Long-term and late effects of cancer treatment

6 minute read time.

Long-term and late effects of cancer treatment are sometimes difficult to find information on. In today’s blog, Information Development Nurse Teri talks about some of the long-term and late physical effects of treatment, and ways to manage them.

For most people, the side effects of cancer treatment begin to improve once their treatment has finished. For some people, however, the side effects don’t completely go away, and new ones may even develop months or years later.

If a side effect has not gone away within 6 months of finishing treatment, this is called a long-term effect. Long-term effects may improve and go away over time, but some can be permanent.

Some people may have late effects which can develop months or even years after treatment has finished.

Let your cancer doctor or specialist nurse know if you are still experiencing side effects or develop a new symptom or problem. They will be able to assess any symptoms you have and explain whether it might be a late effect of your cancer treatment. There are usually ways to help you cope or manage possible late effects.

This blog will focus on some of the physical long-term or late effects and ways to manage them. Late effects can depend on the treatment that you have had.

Problems with the bowel and bladder

Surgery, radiotherapy and chemotherapy may affect the bowel and cause changes to the bladder. There are different ways bowel and bladder problems can be treated or managed. Treatment will depend on your symptoms and what the cause is. Many late bowel effects and bladder problems can be managed and treated successfully.

You may be referred to:

  • a continence specialist
  • a specialist doctor in bladder problems (urologist)
  • a specialist in stomach and bowel problems (gastroenterologist)
  • an expert doctor who specialises in treating the late effects of radiotherapy.

They may do some tests to find out the exact cause and can give you advice and support.

We have more information about managing the late effects of bowel cancer treatment and about managing the late effects of pelvic radiotherapy

Cancer treatments and bone health

Some cancer treatments reduce the levels of the hormones oestrogen and testosterone in the body. This can lead to bone loss and weakening of the bones (osteoporosis). Other cancer treatments can also cause bone loss.

If you are at risk of weak bones, you can have tests done to check your bone health. There are drug treatments that can help to reduce bone loss and protect your bones.

Your doctor may advise you to take calcium and vitamin D supplements. Some people may be prescribed bisphosphonates. If you can, try to find a type of exercise that you enjoy and exercise regularly to get the most benefit. Don’t push yourself too hard, though.

We have more information in our information on the late effects of breast cancer treatment. We also have information about physical activity

Effects on your fertility or sex life

Treatments for cancer may affect fertility. Your doctors may talk to you about ways to preserve your fertility before you start your cancer treatment. Many hospitals have specialist nurses who can offer support and fertility clinics will have a counsellor you can talk to. Your GP or cancer doctor can help to arrange this.

Cancer treatment can affect your sex life and the way you feel about yourself sexually. If you’re having sexual difficulties caused by cancer and its treatment, there are things that can help.

We have more information about how cancer treatment can affect fertility in men and women, relationships and sex and appearance and body image.

Lymphoedema

Lymphoedema is a chronic condition that causes swelling when the lymphatic system is not able to drain fluid properly.

Lymphoedema can be caused by cancer itself or develop as a side effect of cancer treatment. It may appear months or years after cancer treatment. Lymphoedema can affect different parts of the body, especially the arms and legs.

If you notice any swelling or tightness, tell your doctor or specialist nurse. Treatment can improve lymphoedema. The earlier it is started, the more likely it is to be successful.

You can reduce your risk of lymphoedema. There are different ways that lymphoedema can be managed.

Problems with eating and speaking

Treatment to your mouth, throat, stomach or intestine can affect how well you eat. For example, radiotherapy to the head and neck area, may cause a dry mouth and difficulty swallowing

Side effects usually improve with time, but may be permanent. It can take time to return to a regular eating pattern. You can ask your doctor to refer you to a dietitian, who can advise what might help.

Sometimes people’s speech, voice or hearing can be affected by treatment for cancer in the head and neck. A speech and language therapist can give you exercises to strengthen and control your speech. If speech problems are caused by changes in teeth or the shape of the mouth, you may be referred to a specialist dentist, called a restorative dentist.

We have more information about the late effects of head and neck cancer treatment. We also have information about eating problems and about diet.

Cancer treatment and your heart

Some cancer treatments can affect how your heart works. Sometimes this can be long-term or permanent. Problems may develop many years later.

There are several tests your doctors can use to check your heart function before, during and after treatment. Some people have regular follow up appointments to check their heart health after cancer treatment.

We have more information about cancer treatment and your heart.

Emotional effects

You can also experience long-term emotional effects from cancer and its treatment. We have online information about how to cope and what might help you work through them. We also have a range of booklets about coping with your emotions. 

We hope this blog was helpful. Remember you can call our support line free on 0808 808 00 00, Monday to Friday, 9am to 8pm. You may also find our online Ask an Expert service helpful.

 

To see what else Macmillan's cancer information team has been blogging about, please visit our blog home page! You can subscribe to receive our blogs by email or RSS too.

We're with you every step of the way

The Macmillan team is here to help. Our cancer support specialists can answer your questions, offer support, or simply listen if you need a chat. Call us free on 0808 808 00 00.

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Keep in touch Follow Macmillan’s cancer information team on Twitter @mac_cancerinfo

Anonymous
  • FormerMember
    FormerMember

    Spoken from the heart, Sayek.

    When I was diagnosed with RILP, I attempted to report the fact to the the Royal Marsden, where I had been treated 40 years earlier. I explained that I was not looking to them for any sort of treatment or cure (having already dicovered than the current chances of either are minimal) but just wanted to ensure that my case was added to the statistics. I also offered myself for further study into the problem.

    Their answer was - and the is no nicer way of describing it - total disinterest, and a suggestion that I might track down a medic in Paris who has done some work in the field.

    Come on Macmillan Cancer Support - just who's side are you on?

  • Hello everyone, 

    Thank you for all your comments and making time to tell us about your own experiences. We know the blog was written from a very practical point of view to try to give people an idea of some of the late effects that can happen. But we appreciate that having to live with late effects, day after day, is a completely different matter, especially when they are so debilitating.

    The links in the blog take you to more detailed information where there is more about what may help. We know we haven’t covered all the possible late effects – or indeed addressed the emotional issues - and we’re sorry if this feels disappointing. But we hope that this blog increases the awareness of late effects. And encourages people to speak to their healthcare teams about the risks of late effects before treatment.

    There are some organisations now to help people with late effects – the Pelvic Radiation Disease Association is for anyone who suffers with pelvic radiation disease. The Radiotherapy Action Group Exposure is another, for people dealing with the effects of radiotherapy for breast cancer. Local cancer support groups may also offer a place to share stories and get support.

    If you would like to talk to one of our cancer support specialists, please call our support line on 0808 808 00 00, open Monday to Friday, 9am to 8pm. 

  • FormerMember
    FormerMember

    [edited by admin]

    There are two main issues here, the first being that neurological consequences are not currently even being name checked by Macmillan, let alone explained, in any of its patient-focussed pamphlets, web pages, blogs, or whatever.

    The issues are very real, and people who need and deserve to know are simply not being told anything about them. Maybe the clinicians would rather not be asked too many awkward questions about such things, but for the likes of Macmillan to not even so much as mention them is, sorry, completely unforgivable.

    The second issue concerns supprt for those of us who have the misfortune to find ourselves with a late-effect post-radiation neurological condition. One of your suggestions - i.e. RAGE UK - is aware of the wider issues of radition damage, but can do no more than try to signpost for things not directly associated with brachial radiotherapy. Your other suggestion - i.e. the PRDA - is equally keen to stay focussed on gastrointestinal consequences, and have said on several occasions that they do not regard neurological issues as part of their work.

    Or, to put it another way, for pelvic radiation nerve damage there is neither visibility nor support.

    [edited by admin]

  • FormerMember
    FormerMember

    Well said Rilp... in response to Liza I would just like to say these sites are the ones we went to to gain support and knowledge but found nothing about neurological damage... when I was diagnosed with Radiation Induced Lumbar Plexopathy I was deverstated, scared and confused. Can you imagine being told that you will lose the ability to walk years after your cancer treatment, being sent away by your neurologist with no hope, no guidance and NO SUPPORT.... I searched the internet and as a last resort I started a blog and then I started a FB group ..... because their was nothing else available to me... The FB group for RILP is the only support available for those diagnosed with this side effect and what we are saying is that sites with a high profile and the money to make a difference should be offering more... people need help, education, understanding and support who are diagnosed with RILP not left trawling the internet just to find information..

  • FormerMember
    FormerMember

    Thanks Helensamia - As we sufferers know only too well, Macmillan are by no means the only 'support' body that has the neurological consequence 'blind spot' difficulty.

    All we can hope is that maybe something in the tireless work of people such as you will rub off on someone someday soon - not for us, but surely for the poor unsuspecting souls who are doubtless already heading (most likely increasingly hestitantly...;-)) along the pathway to RILP and similar.

    Whatever else you do, never give up believing.