about how you are feeling, and ask for support and help when you need it.
Understanding the dynamics of survivorship relationships.
At the same time that you are physically and emotionally recovering from the roller coaster of melanoma, your family is also adjusting. Loved ones are still coping with the stress and changes that the cancer journey took everyone on. They too need time to understand what they went through, and what support they may need as caregivers. It may be hard for family and friends to express feelings or know how to talk about what each person went through. It’s important to ask for help from a professional if your family or friends feel they need outside support. Ask your doctor to refer you to a counselor or expert on family concerns after cancer.
Related resources:
FAQ’s
How can we define ‘survivorship’?
‘Survivorship’ can have many different meanings, depending on your outlook on the situation. The Canadian Cancer Society suggests a way of defining a cancer survivor as anyone who:
- has finished and is recovering from their active cancer treatment
- is on maintenance therapy
- is having ongoing treatment for cancer that is stable and slow growing
- is on active surveillance
- is in remission or “NED” – having no evidence of disease
Wherever you are in your recovery, ‘survivorship’ means simply what it means to you. If you believe that you are a survivor, take this label on and be proud of your strength!
Everyone’s recovery is unique, both in length and form. Sometimes the recovery process from a treatment can take longer than the treatment itself. Some people prefer to get as close to their ‘normal’ life before cancer as possible, while others decide to make changes in their lives or do something they’ve always wanted to- such as travelling, or taking up new hobbies. Whatever you want your recovery to look like, keep in mind that during this period you will have many medical appointments to track your progress, and plan accordingly.
Your physical recovery will be aided by general well-being. Eating well and exercising will help your general health, and your immune system, improve. Quitting smoking will also improve your general health, and lessen the chances of a recurrence. Your skin will be sensitive after skin cancer, so practicing sun safety will also help to keep a recurrence at bay.
While it seems like a given that you should be happy to complete your cancer treatments, the opposite is true for some people. There are many causes of unhappiness after treatment, including grief over lost time, fear of a recurrence, memories of the difficulties of treatment, changes in your body, or financial stress. These are all valid concerns to be having in the wake of cancer treatment. These can be good things to talk about with friends and family, or in a cancer support group. If you are worried that you may be clinically depressed, consult your healthcare team, whom may recommend you to a mental health professional.
Many people are able to go back to work quickly after their treatments. However, it is wise to speak to your human resources department to determine how your employment and health benefits will be affected upon your return to work, and to see if your employer has any support programs for employees returning to work. While it is against the law to discriminate against someone who has cancer, it is possible that your position at work has changed during your absence. If you are looking for a new job after treatment, be aware that your medical history might make your job hunt more difficult.
Your medical schedule after treatment depends on your cancer, what treatments you received, and your body’s reaction to these treatments. Regardless of these factors, you will be have medical appointments regularly so your healthcare team can monitor your recovery and be able to catch a recurrence, if you have one. These follow-up appointments may be frightening; it might help to think of them as a tool for you to be in control of your body and your cancer. We recommend that you keep a personal health record for your own benefit. This would include your type of cancer and stage, the date of your diagnosis, dates of tests you’ve had and their results, contact information for your healthcare team, and other pertinent information. Here are some guidelines for your potential follow-up schedule. Remember to perform a self-examination of your skin monthly in addition to these appointments:
Stage 0: Your doctor will examine your skin every year, but you should self-examine once a month.
Stage IA: Your doctor will see you every three to twelve months for five years, and once a year after that. You should self-examine your skin once a month.
Stage IB, IIA, IIB, IIC: Your doctor will see you every three to six months for two years, then every three to twelves months for two more years, and once a year after that. You should self-examine your skin once a month.
Stage IIIA, IIIB, IIIC: Your doctor will see you every three months for the first year, every four months in the second year, every six months for the next three years, and once a year after that. You should self-examine your skin once a month.
With the exception of immunotherapy, cancer treatments may weaken your immune system. The wound left after a surgery increases the risks of an infection, while radiation and chemotherapy limit the amount of white blood cells produced by your body. Therefore, your body is more susceptible to infections and other illnesses during your recovery. It is advisable to avoid people who have illnesses, such as the cold or flu, and to wash your hands often. Keeping in good health by not smoking, drinking only in moderation, eating well, and exercising will also improve your health. Nutritional supplements such as vitamin A and probiotics are known to help improve the immune system.
Harvard Health Publications: How to Boost your Immune System
Our financial situation after treatment depends on how long you have been absent from work, your health benefits, and your medical expenses. During your recovery, there may also be continuing costs for medication or equipment. Once you are back to work, claiming some of your medical costs on your income tax return might help to alleviate your financial stress. Your life and travel insurance premiums may also change given your new medical history. Keep in mind that you may not be able to return to full time work right away.
If you are unable to go back to work for a long period of time, or not at all, you could look into your disability benefits. These benefits pay a percentage of your salary, but are dependent on your employer’s coverage. You might also qualify for governmental benefits through the Canada pension plan disability program.
For more resources about financial issues after cancer, please CLICK HERE
Having a melanoma in the past increases the chances of a recurrence; therefore it is important to keep your body healthy during your recovery period. Eating well and exercising will make you feel better, and help the recovery of your immune system. Quitting smoking and practicing sun safety in the wake of skin cancer will also minimize your chances of a recurrence. As you will be seeing your doctor regularly while you are recovering, make sure to ask them about any questions or concerns you might have. Ask your doctor what symptoms to look out for so you don’t worry about every ache and pain, and if you notice one of these symptoms, call your doctor right away, even if it is between appointments. Your medical schedule after treatment will be as follows (or similar):
Stage 0: Your doctor will examine your skin every year, but you should self-examine once a month.
Stage IA: Your doctor will see you every three to twelve months for five years, and once a year after that. You should self-examine your skin once a month.
Stage IB, IIA, IIB, IIC: Your doctor will see you every three to six months for two years, then every three to twelve months for two more years, and once a year after that. You should self-examine your skin once a month.
Stage IIIA, IIIB, IIIC: Your doctor will see you every three months for the first year, every four months in the second year, every six months for the next three years, and once a year after that. You should self-examine your skin once a month.
If you are experiencing anxiety around a recurrence, speaking about it to family, friends, or a counsellor can help. It is also advisable to keep your medical insurance for as long as possible in case of a recurrence.
It is natural for changes in your medical status to strain your relationships with friends and family. Your general perspective has probably altered considerably, making it difficult for you to relate to those around you. Your friends and family might not know how to treat you during your recovery, or assume that you’re back to your healthy and energetic self, which you might not be yet. In contrast, they might be overprotective of you, when you’re looking for independence in your recovery. Ask your family and friends to be patient with you, and share your feelings. Be honest about what you feel up to doing; their behaviour towards you will not change unless you tell them what you need, and your relationship may become stronger as a result. If you find yourself unable to talk about your experience with cancer to friends and family, it might be helpful to look into a support group, such as the one run by Save Your Skin. Speaking to other cancer survivors about your shared experience may help to alleviate any resentment you have towards other people in your life for not being able to relate to this experience.
If you are wanting to have a child after your treatments, the first step is to contact your healthcare team. Their recommendation will be based on your age, the kind of treatments you received, whether your cancer has genetic links, and your chances of a recurrence. It is recommended that, regardless of which treatment you received, that men wait at least a year for their sperm to heal, and that women wait for around six months for any eggs that may have been affected by treatment to leave the body. Babies who are conceived during or too soon after treatment may have a higher chance of birth defects. Certain cancer treatments, such as radiation and chemotherapy, may negatively affect your fertility or reproductive organs. Be prepared for the possibility that it might be inadvisable, very difficult or impossible to become pregnant after cancer treatments.
Physical side effects after treatments depend on the treatment(s) you received, and how your body coped with them. Side effects can include nausea, fatigue, pain, incontinence, menopausal symptoms, nerve damage, and problems with your digestive system and organs. Ask your doctor what kinds of side effects are possible given your medical history in order to prepare yourself. Also be aware that your immune system may have been weakened by your treatment (especially in the case of chemo and radiation therapy), and you may be more prone to infections and other illnesses during your recovery.
If your lymph nodes have been removed by surgery or damaged by radiation therapy, you may also be at risk for lymphedema. Lymphedema is when the buildup of lymph fluids in the body causes swelling. This can be a long-term or short-term condition. Symptoms of lymphedema include decreased flexibility in joints, feelings of heaviness in the arms or legs, feelings of tightness in the fitting of clothing and jewelry (without weight change), and recurring infections in the same area. Let your doctor know if you notice any of these symptoms, as lymphedema is easier to manage when it is caught early.
Listed above are a few sources of information and support you might find useful. These groups are not connected to Save Your Skin Foundation. We are providing the links as useful sources of information but do not monitor content for accuracy and quality.
NOTE: The information on the Save Your Skin website is not intended to replace the medical advice of a doctor or healthcare provider. While we make every effort to ensure that the information on our site is as current as possible, please note that information and statistics are subject to change as new research and studies are published.
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Making awareness and education available is crucial. Since 2006, the Foundation has worked to raise awareness of melanoma and non-melanoma skin cancers focusing on education, prevention and the need for improved patient care.
