Secondary Sisters: our experience with secondary breast cancer
Secondary Sisters is dedicated to changing perceptions around living with incurable breast cancer. Founded by Laura Middleton-Hughes and Nicky Newman, two friends who were both diagnosed with stage four cancer in their early thirties, they created their online community in the hope that it would help others facing similar diagnoses. More recently, the duo have been joined by Gemma Duff. Here Gemma and Laura talk about their experiences and the changes they feel need to happen to support those with metastatic breast cancer better.
Do you know the signs and symptoms of breast cancer?
When were you first diagnosed with cancer and what were your symptoms?
L – I was diagnosed with primary breast cancer in February 2014 when I was 25. I had found a pea sized lump in my left breast whilst in the shower.
G – I was diagnosed with secondary breast cancer (I did not have a primary diagnosis) in September 2019. I was 35 with two children aged three and five). I had noticed after I finished breastfeeding both of my children that I had an inverted nipple, thickening to the outside of the breast near where the nipple was inverted (rather than a lump), a painful breast and dull ache in armpit (ignore the myth that cancerous lumps do not hurt!). I had a slight dimple in the side of the breast and the breast seemed swollen in comparison (it had always been my bigger breast but it started spilling out of my bra).
When were you diagnosed with secondary cancer and what were your symptoms?
L – I was diagnosed with secondary breast cancer in October 2016 when I was 28. I had been having pain in my right shoulder, which I thought was a gym injury. This went on for around six months and it was when they scanned my shoulder to see what was going on that it was breast cancer that had spread to my humorous spine and pelvis.
G – My secondary diagnosis was de novo, which means I was secondary at the time of diagnosis. When they found my breast cancer, because I had some lymph nodes that looked sinister, I had a bone scan and a CT scan for peace of mind more than anything.
I didn’t have any of the signs and symptoms of secondary breast cancer, save for perhaps the dull ache in my armpit suggesting lymph node involvement. These scans showed that my breast cancer had already spread to my bones (hips, spine and ribs).
What treatment have you had?
L – After my primary breast cancer diagnosis I had chemotherapy, surgery/mastectomy, radiotherapy, hormone treatment and Herceptin. At my secondary diagnosis I had surgery to my shoulder, a chemotherapy drug called Docetaxel, dual her2 therapy, zometa bone strengthener and anastrozole and zolodex hormone therapy.
G – I had chemotherapy (Docetaxel), surgery/mastectomy, radiotherapy, Herceptin and Pertuzamab (dual her2 therapy), Denosumab bone strengthener, Tamoxifen and Prostap hormone therapy, which puts me into medical menopause.
Both of us have treatment by IV every three weeks in hospital. We then have daily and monthly hormone treatment to keep us in a medical menopause and we have bone strengthener every six weeks to try and prevent the bone mets spreading, but also to strengthen our bones due to the lack of oestrogen in being in medically induced menopause at such a young age.
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Have you felt that there have been barriers to treatment and if so, what?
L – I haven’t personally experienced barriers to treatment yet as I am still on my first line treatment.
G – I recently moved from private health care to NHS care and I haven’t experienced barriers as such but I have had to fight to have my drugs administered in the same way. The drugs that we both have every three weeks are given intravenously with the purpose of fighting our cancer cells or at the very least, putting them to sleep so that they do not progress. There is a newer injection, which contains the same drugs but is injected into the thigh using a prepared injection. Some hospitals now exclusively give the injection and so I have recently had to fight (as has my oncologist) for the hospital to agree to continue with the IV infusion.
Whilst neither of us have personally experienced barriers to treatment we do know that many people within the secondary community have experienced this. We are aware of disparities between NHS Trusts and different parts of the UK, meaning that some people do not have access to certain drugs. Some secondary breast cancer patients are refused surgery because they are told there is “no point” “the horse has already bolted”!
During Covid, trials were put on hold, meaning that secondary breast cancer patients died as they had been relying on these drugs to keep them here. Some patients have more barriers than others depending on what kind of breast cancer they have (there are many types), where they live and how proactive their team is. Scans to monitor treatment response are also inconsistent across the UK.
Do you think secondary breast cancer is underrepresented/misunderstood and how?
When Laura was diagnosed in 2016 secondary breast cancer was hardly spoken about and that was the reason why Laura and Nicky founded Secondary Sisters to open up the conversation, increase awareness and bring together the secondary cancer community.
When Gemma was diagnosed she had no idea what secondary breast cancer was and believed, like everyone else, that breast cancer meant primary breast cancer, which is reported to be highly treatable with great cure rates. Secondary breast cancer is a reality for anyone not yet diagnosed or that has had a primary diagnosis. 5% of people diagnosed are already secondary and therefore incurable and so it needs to be talked about more so that people can be aware of what to look out for but to also understand the disease and what it can mean for family or friends with a secondary diagnosis.
31 people die every day of secondary breast cancer but most people have never heard about it or do not understand what it is. Often we hear of people that have passed away from breast cancer but the reality is that they have passed away from secondary breast cancer. It is not reported or represented correctly because it is not understood. People still do not understand what we mean by “secondary breast cancer’. We need to refer to it being an incurable or terminal cancer.
Part of the problem is also that no one has collated the data on how many people are living with secondary breast cancer, what treatments we are on, or what our quality of life is like. The information is not collated and so it cannot be accurately represented. Campaigns seek funding for research and a cure and so often do not focus on secondary breast cancer.
SBC is often represented as a disease in women over 50 but men and women are diagnosed much younger than this. People under 40 with SBC are heavily underrepresented.
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What would you like people to know about secondary breast cancer?
L – A secondary diagnosis is life changing but it is less scary when you understand it a bit more. Meeting people in a similar situation can really help with the impact it has on your life and it is possible to live well and for a long time with secondary breast cancer. I would like there to be more awareness around SBC with a better education on the signs and symptoms to look out for.
That we can live well by finding the right support and help. Be proactive in finding a support network to help you thrive. However, in order to thrive and live we need further research into new drugs to help us live well for longer.
G – That it exists. All primary breast cancer patients should be aware of the potential risk of a secondary diagnosis. Everyone should be educated on breast cancer, which includes the signs and symptoms of secondary breast cancer because sometimes it is the secondary cancer that actually highlights the existence of breast cancer in the first place.
That we can live well and for a long time with this disease, but the earlier the diagnosis the better and so treatment options, diagnostics and monitoring are so important in helping us to have more time.
And that young people get breast cancer, and secondary breast cancer. Laura was in her twenties, I was in my thirties and we have a community of ladies under forty all with secondary incurable cancer. More education and awareness is needed to diagnose young people sooner to reduce these numbers.
What would you like to change around the treatment of secondary breast cancer?
L – For everyone to be able to access all treatments rather than it being dependent on where they live. For everyone diagnosed with primary breast cancer to be able to access information around SBC so they are aware of the signs and symptoms to look out for. For all medical professionals, radiographers, nurses, pharmacists etc, to know what secondary cancer is so they can use the right terminology and be aware of sensitivities around living with cancer.
G – For all secondary breast cancer patients to be given full body scans. We know that when breast cancer cells move they like to spread to the bones, lungs, liver and brain, yet most people are offered only a CT of the chest area. For this reason lots of women have gone too soon because lesions in their brains have not been found until it is too late. I would also like all secondary breast care patients to have access to Secondary Breast Cancer Clinical Nurse Specialists who are equipped to help direct us to emotional, mental and financial support when living with cancer.
What is your advice for someone who has just had a diagnosis of secondary breast cancer?
L – Don’t Google and my motto is don’t worry about things you can't change. Don’t worry about a future you cannot predict; focus on the present. Also don’t focus on other people’s stories or treatment lines. We are all individuals and no one’s story will be the same. We are not statistics.
G – Take one day at a time and if necessary, one step at a time. One foot in front of the other. You are not a statistic. No one can tell you how you will respond to your treatment so do not Google or reference statistics, which are out of date and can’t keep up with the rate at which new treatments are developed. Statistics do not reflect you and your own individual biology. Find your support network and tribe as the cancer community, particularly online, has been a huge support to me since my diagnosis.
Finding Secondary Sisters and other people with a similar diagnosis offers hope and inspiration that we need to hold on to in the early days of a secondary diagnosis.
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What is your advice for someone who has previously had a primary diagnosis of breast cancer?
L – Don’t focus on what might happen. Plenty of people will never have to deal with a secondary diagnosis but be aware of the signs and symptoms of Secondary Breast Cancer, and push for scans and checks if you feel necessary. Live your life.
G – I don’t think you will ever return to what normal was like before a cancer diagnosis. Your life and your perspective has changed. But if you have caught the cancer early so that it can be removed then please live your life and find joy in the mundane every day. Be aware of the signs and symptoms to look out for and if you have concerns then push for scans to give you peace of mind but try not to let that be the focus on your day. Living in fear is not living at all and being able to live is truly a blessing we should be grateful for every day.
October is Breast Cancer Awareness Month. What does this month mean to you and do you feel there is an in-balance in conversation with regards to primary vs secondary Breast Cancer?
BCAM is an amazing month for raising awareness and highlighting the signs and symptoms of breast cancer. However, SBC, the only breast cancer that kills, gets only one day out of the entire month – 13th October. People do not die from primary breast cancer, they die when the breast cancer cells metastasize to other parts of the body. More education on and awareness of SBC is needed, the signs and symptoms and what is needed to help treat this disease so that more people do not need to die.
There needs to be more emphasis on SBC throughout the entire month. When talking about breast cancer we should be highlighting both primary and secondary breast cancer equally. It would be good if all breast cancer campaigns were informed so that SBC is discussed within the same campaigns and used by people within the SBC community as well as primary breast cancer patients. Campaigns also often want to use people that look sick. Whereas a lot of people living with cancer look well. We don’t all lose our hair and hormone treatment can mean people put on weight rather than lose it. What secondary breast cancer looks like has changed but the public perception has not, because the disease is not given the attention it deserves. The perception of living with cancer needs to change as the image that has been used for many years is out of date but this will only change with increased education and awareness of SBC.
We know that there are many people living with SBC and living well because of life saving drugs but eventually these drugs stop working and more research is needed to help more secondary breast cancer patients live for longer. Unfortunately, we also know of people that have been let down because SBC is disproportionately under funded given the number of people dying from this disease every day. SBC patients do not have access to all potential treatments on the NHS, are told some treatment options “aren’t worth it”, do not get full body scans and do not get support for their mental health after a diagnosis.
SBC needs more attention. Just because we are not curable does not mean that we can’t live for longer with this disease if we are given the appropriate standard of care and attention we deserve. Campaigns focus on funding research to find a cure but with more people being diagnosed with secondary cancer every day is it not better to spend money on funding existing drugs that have been proven to work and finding new treatments so that people with SBC can have access to treatment and live well for longer.
Do you know the signs of secondary breast cancer?
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