The following was posted on Facebook to mark the first ever thymic malignancy awareness month. This is my story of how I came to be diagnosed with cancer following the birth of my daughter.
Babies are a blessing. My baby daughter is even more so because without her my thymoma would not have been found. She was conceived a week before our first IVF appointment and born a year after having a ruptured ectopic pregnancy that led to life saving surgery. To say the least the past year has been extremely difficult.
It is 10 days after having my baby daughter by emergency c-section that I start to experience chest pains and shortness of breath. It is late evening and we debate as to whether we should go to A&E or not. We have a 5 year old son and the trip would be a hassle, but we go because we think it is better to be safe than sorry. We arrive at A&E and wait for 5 hours to be seen. At 3am we are told that the chest X-ray does not show any signs of blood clots on the lungs, but as a precaution we are referred to the Ambulatory Emergency Care Unit (AECU) for a second opinion. At this stage there is no mention of anything untoward. Later that same day the AECU ring and insist that I come in, but I am exhausted after our long night in A&E. I ask to come in the next day convinced it is going to be a wasted trip.
At AECU they are still mentioning clots so I am sent for a CT scan. My husband and I wait to see the consultant for the scan results and we are both relaxed that we will be going home soon. The nurse comes out to say the consultant is just having a meeting with the radiologist and we will be seen soon. I assume this is unrelated to me. The nurse returns and insists that my husband comes in with me to see the consultant. I don’t think any thing of this, but my husband notes that this is the first sign that suggested something more serious was at hand.
The consultant starts off positive that there are no blood clots, but when you are looking for one thing you can end up finding another thing. He mentions thymus gland to me and I look blankly at him. I know my basic human biology but the thymus gland isn’t part of my knowledge. He says it is enlarged and that as a duty of care they need to investigate further by carrying out a biopsy. Of course my husband and I are shocked and turn to Doctor Google for more information. Cancer comes back in the results page and I start to worry. Only less than 2 weeks since the birth of my daughter I have hormones raging through my system and I break down in tears as to what this all could mean.
A respiratory medicine doctor calls me later that week and says they’re unsure if it is a lymphoma or a thymoma thus the need for the biopsy. The day of my biopsy arrives and the doctor carrying out the procedure describes it as a “small node” and says it’s unlikely to be anything to worry about. I feel less concerned. The procedure is slightly painful but over fairly quickly. She says I’m strong for keeping calm throughout as the needle and equipment are in my view and often people panic. I briefly glance at the computer monitor of the scanned images as I am wheeled out of the CT scanner and think to myself that the “small node” doesn’t look that small.
There is an anxious wait for the results and I think I am prepared for the news but when the word “cancer” is mentioned I feel knocked for six. It doesn’t fully sink in and I have to ask him again if he indeed was telling me I had cancer. He was. I mentioned my droopy eye lid at this point as having done research I found an association between the cancer and an autoimmune condition called myasthenia gravis. Blood tests are done and it comes back positive. I not only have a rare cancer, I have a rare autoimmune condition.
Telling family and friends you have cancer and a rare one at that was heart wrenching. I keep breaking down in tears. I am in my 30’s and have a young family- this can’t be happening to me.
The big day arrives and I make an emotional goodbye to my children as I head to hospital for major open chest surgery. My heart couldn’t hurt anymore than it did in that moment.
The surgeon explains to me my heart is very close to my sternum which is unusual and that my thymoma is close to my phrenic nerve which can lead to diaphragm paralysis. As they have to inform you with any major op like the sternotomy I’m having, there’s the risk of death.
As I’m wheeled into theatre to be put under I am numb. With the prayers and positive thoughts of friends and family my surgery is successful and I spend 24 hours in ICU as a precaution where I’m looked after by three amazing nurses.
I spend 5 days in hospital and can’t wait to get home to my family. Once at home I count down the 6 weeks until I can hug and hold my children again. I also count down to the pathology results. It’s a nervous wait.
My pathology results come back and show that the thymoma has spread to the fatty tissue and radiotherapy is discussed but decided against as the risks outweigh the benefits. Although the margins are very small, nonetheless they are clear. It’s classified as a type B1 stage 2B thymoma and was 6.5 cm in size. I will have regular scans for the next 5 years.
Cancer has made me feel more vulnerable in life but I feel so lucky that the cancer was found early- I have my daughter to thank for that. My baby girl is a blessing.
Psychologist and Patient 