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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:
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 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.
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.
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Macmillian may not mention neurological side effects, but www.cancer.net includes the subject.
Peripheral Neuropathy is one of forty six (46) side effects listed for cancer and cancer care. For peripheral neuropathy risk factors, their 05/2017 dated page includes specific types of chemotherapy and radiation therapy. This is a positive step, acknowledging radiation's potential consequences. [Quoting from www.cancer.net] "Radiation therapy may damage nerves. Symptoms may take years to appear."
I’m in the US and experiencing Radiation Fibrosis Syndrome resulting from neck radiation for Pappilary Thyroid mets to neck nodes when I was 20, back in 1987. I would like to suggest a support group offering for those of us with “Late Effects of Radiation” and another titled “Radiation Fibrosis Syndrome”.
I would love direction to any other resources that are currently available. Thanks!
I don't have any experience of RFS myself, but there are others in the Macmillan Community who have - for example at https://community.macmillan.org.uk/cancer_types/hodgkin-lymphoma/f/110/p/156215/1195088#1195088 I don't know how many it needs for there to be an RFS Macmillan Community 'sub-Group', but I guess all such sub-groups start small and only then find out just how many out there are interested in joining.
But for your idea of a 'Late Effects of Radiation' community sub-group, I'm there with you right away - and if Macmillan were to want to start one then I would be one of the first to join it!
I know Macmillan keep a watchful eye on what is said in discussion threads like this, and so hopefully whoever is watching today will be able to take up your proposal and make it happen.
In the meantime, all the best and good luck!
I came across these posts by accident. I have spent several years surfing the net, trying to find out information about late onset of radiotherapy damage. I posted in another area with little response. My son had a brain tumour removed in 1981 and subsequentaly had radio therapy treatment. 15 years ago he became lame and since then he has graduallt gone deaf and is disabled to the point of being wheelchair bound and for the last year has been in a care home. There is so little information available in this country and all we get from the health professionals is 'we know it can happen but we do not know anything about it'. Although it is an awful position for people to be in, especially when the original condition has been cured, it was a little reassuring that I have seen that there are other people affected. I look forward to more posts.
For rilp. I have been looking at various posts and find it difficult to get around the posts and blogs on here. I did realise that you replied to my post back in March about late onset of radiotherapy damage. I must thank you for that reply. My son has similar but much worse symptons and deteriorating. Some people have called it radiation necrosis. Have you heard that term used?
aesl66 i am so sorry to hear about your son ...there is such a lack of information and support in this area... the medical profession seem like they just want to hide it away and count their successful treatment of the cancer... they do not want to hear about the cost we pay for that so called success ... there is no research and no follow up unless we fight for it .... there should be far more concern shown as they ruin peoples lives ... your son deserves so much more and you should not have to trawl the internet looking for answers ...this makes me so sad ... come on Macmillan help us to gain aknowledgement for the late stage side effects of cancer treatment ... and I mean ALL the side effects...
Hi aesl66 - It saddens me each and every time I hear stories like that of your son and, by extension, his nearest and dearest too. Being 'cured' of cancer is something to celebrate. It shouldn't then be possible for all that triumphant glow to be destroyed so completely by the onset of a lete-effect consequence that our well-meaning(?) clinicians knew about all along but felt it best not to mention it at the time. And as for the almost complete absence of recognition (let alone support) for those who do pull those 'collateral damage' short straws, well that really makes me feel so very much better each and every time I read that more people are living longer after cancer.
It is all so very wrong, and it has got to change.
For 'radiation necrosis' though, yes, i have heard of it before. If I understand it correctly, the term refers to tissue surrounding a tumour being killed off by the radiation used and, as such, it is very different in form to the nerve damage that I am familiar with. My form is, by and large, pretty difficult to do at all, but once done is almost impossible to reverse. Damage to otherwise healthy tissue is supposed to be more easily repairable (with Hyperbaric Oxygen having helped some), but even I realise that brain tissue is a very different thing to normal skin and bone, and I rather expect that my simplistic understanding is totally inadequate here.
Have you had contact with the 'Brain and Spine Foundation' ( www.brainandspine.org.uk )? Your son's issues sound right up their street to me, and they really were very kind and supportive when I spoke to them.
Anyone who has been following this blog discussion may be interested to know that newly revised 2018 editions of "Managing the Late Effects of Pelvic Radiotherapy" are now available.
Downloadable copies of the men's edition can be found at: http://be.macmillan.org.uk/Downloads/CancerInformation/CancerTypes/MAC13825PelvicRadioMLfxLowresPDFE0320180523HS.pdf
and the women's edition is at: http://be.macmillan.org.uk/Downloads/CancerInformation/CancerTypes/MAC13826LatefxPelvicRadioWE03LowresPDF20180523HS.pdf
And, speaking somewhat personally, I am pleased to say that neurological consequences have been added to the content.
Thnaks to all at Macmillan who made it happen!
Hello rilp, Thank you for your comments, and for sharing the new resources here. All the best,Liza
Here's something that merits much wider publicity than it appears to have had. It is a list published earlier this month by the UK's 'National Cancer Reaearch Institute' and it gives what they believe are the "Top 10 living with and beyond cancer research priorities."
I'm guessing that Macmillan will have a view on this initiative? Even if only by putting a link to it on the website?
It seems a very encouraging step and, hopefully, will help in a great many ways.
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