In Part 1 of ‘What are Long-term Side Effects of Childhood Cancer Treatments?’ I covered the broad range of possible late effects that may affect long-term survivors of childhood cancer. Now I will be sharing my own long-term side effects and how they affect my quality of life after cancer.
On 10th July 1985, aged 4 years and 8 months, I was diagnosed with Acute Lymphoblastic Leukaemia. My treatment included approximately two weeks of cranial radiotherapy and two years of chemotherapy.
Thirty years after my treatment I am dealing with long-term side effects of my cancer treatment
I cannot give you a detailed description of my cancer treatment as I only remember specific experiences. The rest I know from what my parents have told me and by referring to my medical notes (a blue folder filled with handwritten medical records of my treatment) and my ‘Treatment Summary’ that was provided by the Long-term Follow-Up Clinic (The Children’s Hospital Westmead).
Once a childhood cancer patient has reached 5 years after finishing cancer treatment they are referred to receive future follow-up care via a Long-Term Follow-Up Clinic.
For more information on this process visit: LTFU – The Children’s Hospital Westmead
Survivors of childhood cancer are provided with a Treatment Summary and Long-term Follow-up Guidelines informing them of any possible long-term side effects (late effects) that may result from their childhood cancer treatment.
Generally the LTFU clinic will arrange all of the required follow up tests for you, then you attend appointments at the clinic with a range of health professionals: clinical psychologists/oncology nurses/doctors, who explain all of the possible health issues that may affect you. You are also provided with an updated ‘treatment summary’ and booklets/leaflets/printouts with more information on each health area. The ‘treatment summary’ also includes a list of required ongoing medical tests and the required frequency of these tests.
This process will be tailored to suit each survivor’s needs and will vary depending on test results and how many years have passed since treatment was completed.
Once a survivor reaches adulthood the responsibility of their ongoing care is then passed on to the survivor and their General Practitioner.
Possible Future Health Concerns
My treatment of cranial radiotherapy and chemotherapy includes the following possible long-term health risks:
- Heart problems
- Thyroid problems
- Female health issues
- Fertility issues
- Eye problems (cataracts)
- Hearing problems
- Dental problems
- Growth and development
- Bone problems – Bone damage or osteoporosis (thinning of the bones)
- Learning difficulties
- Emotional issues
- Risk of secondary cancers
- Neurological issues
- Endocrine issues
Required Ongoing Medical Tests
Possible long-term health risks from cancer treatment require lifelong ongoing medical tests/screening for certain health concerns. My recommended ongoing care includes:
- Annual check up with GP including
physical examination, skin check
and blood pressure
- Echogardiogram (heart ultrasound)
every 2 years as well as prior to
or in early pregnancy
- Thyroid ultrasound every 2 years
- Hormone blood test – LH / FSH /
Oestradiol as baseline, then as required
- Follow up with Gynaecologist /
Fertility specialist as required
- Annual Dental check up
- Ophthalmology (eye) every 2 years
- Audiology (hearing) review as required
- Psychosocial support as required
- Any new, unusual or persistent
change should be discussed with
your GP or LTFU team
My Long-term Side Effects
Some of my side effects were identified soon after my cancer treatment finished. Others I have been living with as long as I can remember, but until recently I was not aware that some of my symptoms were actually side effects or even a medical condition. I guess this is because I was so young when I had cancer and everything after cancer was normal for me, or so I thought. It has taken me almost thirty years to identify some of my long-term side effects and it can be hard to know if there may be more that I am unaware of.
Immediate Side Effects
- Thin hair
- Shallow teeth roots
- Some learning difficulties (school)
Teenage Years & Unrecognised Side Effects
During my teenage years I avoided thinking much about my childhood cancer and the possibility of developing any long-term side effects. I think I was too caught up in just wanting to be a normal teenager and my routine follow up tests quickly became more of a chore. I did not see the importance of my follow up tests. I just wanted to get on with my life.
I only started thinking about long-term side effects in my twenties, and as I became older I became more aware of how these could affect me.
Now when I look back at my teenage years I can recognise some of the late effects that did affect me then, and still do now. These include:
- Depression/low self-esteem
- Some social issues
- Growth – I am significantly shorter
than my two older sisters
- Slightly shorter left leg
- Slight Scoliosis
- Struggled with physical fitness (e.g. easily exhausted after running)
- Raynaud’s Phenomenom
What ‘Is’ and ‘Is Not’ a Long-term Side Effect of Childhood Cancer Treatment?
Some 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.
It has taken me almost fifteen years to link my current health conditions to my childhood cancer treatment and determining what is an actual long-term side effect has not been an easy process.
I have often found it hard to get clear answers from doctors regarding whether or not my health conditions are actually long-term side effects of my cancer treatment. And I accept that there really isn’t any way to prove what is a long-term side effect. So, I am left to base my assumptions on my own experiences and any current research that I can find that shows evidence of survivors suffering from chronic health conditions linked to their cancer treatment.
Many of the conditions that I have listed in this post are based on a combination of doctors’ and psychologists’ opinions and my own opinions based on the researched evidence that I have found over the last ten years.
Late Side Effects
The following are current conditions that I believe to be long-term side effects of my cancer treatment:
- Chronic nerve pain (small fibre neuropathy)
- Raynaud’s Phenomenom
- Anxiety/Social Anxiety
- Social/Relationship issues (I’m very much an Introvert personality type)
- Sensitive teeth
- Sensitive eyes – bright lights (I always wear sunglasses outside during daytime even when cloudy/overcast)
- Fatigue easily
Other health conditions that may or may not be related to my cancer treatment include:
- Skin cancer (basal cell carcinoma, 2011)
Living With Long-term Side Effects
Most of my long-term side effects are easy to manage and live with. But others have had quite a big affect on my quality of life after cancer and I struggle to maintain my chronic conditions on a daily basis.
I don’t believe that I would be writing about long-term side effects if they did not affect the way that I live. My main struggles since my teenage years have been with depression, anxiety, fatigue and chronic nerve pain (small fibre neuropathy) in both hands, arms, shoulders and neck.
I have never been diagnosed with Chronic Fatigue, but I believe that I could easily fit the description. For as long as I can remember I have often felt tired. I have even had friends comment on how often I say that ‘I’m tired’.
This could be a late effect of my cancer treatment and it could also relate to Glandular Fever. I’ve tested positive to this twice, once during my cancer treatment, although they didn’t pick up the symptoms at the time as I was already pretty zonked out by the treatment. And the second time I was approximately 18 years old and a group of friends from school were diagnosed with Glandular Fever, including me.
I’m not an early bird. I need at least 8 hours (preferably 9 hours) sleep to be able to focus properly the next day. This has lead to me relying on caffeine to keep me alert. I do eat a reasonably healthy diet and exercise. And I avoid high sugar food/drink.
Since I started taking the medication ENDEP – Amitriptyline for my nerve pain – I have relied on caffeine even more. The medication has the side effect of drowsiness and dry mouth. I drink a lot of water so the dry mouth is not so much of a problem. But the medication makes me very tired. I drink approximately four cups of coffee a day and at least one green tea. I also recently started using Herbalife NRG tablets (32g caffeine) and Herbalife Instant Herbal Beverage, which both help to give me a gentle energy boost throughout the day.
Yes, I know it’s a lot of caffeine. But with my medication I find this is the only way to maintain my energy levels.
Chronic Nerve Pain – Depression & Anxiety
Chronic Nerve Pain: mostly affects both hands, arms, shoulders, neck. (Small Fibre Neuropathy – most likely a long-term side effect of chemotherapy drug, Vincristine.)
I have suffered from nerve pain in my hands, arm, shoulders and neck for the last fifteen years, since approximately 2001 when I had my first severe onset of pain.
My pain is aggravated by any type of excessive activity, ranging from typing, using a computer mouse, to cleaning, folding letters, scanning documents, lifting movements, using cooking tongs/utensils and even brushing my teeth.
My pain includes:
- Sharp stabbing pain,
- aching/throbbing pain,
- burning sensations,
- muscle weakness,
- pins and needles/prickling sensation.
I cannot lift heavy objects and my pain/weakness seems to be getting worse with age.
I cannot pinpoint the exact location of my pain as this varies. It can sometimes be:
- Sharp pain in my wrist, hand, fingers, finger joints.
- Aches and weakness can be in my whole arm and hands.
- The prickling sensation can be in my whole arm, but seems to be more in the brachial plexus / anterior shoulder area.
- I do sometimes get prickling/pins and needles in my back and legs (but not as much as my upper limbs).
How Nerve Pain Affects My Quality of Life
My nerve pain has affected my ability to work. I am physically unable to work full-time hours and I often struggle to work casual hours (approx. 8–15 hours a week).
I struggle on a daily basis with my nerve pain. And I am even in pain as I am writing this post. I have good and bad days. Good meaning that the pain is bearable as long as I pace myself. Bad being when I just have to stop doing any activity and just force myself to rest (this can sometimes be for a few days at time).
I have had to leave numerous employment positions because of my pain and often struggle to find work that I can actually do. I find that attempting to explain my condition to possible employers to be embarrassing and frustrating, because I don’t know if I can do a job until I try it and I feel like I am running out of employment options.
Because I look normal to other people I know that they don’t understand why I am so physically restricted
Being unable to work greatly contributes to my depression and anxiety. I tend to be quite unsocial, partly because I cannot afford to socialize and partly because I am embarrassed by my situation.
I do struggle with depression and anxiety. And at times I even wish that I had not survived childhood cancer. My pain has had a major impact on my life and I often find it hard to stay motivated to keep pushing forward.
But, even though my life can often feel like a constant struggle, with faith that God has a plan for me, I still manage to push forward through each hurdle, and I have found some form of purpose in my writing projects (both fiction and non-fiction).
Yes, writing about my experience can be satisfying – in the sense of a weight being lifted. And writing – like any art medium – is a form of therapy. And I believe that it does help me to cope, particularly in hard times when circumstances can seem unbearable.
I also find working on my crime fiction writing to be very helpful, as it is something completely unrelated to my own life problems. I love escaping into the world of my crime fiction series and becoming immersed in the lives of my characters. It provides a temporary distraction and as I complete each section of writing/rewriting I feel a great sense of accomplishment.
I have chosen to write about my experience as a survivor of childhood cancer in the hope that I can help other survivors to easily find answers to their questions about long-term side effects of their cancer treatment. It took me a very long time to get a diagnosis for my nerve pain and I wouldn’t wish my struggle to find answers on any other survivor. And my aim is to make the information that I provide to my readers as helpful as possible.
To read more about why I write about surviving childhood cancer visit my previous posts:
I love hearing from you and welcome your comments and personal stories.
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