My name is Alison and I was 49 when I was first diagnosed with kidney cancer.
How did you find out that you had kidney cancer?
2 years prior to my diagnosis I was getting breathless so my GP sent me for a chest Xray. This showed that I had an enlarged heart. Further tests showed that this was due to a heart muscle disease called dilated cardiomyopathy. Despite taking a range of drugs to support my heart by July 2012, I was admitted for an assessment of whether I needed a heart transplant. This showed that my heart was only working at about a third of normal capacity, that my kidneys were failing and that there was fluid building inside me. In 2013 I went to Papworth Hospital to discuss the process of joining the transplant list and they undertook an MRI of my abdomen. They discovered a 12cm tumour in my kidney with spread to a lymph node, adrenal gland, my heart and lungs. Heart transplant was out of the question so I was sent home. My GP was the one to break the news to me and she explained that all treatment at my stage of the disease was ‘palliative’ or designed to help with the symptoms that may arise and possibly extend my life. As my heart was so weak, surgery may not even be possible.
What treatment did you have?
Within 3 weeks, I was referred to Guy’s Hospital who specialise in complex nephrectomies (kidney and tumour removal ) including those involving the Inferior Vena Cava (the big vein from your heart). It was always clear that the operation would be high risk. My consent form put the risk of death as 1 in 5 with additional risk of brain injury. The urology team and cardiac teams at Guy’s and St Thomas’ worked together to develop ways to mitigate the risk including having life support machines on standby. I had an open radical nephrectomy with no problems and I was discharged about 5 days later.
It wasn’t all plain sailing. I had awareness in the recovery room but couldn’t move a muscle to let them know I was awake. I thought that I may have had a stroke but luckily I hadn’t and it was just a bit too much muscle relaxant. Once I was home things took a turn for the worse as my blood pressure plunged and my body started to swell up. I ended up having another 6 weeks in hospital and stints in intensive care to sort out complications including renal failure needing dialysis, sepsis, heart failure and a leak of chyle (lymphatic fluid) into my abdomen which made me look pregnant and eventually burst through my surgical scars in ‘Alien’ fashion.
My follow up appointment confirmed that my cancer was staged as T3a N1 Mx. This means that the cancer had spread through the outer covering of the kidney (the capsule), to the renal vein and the adrenal gland. It was also in a lymph gland and they were not sure about the extent of the spread beyond this although it was thought to be in my lungs and my heart. The tumour itself was about 12cm and had an unusually extensive supporting set of blood vessels.
My follow up regime involves 3 monthly CT Scans. In the November after my April nephrectomy, my scan was extended to include my brain as I had mentioned that I thought that my skin smelt different. The scan showed up that I had a metastasis in my brain (although not in the olfactory area.) I had Stereotactic radio-surgery which is a form of one off precision radiotherapy which targets just the area of the cancer. This minimises the risk of damage and is very effective. It was highly successful for me.
I now take Pazopanib to control the growth of the metastases in my heart (now 4cm), para-aortic lymph node and lungs. Apart from thinning white hair and occasional diarrhoea, I don’t have many side effects.
I still have aches and pains ( and very big scars!) from the surgery but I feel in better health than I did beforehand.
How have you felt during your diagnosis and treatment?
I am lucky enough to be fairly resilient in character. Having had severe heart failure for a few years, I was used to the reality that I may die young but the cancer diagnosis was a severe blow. I didn’t know how I would get the energy to get through treatment and wondered if it would be worth even trying. Telling people was the toughest part. There were a few times that I have been close to death or thought that I was. Rather than scaring me, it actually has made me more accepting and calm. I do what I can to survive and to make each day valuable. If you met me on a good day nobody would know that I had anything wrong with me.
The brain metastasis diagnosis was one of the most difficult times that I have faced. It was totally asymptomatic and yet it changed my life entirely. Not only is it psychologically difficult to think about it growing in the part of us which makes us who we are, I couldn’t drive for over a year which left me grounded, isolated and cut off from my family, friends,interests and work.
Do you have any advice you could share with other people?
Well meaning people will constantly serve up cliche after cliche to you, take it on the chin.
Do your research so that you can be an informed patient but don’t spend all day on the internet.
Get outside, see friends, keep busy, don’t sweat the small stuff, sort out the basics (will, care plans) but when you want to sleep, sleep.
What has been the best and worst bit of having kidney cancer?
There are good things and in some bizarre ways, I am actually happier most of the time. I choose what I do and who I spend time with as I haven’t got time to waste. I have also met some lovely people via the Kidney Cancer Support Network. Equally there is great sadness when I see patients and families suffering.
The worst bit is the uncertainty and lack of control of my life. Life is a 12 week cycle of scans and I find it difficult to be able to keep focus on a long game. Sometimes, I find I focus too much on the ‘what if’ and not the ‘what is’ and have to give myself a virtual slap! It is so hard when I know from experience that feeling great is no guarantee that things are great.
Have you taken part in a clinical trial or any research?
Yes, my tissue is in a biobank, I am part of a study on heart failure patients needs and I took part in a project on creative writing as therapy at a local hospice.
Have you taken part in any campaigns or volunteered to help in a particular way?
I am one of the KCSN Facebook Admin team who help to keep the pages supportive,accurate and relevant. I have also represented the group in Cancer Drugs Fund and Parliamentary meetings. I am Chair of Cardiomyopathy UK, a national heart charity, so I try to use that experience to help KCSN as we grow.