Wendy’s Thymoma Story

My name is Wendy. I am 65 years of age and worked in OT for 29 years.

I have been married for 30 years.

After my Covid vaccination in March 2021 I had a severe reaction resulting in a fever, copious spots all over my chest and a cough. It was not Covid.

I knew something was seriously wrong and asked for a different Doctor in my General Practice. She sent me straightaway to a respiratory Consultant, Mr. Mohammed at Herford North Hospital, who after taking blood tests and surveys then sent me immediately to have a CT scan. A subsequent appointment with the Respiratory Consultant revealed that 2 x ex-rays done in 2016 and another in 2019 showed that an ’Abnormal mass ‘of 2 and a half inches long by 2 x inches wide, had been growing in my right lung. Though the ex-ray report in 2019 stated that I had a ‘Vague shadow on my right lung, which could be a skin fold’, the consultant stated that ‘only with hindsight could this be detected’. It was therefore never investigated.

I have always been very active. Aerobics, Exercise to Music Teacher qualified and used in my job at the hospital. My role was very active and stressful, but I loved it. In 2016 I started running, but I noticed that my performance was getting worse. Also, some chest pains and breathlessness started occurring.

In April, May and June of 2021, multiple blood tests, CT, PET, and MRI scans happened. My Abnormal Mass was called all or sorts of names by medics. Lesions, growths and finally tumour, though Cancer was never mentioned.

I currently in April 2022, have unexplained symptoms of fainting, breathlessness, tightness in the chest and often do not wear a bra. Since February 2022 I have been affected by an upset tummy, headaches, and slight loss of eyesight.

Treatment came in the form of a Sternotomy and Thymectomy on August 26^th, 2021, at The Royal Papworth Hospital Cambridge. My surgeon was Mr. Giuseppe Aresu- Italian. Another Surgeon, Mr. Mustapha met me at pre, and post op clinics and he was present in the operating theatre. I was under anaesthetic from 11am- 7pm.I made a good recovery, which was expected by the medics and was walking around the ward by the 3^rd day. I was discharged from Papworth on the 6^th day with Ibuprofen and paracetamol for pain management. 1 x week later the pain took on another level and I was admitted to an Assessment ward where I coughed up blood. This was determined to be residue from the operation, and I was transferred to the respiratory ward for observations and tests. During that week I received 2 x ultrasounds on my chest which showed too small an amount of fluid on the right lung to warrant a drain. My stomach was diagnosed as fine after a Gastroscopy. I received regular strong anti-biotics via a drip plus other pain medication.

Four weeks of week daily Radiotherapy followed in November finishing on 3^rd Dec 2021 at Mount Vernon Cancer Unit, near Watford. I began to think I may have cancer. It had latterly been explained to me at Papworth that my tumour was very low-grade cancer, 400 diagnosed a year compared to 44,000 breast cancer and often not classified as cancer. Auto Immune disease was mentioned.

I was suffering from joint and muscle pain before my investigations started and they have inflamed now.

I did not know that I was to have my Thymus gland out before the operation. The Biopsy during the operation showed ‘Microscopic disease at the margins and in the cross section of the tumour’, hence the course of radiotherapy which was ‘expected to clear it up.’ The 2^nd week of the Radiotherapy I experienced pain and was prescribed Co-dydramol by the Acute Oncology service for pain, which I took for a few days.

I did ask for a 2^nd opinion for my operation from Mr. Coonar, surgeon, as a Colleague had had a large lump the size of an orange, resected from her Anterior Mediastinum (Thoracic Cavity), just like mine, by Keyhole surgery. However, though Mr. Aresu, my surgeon was gifted in Keyhole surgery, he had no choice and had to change to performing a Sternotomy as my tumour was ‘firmly adhered to my right lung, pericardium, (Membrane of the heart) and wrapped around my Phrenic nerve. My Superior Vena Cava was their biggest risk.

I hope to give and receive support to the Thymic UK group.

Advice to someone newly diagnosed. Get treatment ASAP. Respect HCP, realise that they are stressed too. We are on a list of 1,000’s of patients they need to see and treat. It’s a 2-way relationship. They have holidays too! Laughter is the best medicine!

My wishes for the future are to return to as much Fitness as possible. I attended weekly Aerobics sessions for over 20 years before the operation.

Running? Because I started running in 2016 the same year the tumour was revealed to have started growing in the ex-ray. To continue playing guitar and singing in the band and choir at church. Gardening for my own garden plus a Homeless project in our town, Art and Cookery hobbies. Able to keep house and go on holiday. To fly in a plane as now my sternum is bound by titanium wire.

I am now still in pain. Dr. Dubash, Consultant Radiologist stated on a restricted zoom call, ’Bad news I am afraid’. ‘Sadly, the cancer has spread, you have nodules in your right lung and lesions in your liver’. Your case was discussed at our MDT which is made up of surgeons, oncologists, and HP’s’. This was the diagnosis following a CT scan at Mount Vernon, Paul Strickland centre on 28^th Feb 2022.

• I have been referred to a specialist in Thymomas at Addenbrookes hospital Cambridge.
• I have been referred by my GP to have an ultrasound on my abdomen and liver.
• Also referred by my GP to have Dermatology treatment on the lump on my skull under my scalp. It will be frozen off. I have already had one appointment with him.
• Also referred to a Rheumatologist, Senior Consultant, Dr. Brown. I have already seen him, had blood tests and an ex-ray. Due to have an ultrasound on my hands for him.

Looking back, If I had not had the Covid Vaccination my Thymoma and chest would not have become inflamed and the fever, spots and cough so noted. So thanks to the Covid jab!