Sometimes, I think we can become very focused on the impact of being newly diagnosed, and getting through the treatment stages. However, once the treatment is finished, family and friends (and perhaps some health care professionals) forget that life after cancer is not always easy.
For some of you, there may have been some lasting reminders of what you have been through. These may be physical, and/or emotional, and still be having a part to play in your everyday lives? It may even be the case, that for you, the cancer has never truly gone away, and you're living with the uncertainty of what the future holds. Waking up every day with long term side effects, can feel an added blow, after having gone through cancer treatment. It may sometimes feel that everyone expects you to feel grateful that you've survived, but perhaps they don't think through how daily living feels for you, post cancer.
What is meant by 'long term effects'?
Let's talk about the late effects of cancer treatment. I thought I'd focus on those side effects that haven't gone away, or have become a new concern. ‘A late effect is a side effect that occurs months or years after cancer treatment. Many people who have received treatment for cancer have a risk of developing long-term side effects, and the evaluation for and treatment of these is an important part of survivorship care’ (Cancer.Net)
You may feel that a blog about potential long term problems following cancer treatment is not too welcome, particularly if you’ve recently been diagnosed. Not every person who has cancer will have late effects from their treatment. However, being aware of the possibility, means you can report symptoms or problems early, and get them dealt with. It’s being aware that a seemingly unrelated health problem decades later, might just be as a consequence of your earlier cancer treatment.
The irony is, as cancer treatments become more successful at eradicating the cancer itself, people are living much longer. This is good news, and helps keep hope alive when going through the rigmarole of hospital appointments, tests, treatments etc. You then enter the world of ‘survivorship’. Researchers estimate that about 650,000 people may have some minor, or not so minor health problems or disabilities after cancer treatment, and this number is likely to increase.
You may (or may not) be relieved that I will not be going through every potential problem that may occur. It’s a bit like reading the side effect profile in your medication packet - none of us would take a paracetamol, if we read every last potential/rare side effect. However, there are more common problems, which have been identified in the Macmillan document I referred to earlier.
Types of long term side effects
- Lower Gastrointestinal problems – which may include chronic diarrhoea, urgency, occasionally, incontinence, or bleeding. Some people report pain or bleeding. These may be long term effects of some surgery or radiotherapy, for example, and should be reported to your specialist nurse/hospital consultant and/or your GP. Some of you may be living with a stoma, following surgery, and this can impact on your wellbeing, and lifestyle.
- Upper Gastrointestinal problems – sometimes people have swallowing difficulties, difficulties gaining weight, voice dysfunction or nausea. Others may have to be relying on tube feeding for a time. Again, this could be related to surgery or radiotherapy (or combination of both).
- Urinary problems – stress incontinence, or incontinence generally. Urgency (the need to find a loo now, can’t wait), increased night time trips to toilet, etc. Can be due to a number of treatments, but prostate/urological treatments or gynaecological cancers, for example, have a chance of these late effects developing.
- Sexual difficulties – caused by a number of treatments, including some medications, surgery, radiotherapy, body image worries – this can be very demoralising, and yet sometimes difficult to talk about. The ability to lead a normal sex life is important to many people, and can add to the feeling of isolation, low esteem and relationship difficulties. Your hospital team will be aware of this potential side effect, and keen to help you find solutions to regaining physical intimacy.
- Menopausal and hormonal problems – hot flushes, sleep disturbance, (for men too) early menopause symptoms, sweating – can be due to treatments such as surgery and chemo, but also as a result of medications post breast and prostate cancer to inhibit hormone production.
- Chronic fatigue – can be caused by any number of the cancer treatments – chemotherapy and radiotherapy being the most common reason. Hard to describe, it is a feeling of little or no energy, not feeling refreshed after sleeping, and finding it hard to find the energy for work, exercise, homelife, etc.
- Cancer related lymphoedema – this can be from surgery, when lymph glands have been removed as part of cancer treatment, and/or radiotherapy to areas which have lymph nodes close by…for example, breast, gynaecological, melanoma, head and neck surgery.
- Emotional and psychological effects – these include depression, anxiety, memory loss, and difficulty concentrating. For some, the cancer experience itself may have left long term psychological problems, and should be treated as respectfully and seriously as any of the physical issues mentioned above.
There are other late effects, which although not down here, can be equally frustrating, and affect your quality of life. These all may have an impact on your physical, emotional and psychological recovery.
What can I do about it ?
Firstly, being aware that there may be some long term effects from the treatments you may be having. In the bigger picture, the aim is to help you recover from your cancer, but your hospital team should be explaining some of the possible short and long term side effects which you may experience. Ask what you should be looking out for, and establish how you would go about bringing them to your doctor/specialist nurse’s attention.
Don’t despair – if you are having post treatment problems, many of them are short term and will ease. If they don’t, then there are solutions…if they can’t be resolved entirely, then strategies to manage late health problems can be put into place. It’s tempting to think, ‘oh well, I’ve just got to put up with it’ – that’s not the case.
It can be less isolating, and useful as a way of finding out if what you’re experiencing is normal, by joining online support groups. There are many online and local groups set up focusing on your particular cancer ) Maggie’s Centres host a range of site specific and general support groups, as well as being able to provide psychological support, practical information, and the chance to meet others in a similar position.
You may be noticing that the long term side effects are impacting on your ability to work, and be having financial consequences. Watch out for our benefit advisors blog giving advice and information about the world of side effects, work, and what may be available to help you in financial terms.
Lifestyle changes, including looking at your nutrition, may help with some of the long term effects you’re experiencing…be it through weight management (gaining or losing weight), healthy diet, and nutrition generally. You can visit our Maggie’s Centres for advise and support about eating well, read our online informative blogs and join in conversations..
Finally, it's worth noting that cancer treatments are being worked on, to make them more effective, with less side effects. A report, by Macmillan Cancer Support (2013) states that a principle aim should be ‘to prevent or minimise consequences of cancer treatment – through better surveillance, healthier life style choices, improved imaging, minimally invasive surgery, targeted radiotherapy and the use of modern drugs’.
This may have felt a bit of a hard hitting blog, but more and more people make it through cancer, which is to be applauded. ‘I will survive for many, becomes ‘I have survived - and that is good news. However, it’s always useful to know any potential pitfalls, and address them, as early as possible.
Updated April 2020
Long term side effects of cancer treatment - Cancer.Net
Throwing light on the consequences of cancer and its treatment- Macmillan Cancer Support
Late side effects of chemotherapy - Cancer Research UK
Bowel cancer - long term and late side effects - Bowel Cancer UK
Long term side effects of radiotherapy - Cancer Research UK
Disability Benefits 5 : Late effects and renewing a claim - Benefit's blog - Maggie's Online Community
Benefits when too unwell to work 4 : Undergoing the full Work Capability Assessment Benefit's blog - Maggie's Online Community