My SBC Journey: Keely

28th June 2020 SBC & Me

When were you diagnosed with SBC?

I was diagnosed with Secondary Breast Cancer in May 2019

How were you diagnosed with SBC?

I noticed that I was feeling very run down over the space of a few months, like I had had flu and was recovering but without actually having the flu. I later found some hard areas that had developed on my chest when I was doing a regular self check. I wasn't sure if it was as simple as an angry muscle but I went to my GP to get it checked after a few weeks as it hadn't gone away. Due to having Primary Breast Cancer in 2016 I was referred back to Breast Clinic for a thorough check up. Ultrasound examinations actually found multiple areas of concern. Biopsies were taken which confirmed a week later that it was cancer again.

What has been your treatment Journey?

After the diagnosis of SBC they did a CT scan to check elsewhere in my body the cancer may have spread to. It was a localised metastases, the soft tissue and muscles around my reconstructed breast and also the intercostal muscles in the ribs on my back. I was changed from Tamoxifen and Zoladex to Exemestane and Zoladex and also given Palbociclib. Follow up scans had shown some reduction or otherwise stable tumours and I was settled on the treatment plan for around 8 months. Following this, I noticed some swelling above my sternum and mentioned to my oncologist. She organised a repeat CT Scan and this showed that the cancer had spread and I now had tumours in my manubrium.

My treatment options at the time were to move on from targeted and hormone treatment and start oral chemotherapy or the research team at my hospital were able to offer me a place on a clinical trial for a new type of hormone treatment in conjunction with Palbociclib. After discussion with my oncologist and the research team oncologist I decided to join the trial as the option of starting chemotherapy should it not work would still be there after but the same could not be said for the trial. I was fortunate enough to be one of the last patients to be accepted onto a clinical trial at my hospital prior to the Covid-19 restrictions. The trial included a barrage of pre-trial assessments and tests so I was a frequent visitor to the hospital throughout the lockdown measures. Unfortunately after 8 weeks on the trial my follow up CT Scan showed that many of the tumours in my chest area had increased along with a new lesion appearing in my liver. An MRI a week later confirmed that this is also cancerous and that there are two smaller areas that are too small to be definitive so these are being monitored.

Due to the latest spread I have recently started oral chemotherapy, Capecitebine. I am hopeful that this is the treatment for me, if not then we will move on to the next one.

What would have helped make your journey so far easier?

For me being able to access psychological support sooner without such long waiting lists would be a godsend. My local Maggies Centre and the breast clinic at my hospital both have a waiting list in excess of 4 months. In terms of local support for SBC there isn't any that I have found. My local Breast Cancer Now Secondary Cancer group is over an hours drive at the other side of the county so much of what they discuss is focused on what is local to them, such as the hospitals, having speakers from the local hospice etc, none of which is applicable to me. Also the lack of support for younger people with SBC, our needs are slightly different to that of older women and having support in person even just a coffee and a chat would be great. There is also a lack of support available to children with parents going through cancer. There are charities that arrange days out or special gifts which is great but I think my daughter would like to meet other kids who have a parent that is going through chemo or already done it. It would help her a lot I think.