Kirstin Spencer

Hi, my name is Kirstin and I live near Cheltenham with my husband, daughter and cat.

I lost two of my best school friends to cancer, my roommate died of metastatic breast cancer when she was only 30. After visiting her parents years later, I thought I would get myself checked out as I had always had difficult to check dense breasts, which I understood heightened the risk of cancer. I was shocked to find that I had multifocal lobular breast cancer in both breasts. Lobular breast cancer can often grow in several places at once in the breast (multi-focal) and can form in sheets hiding in dense breast tissue rather than making a lump. As this can make it difficult see the extent of disease I was advised to have a double mastectomy. Very quickly I had a double mastectomy and immediate DIEP reconstruction which went extremely well and I recovered quickly from surgery with full mobility. I was warned that with my type of lobular breast cancer and with close margins, despite being stage 2 with no metastasis, the lobular cancer could recur in my mastectomy scars or near the operation site. I was told to not worry as if it returned locally and caught early, it could still be managed as a chronic disease. However to catch it early depended on vigilant follow up which should take place every 6 months for the next 5 years. This would include an ultrasound twice a year and a mammography in a year (a mammography is used after autologous breast reconstruction to look at and assess any abnormalities, or if you have a high chance of local recurrence, or if it is difficult to assess by palpation – as lobular cancer often is). Then it will be decided whether follow up mammographies or MRI’s are indicated.

I then returned to the U.K. from Zurich and was unlucky. By the end of 2018 my scar had thickened, an ever growing hard area developed underneath it and I had unusually red and raised scars accompanied by a faint but persistent rash. Despite being armed with the advice of the Doctors who had actually treated my initial disease, my symptoms were dismissed as not serious, were not further investigated and therefore my disease was not followed up with any scans or blood tests or in any meaningful way for almost three years.

I moved from the London area to Gloucestershire in 2020 and in January 2021, refusing to give up trying to get help (the rash and growth had now taken over a quarter of my breast), my GP helped me get an appointment at the local breast centre in Cheltenham. Here they performed an ultrasound scan which led immediately to a punch biopsy of my breast scar and skin area. They found very extensive lobular cancer tumours over my reconstructed breast which you could very clearly see had spread into the subcutaneous skin. This led to further investigative scans which confirmed the cancer was throughout the skin, there was lymph node involvement, perineurial invasion and further metastasis throughout my skeleton, so I was now left with extensive incurable disease.

Since my metastatic diagnosis and because of my strong ER+ histology, depriving my body of oestrogen has been the first line of defence. I have been put into the menopause with Zoladex. My diseased bones are being helped by Denosumab, I take an Aromatase Inhibitor called Letrozole and targeted therapy – a cdk 4/6 inhibitor called Palbociclib. It is relatively early days of treatment for me. I am so very grateful to my oncologist, Dr Elyan for both finding and helping me along an excellent treatment pathway. No doubt we all owe a great debt to all the people who researched and worked to get these drugs available for patients such as myself. The success of such work is certainly enabling me to be around for my 8 year old daughter for as long as possible and I very much hope more medical feats may yet come to pass.

Why I wanted to be involved with Lobular Breast Cancer UK (LBCUK):

Lobular breast cancer can be a very frightening diagnosis and the anti-hormone drugs that you take to manage it can be very challenging. I think it is important for patients to know there is more than one type of anti-hormone drug and not to give up taking it, but clearly note side effects and ask for support with them with the knowledge that there would be an option to change them.

Breast cancer patients don’t always have obvious physical impediments so many people wouldn’t know we were ill or understand what warriors we have to be both mentally and physically on a day to day basis. This can lead to terrible feelings of isolation and helplessness, even when surrounded by those who we love and who love us.  LBCUK has definitely made a positive impact on my life and living well with a lobular breast cancer diagnosis.  I feel very lucky to have a group of fabulous women in similar circumstances around me to talk to through both the tough and the happy times we share.  Lobular cancer has been under researched as it accounts for around 15% of all breast cancers.  We are all hoping for further research and development of medication that helps control or block lobular cancer breast disease with tolerable side effects.

LBCUK understands and raises awareness of the lobular breast cancer plight – which can often be found hiding in plain sight.

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Lobular Breast Cancer UK is a registered charity in England and Wales No. 1191402 Registered office: Flat 3 Beech House, 77 Edge Lane, Stretford, Greater Manchester M32 8PA