Bourne mum diagnosed with rare lung cancer's fear of her children growing up without her

Pheobe has spoken of her diagnosis - and what it means for her family

Phoebe Grassby was diagnosed with a rare form of lung cancer when she was aged just 31 - but the cancer was only detected after she suffered pain in her leg due to blood clotting.

Phoebe, a mum of two, said: " I'd been having unusual symptoms. I'd been having blood clots and phlebitis in my legs as well as lots of migraines.

“All cancers can give you blood issues but it's more prevalent in lung cancer. Normally they thin it rather than thicken it, but in my case, they thicken it to the extent where I was riddled with blood clots, got deep vein thrombosis (DVT) and had to have my leg amputated.

“The very first feeling I had after losing my leg was relief because I was in an awful lot of pain. I was grateful not to lose any more because I was clotting everywhere - in my arms, my other leg and in my neck - but they didn't know what was causing it. Lung cancer was never ever considered or talked about. Once I was in hospital I had a CT scan. That was when they first spotted something on my lung.

“But even then, they still checked my ovaries and my breasts first because they thought that was more likely, that it had metastasised (spread) from somewhere else.

"It was only after the lung tumour was biopsied (tested) that they discovered it was stage 3 non-small cell lung cancer”.

Phoebe was then diagnosed with ALK Positive - a rare form of the disease which is unrelated to smoking.

She said: "I was put on crizotinib (a modern ‘targeted-therapy’ drug for lung cancer) straightaway. I was on that for 8 months, whilst also in rehab learning to use my new prosthetic. In December 2016, I had a CT scan which showed improvement and shrinkage.

“In January, I had a PET scan and that was clear. In February, I had a bronchoscopy which was clear, and then in March I had mediastinoscopy which was clear.

“In June, I had a lower left lobectomy (this involves removal of part of the lung). They also took out some lymph nodes which showed single cells of cancer left in there so I had a 12-week course of standard chemo. That finished in November and that was the end of my treatment so far.

“I’m two and half years down the road now and currently no evidence of disease. But that doesn’t mean that it won’t come back or that I don't have bad days. I find it really difficult to deal with the bad days. I close in on myself and I don't tell people what's bothering me. Any kind of niggle I get in my leg, any sort of cough and cold, I immediately think it's back, that's it. Between having the CT scans and seeing the oncologist, that's the worst. You think he's definitely going to say that it's back.

“Every kind of twinge I get anywhere, I think that’s another clot, it’s come back and that’s it – curtains. That I won't be here to see my children grow up. That they'll always be the kid without a mum and the fear of how much that would affect them mentally”.

Despite her many challenges, Phoebe is determined to play her part in helping other younger women to become aware that lung cancer can affect anyone, of any age – whether they’re a smoker or not.

Roy Castle Lung Cancer Foundation is the only UK charity dedicated solely to all types of lung cancer. The charity’s campaign is called LikeMe, and it aims to challenge the misconceptions around lung cancer, increase awareness and improve early detection. Phoebe is one of ten women who agreed to become the ‘faces’ of this campaign, in which their images and emotional messages can be shared across social media.

Paula Chadwick, the charity’s chief executive, said, “We’re initially focusing on women under 50. #LikeMe is a stark warning that no one is immune to this disease: It can affect people like you. It can affect people like me.

"Why women under 50? Because, after breast cancer, lung cancer is the second-biggest cancer killer in women aged 25-49, and those under 50 are more likely to be diagnosed at late stage when curative treatment is no longer an option. We need to get the word out; to make women, and healthcare professionals properly aware that lung cancer just might be the cause of that persistent cough, or, as with Phoebe, more unusual symptoms.”