When Jo Odams was 28, she was diagnosed with Hodgkin lymphoma. It was successfully treated with chemotherapy and mantle radiotherapy. However, it increased Jo’s risk of other cancers later in life.
Since she was 35, Jo had routine mammograms to screen for breast cancer but she was completely unaware that she was also at higher risk of lung cancer.
After seeing our Let Go of the Labels campaign and reading many of the stories, Jo reached out to share her own experience.
“I knew I had a greater risk of breast cancer after my treatment for Hodgkin lymphoma, but I certainly never thought I was at any risk of lung cancer.
“I used to be a competitive swimmer. I went to the gym five times a week. I had never smoked, so lung cancer didn’t just seem unlikely, but utterly implausible.
A variety of symptoms
“I started to feel a little wheezy, and it gradually got worse. I went to see the asthma nurse. They prescribed some medication, which did help a little. They also sent me for a chest x-ray and lung function test. Both came back clear.
“I then developed a froggy throat and in March, had a chest infection. I had another x-ray which, again, came back clear (we think now the tumour was shielded behind my heart which is why neither x-ray picked it up).
“It was then that I noticed a lump in my chest wall. It was tiny so I just presumed it was a spot or a cyst. However, six weeks later and it had grown so I went to my doctors.
“The ultrasound was inconclusive but, by then, I was also experiencing shoulder pain and leg pain. I had a needle biopsy and CT scan, and on 28th June, I was told it was lung cancer.
Lack of understanding
“To say I was shocked is an understatement. We knew so little about lung cancer. I felt like a freak of nature. How can I have lung cancer?
But then, we started reading more about it. We found Roy Castle Lung Cancer Foundation and I realised I wasn’t alone; there were lots of other people like me who have lung cancer.
“The more I read, the more shocked I became – by the statistics, the lack of funding for research, the misconceptions, and the stigma. But that used to be me. Until my diagnosis, I was as naïve about lung cancer as the vast population, and that was what prompted me to reach out to share my own experience.
Opening up
“I was so inspired by the people who had shared their stories and how open they had been. It felt like there was freeness and an easiness about them.
“I am typically quite a private person. I use social media as a memory store rather than to post every detail about my day. Even now, five months on from my diagnosis, I have only told my family and closest friends. It just such an odd thing to suddenly ‘announce’ on social media!
“But I realise it’s important to talk about it. My eyes have been opened so I want to try and make the whole experience worthwhile. I want it to mean something.
I want to play a part in normalising lung cancer. It still feels like it’s a dirty cancer. It’s a cancer people feel ashamed or embarrassed to have. It doesn’t have celebrities championing the cause the way other cancers do.
“This all stems from poor understanding. No one with lung cancer should have to explain why they have this awful disease or answer insensitive questions.
“If sharing my experience, highlighting another potential cause or risk factor and demonstrating that truly anyone can get lung cancer can help change perceptions, then that certainly is worthwhile.”
