WHEN Sue Ware was planning her mum’s funeral after losing her to breast cancer, she never dreamed she would also get the disease.
But that’s exactly what happened.
Just five days after her mother Betty died, 59-year-old Sue, from Dunstable, Bedfordshire, was diagnosed with inflammatory breast cancer after noticing redness on her right boob.
She first spotted the change while still caring for her mum.
Sue looked in the mirror as she was getting dressed and saw that as well as having redness, her breast was swollen and felt heavy.
But cancer was the last thing she thought could be the cause.
“I wasn’t worried,”; Sue says. “I thought I’d knocked it against something while moving mum around the house.
“I showed my wife Linda, and she agreed it was a different size.
“But because I knew I only had a few weeks left with mum, she was my priority and I pushed my thoughts aside to focus on our time together.”;
Still, the changes in Sue’s breast played on her mind and when the pain worsened, she saw her GP.
“The doctor said it could be mastitis but seeing as I was 57 at the time and it was usually diagnosed in women who are breastfeeding, I wasn’t in the right age bracket,”; she says.
“I was prescribed antibiotics and given an urgent referral to a breast screening clinic.”;
But still Sue wasn’t concerned.
“I’d had a mammogram two months earlier which had come back clear, so I was feeling pretty confident,”; she says.
Just days later, Sue’s mum sadly passed away.
“Even though I knew the end was coming, it was heartbreaking to lose mum,”; Sue says.
“As well as being mother and daughter, we had become really good friends too.”;
The same week, while lost in grief, Sue had her appointment at the clinic.
“I was given a biopsy and having worked as a play specialist with teenagers in an oncology department, I was pretty good at reading doctors’ faces,”; she says.
“After the procedure, they started mumbling and frowning at each other and that was the moment I knew it was bad news.
“Linda was waiting outside the room, so I quickly got dressed and went to warn her.
“As I hurriedly pulled on a boot, I told her I didn’t think it was as straightforward as we first thought.
“Her face crumpled with shock and sadness, which pushed me to try to stay strong.”;
As I broke the news of my diagnosis, tears rolled down my dad's cheeks. It was horrendous, I thought he would die of heartbreak
Sue Ware
While waiting for the results and with the help of her brother Graham, Sue threw herself into planning their mum’s funeral, keen to give her the best send-off possible.
The following week, in September 2023, Sue was diagnosed with rare and aggressive inflammatory breast cancer (IBC).
This type accounts for less than five per cent of breast cancers and tends to develop quicker than other more common types of breast cancer.
“The shock was overwhelming,”; she says. “I was stage 3B because it had been caught so late.
“And the fact mum had just died of breast cancer made it so surreal, like an out-of-body experience.
“A breast cancer nurse assured me it wasn’t genetic and wasn’t exactly the same type of breastcancermum had.
“Mum had metastatic cancer – it started with a melon-sized lump under her armpit, which she’d initially kept a secret.
“When it spread to her womb she had a hysterectomy, then the disease eventually spread to her spine and liver.
“I had all the symptoms of IBC – dimpled orange peel-like skin, heaviness, pain, and the redness that I’d first noticed.
“Still, I was told that even aggressive breast cancers like mine could be treated, and I was determined to beat it.”;
Six days later, Sue attended her mum’s funeral.
“I was so sad to say goodbye but relieved I didn’t have to tell her my bad news,”; Sue says.
“Even though her breast cancer wasn’t genetic, I know she would have blamed herself for me having it.
“After the funeral, I decided to tell my dad George my news. I caught him coming downstairs saying how surprisingly uplifting he’d thought the day had been.
“I looked across to my brother and sister-in-law Estelle and we all knew my announcement was going to crush him.
“As I broke the news of my diagnosis, tears rolled down his cheeks. It was horrendous, I thought he would die of heartbreak.”;
That month, in October 2023, Sue started chemotherapy.
‘Life on hold'
“It was a very intensive chemo, epirubicin and cyclophosphamide, sometimes referred to as the ‘red devil’ due to the red liquid and serious side effects,”; she says.
“After just one session my hair fell out, but I was prepared for it.
“During my career I’d seen children and teenagers lose their hair and I’d also watched it grow back. If they could do it, I could.
“I ended up pulling my hair out because it was so itchy, and my son-in-law Paul came round with clippers and shaved it all off for me.
“I also had terrible nausea and food tasted awful, but I knew the treatment was a case of putting my life on hold for six months, then I’d be OK.”;
The treatment appeared successful and scans showed the mass in Sue’s breast had shrunk from 26mm to 10mm.
In January 2024, the cancer was no longer in eight lymph nodes, only one.
Then weeks later, Sue noticed the redness was spreading – and in April 2024, she was dealt the worst news.
I caught my cancer too late, but knowing what to look for and early detection could save your life
Sue Ware
“I was told surgery wasn’t an option, because if they cut into the cancer, it would cause it to spread,”; she says.
“Through tears, I asked what that meant for me and they said my cancer was incurable.
“I was really taken aback. I’d been positive all this time and then it was like everything came crashing down.
“I wouldn’t get to see my 24-year-old son Ben achieve a career in creative writing, maybe not even making it to see him graduate after finishing his PhD.
“And I’d never get to see my grandchildren, Oscar, nine, Olivia, four, and Ava, nine, grow up.”;
She adds: “The impact of my disease and grief of losing mum hit me all at once.
“The thought of leaving my wife, family and friends behind was just unbearable.
“Linda and I went away for a weekend to grieve our lost future together, before breaking the news to family and friends. I also saw a psychotherapist and cried for an hour.
“After that, I went from uncontrollable sobbing and thinking about what I’d lose, to being thankful that I was still alive.”;
Sue took part in a gliding experience, enhancing her renewed positive outlook on life.
“As I was in the aeroplane, I justthought, ‘I’m still alive so I need to keep on living’,”; she says.
Now Sue receives ENHERTU, a type of chemotherapy that has been called a breakthrough in breast cancer treatment, providing patients with more time, every three weeks for her stage 4 cancer.
“So far I haven’t lost the hair that has grown back since having chemo the first time, so that’s good,”; Sue, who works with the Inflammatory Breast Cancer Network, says.
“I do have to deal with nausea but some days I feel great.
“Doctors can’t say how long I have, but those with stage 4 IBC are given a 25 to 33 per cent chance of a five-year survival.
“However, it’s thought ENHERTU is likely to extend life expectancy – it just hasn’t been used long enough for us to know yet.
“I’m responding well to it, so I’m staying positive. My family and friends have been my rock, including my stepdaughters Jo and Jenna, and I’m focusing on living each day to its fullest.”;
Signs of inflammatory breast cancer
INFLAMMATORY breast cancer (IBC) is a rare type of breast cancer, accounting for less than five per cent of all cases.
It tends to develop very quickly and symptoms can come on quite suddenly. They include:
- Swelling and redness of the breast
- Pain
- Swollen lymph nodes
- Firm or hard breast that is hot to the touch
- Skin that looks like orange peel
- Changes to the nipple (e.g. flattening or inverted)
- A lump in the breast
Tests, such as a breast examination, mammogram or ultrasound, will be used to confirm a diagnosis.
The type of treatment depends on several factors, including whether your cancer cells have receptors for particular drugs, but may include surgery, chemotherapy, radiotherapy or hormone therapy.
Because IBC is fast-developing and may spread to other parts of the body, the outlook is generally worse than for other types of breast cancer.
At the time of diagnosis, IBC is either stage 3 or stage 4.
More than 70 per cent of women survive their cancer for five years or more after diagnosis.
This drops to 25 per cent at stage 4. At this point, the cancer is not curable but may be controlled with treatment.
Source: Cancer Research UK
She adds: “Mum lived for five years with her cancer, time which I’m so grateful for because we had such a fabulous relationship together.
“Even when mum was unwell, we managed to visit her favourite restaurant Rockfish for fish and chips to celebrate Mother’s Day.
“What I loved most about her was the twinkle in her eyes. When looking at mum, her eyes could either cut you down quickly or wrap you in the warmest hug.
“I’m also so grateful to her for taking a real interest in everything that I did.
“I really miss her. She was a real trooper over those extra five years and I hope I can be as strong as she was.
“Now I’m on a mission to urge people to trust their instincts and not just to feel for lumps but to look for other changes too – swelling and redness, pain, orange peel-like dimpling, changes to the nipple, and a feeling of heaviness.
“I’m determined to get those symptoms printed as bullet points on the routine mammogram letters that hospitals send out when you’re due an appointment.
“I caught my cancer too late, but knowing what to look for and early detection could save your life. If something feels off, don’t wait.”;
Sue is part of the Asda Tickled Pink Mother's Day campaign which raises money for Breast Cancer Now and CoppaFeel! For more info visit:asda.com/creating-change-for-better/social/tickled-pink
