My SBC Journey: Susan

5 years prior I suddenly became seriously unwell and it turned out I had “unexplained anaemia” and had an emergency dash to hospital and 5 units of blood transfused. This pattern repeated with me having 3 to 4 units of blood transfused every 4 to 6 weeks. After a series of tests I was told I must be delighted and relieved to know that nothing was wrong with me – except I was still having to have blood transfusions ever 4 to 6 weeks.

Then at end of 2017 I had chronic pain in my shoulders, back and neck and by May 2018 also an inverted nipple. My doctor referred me to a physio, however I begged and pleaded for x-ray and MRI scan. Both physio and doctor insisted there was no need for an MRI. We bypassed the GP and went straight down to the Emergency Hospital where I was triaged through as an emergency to have scans and x rays and a range of diagnostics and because I had 11 fractured vertebrae and spinal cord compression. I was initially told that the suspicion was that I either had multiple myeloma or a primary breast cancer but there were no significant signs of anything in the breast. I was sent to the spinal trauma unit at the Royal Victoria Infirmary in Newcastle and had extensive spinal surgery and the consultant there told me that tests for multiple myeloma were negative and from what he’d seen he believed it was an occult primary breast cancer. Histology of excised tumour from my spine confirmed that diagnosis.

The spinal surgery fixated my spine with a massive titanium structure running through my neck and right down my back. There's 2 main areas of support engineering. A little bit at C2 to C4 then a great huge load of scaffolding, screws, plates etc at T2 to T9. I spent a couple of days in a high dependency unit and then a month in total in the spinal trauma unit. Post surgery the pain was immense, I still had no feeling in my left leg and numbness across my midriff and arms. When I was discharged I was in contact with MacMillan nursing and because the relationship had broken down with my GP. The MacMillan consultant and nurse were brilliant in helping me with a considerably improved pain management regime and to such an extent I was able to get on top of it. I then was seen by a breast cancer oncology consultant at the Freeman (Northern Cancer Centre) and had further scans including a bone scan and told that it was most definitely a primary breast cancer which unusually was an occult one: oestrogen positive (or E+), HER2 negative (human epidermal growth factor receptor 2).

In addition to my spine I also had metastastic cells in my skull, hip and ribs. I was told I’d be put on palbociclib and Leterozole and with 4 weekly denosumab via injection. After a couple of months at home to allow healing where I had surgery I went for radiotherapy and had treatment on 3 areas of my spine. Initially it was planned to do this over 6 sessions but because it was so difficult (painful) sitting in the car for the 120 miles round trip to hospital a decision was taken to give me a very high dose blast in one treatment. I was sick as I left the hospital and was very shabby for 3 months. I’ve never known tiredness like it and had no appetite at all.

My neuro spinal consultant and oncology consultant and the cancer nursing team at the Freeman have restored my trust and I’m now in a routine of going every 4 weeks for blood counts and 4 weeks supply of palbociclib and denosumab. My blood counts are all good now I’m properly diagnosed and treated. My consultant has me on a regime of having a minimum of 6 monthly bone and CT scans and already they’re showing positive signs. So far there’s no further metastises and there’s sign of lessoning in the skull and the bone in my spine is also improved. No signs of any jumping to soft tissue or organs. I’ll never be as I was because of the damage to my spine and the titanium fixing but I now know where my left leg is and can walk and my balance is hugely improved.

It would have been absolutely fantastic to have had a GP (and Consultant) in the 5 years prior to diagnosis who had a clue and were intellectually curious. Who listened and could join the dots. Who didn’t think you could just keep doing the same and expect to get a different result. Who understood that there was such a thing as occult breast cancer whereby it can go secondary even when it’s just at cellular level and undetectable via routine mammogram. When discharged from hospital I had to wait for such as wheelchair and other aids for over 6 weeks. I had to purchase my own lift to get in and out of the bath and a mobility scooter. I really feel for women who do not have available income so have to do without things to basically function.

IF I could only have my bloods taken at my local hospital within Northumbria Hospital trust that would save extensive pain (and expense) of travelling 120 miles every 4 weeks. It seems though that one health authority will not accept blood counts from another for any treatments or transfusions.