Woman, 19, going through menopause after cancer treatment at 17 says her symptoms were dismissed as ‘teenage hormones’ and she became reliant on opiods after being turned away from A&E twice
- Caitlin Wilde, 19, from Manchester, battled acute myeloid leukaemia at age of 17
- Says doctors dismissed her symptoms as teenage hormones and suggested CBT
- Treatment left her infertile and she’s now going through early menopause
- Is now campaigning for more psychological support for women like her and greater awareness of the side effects of early menopause including osteoporosis
A 19-year-old cancer survivor who became reliant on opiods to control her pain when her symptoms were dismissed by her GP as ‘teenage hormones’ has told how she’s now going through early menopause and wants more support for young women like her.
Caitlin Wilde, 19, from Manchester, claims she was turned away from A&E twice and felt forced to turn to ‘Dr Google’ to discover why she suffered from bleeding gums, bruising, fatigue, hot sweats and bone pain.
Eventually she was diagnosed with acute myeloid leukaemia, a rare form of blood cancer, and admitted it was a ‘relief’ to know she ‘wasn’t crazy’.
Cait underwent gruelling chemotherapy and a bone marrow transplant – but six months after ringing the end of treatment bell, she began experiencing hot sweats again and was terrified her cancer had returned.
Caitlin Wilde, 19, from Manchester, told how her cancer symptoms were dismissed by her GP as ‘teenage hormones’. Pictured before her ordeal
Cait, pictured now, was eventually diagnosed with acute myeloid leukaemia, a rare form of blood cancer, and admitted it was a ‘relief’ to know she ‘wasn’t crazy’
It transpired her new symptoms were in fact the menopause, something Cait – then aged 17 – had little understanding of. Having been supported throughout her journey by Teenage Cancer Trust, Cait is now working with the charity to educate young people going through a similar ordeal and raise awareness of the menopause to break the taboo of talking about it.
‘Cancer is always the number one thing on my mind, so as soon as I started getting the sweats I thought that’s it, my leukaemia’s back,’ she told FEMAIL.
‘I was given a book about my transplant and there was a mention of menopause and it said I’d be infertile, but it didn’t explain the other implications of menopause.
‘While I was waiting for my test results, there was a huge poster on the wall talking about it. It showed a graphic drawing of a woman bent over with osteoporosis and that terrified me. That was when it really hit me that menopause wasn’t just about my periods stopping and being a bit sweaty, it was serious and it terrified me.
Cait, pictured before her diagnosis, is now going through early menopause and wants more support for young women like her
Cait underwent gruelling chemotherapy and a bone marrow transplant – but six months after ringing the end of treatment bell, she began experiencing hot sweats again and was terrified her cancer had returned
What is acute myeloid leukaemia?
Acute myeloid leukaemia is an aggressive and rare form of blood cancer. The symptoms of AML usually develop over a few weeks and become more severe.
According to NHS Choices, the symptoms include:
- Pale skin
- Frequent infections
- Unusual and frequent bleeding – including the gums and nosebleeds
In advanced cases, patients are incredibly vulnerable to life-threatening infections and internal bleeding. If a GP suspects leukaemia, they will arrange a blood test to determine blood cell production.
In AML, stem cells within the patient’s bone marrow produce too many immature white blood cells, which are not capable of fighting infection.
This can also lead to a decrease in production of the oxygen-carrying red blood cells and platelets that help the blood to clot.
Each year around 2,600 people in the UK are diagnosed with blood cancer.
After diagnosis, patients need urgent chemotherapy due to the aggressive nature of the cancer. In some cases, radiotherapy may be needed along with a bone marrow or stem cell transplant.
Source: NHS Choices
‘I thought, oh God, is that what I’ve got to look forward to? It put me on edge and made me think about it more seriously. But there’s not a lot of psychological support for young people like me.’
Cait believes her age is the reason it took so long for her to receive her cancer diagnosis, despite making regular visits to her GP and asking for blood tests.
She told how before her symptoms kicked in, she was on all her school sports teams and passionate about swimming, dancing and musical theatre.
‘When the fatigue set in I thought maybe I was just losing the passion for those activities, but in reality it was because cancer was starting to develop,’ Cait recalled.
Cait told how she became dependent on painkillers to keep her symptoms at bay – something she admitted was ‘scary’.
‘I was prescribed morphine at the age of 15 and I became quite reliant on it,’ she explained.
‘People are quite surprised when I tell them, but it’s quite common just to shove people of opioids. They are pretty dangerous and addictive.
‘It sounds a bit dark but when I was actually diagnosed, I was upset, but it was a relief to know I wasn’t crazy. I wanted to go back to that old doctor and say “I told you I was sick”.’
Cait’s prognosis was bleak; only around 20 per cent of acute myeloid leukaemia patients will live for five years or more after their diagnosis, according to Cancer Research UK.
She was sent to the Teenage Cancer Trust unit at The Christie NHS Foundation Trust hospital in Manchester, but her first five-week round of chemotherapy was riddled with complications and was unsuccessful.
Her second attempt successfully got her into remission, and luckily she found a bone marrow match on the register and underwent a transplant in November 2018, meaning she was able to go home for Christmas.
‘I thought that was it,’ Cait recalled. ‘The day I got discharged I rang the end of treatment bell, cried, thought it was finally over.
Cait’s prognosis was bleak; only around 20 per cent of acute myeloid leukaemia patients will live for five years or more after their diagnosis, according to Cancer Research UK. Her first five-week round of chemotherapy was riddled with complications and was unsuccessful. Her second attempt successfully got her into remission
Cait admitted she didn’t think she’d make it to her 18th birthday. Pictured with her ‘cancer card doggo’, her pet pug
‘But after Christmas I was back in three times a week for check-ups and blood tests. That’s when it hit me, even though I rang the bell, it wasn’t over, it does not end there.
‘The idea of relapse and cancer was the only thing that was ever on my mind. I was always looking out for it and the hospital was my second home.
‘I couldn’t return to work or college; it was this constant routine of meds, hospital, make sure the cancer’s not back and the transplant’s working. This was my life now.
‘My 100 days past transplant took me up to my 18th birthday, which I saw as a milestone. I never thought I’d make it to my 18th, so it meant a lot.’
Because Cait was only 17 when she went through her treatment, she says she wasn’t given access to an appropriate mental health support worker – something she would like to see change.
Because Cait was only 17 when she went through her treatment, she says she wasn’t given access to a mental health support worker – something she would like to see change
Kate wants to see more psychological support available for women under 18 who have become infertile due to cancer treatment and are going through the menopause
‘It was a difficult age to get diagnosed because when you reach 16, some hospitals have different policies – some will treat you as an adult, but some will treat you as a child as you’re under 18,’ she explained.
‘Because I was only 17 I didn’t have access to a counsellor. My college said they could connect me with someone, but I didn’t find them helpful because I don’t think they understood cancer related trauma. That was difficult.
‘Eventually I told my Teenage Cancer Trust nurse that I was struggling. She found it difficult because she really wanted to refer me to a psychoncologist (a clinical psychologist for cancer patients) – but because I wasn’t 18, she couldn’t do the referral. Why should a person have to wait until they’re 18 to have access to that support?’
Equally, she wants to see more psychological support available for women under 18 who have become infertile due to cancer treatment and are going through the menopause.
Cait has set up a peer support group through her hospital which she’s hoping will be rolled out to other units and has been asked to contribute to Make Menopause Matter founder Diane Danzebrink’s upcoming book
Cait was too poorly to freeze her eggs when she was diagnosed, and when she went back to college and saw girls her age having children, it was a traumatic experience.
‘It was weeks before I found out I was menopausal, so socially it impacted me,’ she said. ‘It also affected my relationship with my mum. She never went to her GP when she was going through the menopause, she just put up with her symptoms.
How can cancer affect the menopause?
Some cancer treatments can affect the way the ovaries work. This can cause an early menopause for some women.
Before menopause, the ovaries produce the hormones oestrogen and progesterone. These control a woman’s monthly cycle. During menopause, periods gradually stop as the ovaries stop producing these hormones. For most women, this usually happens naturally between the ages of 45 and 55.
Different cancer treatments can cause an early menopause. These include chemotherapy, surgery to remove both ovaries and radiotherapy to the pelvis. Hormonal treatments for breast cancer may also cause menopausal symptoms or a temporary menopause.
Menopause, and particularly early menopause, may increase the risk of bone thinning (osteoporosis) and heart disease.
Women lose bone rapidly in the first few years after the menopause. Women are more at risk of osteoporosis than men, particularly if the menopause begins early (before the age of 45) or they’ve had their ovaries removed.
Source: Macmillan Cancer
‘So when I was complaining about my sweats and going through three changes of clothes a day, she was like, “Well I’m going through it too,” which wasn’t helpful, so I ended up shouting at her and said “Well at least you got to have kids”.
‘I joined support groups on Facebook to get advice and find closure, and even though I felt out of place at the beginning among all these hormonal women complaining about their husbands, after I shared a few comments saying I was struggling, they helped me through it.
‘I became passionate about menopause and I’ve set up a peer support group through my hospital which I’m hoping will be rolled out to other units. I’ve also been asked to contribute to Make Menopause Matter founder Diane Danzebrink’s upcoming book.
‘Eventually I want to make menopause support LGBT friendly, as I have friends who are trans men, so I want to make it inclusive to all. At the moment menopause support comes under women’s health.
‘I think it’s so important people know about the health implications of menopause and how it affects women psychologically. It doesn’t just affect women in their 40s and 50s, it is happening in teenagers.’
A survey by Teenage Cancer Trust found that 29 per cent of young people who were treated for cancer didn’t have a discussion about their fertility, and 44 per cent of young people who did have a discussion about their fertility were not satisfied with it.
A spokesperson said: ‘As a charity, we want full and frank conversations around fertility to be had with every teenager and young adult with cancer, even if health professionals believe their fertility will not be affected by their diagnosis.
‘Just one per cent of all cancer diagnosis are in 13-24-year-old, however, cancer is the leading cause of death from disease for that age group.
‘Early diagnosis saves lives – and in Cait’s case, might have meant she’d have more time to protect her fertility. So it’s best to check out any symptoms at the earliest opportunity.’
For more information visit www.teenagecancertrust.org
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