patients Stories

Penny's Story

About 12 years ago my daughter Penny first noticed a very small lump in her cheek. Her Dentist was unconcerned but referred her to a Maxillofacial surgeon. He was also unconcerned but scheduled her for a day procedure to have it removed. The surgery proved to be very traumatic as the tumour haemorrhaged into Penny’s cheek and the surgeon had to urgently remove the stitches to release the pressure.

It was a terrible time for the whole family, not least Penny, to see her suffer so much after this hideous surgery and the dreadful distortion of her face. There was also a fear that it would affect her ability to smile, and she has such a lovely smile. Happily it resolved, she can smile and her face eventually went back to as before

After this traumatic experience we waited several weeks for the pathology results which confirmed it was EHE. Her surgeon monitored her at Queen Elizabeth hospital in Birmingham 3 monthly, and then 6 monthly for the next 5 years. She did have local surgery to her face 2 years later. She never had a body scan during this time and was discharged after 5 years. I think maybe we may have nearly forgotten about it. Penny had 3 children following this so life was pretty hectic.

Four years ago (and about 8 years after her first surgery) Penny had to move house as her marriage had broken down and she became very ill with pneumonia. Chest x-rays revealed shadowing consistent with pneumonia but, as the shadowing was still there 6 weeks later, a CT scan was performed.

There was great concern about the findings on CT. Her GP said “she had never seen anything like it”! She was referred to a Chest Physician and the feeling was that the multiple lung nodules could be TB or sarcoidosis. All tests were negative. It was then decided she should have a VATs procedure and biopsy. From this it was confirmed to be EHE. It took six months from her first X-ray to get to this diagnosis even given her past medical history.

It came as such a shock to us all. Penny has coped amazingly especially as she is a single Mum with three young children (they were 6, 4 and 2 at the time). It has been so hard for her as she suffers almost constant pain in her shoulder and back which doctors seem to think is unconnected to her lung and pleural nodules!

She is under the care of Professor Judson at the Royal Marsden and has six monthly appointments including CT body, head and neck scans. She is on a ‘watch and wait’ programme. Her only other treatment is Celecoxib, an anti-inflammatory anti-angiogenic drug.

Penny is a midwife and loves her job. She lives her life and is a lovely Mum to 3 adorable children. Despite the pain, she rarely mentions EHE and we all try and give it a back seat. However I am so hopeful of a breakthrough, perhaps that’s how I cope, and I am so grateful to the EHE Facebook page and its support.

Helen, Penny’s Mum.