Lymphoma & Watch and Wait
By Charlotte Cox
In 2015, Charlotte was diagnosed with a non-Hodgkin’s follicular lymphoma, a type of slow-growing incurable blood cancer in 2015.
After undergoing 3 years of chemotherapy and immunotherapy, Charlotte went into remission, but unfortunately, in the summer of 2021, she found out that her cancer had relapsed. Charlotte shares her lymphoma lowdown on the type of active cancer monitoring called ‘watch and wait’.
Being diagnosed with incredible cancer in my 20’s was a whirlwind of emotions. It wasn’t until I was in the throes of treatment, that I learnt how complex this type of cancer is. Through research, I discovered that people with this follicular lymphoma can go on a ‘watch and wait’ type of monitoring, but because I had widespread bulky tumours, I was urgently put on chemotherapy treatment. It wasn’t until I relapsed in June 2021, that I was put on ‘watch and wait’ or ‘wait and worry’ as some call it.
For some slow-growing and incurable cancers like follicular lymphoma, there is no evidence being treated early on, when you have no, or minimal symptoms have any benefits. With incurable cancer doctors also need to consider the number of treatment options that are available and have to look at the long term plan, they don’t want to use up all your treatment options too quickly – we need to keep some in the bag to keep me living for as long as possible. So, instead, doctors recommend saving treatment for later, when symptoms appear or become more problematic i.e affect your quality of life, or organs, and when the treatment will have the best impact.
So what happens on ‘watch and wait’?
The ‘watching’ part of this involves check-ups and blood tests, which for me is currently every 3 months and the ‘waiting’ is waiting to start treatment if the lymphoma progresses – although some never need it.
About 27,000 people in the UK are currently on watch and wait (around 13% of everyone living with blood cancer). Each year, around 5,000 people are put on watch and wait.
I have found that ‘watch and wait’ has taken more of an adjustment than starting chemotherapy. I understand the reasoning and benefits behind waiting to treat, i.e avoiding the toxic side effects of treatments for as long as possible. But I am struggling with the thought that we’re allowing cancer to slowly grow inside of me – especially when I have very visible tumours on my neck.
To alleviate my anxiety I have been keeping myself physically active by swimming and running, have also found that reaching out to other people also on watch and wait, to vent about my worries or ask for advice has provided me with additional mental health support.
I also have confidence in my consultant and trust their experience, knowledge and the decisions that they make. I recently expressed a concern that I was experiencing unexplained pressure in the area where my tumours were congregating. He listened to my symptoms and booked me in for an urgent, non-invasive but more importantly non-toxic MRI scan to take a closer look at the structure of my tumours, their growth and whether they were impinging on other parts of my body. The results of this scan will determine whether I continue on watch and wait or we look to start a form of treatment.
Treatment not to cure but to put me back into remission for as long as possible until this cycle of ‘wait and watch’ will start again.
