The 22
Who We Are
Alison Livingstone
Farnham, Surrey
I was diagnosed with lobular breast cancer in June 2023, aged 52. I found a lump, the mammogram was clear and so biopsies were taken. I was told to expect lumpectomy and radiotherapy but following an MRI they discovered I had a 4cm tumor and 11 lymph nodes were affected.
I’d had mammograms in 2022 and 2021 which appeared clear.
My cancer was now more advanced as it was missed via usual screening, which is very common with Lobular breast cancer.
My treatment was a mastectomy, 8 rounds chemotherapy, 3 weeks radiotherapy, ovaries removed, tablets for 10 years including Letrozole and Abemaciclib and Zolendronic Acid bone infusions for 3 years. I am also awaiting breast reconstruction. I have been told numerous times that “they’re throwing everything at me” which is not what I want to hear but I am very grateful for the treatment.
The cost to the NHS for my treatment is huge, the Abemaciclib tablets alone cost £3,000 per month. I worked all through my treatment, but with ongoing fatigue I recently decided to reduce my hours considerably.
I was shocked to find that lobular breast cancer isn’t understood and there isn’t any specific treatment. I then found The Lobular Moon Shot Project.
The £20million research project is long overdue and will save thousands of women’s lives and determine specific treatments. Investing in this research will also save the NHS money in the long term.
Amalia da Silva
Thornton Heath, Croydon
On 21st December 2023, I received the life-altering diagnosis of Invasive Lobular Breast Cancer. This was a type of cancer I had never heard of before, and it was shocking to learn that my condition went undetected on mammogram. Initially, only two tiny specks (8mm and 5mm) were visible on an ultrasound but then an MRI revealed the true extent of the situation: an alarming 80mm tumour.
Following the revelation that the tumour was far larger than they first thought, the consultant ordered bone and CT scans to check for spread. It was a terrifying two week wait before, I was given the results…
I quickly learned that Invasive Lobular Breast Cancer has distinctive features and that imaging for it can be unreliable until it reaches an advanced stage.
In February, I underwent surgery (a mastectomy) and although I was told I would have 6 months of chemotherapy due to the size of the tumour, a test called Prosignia profiled my tumour and I ‘got away with’ 5 days of radiotherapy. This then brought on a certain amount of anxiety as to whether or not I’d been undertreated but in the end, you have to trust!
Thankfully, as far as I know at this moment, the cancer has not spread and it wasn’t in my lymph nodes. However, I will continue with daily hormonal therapy for at least five years along with monthly injections.
I am lucky and yet even after all this treatment, my breast cancer could return such is the insidious nature of lobular breast cancer.
Caroline Streatfield
Brighton, East Sussex
My name is Caroline and I was diagnosed with Invasive Lobular breast Cancer in October 2021.It came as a total shock as there is no history of cancer in my family. I did not have a lump in my breast or any symptoms, as is quite usual with a lobular diagnosis. I actual feel that I was lucky that it was detected on my first mammogram as lobular is often missed due to its unique features.
I have been treated with generic breast cancer treatments. I had a mastectomy, chemotherapy, and radiotherapy. I was also treated with a targeted therapy and currently take a hormone inhibitor and have monthly injections to reduce oestrogen. I also elected to have a second mastectomy on the non-effected breast to reduce the risk of lobular breast cancer recurring.
Other than my original diagnosis appointment the fact that my breast cancer is lobular has never been mentioned. I find this very worrying as we know this disease acts very differently to ductal breast cancer and can reoccur and advance many years later. I have a disabled son and I am obviously concerned that if my cancer advances I cannot give him the care he will need for the rest of his life.
I am currently undergoing scans as blood tests are showing abnormal results.
Carrie Littler
Gloucestershire
My name is Carrie and I live in Gloucestershire. In 2018 I attended routine mammogram screening, this image was reported clear.
Devastatingly, this was incorrect, I had Invasive Lobular breast cancer. Lobular is notoriously difficult to detect via mammogram.
I will never know how much the tumour grew or if it was already in my lymph node in 2018, so the treatment to save me from this terrible disease, began 14 months later than it should have.
My treatment started with surgery, then in March 2020 I began chemotherapy, being given drugs not specific to Lobular breast cancer and added my name to the list of extremely vulnerable during the pandemic. This was terrifying for both me and my family. Radiotherapy came next, 15 sessions every week day, in comparison to chemotherapy much easier.
I am half way through ten years of preventative hormone medication, which is not without its own side effects. Although my cancer was missed on mammogram, the only screening I have been allowed is five years annual mammograms, and now that has finished I have reverted to general screening, every three years. I have chosen to pay privately for yearly MRI's, which I believe is currently the most appropriate option for Lobular.
I am incredibly grateful to the NHS, however, I am one of 15% of women with breast cancer, allowed to slip through the net and left struggling to comprehend, why in such an advanced and wealthy nation we should be overlooked and forgotten?
Danni Buck
Nottingham, Nottinghamshire
In April 2017, I was diagnosed with bilateral invasive lobular breast cancer—a discovery that only came after persistence and a fortunate twist of fate. Despite no outward concerns, I’d requested a routine mammogram, which was initially denied. Thankfully, the genetics clinic—who were following up due to family history—offered one. While lobular cancer often hides on imaging, they found an NST (no special type) tumour. That led to further investigation, and ultimately, the lobular diagnosis.
In 2024, I faced a third primary breast cancer diagnosis.
I am living proof that lobular breast cancer often goes unseen, and that we can’t rely solely on standard imaging or assumptions. My story is a reminder of how critical it is to listen to our bodies, push for answers, and advocate for better detection and understanding of this quiet, insidious form of breast cancer.
Debbie Parker
South East London
My name is Debbie Parker and I live in South East London. I was diagnosed with Invasive Lobular Breast Cancer in 2017.
I was extremely lucky to be diagnosed at an early stage on a routine mammogram. I am a nurse but could not find a lump. This I subsequently learned is because lobular cancer rarely forms a lump, unlike ductal. I have had surgery, radiotherapy and remain on endocrine therapy.
I did not know about lobular breast cancer prior to my diagnosis. I was also unaware my type of cancer has no specific treatments available, is under researched and few medical professionals seem to be aware of it and its significance, at all.
After completing five years of annual mammograms post surgery and radiotherapy, I have been offered just three yearly mammogram screening, despite my high risk status and the fact that other investigations (MRIs, USS and Contrast Enhanced Mammograms) are more effective for lobular patients. I have been told that looking for lobular cancer on a mammogram can be like looking for a snowball in a snowstorm.
There is no individualised care for us. To date there are no NICE Guidelines specifically for lobular breast cancer. It is high time for this inequality to stop and for lobular patients to have their own individualised treatment path.
Vital research is needed now into the unique biology of this distinct disease. Early detection of breast cancer equals better patient outcomes and less cost to the NHS in the long term.
Jenny Arnold
Bromyard, Herefordshire
My name is Jenny Arnold, and I live in Bromyard, Herefordshire. I am writing to share my experience with invasive lobular breast cancer and to urge the government to fund urgently needed research into this under-researched disease.
Two weeks after receiving a clear mammogram, I noticed a small dimple under my left breast, visible only when I raised my arm. I trusted my instincts and contacted my GP, who referred me back to the breast clinic. An ultrasound and biopsies revealed breast cancer—missed just two weeks earlier on my mammogram. Further scans showed a 2cm tumour, and I began chemotherapy straight away.
I endured seven rounds of chemotherapy, but sadly, there was no response. I was told a lumpectomy was no longer an option and I required a mastectomy. Pathology results revealed a 9cm tumour with extensive lobular carcinoma in situ (LCIS). Despite initial reassurance that my lymph nodes were unaffected, further surgery confirmed cancer in 4 out of 15 nodes.
I went on to have 15 rounds of radiotherapy and began targeted therapy, which I had to stop due to a severe reaction. I also had to start hormone therapy. Fearing recurrence and recognising how easily lobular cancer can be missed, I underwent DIEP flap reconstruction and a preventative mastectomy of my other breast.
Lobular breast cancer accounts for 15% of all breast cancers, yet it remains under-researched and difficult to detect through standard screening. My 9cm tumour was missed just weeks before diagnosis. With no routine follow-up scans offered, I now live with constant fear of recurrence.
I volunteer with the Lobular Moon Shot Project because urgent action is needed. Researchers are ready to begin work—they simply need government funding. Investing in this research will not only save lives but also reduce long-term costs to the NHS through earlier detection and more effective treatments.
Kate Ford
Walton-on-Thames, Surrey
My story began in December 2022. My right breast was misshapen, and I noticed a dimpled area and, unusually for lobular, a lump. At my first hospital appointment in January 2023, I was told to prepare myself as it was likely I had breast cancer. I was on my own, and the shock was overwhelming.
Following surgery, I discovered I had invasive lobular breast cancer; I was 49. At the time, I had no idea there were different types of breast cancer and I’d never heard of lobular. My pathology showed a 28mm tumour, lymphovascular (LVI) and perineural (PNI) invasion, and three positive lymph nodes under my right arm. 23 lymph nodes were removed in total.
In March 2023, I began four months of gruelling chemotherapy. This included four rounds of EC, also known as the Red Devil, and four rounds of Paclitaxel bi-weekly. My second Paclitaxel dose caused an anaphylactic shock, and I woke up surrounded by the crash team. I was then switched to Nab-paclitaxel, also known as Arbraxane, for the final three rounds. In September 2023, I had 15 sessions of radiotherapy over three weeks and in October 2023, I was told I was no evidence of disease (NED). I’m now taking daily, monthly and six-monthly medication to help prevent recurrence.
Through my research and finding the Lobular Moon Shot Project, I discovered lobular breast cancer is different and it’s massively under-researched. Realising you have a type of breast cancer that has no specific treatment is devastating.
Katie Swinburne
Darlington, County Durham
My name is Katie Swinburne. I was 47, fit, and raising three young sons when I found a large lump overnight. I had a clear Mammogram and ultrasound and was told by the sonographer he was 99% sure it was benign. But a biopsy revealed invasive lobular carcinoma (ILC)—a cancer often invisible on standard scans because lobular spreads like a spider’s web instead of forming clear lumps.
My 6.5 cm tumour had grown silently, undetected, despite my vigilance. I endured a double mastectomy, months of gruelling chemotherapy, painful radiotherapy, and hormone treatment with no known benefit. The physical and emotional brutality of this journey was overwhelming—seeing mastectomy scars for the first time, losing my hair, holding my children’s hands through their terror.
ILC is the second most common breast cancer in the UK, yet research is decades behind. Our screening and treatments are designed for ductal cancer, not lobular. Women like me face delayed diagnoses, larger tumours, and higher risks of spread because often our disease isn’t visible on standard imaging and we are not yet of screening age. We are left living in constant fear of recurrence, with no reliable follow-up tools to catch it early.
I’m asking you to fund £20 million in dedicated research so women with lobular breast cancer get imaging that works, treatments that target our cancer, and a real chance at survival. I am surviving by chance; others may not unless we act now. Please help end the suffering and save lives by making this unmet clinical need a research priority.
Kirstin Spencer
Winchcombe, Gloucestershire
Kirstin Spencer, Winchcombe, Gloucestershire.
2018 saw me diagnosed and treated for Stage 2, bi-lateral, multi focal, invasive Lobular breast cancer hiding in my dense breasts. I underwent a skin sparing double mastectomy and DIEP reconstruction.
After my operation, I was told how, especially in the first two years, the disease could recur in areas such as scar tissue, chest wall and surrounding skin. Vigilance and well managed medical follow up was essential. If caught early, a recurrence could be treated similarly to Primary Breast Cancer. I left that consulting room feeling educated, informed and crucially, reassured.
Within a year of initial diagnosis, I developed and reported red flag symptoms of recurrence. Unfortunately, these symptoms were repeatedly dismissed by my breast specialist and any medical investigation, refused. After challenging this decision several times, I was sent for psychological counselling.
Leaving London in 2020, my new GP acted on my concerns, hastily referring me for a biopsy and ultrasound. Substantial recurrence of disease was confirmed, and by then, a further FDG PET/CT scan evidenced extensive metastatic disease in my skin, lymph nodes, throughout my skeleton, leaving me Stage 4 and incurable.
My length of survival will depend on being able to access the right drugs in a timely fashion for my specific disease and mutations. However, Doctors are left struggling with guidelines that do not receive timely updates and lobular breast cancer is under researched and poorly understood. As a result, patients suffer barriers to access optimum treatment for this deadly disease.
Melissa Robinson
North Yorkshire
‘It’s only a cyst’ became my mantra. I clung to it as I awaited biopsy results. I told myself I was healthy. I ate well. I exercised. I didn’t smoke. Cancer wasn’t in my playbook. But I was wrong. At 47, I received the devastating news: I had invasive lobular breast cancer. A type I’d never heard of. A cancer I knew nothing about.
The clinicians described it as "sneaky." It doesn’t always form a lump. It can remain undetected in mammograms and ultrasounds - my follow-up MRI confirmed that truth. A second tumour lay hidden, stealthily weaving through tissue, unseen by standard screening.
But the hardest part wasn’t my diagnosis, or even my treatment pathway - it was telling my three children. As teenagers, they were old enough to understand the word cancer, but not mature enough to understand the implications. As I stoically delivered the message, I watched their innocent faces drop. Their smiles faded. Our voices cracked. Cancer had struck our happy home.
Months later, my surgical results came back. My margins and nodes were clear - a quiet and guarded relief. Finding my tumour early spared me a brutal chemotherapy battle. Instead, I am on hormone treatment in the hope that it’s effective. I accept the side-effects and the long-term risks, carrying the heavy burden of recurrence – because, currently, there are no better options. But lobular breast cancer is different. It hides differently. It spreads differently. It should be treated differently. Please give it the attention and investment it urgently deserves.
Sarah Ramsey Smith
Dunmow, Essex
My name is Sarah Ramsey Smith. On August 26th 2021 just 16 months after a clear routine mammogram I was diagnosed with advanced Lobular breast cancer. I had no idea what this was as I naively thought all breast cancer was the same. My consultant explained it was the second most common form but under research & under funded, the forgotten breast cancer with no specific treatment. I was terrified.
After some research I was staggered to learn LBC accounts for 15% of all breast Cancer diagnosis but I and none of my friends had ever heard of it.
I had a lumpectomy followed by full mastectomy, radiotherapy and on hormone blockers for 10 years praying they continue to work for me. How can there be no specific treatment for a cancer that affects around 8000 women per year in the UK alone.
Life after a lobular breast cancer diagnoses means I live in fear. I know it evades screening and I have not had a treatment based on specific scientific research.
If it metastasises, which can happen many years later, how do I find where in time to treat it and with what? It needs to be treated in the primary stage with its own protocol. I will never say I am cancer free, for now there is no evidence of disease.
I pray my precious granddaughter never has to hear the words said to me ‘I’m sorry you have LBC’. There has to be a change, in-depth research and a specific treatment.
Sharon Prince
Dalgety Bay, Fife, Scotland
I was diagnosed with lobular breast cancer in Dec 21. My diagnosis came a mere 7 months after a clear routine screening mammogram, I had no lump, no visual signs or symptoms, just a strange sensation within my breast.
Prior to my diagnosis I’d never heard of lobular breast cancer, surprising as it affects 15% of breast cancer cases, over 8000 every year in the UK.
It’s life changing to receive a cancer diagnosis, you have to put your trust into your medical team and commit to complete the treatments that they recommend. Imagine how it then feels to hear that the treatments you are enduring and pinning all your hopes on are not specific to the type of cancer that you have, it’s devastating. The ongoing anxiety of a recurrence is forever present, NICE guidelines only permit yearly mammograms for monitoring, my tumour was never detectable by mammogram.
I decided to learn about lobular and fortunately found the Lobular Moon Shot Project. Lobular patients have a constant battle to self-advocate, this is so unfair.
The scientists have told us an understanding of the basic biology of lobular will lead to specific treatments and tailored treatment paths, this can be done, the correct people are in place, the only thing missing is the funding.
After years of neglect please do the right thing, agree this vital funding, stop the inequalities around lobular.
We deserve to be on treatment paths specific to our type of breast cancer.
Dr. Susan Michaelis
Founder
Horsham, West Sussex
My name is Susan Michaelis, and in 2013 I was diagnosed with Lobular Breast Cancer. I had a clear mammogram, ultrasound, no lump, but I had seven centimetres of breast cancer.
And that was the introduction of me to invasive lobular breast cancer.
They put me on treatment, and I’ve remained on that all along.
But in 2021, eight years later, I was told that the cancer had gone to my bones. It was now metastatic.
So I realised that although I was on treatment, they were not specific to lobular breast cancer, which is known to behave very differently to the main type of breast cancer, where all the research funding has mainly gone. I realise we had to do something about this. To give people better outcomes. Subsequently, I set up the Lobular Moon Shot Project to do exactly this - to get the researchers, the funding they so desperately need to fully understand the basic biology of the disease and develop specific and effective treatments for lobular breast cancer.
The lack of research into lobular breast cancer is very upsetting.
we need better outcomes because in my case, you know, I have a disease that is now incurable and if this science had been done, perhaps things would be different, but they absolutely can be for the future with your help.
Thank you.
Zoe Carroll
Newbury, Berkshire
I was diagnosed with Invasive Lobular Breast Cancer in July 2022 aged 49. I was a busy Mum with a love of sports, socialising and an interesting career. When I heard the words, it’s ‘cancer’, I broke down in complete shock. I was so frightened about how I was going to tell my family, especially my children; and my overarching feeling was ‘how long do I have?’ I felt far too young to be dealing with this!
6 months prior, I had an operation on my right breast for pre-cancerous cells as well as a clear mammogram on the left breast. It completely missed the 4cm ILC tumour. Even being under consultant care, lobular was not identified, which is why we need a moonshot approach that uncovers the optimal research, screening & treatment for the 15% of BC patients with lobular.
I had a mastectomy and am still under consultant care with an annual check-up. However, this will end in 2 years, because the guidelines are based on Breast Cancer in totality, skewed by Ductal BC, meaning I am signed off after 5 years. As a Lobular BC patient, I know recurrence is still high risk for 10 years, leaving me at an unfair advantage and exposed in terms of recurrence risk.
I urge the government to spend the £20M on lobular specific research, to help improve outcomes for myself and all the other people unfairly disadvantaged by a lobular diagnosis.
Emma Hunwick
Bexleyheath, Kent
My breast cancer diagnosis on 26 Aug 2023 was a shock. A previously clear mammogram and only the tiniest change in my breast, I quickly found out that Invasive Lobular Breast Cancer (ILC) had been hiding for some time and was about to drastically change my life. I was told initially that scans indicated my cancer had been caught early. My pathology report following mastectomy showed it was far more advanced – pleomorphic, more aggressive and with extensive lymph node involvement. My oncologist advised he would ‘throw every available treatment at it’ including five months of chemotherapy, radiotherapy and years of hormone blocking and cancer protein blocking medications to follow. My life as a full-time working mum of one was put on hold. The treatments were brutal and 18 months later I’m back at work. But I’m a different person, with ongoing pain, long term medical conditions from treatment side effects and the knowledge that despite the treatments I’ve endured, they weren’t specific to my cancer. Statistically, I’m highly likely to get a recurrence but the current scanning protocols are unlikely to spot this. I know that my long-term prognosis is very poor and I’m unlikely to reach retirement age. LMSP is so important as we, the 22 who stood outside Parliament in silent solidarity for the 22 who’ll be diagnosed every day, know that without significant investment into research for ILC, this Government is failing so many women. I’d swap the £240 per person investment for the £100k+ of treatment I’ve had in a heartbeat – it’s good economics and it’s the right, human thing to do.
Fiona Andrews
Alsager, Cheshire.
I was diagnosed with invasive lobular breast cancer in September 2022. Two months before my diagnosis I'd had my regular screening mammogram. The results were reported as normal with no abnormalities, but in fact, I had a 46mm tumour in my right breast.
I had two operations to remove the lobular tumour, as the first operation didn't have a clear margin. The second was a close margin - almost touching my skin - so i had radiotherapy to kill any remaining cancer cells.
The significance of having a 'close margin' is still unknown to me. I know that lobular cancer cells are sneaky, so i'm always hyper vigilant. I pay privately for a yearly MRI to check for any local recurrence, as my mammogram didn't show the cancer. I don't think I should have to pay for this, but at the moment this is my only option. I know that If my cancer does return I want a specific treatment available which has been designed for lobular breast cancer and not ductal. This would give me the best chance of survival and also the thousands of other women with this disease.
Tanya Hutson
Guildford, Surrey
I was diagnosed with lobular breast cancer in April 2022. I had a double mastectomy followed by 6 rounds of chemotherapy. I first had a lumpectomy on my left side, my surgeon was happy that she had got everything from that side and pushed for me to have a single mastectomy. I wasn’t happy with this and insisted on having a double mastectomy. Thankfully I did as once they examined my breast tissue they found another tumour that hadn’t been picked up by the mammogram or ultrasound, this is typical of lobular breast cancer and why research into this is so important.
Afterwards my breast surgeon told me that had been the best decision of my life, if I hadn’t insisted on having the double mastectomy this could have been a very different statement. So please, please, please help us get this funding across the line.
Fiona Hale
Camden
Aged 46, in December 2014, I was diagnosed with invasive lobular cancer.
I was already having annual breast cancer screening because of family history. But routine mammograms missed my cancer.
In April 2014 I had a clear mammogram.
In October 2014, I noticed part of my breast seemed to have caved in. My GP referred me on the cancer pathway. Ultrasound and a biopsy showed it was indeed cancer, estimated to be about 240mm.
On December 9, 2014, I had a mastectomy. The pathology report showed there was in fact 82mm of lobular cancer – not a lump, more like a chain.
From January – October 2015 I had chemotherapy and radiotherapy, then started a 10 year course of tamoxifen. None of the treatments were specific to lobular cancer.
During chemo I was hospitalised twice, and was extremely ill with sepsis. It was a tough period - I was a freelance worker who couldn’t work, my partner was amazing but travelled a lot for work, and our daughter was 8.
When I asked how my remaining breast would be monitored, unbelievably the answer was mammogram. I had a second ‘elective’ mastectomy in April 2016. I could not run the risk of cancer being missed again on mammogram – though of course it would not prevent metastasis to other parts of the body. I was never offered MRI.
It seems scandalous to me that since then there has not been more investment in better understanding of lobular breast cancer, when 22 women a day are diagnosed in this country alone.
Dr. Lorraine Connolly
London
I am a Stage 4 lobular breast cancer patient- diagnosed in 2021. In 2015, I visited my GP with concerns about a strange tugging sensation in my breast. No lumps were palpable. In 2015 and 2018, I had 2 clear mammograms within the NHS breast screening service. In 2021 I felt a small lump in my breast, some skin tugging and a change to skin texture. I have completed a mastectomy, axillary node clearance (5 out of 11 lymph nodes were positive), chemotherapy, radiotherapy, zometa infusions, 2 years of abemaciclib and ongoing letrozole for 10 years. After some recent MRI scans, my oncology team has revised my CT scans, and now determine I have bone metastasis.
I have made every effort to find out more about Lobular Breast cancer and am stunned to find out that it is a distinct and separate biological breast cancer, has never been researched independently, from other breast cancers and has therefore never had a targeted treatment. What also became obvious was that I had advanced breast cancer that had evaded detection on 2 previous mammograms (over 6 years) and that the specialists who were treating me didn't have knowledge or medicines to treat me effectively. In addition, Lobular Breast cancer can 'hide' behind "dense breast tissue" and so evade mammogram detection.
The government needs to urgently fund cancer research projects, such as the Moon Shot Project, so that it can map the biology of Lobular breast cancer and conduct clinical trial drugs to treat it. My story is not unique, many lobular breast cancer patients are diagnosed at a late stage, and therefore not curable. How unfair is that?
Joan Carmichael
Poole, Dorset
Hello, my name is Joan. I am originally from Glasgow, Scotland and have lived in Poole, Dorset for approximately 30 years. I am married with three children, my youngest is 10 years old. In September 2024, I was diagnosed with lobular breast cancer some six months short of my 50th birthday.
I had been experiencing some pain in my breast and in the following months noticed some changes to my nipple area. However, I had no lump, so although I went to my GP, I wasn’t that worried! I thought you always found a lump with breast cancer!
Following a Mammogram, ultrasound, biopsy and MRI I had a mastectomy. Telling my children was the worst thing I have ever had to do in my life. Due to my risk of reoccurrence, I have needed chemotherapy and am now on hormone inhibitors.
My 50th birthday was memorable for all the wrong reasons in that it was one of the worst days of my chemotherapy cycle!
To learn that lobular behaves differently and can return 10+ years is frightening. That basic research is yet to begin into the second most common breast cancer is shocking. Some of my cancer did not show up on my mammogram or ultrasound, this is common with lobular. The NHS has only offered a mammogram as per NICE guidelines and declined any other scans. I am scared for the future, please support this research project to improve our understanding and identify the best treatment options.
Camilla Rex
London
My name is Camilla Rex. I live in Steve Reed’s constituency in South London and I received my diagnosis 4 weeks ago on 4th June 2025. Since then 616 more women have been diagnosed with lobular breast cancer.
I was not aware I had breast cancer despite regularly self-checks, I had no clear symptoms. It was caught in my NHS 50 breast screening, thanks to the expertise of the radiologist who picked up a small growth of lobular cancer on the mammogram. In reality, it was more extensive, multi focal diagnosis, the full extent only visible after an MRI. This tendency for invasive lobular breast cancer to go undetected on mammogram was the first difference to ductal breast cancer that I became aware of.
Days of uncertainty and anxiety followed, but as as a journalist I set to work to research invasive lobular breast cancer. The anxiety of my diagnosis was exacerbated as I realised this type of breast cancer (despite being identified in the 1940's) has had very little to no research in the UK to identify the biology of the disease or develop the most beneficial treatment protocols. Women are dying as a result.
The road to improving outcomes for women like us, and the women who will follow us, is research into this disease. It’s why I support the Lobular Moon Shot Project and stood as one of the 22 women affected at the vigil. And why I urge you to make this a priority in your women’s health strategy and fund this vital research.
