Woman, 24, diagnosed with breast cancer in lockdown reveals how strict rules meant she was given the news alone, had no one there during chemo and had to say goodbye to her father in the car park before her mastectomy
- Amy Johnston, 25, from West Kirby, diagnosed with breast cancer in lockdown
- First GP appointment via video call and attended subsequent appointments solo
- Told over phone her treatment for triple negative breast cancer could make her infertile and has been unable to see boyfriend for months as he lives in Yorkshire
A young woman who was diagnosed with breast cancer in lockdown has shared her harrowing ordeal of going through treatment and surgery alone.
Amy Johnston, from West Kirby, Merseyside, was just 24 when she was told the lump in her breast was cancerous in May 2020 – around the time the UK was declared the European country worst affected by Covid-19.
Her first GP appointment was via video call, while Amy had to attend subsequent ultrasounds alone – with nurses unable to hug her when she was given the bad news and friends and family members prevented from visiting to comfort her due to the government stay at home order.
She was told over the phone that her treatment could make her infertile, and described the ‘scary’ process of going into hospital for a mastectomy, after saying goodbye to her father in the car park because he couldn’t even accompany her to the waiting room.
Amy Johnston, from West Kirby, was just 24 when she was told the lump in her breast was cancerous in May 2020 – around the time the UK was declared the European country worst affected by Covid-19
Amy was told over the phone that her treatment could make her infertile, and described the ‘scary’ process of going into hospital for a mastectomy, after saying goodbye to her father in the car park because he couldn’t even accompany her to the waiting room
She also faced ‘frightening’ chemotherapy treatment alone and nearly died when an allergic reaction sent her into anaphylactic shock.
To ensure other young people don’t have to go through a similar ordeal, Amy is supporting the Teenage Cancer Trust’s Hand2Hold campaign, in partnership with CLIC Sargent, which is calling on the government to ensure young people don’t have to face cancer alone.
She is also in the process of setting up her own online support group, with funding from CLIC Sargent, called The Young Cancer Action Network (YouCAN), which will offer free advice, community support and help with with self-development opportunities for teenagers and young people living with cancer.
Amy, now 25, who has inherited the BRCA1 gene from her father, finished treatment in November and is now waiting for non-urgent surgery to restart so that she can have a double mastectomy to give her peace of mind for the future.
She told FEMAIL: ‘The type of breast cancer I had was very aggressive and very fast growing and can spread really easily, so about two weeks after I was diagnosed I had a mastectomy which went as well as it could have gone.
Less than a week after her first GP appointment, Amy was diagnosed with triple negative breast cancer and had a mastectomy followed by chemotherapy
‘My lymph nodes were clear and they were able to get clear margins, but because it’s triple negative and not linked to any hormones they don’t know how exactly it spreads, so I also had five months of chemotherapy.’
Amy first noticed a lump in her breast while getting dressed one day. Worried, she phoned a friend who works at a breast clinic, who told her to go to her GP.
‘We were in the first lockdown and my appointment was over video, which was weird in itself as I had to take my top off for a stranger,’ she recalled.
‘The GP said it was probably nothing to worry about as 24 year olds don’t really get breast cancer, but she referred me to the breast clinic for an ultrasound.
‘Before my appointment, I spoke to friends who work in healthcare who said it was probably hormonal or a cyst, which would show up on the ultrasound.’
Amy said she was initially OK with attending the appointment alone, but when the radiographer told her it wasn’t a cyst, she burst into tears.
She was then taken for a biopsy and a mammogram, and told how she was crying so much that staff led her through the ‘back routes’ of the hospital because they didn’t want to take her down the main corridors.
Now 25, Amy is in the process of setting up her own online support group, with funding from CLIC Sargent, called The Young Cancer Action Network (YouCAN), which will offer free advice, community support and help with with self-development opportunities for teenagers and young people living with cancer
‘It completely came out of nowhere,’ she said of the diagnosis. ‘I was so upset that one of the nurses said, “I wish I could give you a hug”. She held my hand as that was the most she could do.
‘It was weird because you want people to come round and comfort you, but nobody could because they can’t go into anyone’s houses. A cancer diagnosis is always hard, it’s never easy. But it’s nice to have support from people around you.’
Less than a week after her first GP appointment, Amy was diagnosed with triple negative breast cancer.
Amy hasn’t been able to see much of her boyfriend, who lives in Yorkshire, throughout her ordeal. After self-isolating so he could come and care for her immediately after her surgery, he went home in August and the pair have only seen each other for a day or so since.
‘It’s been difficult… I also worry am I asking too much of him because of everything I’m dealing with I felt bad for everything I was putting him though,’ she said.
‘Not that he ever made me feel that way. I think that’s probably something a lot of young people with cancer worry about.’
Amy, now 25, who has inherited the BRCA1 gene from her father, finished treatment in November and is now waiting for non-urgent surgery to restart so that she can have a double mastectomy to give her peace of mind for the future (pictured ringing the bell after her final treatment)
Amy said going in for her mastectomy by herself was the scariest part, as she’d never had major surgery or a general anesthetic before.
‘I was walking into the biggest surgery of my life completely by myself,’ she recalled. ‘I remember me and my dad saying goodbye in the car park and we were just crying and he couldn’t even come into the waiting room with me. I just had to walk in.
What is the BRCA gene and how does it affect people’s risk of cancer?
Having a mutated BRCA gene – as famously carried by Angelina Jolie – dramatically increases the chance a woman will develop breast cancer in her lifetime, from 12 per cent to 90 per cent.
Between one in 800 and one in 1,000 women carry a BRCA gene mutation, which increases the chances of breast and ovarian cancer.
Both BRCA1 and BRCA2 are genes that produce proteins to suppress tumours. When these are mutated, DNA damage can be caused and cells are more likely to become cancerous.
The mutations are usually inherited and increase the risk of ovarian cancer and breast cancer significantly.
When a child has a parent who carries a mutation in one of these genes they have a 50 percent chance of inheriting the mutations.
About 1.3 per cent of women in the general population will develop ovarian cancer, this increase to 44 percent of women who inherit a harmful BRCA1 mutation.
‘I struggled with that as a 24-year-old, I can’t imagine younger people having to go through something so big alone.’
Amy added that she was lucky to have an aunt who worked as a nurse at the hospital, who came to check on her.
‘It was nice to see someone I knew. She was working so couldn’t stay long but she’s a recovery nurse so when I woke up, I saw her which was nice,’ she said.
Amy added that she would have benefitted from having someone with her when she went in for chemotherapy.
‘I had to go in by myself, which was frightening,’ she said. ‘On one occasion I was severely allergic to my first chemotherapy drug I was on. During the first week I was itchy and had a slight rash, but it didn’t seem too bad. The following week, about four minutes after the dose of chemotherapy was administered, I turned to a nurse and told her that I felt sick.
‘The next thing I knew, there were seven or eight nurses around me because she’d pushed the emergency button. By this point, my face was bright red, my heart was beating fast and my chest was tight, my face and my throat started to swell, and I couldn’t breathe properly.
‘They were so quick sorting it out and they stopped administering the chemo, put something through my PICC line and then within about three minutes I was fine. But it was really scary and the closest that I had come to death.
‘I wanted my dad with me, and I really missed having anyone there. I had to stay for an hour so they could keep an eye on me. I had taken a book in to read but I couldn’t after I had nearly died, and just sat staring into space. I didn’t know what to do with myself.’
When Amy called her father to tell him what had happened, she said he found it tough. ‘You want to be there for your child when they go through something like that,’ she explained.
‘I don’t think the people around me knew what to say. I felt like crying but I didn’t feel like I could cry because it would be awkward to sit and cry there by myself, but it was scary.
Amy hasn’t been able to see much of her boyfriend, who lives in Yorkshire, throughout her ordeal. After self-isolating so he could come and care for her immediately after her surgery, he went home in August and the pair have only seen each other for a day or so since (pictured together)
‘Nobody could comfort you. I think the nurses and medical professionals would love to give you a hug and care for you, but they can’t – especially if you’re going through something horrific like cancer.’
Having been warned her treatment could trigger early menopause, Amy had her eggs harvested. She recalled going into the Covid-free hospital by herself and being greeted by a ‘bouncer’ on the door who asked if she had an appointment.
‘When my oncologist was listing off the side effects and said I might go into early menopause I just burst into tears. I didn’t really know it was associated with chemo and hadn’t thought about it that much,’ she said.
‘Luckily, I had time to preserve my fertility, but I put so much pressure on myself as I thought it could be my only chance to have children. I found it hard to inject myself, so to start with my aunt came round in full PPE to give me the injections twice a day in our garden. But I soon became a pro at it.
‘During one appointment they found that one of my ovaries wasn’t stimulating eggs and there were only six egg sacks. I thought, “Is that all? Will I only have six chances?” I felt there was not enough happening, and I burst into tears. Again, I had to go through that by myself without my boyfriend or family around.
After spotting the Teenage Cancer Trust and CLIC Sargent Hand2Hold campaign on social media, Amy said she felt it was something she would have benefitted from. She is sharing her story to help raise awareness of the campaign
‘They prolonged my injections for a couple of days, and they managed to get 16 eggs, which I was so happy with. I had to have that surgery by myself too and it felt quite invasive. I was a young woman by myself with my legs up in stirrups while seven or eight medical professionals stood that end talking to me. I thought, “This is so weird, can you at least come and stand by my head?”‘
Amy’s eggs will need to be screened due to her BRCA1 mutation to ensure her children aren’t carriers. Luckily she hasn’t gone into early menopause and the chemotherapy doesn’t appear to have affected her fertility.
After spotting the Teenage Cancer Trust and CLIC Sargent Hand2Hold campaign on social media, Amy said she felt it was something she would have benefitted from.
She is sharing her story to help raise awareness of the campaign, which calls on health ministers in all four nations to end the disparity in hospital visiting policy and ensure young people with cancer have that all-important loved one by their side during treatment and beyond.
‘As I was diagnosed with breast cancer during the height of the Covid-19 pandemic, I had my diagnosis and treatment alone. I think it is so important for everyone to have someone with them during their cancer journey, but perhaps more so for younger people,’ she said.
‘Older people have more life experience and are more equipped to deal with it. For a lot of young people diagnosed with cancer, it will be the biggest thing in their life to date and at the minute, most have to go through it by themselves.’
For more information, visit https://www.teenagecancertrust.org/
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