A woman has told of her shock after she was informed via email that she had cancer - just days after being told that there were no follow-up appointments available following her scans.
Jennifer Keane only just turned 40 last month, but had been troubled by breast cancer symptoms since late summer. The structural engineer went to her GP who referred her on to the Nightingale Centre, the diagnostic and treatment centre for breast cancer at Wythenshawe Hospital.
Jennifer, from Disley, attended her appointment for a mammogram and ultrasound scan, but after being told by clinicians to book a follow up appointment in two weeks, she was then informed by receptionists that there were none available in that timeframe. Two days after Jennifer's scans, she says she received an email containing a letter from the Nightingale Centre to her GP - detailing that her scan images were labelled with codes denoting cancer.
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The hospital has apologised 'for the distress this has caused', saying 'patient care is our top priority and we endeavour to deliver sensitive news directly to patients from a member of the clinical team'.
“My symptoms properly started between July and August, but I didn’t think much of it. I didn’t notice a lump, the first symptom I had was my nipple becoming so sensitive, nothing could touch it – I had to put cotton rounds in a soft crop top to wear and it was still unbearable," Jennifer told the Manchester Evening News.
“Then I started having swelling in my breast and stabbing pains. It all went away but I was left with a shape change to my breast, it looked like the flesh had been pinched back - there was some dimpling and a flat area.
"I went to the GP in mid-September. My husband and I had a trip booked to New York for my birthday, and I had an appointment [at the Nightingale Centre for scans] for when I got home.
“When I got home from the trip, I had to cancel my appointment at the Nightingale Centre because I had Covid in mid-October, they said the wait for a new one would be four weeks"
Jennifer had her scans on Tuesday of last week, November 14. During the appointment, Jennifer says she started to feel like there might be bad news: "I was sitting with the ultrasound tech and a nurse staring at the image as I was having the scan.
“I felt like the nurse’s demeanour changed, it became more serious and concerned. The nurse started holding my hand. I was sort of like, ‘that’s nice but what the hell?’
“They didn’t tell me anything on the day, but I had said during the scan ‘that’s a large shadow, but I’m forgetting the picture is really zoomed in on things like this’. The nurse replied, ‘no, that is a large shadow.’”
A number of biopsies were taken and a clip marker was also inserted into an area of concern. These are used to help surgeons locate where they might have to operate again, and it's use made Jennifer even more worried.
“The staff called it a lump," said Jennifer. “I was given a sheet and told to book a follow up appointment in two weeks time, but I was told by the receptionist that I couldn’t do that because there were no appointments available in two weeks.
"I was told that one of the secretaries would have to call me and book it later."
Two days later, on Thursday November 16, Jennifer says she was notified by email of a letter on the online portal for patients under Manchester University NHS Foundation Trust - which operates the Nightingale Centre. Jennifer assumed it would be an update about her follow up appointment, but says she opened it to find devastating news.
The letter, seen by the M.E.N., describes Jennifer's mammogram and ultrasound using a letter and number code. Jennifer's ultrasound was classed as U5, while her mammogram was classed as M5.
According to charity Breast Cancer Now, breast screening results described as M5 and U5 are 'cancer'. The leading breast cancer charity's website reads: "The breast clinic will let you know how and when you’ll get your results.
"You may hear your results described as a letter and a number. ‘M’ stands for mammogram.
"Mammogram results may be described as:
- M1: normal breast tissue
- M2: benign (not cancer)
- M3: uncertain but probably benign
- M4: suspicious and possibly cancer
- M5: cancer
"‘U’ stands for ultrasound. Ultrasound results may be described as:
- U1: normal breast tissue
- U2: benign (not cancer)
- U3: uncertain but probably benign
- U4: suspicious and possibly cancer
- U5: cancer."
Jennifer had to research the codes and found out via the internet that she has cancer. "I assumed it was an appointment letter but the language was very clear – and I had been told none of it before," said Jennifer.
“I had to do research on breast cancer websites to understand it, I only slowly realised the gravity of what was in that letter, which is saying the scans are consistent with malignancy.
“They’ve diagnosed me with cancer from the image, and the biopsies will give more information. I was telling my husband, ‘I didn’t even get a leaflet!’
“I got no support, nobody to ask questions of, no follow up appointment. It made me really scared. I didn’t feel like I was being looked after very well, I know pre-menopausal cancer can be really aggressive.
“I started worrying ‘am I going to die?’"
Jennifer says she is the fourth person in her family this year to suffer cancer, with two dying from the illness.
Jennifer formally complained about her experience through the NHS complaints system, PALS, which was followed by a call from a secretary to book a follow up appointment. That appointment is due to take place on Monday. Jennifer said: “The secretary told me ‘it shouldn’t have happened’ when I explained what had gone on.
“In some ways, I know I’ve got cancer now, I’ve had to start making my peace with it a bit… but I’m still nervous about what will come. Does that mean chemotherapy before Christmas? If I have to do it, I’ll do it.
“I think I haven’t processed the news properly yet because it felt like I was figuring it all out on my own from the email. I think when I’m face to face on Monday for the biopsy results that it’ll feel more real and I might be more upset then.
“Had I heard this news face-to-face, I think I would have had a different experience.”
Jennifer says she never wants someone else to find out their diagnosis in the way she appears to have, adding: “I don’t know if I was sent a copy of this letter as an automatic function but should they really be sending these things to people if the patient hasn’t had a discussion with doctors about it before?”
A spokesperson for Manchester University NHS Foundation Trust said: “We would like to apologise to Jennifer for the distress this has caused. Patient care is our top priority and we endeavour to deliver sensitive news directly to patients from a member of the clinical team.
“We understand Jennifer has held positive conversations with our PALS team. However, our door always remains open should she wish to discuss any further questions with us.”
