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Long term side effects


by Sue_maggies

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.

Warm wishes

Sue

Resources

Long term side effects of cancer treatment   -   Cancer.Net

Throwing light on the consequences of cancer and its treatment-  Macmillan Cancer Support

Late effects of cancer treatment  -  Livestrong

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

Supporting people to live better with and beyond cancer       NHS

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

6 Comments

  • Diana wrote

    That's my continual question, luckily, I found someone who is a couple of years in front of me having been treated for the same cancer. "Is this as good as it gets?" We talk a lot, and luckily, like me, he is happy to go over experiences and feelings, so I can have some hope that there is still some improvement to come, even 4 years coming up since I was diagnosed, next week is the anniversary in fact.

    I coached a colleague through the same treatment as me, reassuring them that there was light at the end of the tunnel during their treatment, and then through recovery. I was a bit fed up, when he over-took me in recovery.

  • Sue_maggies wrote

    Thank you for your helpful comment, Diane.

    You've hit the nail on the head. If you can find others who offer support, encouragement, and the insight of a shared experience - it can help those days when improvement seems a distant goal.

    I can imagine feeling of coaching your colleague going through the same treatment, and then his recovery was swifter. It's such an individual thing - recovery. The trouble is that treatment can leave fatigue, side effects and they vary so much from person to person.

    Four years next week, since it all began...anniversaries can bring back memories of the cancer diagnosis, so hope it all passes uneventfully.

  • Diana wrote

    Thank you, had other stuff going on to keep me distracted. To be honest, I wish I had written a diary, because others might have found it useful. And some of the memories are a bit hazy.
    I sat in my second chemotherapy, with 2 guys starting their first, and the one thing I took hope in, was that I wasn't the only one, there were other people, at this hospital with the same as me - not that I would wish it on anyone. But what they said to me made me feel good, they took strength on how well I looked and was coping with the treatment, they decided that maybe their treatment wouldn't be so bad.
    That's where I am now, wanting to tell new patients that they will get through the treatment, yes it will hurt, yes it will be hard going sometimes, but things do get better, with time.

  • SundanceLady wrote

    I used my Facebook account to do updates on my treatment, side effects and how I was feeling. I was diagnosed with Stage 3 colon cancer this time last year. I had surgery to remove 20cms of my ascending colon and then chemo from January to July. After a’high’ fase in August and early September I’m now struggling with painful joints. My knees are especially bad and I can hardly do stairs. These long term effects are a bit of a surprise but I forget how strong the chemo chemicals are!

  • Sue_maggies wrote

    Thank you for your useful way of updating on your treatments, etc. It sounds like Facebook served almost be a journal, and a way to keep family and friends up to date with what is going on.

    It's true...the chemo side effects can impact for some time. The joint pain can last for some time, and with diminished energy levels too - it can make stairs a challenge. Have you found any painkillers effective?

    Warmest wishes

    Sue

  • Tom_maggies wrote

    Late effects can be frustrating if you had been determined to bounce back into work or to lose those extra costs and difficulties of daily living and getting around. The benefits that helped during that roller coaster treatment year or so, can still help, when "back to normal" recovery may feel more like coming to terms with a "new normal" for the time being.

    This is also the time when the DWP may contact you about renewing your claim. While many can say a fond farewell to them, others could do with their support for a bit longer. But you may feel uncertain as to whether you may qualify or how to express what can feel like vague - but still limiting - effects on renewal forms.

    The two benefit blogs listed in the resources above may be helpful. For disability benefits (that can still apply even if you are fully back in work) it may be a process you remember from your first claim but very different challenges and difficulties to express. For "sickness benefits" - when too unwell to work or limited to under 16 hours by your health - it may be your first experience of the full assessment process.

    Please do explore these, drop in and see a Benefits Advisor in your local Maggies Centre or message me if in any doubt about whether you might qualify - or for help in the process.