Managing post-treatment side effects

While you may have expected side effects when you were actively in treatment, it may surprise and frustrate you that some of these remain after your treatment has finished. Post-treatment side effects vary greatly between individuals and by disease, site, and type of treatment.
Some of the most common ones include:

    • Fatigue
    • Changes in eating and drinking
    • Difficulties in memory and concentration
    • Problems with sleep
    • Lymphedemia (swelling)
    • Nerve damage (neuropathy)
    • Weight changes
    • Sexual changes
    • Pain

Side effects may improve with time and some may take many months to settle.
If you are struggling in coping with long term side effects from treatment, you should seek advice from your head and neck team or you may wish to discuss these with other patient who have had similar experiences.
Additional effects can include genetics and long term health.

Genetics

As you transition through this post-treatment period and begin to adjust, you’ll find your focus is changing and it’s likely you may start to have concerns for your family and be worried that your type of cancer could be genetic
Although this fear is understandable, the majority of the time it is not warranted.
In fact, research demonstrates that only approximately 5% of cancers are caused by genetics.
If you have any questions or concerns regarding your type of cancer it is best to speak with your healthcare team. They can then decide if you require a genetic counselling referral.

Long term effects

You may also find yourself worrying about the long term effects of your cancer and the treatment you’ve undergone.
Your type and stage of cancer, and the type of treatment used and its effectiveness will have a bearing on this, as well as your overall health.
The best way to find out about any possible long term effects is to speak with your medical team.
Although long term effects may not appear for some time, you may find it helpful to ask your medical team about them now for a couple of reasons.

    • If your fertility has been affected by your cancer treatment ask your medical team for specialist help.
    • The long term health effects will probably not appear until you are back in the care of your GP. Although your GP will be well trained to identify general health concerns, they may not be a specialist in your type of cancer and its risks.
    • Knowing what has been identified as a potential long term effect of your cancer and what symptoms to look for as an indicator of this, will make it easier to report them to your GP and lead to more efficient treatment or management.

Clarifying with your specialists about what you might expect long-term from cancer and its treatment could help you manage the very common anxiety that often occurs following treatment.
Although you will need to find your way with how your body feels and learn that every little niggle or area of discomfort does not need to cause you alarm, it is important to feel empowered to be able to identify something worthy of attention.

Concern of recurrence

A very practical and important way of managing your concerns is to speak with your healthcare team.
You’ll find that after a diagnosis of cancer it is very common to be aware of every twinge, ache or pain.
Often these concerns are simply everyday occurrences that have nothing to do with the recurrence of cancer. Sometimes, however, these are important indicators that need to be addressed
To help you manage your concerns you could implement any of the following:

      • Be informed
        Speak with your specialists to learn more about some of the signs and symptoms of recurrence.
      • Move your appointment up
        Contact your clinic to ask if you can schedule your appointment for an earlier date. The schedule of follow-up visits is simply a guideline which you can change depending on your needs and concerns.
      • Make an appointment
        If you have any questions or uncertainties, book an appointment with a health professional who knows and understands your history of cancer. If you are back under the care of your GP, having your personal health records and details of your cancer treatments in an organised folder, can be particularly helpful.
      • Be specific
        Your healthcare team will probably want to know the duration of your symptoms, if you have noticed any patterns of when they are better or worse, the location(s), and what may help or worsen your symptoms. It will help them if you have a note of these details and take them to your appointment. Noting things down will also help you to remember and share all the things that are concerning you.

Our thanks to Maggie’s Centre, Oxford for their help preparing this information.

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