Understanding your risk of late-effects

I have spent most of my life as a survivor of childhood cancer, so I don’t know what my life would have been like without cancer. My entire school life included missing several days of school to attend routine follow-up tests and procedures at the hospital. And this became normal to me with the many day trips back to hospital soon feeling more like a chore than a necessity. And as I progressed into high school the thought of having to keep going to the children’s hospital became even more annoying, because I wasn’t a kid anymore!

I just wanted to be a normal teenager. So what if I had had cancer? That was years ago. So why did I have to keep going back? And what was with all of these possible long-term side effects?

I remember that I used to laugh off the thought that, hey the doctors don’t really know what my long-term side effects will be because my treatments were relatively new at the time. And so they just don’t know. Brilliant!

At the time I don’t think I realised just how much it did bother me that many of the possible long-term side effects were unknown. And now as I reach my mid-thirties it is definitely something that plays on my mind and it can sometimes become quite frustrating when I know that something is wrong, but I don’t know why.

What are long-term side effects (also called late effects)?

Today, because of advances in treatment, more than 8 out of 10 children treated for cancer survive at least 5 years, and most of these children are cured. But the treatments that help these children survive their cancer can also cause health problems later on.

Most treatment side effects appear during or just after treatment and go away a short time later. But some problems may not go away or may not show up until months or years after treatment. These problems are called late effects. Because more children with cancer are now surviving into adulthood, their long-term health and these late effects have become a focus of care and research.

Just as the treatment of childhood cancer requires a very specialized approach, so does aftercare and watching for late effects. Late effects can involve more than one part of the body (or more than one organ system) and can range from mild to severe.

Careful follow-up after cancer treatment allows doctors to find and treat any late effects as early as possible. The follow-up schedule depends on many things, including the type of cancer the child had, the treatments used, and the risk of late effects from those treatments.

http://www.cancer.org/treatment/childrenandcancer/whenyourchildhascancer/children-diagnosed-with-cancer-late-effects-of-cancer-treatment


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No two survivors of childhood cancer will be affected in exactly the same way. Long-term side effects will differ between each individual survivor. And just as each cancer patient is different – considering their age, type and severity of their cancer – so their treatments will differ and be tailored to suit the individual’s needs. All of these factors will in some way affect a survivor’s recovery and their likelihood of developing a range of long-term side effects.

The long-term side effects that I have encountered may be similar or completely different to other survivors of childhood cancer. And thus each survivor’s medical history will need to be assessed by medical professionals to determine the possible health risks that a survivor may face in their life after cancer.

Causes of late effects

400px-Chemotherapy_bottles_cropped

Any cancer treatment may cause late effects, including chemotherapy, radiation therapy, surgery, and stem cell/bone marrow transplantation. A child’s risk of developing late effects depends on many factors:

  • Type and location of cancer 
  • Area of the body treated
  • Type and dose of treatment 
  • Child’s age when treated 
  • Genetics and family history 
  • Other health problems that existed before the cancer diagnosis

Types of late effects

Late effects can be physical or emotional. Below is a listing of specific late effects of childhood cancer. Not all survivors will develop all of these long-term side effects. It depends on the type of treatment a child had and their age when treated.

If you are concerned about late effects of cancer talk with a doctor to understand what the risks are and ways to manage them.

Emotional troublesLearning and memory problems
Second cancersHeart problems
Reproductive and sexual development problemsGrowth, development, and hormone problems
Lung and breathing problemsDental problems
Digestive problemsHearing problems
Vision and eye problems

http://www.cancer.net/navigating-cancer-care/children/late-effects-childhood-cancer

For more information on these side effects visit: Cancer.Net and Cancer.org


Here is a broader list of possible late effects:

Avascular Necrosis (AVN)Educational Issues
Bone HealthEmotional Health
OsteoradionecrosisFinding Healthcare
Breast CancerGastrointestinal System
Chronic PainHormones and Reproduction
Diet and Physical ActivityHepatitis
HyperprolactinemiaOrgans
HypopituitarismBladder Health
Limb SalvagePaying for Healthcare
Peripheral NeuropathyRaynaud’s Phenomenon
Scoliosis and KyphosisSecondary Cancers
SensorySkin Health
Thyroid Problems

For more information visit: Curesearch 



How do you link your health conditions to your cancer treatment?

Some side effects will be very clear with the condition being present shortly after cancer treatment is completed. These can include:

  • Thin hair
  • Shallow teeth roots
  • Sensitive teeth
  • Growth abnormalities
  • Physical scars from surgeries
  • And some of the conditions listed in the above tables

Other long-term side effects may not appear until many years after a survivor’s treatment has finished. And it is these conditions that can be the hardest to link as being a late effect of a survivor’s cancer treatment as other life factors and experiences need to be taken into consideration.

Here are some steps that you can take to find answers

  • Research your symptoms and ask questions
  • Read through your treatment summary – have you been keeping up-to-date with your recommended long-term follow up tests?
  • If you don’t have a treatment summary contact the hospital that you were treated at or your Long-term Follow Up clinic to get an up-to-date copy.
  • Contact your Long-term Follow Up clinic for more information about your health concerns or to make an appointment
  • Visit your General Practitioner and discuss your concerns with them, and if necessary ask for referrals to specialists
  • And be persistent – don’t let anyone persuade you that nothing is wrong if you know that something is not right 
  • Get a second or third opinion – have you seen the right type of specialist? (I went to two different specialists to find answers – a neurologist and a rheumatologist)
  • Don’t be afraid to Speak Up!

Determining what is an actual long-term side effect of a survivor’s cancer treatment is not always an easy process. And there may be  occasions when you cannot get a clear answer from a doctor, as they  may not be able to give a definite diagnosis based on inconclusive tests, so you may be left with a condition that is diagnosed on symptoms alone with the assumption that it is a possible side effect, because there may  not always be a way of proving what caused it.

I have personally struggled with this as some of my health issues where not initially recognised as long-term side effects of my childhood cancer treatment. At the time my medical history did not seem worth mentioning and I didn’t think twice about it.

Why would I?

I didn’t know years ago what I know now – that there are many more health conditions than I first had knowledge of that could be directly related to my cancer treatment.

I didn’t connect the dots for a very long time. And it took me fifteen, frustrating years to link my nerve pain to my cancer treatment.

Yes, this is likely due to me only using old information on long-term side effects that was given to me by the hospital many years ago. And the information that I have found recently is very different and much more specific about the particular conditions that survivors are likely to develop years after their treatment finishes.

I believe this highlights the importance of the need for survivors of childhood cancer to continue with their long-term follow up years after their treatment is complete. Even if to at least gain access to updates on vital research into long-term side effects.

Because, if I managed to miss the importance of my medical history I am sure that there are many other survivors out there, like me, who were treated in the 1970’s and 1980’s (or even more recently) who may not have received the right information at the time and have not kept up-to-date with developments that are relevant to their future health.


In part 2 of this post I will include details of my long-term side effects. And in future posts I will be talking about some of the more common late effects and in particular the ones that have affected me, and how I am managing these effects in my day-to-day life.

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Read my previous posts:

An Introduction – Why write about surviving childhood cancer? 

Fill the Damn Silence – Speak Up!

More helpful websites can be found on my Links page


What has your experience been like with long-term side effects of cancer treatment?

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