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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.
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.
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Not a single word about neurological late effects?
How right you are - Long-term and late effects of cancer treatment really are sometimes almost impossible to find information on, and espeically so the neurological ones....
An opportunity missed....:-(
I was excited when I saw the start of this blog as it is so difficult , as you say, to find information on the late stage effects of cancer treatment. Reading this however you seem to miss the mark in how deverstating and life changing these effects can be. They are long term and usually incurable due to the damage that has been caused by the radiation and/or chemo. Patients can endure multiple surgeries to try and correct the damage done to the bowel and bladder, some suffer from on going heart failure, lymphoedema even though cared for can cause cellulitus that requires a hospital stay with IV antibiotics. Then we have the neurological damage caused by radiation. Women who had breast cancer treatment who can no longer use their arms due to damage to the Bracheal plexus or those who have had pelvic radiation whose legs become weaker and weaker till they can no longer walk.
These side efects can happen from 1 - 30years after treatment and often long after the cancer team have waved the patient goodbye thinking all is cured and the treatment is a great success.. this leaves the patient with no where to turn and little understanding of what is going wrong. Neurologiacal damage usually goes unmentioned pre treatment as is is so rare, patients often struggle with late stage side effects not knowing who to turn to for help ..
I belong to two FB groups PRDA and Radiation induced lumbar plexopathy group plus I read blogs and articles written by those treated for cancer. Many are lucky enough to have no side effects. However the ones that do have stories that would break your heart. Physical and mental pain, side efects that keep then trapped at home, ongoing surgeries and medical visits.
Personally after being treated for uterine cancer, with surgery and radiation, I have lymphoedema in my left leg that has caused cellulitus that has put me in hospital, on one occasion this spread to my heart and caused pericarditis. Fluid was drained from around my heart and I had massive antibiotics IV for a month. 10 years post treatment I started to get neurological problems. 15years post treatment I bacame paralysed, I can no longer walk or weight bear. I have a supra pubic catheter with a valve to urinate so as not to have to transfer on and off the toilet. Every morning I irrigate my bowel with an enema so as to be “safe” for the rest if the day.. this is my life now and it makes me very sad that these side effect are not mentioned. Neurological damage to the lumbar plexus and bracheal plexus are very real.. imagine no longer being able to use your arms or legs. These side efects deserve a place in the list of late stage side effects of cancer treatment. Survival rates are improving and there will be more and more people suffereing years after treatment. What we see at the moment is only the tip of the iceberg.
Well said Helensamia. Your point about late-effect sufferers frequently having lost all contact with their specialists and nurses is so very true. For most, neither they nor their GP have any reason to link the appearance of strange symptoms back to their cancer 'cure' and many spend years getting worse and worse before someone realises what is going on. In my case, I endured the best part of 20 years of progressively more and more issues, that started only about 20 years or so after my treatment. For me, there was no cancer specialist or nurse to talk to, and nor was there any reason why I should. In the end, it was only when my GP referred me as a possible case of Motor-Neurone Disease that all became clear.
Do you honestly believe that anyone in the cancer community (cancer industry?) has any idea just how many there are of us who suffer severe very-late consequences? Myself, I don't see how it can have, for the very simple reason that no one appears to be keeping any sort of count.
Right now I am thinking of an article that I found recently, published in 2015 in the World Journal of Gastrointestinal Surgery, and titled 'Pelvic Radiation Therapy - Between Delight and Disaster'. In its Introduction it said "The last four decades have been a golden era for improving cancer survivorship. Three times as many people survive cancer than 30 years ago. Yet 20% to 30% of cancer survivors report a decline in quality of life secondary to the physical consequences of treatment. A sinister side to cancer research studies is the fixation on survival statistics and prevention of disese recurrence. Patient quality of life has been unacceptably neglected. Patients who receive radiotherapy form a large cohort of patients who report side effects leading to a reduced quality of life."
Just what is it going to take to make the cancer community sit up and realise the scale and impact of late and very-late onset consequences? Can someone please, please, wake up at the back there, and pay attention!
There are people out here hurting, and hurting badly.
THank you Macmillan for providing this blog...it is long overdue. Since I developed neurological damage - RILP - as a result of radiotherapy treatment for cervical cancer 20+ years ago, I have been constantly disappointed by the lack of understanding and willingness to take any action from the charities which take our money and claim to be our advocates. The usual outcome to my requests for updated information to be made available to help those affected by late effects is that they will ask whether this is possible...and then their medical advisors are not willing. They say it is too ‘rare’ and not documented well enough. They do not seek any further evidence however - those suffering the consequences would be only too happy to oblige - and there are many scientific papers available if they care to look. It is as if we are not believed and is very hurtful on top of everything else we are coping with. The medical profession I have encountered are no better - they wave you goodbye and give you no way back if you develop problems further down the line. I happened to meet my original radiation oncologist and he was totally disinterested in my increasing leg paralysis - just shrugged his shoulders and could not tell me why data is not collected on late-effects. When I recently developed breast cancer and refused radiotherapy, my new oncologist said that I ‘had baggage’. The only people who seem to care are other fellow sufferers who have had to set up their own self-help groups out of utter despair at this situation.
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?
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.
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.
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..
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.
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