This Cancer Won’t Win

A blog for Kidney Cancer Awareness Week 2024 by Carol Ann Smith-Canavan

“I can’t leave my kids without their mum”. And there it is.

It’s 10th May 2019 at 14.24hrs and those are my first thoughts on inadvertently viewing a letter on screen at an emergency GP consultation. I’ve repeatedly pushed for an answer to ongoing shoulder pain since 12th October 2017, revisiting in November 2018 having self-referred to A&E for an X-ray, thereafter, re attending my GP requesting a referral to orthopaedics on 06th February 2019 as debilitating pain was significantly impacting me. On 20th February 2019 I experienced sudden onset right flank pain, attended my GP and still I awaited answers.

So, to read I have ‘a renal mass, likely a tumour in my left kidney’ in a letter I hadn’t even seen yet, was beyond shocking. It went on to say; ‘a CT scan of chest, abdomen and pelvis has been requested to confirm my staging and I have been fast tracked to the Urology/Oncology MDT Renal Team.’ The GP expressed her commitment to accessing my hospital notes before tentatively referring to my 9cm lump which would most definitely require surgery with kidney removal in the coming weeks!

And that was it. In an instant my whole world stopped, colliding with every aspiration, hopes and dreams I had for me and my family. I have everything to look forward to, so many plans, milestone events I’m unequivocally destined to be here for. I’ve just turned 48, I was born on St Patrick’s Day 17th March 1971, a great day to be born! There is always a celebration somewhere to be had and of course including me! I’m a fit, healthy, happy, outgoing mum of two amazing children and, apart from the sporadic shoulder pain I’d experienced since October 2017, I’m living my best life, in the past 12 years doing a job I love. I was as a Team Leader for Police Scotland, keeping people safe as part of our critical emergency services and I’d just left work an hour ago.

I am stunned, I am alone, with this life altering unexpected information. My husband of 20 years (25 together), a newly self-employed Gas Technical Engineer, is stepping onto a flight home from a training course. My daughter Erin, aged 17yrs is studying for her Higher Exams and excitedly preparing for a night off to attend her first Malawi Ball Fundraiser. My 14-year-old son Aidan is at any moment due to come off his school bus and head to the football pitches for a kick around with his friends on a Friday afternoon. For them, life remains the same.

I catch my breath and call my big sister, Siobhan, and through streaming tears I say, “it’s cancer, I don’t want to die Siobhan, I don’t want to leave my kids, they need their mum”. I make the journey home where my sister arrives and promises me, I am not going to die. A promise, deep down, I know she cannot keep yet still I hug her tightly and I truly believe her.

As anticipated, I’m fast tracked for CT scan, thereafter MDT (Multidisciplinary Team) meetings where it’s initially thought I have stage 2 renal cell carcinoma, contained within a 9cm tumour in my left duplex kidney. I was told I’d had this approximately two years, since I was 46 and it was highly likely malignant.

I remain very positive, albeit some days I’m terrified. In quiet moments I find myself bargaining, ‘please, please, please let me live’. I continue working for 5 weeks to support my family, my team, and colleagues facing an uncertain future until one afternoon, in significantly prolonged pain, utterly exhausted with an all-consuming tiredness I cannot quite describe, I make the decision to rest and spend much needed time with my family before undergoing a radical nephrectomy. I have the surgery on 1st July 2019 where it is thought my margins are clear, in the coming weeks my pathology report confirms it is stage 3a renal cell carcinoma, locally advanced disease with invasion of the fat and collecting system.

I push through positively determined and eternally grateful to an amazingly skilled NHS team at QEUH, Gartnavel and The Beatson Hospitals for this lifesaving surgery and unprecedented care. All this coming from an incidental finding at an ultrasound I pursued following the sudden onset of right flank pain in February 2019 where I’d initially sought medical advice for significant shoulder pain repeatedly from October 2017. I add that the sudden onset of right flank pain in February 2019, leads to two weeks after that, on 4th March 2019, when my GP suspects ovary pain at the opposite side of my yet to be diagnosed tumour, sending me to the hospital’s acute assessment unit. She requested a pelvic ultrasound; however, I was referred for a colonoscopy which unbeknown to me at this time, I wouldn’t receive until the 14th of June 2019 having been advised I could remain in hospital but due to the ultrasound queue being very long this wasn’t guaranteed for next day. I was told sometimes people never establish what their pain is, and it was suggested, due to my age, stage, and presentation, I could be menopausal.

I left hospital instinctively knowing my own body, something isn’t right. I called my GP the following morning asking her to please re-request my ultrasound as I had a feeling it wasn’t being scheduled. I was right, no ultrasound was requested, and I wait four more weeks for an ultrasound on 9th April 2019. I was seen by a conscientious sonographer who, on checking my pelvic area and ovaries, decided to have a look at my kidneys. She said “I don’t want to worry you, but this kidney is an odd shape. I’ll refer you to urology for a closer look”.

And yes, there we have it, an incidental finding (normal variant) dromedary hump. Dromedary humps are important because they may mimic a renal mass, and as such are considered for follow on investigation. I will spend another four weeks patiently waiting, wondering why my kidney has the hump.

Fast forward to my CT staging scan in May and successful Radical Nephrectomy on 1st July 2019, I was deemed an ‘intermediate risk of cancer return’ and referred to The Beatson. There I started on the recommended Rampart Trial Immunotherapy Treatment process which, following several weeks could not proceed due to an irregularity in my QTC heart rate (a normal variant) but for the purposes of Rampart meant my treatment could not be safely approved. What is it with me and these (normal variants)?

Initially I was absolutely devastated, this was my belts and brace’s chance at halting cancer in its tracks and I was told by the Beatson oncologist if my cancer returned, it would lead to palliative treatment. This was a brutal blow, but I picked myself up, pushed through as positively as ever saying to myself, “there’s absolutely nothing I can do about this and without question I’m going nowhere without a fight”. I continued with six monthly CT scans reaching my two year No Evidence of Disease (NED) on 1st July 2021, before I was subsequently diagnosed in a matter of days, having sought advice for chest pain and bloating symptoms laterally related to my metastatic kidney cancer. On 23rd August 2021, I received my second lifesaving surgery for metastatic kidney cancer undergoing left para-aortic lymph node tumour dissection with oophorectomy surgery for right ovary removal as it was thought my abnormal ovary presentation was cancer.

I am forever grateful to my surgeon and amazing team of professionals in our NHS. The magnitude of what they have done for me will be forever realised. I was incidentally diagnosed at 48yrs, 2yrs on having listened to my body repeatedly thinking something isn’t quite right. I had a painful right shoulder whilst keeping fit and laterally right lower quadrant pain. I didn’t meet the criteria or age range for kidney cancer I could be anyone. I was advised I’d been unlucky. Four and half years on and I feel incredibly lucky. It’s been a tough few years, where I pushed for answers, and thereafter had the most exemplary NHS care. In hindsight, I considered the night sweats and pain were linked to my shoulder and perhaps perimenopause, as did the medical professionals. One thing recognised was my shoulder pain undeniably saved my life.

My children, then 17 and 14 are now 21 and 18. I am truly blessed and eternally grateful. I have always said life is precious, life is too short and now I know more than ever how it can change in an instant. I’ve had 12 weekly CT surveillance scans, now 6 monthly.

Each day comes bearing its own gifts and I promise to untie the ribbons. Very little is needed to make me happy. All those things you’ve always wanted to do… go do them!

Love, health & happiness from me & mine to you & yours. Carol Ann