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Early July 2019 I had a persistent tickly cough. My face was bloated & I had difficulty breathing. On reflection, I’d had issues for years. I thought I was allergic to a medication I
My GP sent me for an Xray. The same afternoon my GP called to say I needed a CT scan and that I had been put on “the lung pathway” which I had the following week. Within 24 hours I was called to the hospital, had a full physical examination. I was told I had mass in my left anterior mediastinum. I took a photo of the scan for
reference & was told it was either a germ cell tumour, lymphoma or thymoma.
I had a PET scan, a heart scan, and lung function test which had been delayed because of recent cataract surgery. Within 3 weeks of the initial Xray I met Mr Francesco Sellitri at Derriford Hospital, Plymouth. He explained that he didn’t think the mass was cancerous but that it had to be removed. Both a sternotomy and thoracotomy were proposed.
Surgery was scheduled for September 2019. That date came and went but during this time I was reading every article on the surgical procedures that I could find, plus I was searching for information relating to my surgeon and discovered he had written several articles on Thymoma. I had not been given a thymoma diagnosis, but I kept coming back to that as the possible problem especially in light of my consultants experience. As the date for surgery had passed and I knew that Mr Sellitri was attending a conference in Madrid, I was losing my nerve and I raised questions with my nurse contact. I expressed my fear of having both procedures. I very quickly had a telephone consultation with Mr Sellitri who said that he had presented my case (no names) to colleagues and peers at the conference and that the consensus was that a thoracotomy was the best plan but that I would need to be prepared for the possibility that both procedures would take place.
Surgery was booked for 18th October 2019. On the day, Mr Sellitri said he wanted to check via camera before making his decision on the procedure. I signed another consent form seconds before the anaesthetic.
The next day I discovered that just the thoracotomy had taken place.
The majority of the mass had been removed but margins had to be left because of risk to the aorta. The fluid taken from the cystic mass was 2.5 litres. The mass itself – according to Mr. Sellitri, was the size of a small baby. My left lung had been compressed and the mass had been growing with the phrenic nerve stretched across it. I was very lucky that my lung recovered immediately the mass was removed.
I didn’t get a hint of the diagnosis until the following January when I was told I’d had a thymoma but that some of the tissue had been sent for further examination in the US as a further opinion was needed. In April 2020 I finally had a further consultation with Mr Sellitri by telephone (thanks to Covid) to advise me that the mass had been a thymic cyst containing 2 x thymoma and that I had possibly been born with the cyst. I’d had it for a long time, but it had taken 64 years to become a problem. Thankfully this was classified as Type A.
There was a little concern that there could be some spread as a nodule was found on each lung and on one adrenal gland. I have beenhaving CT scans on a regular 6 monthly basis followed by telephone consultations with Mr Sellitr. Again, Covid has meant that I haven’t had a face-to-face consultation since January 2020. So far there has been no change to the nodules and no need for any other treatment or intervention. There is some thickening of the tissue but I presume this is nothing to worry about. A face-to-face consultation may perhaps be more informative.
I’m now in the third year since the surgery. I’m told I’ll have CT scans for up to 5 years post-surgery. I’ve been incredibly lucky and am so grateful to have received excellent treatment. It’s not possible to be totally relaxed about my situation but I am fortunate to have no further need for treatment at the moment. I wish it could be the same for everyone.
