Hello, my name is Julie and I am 61. I am married with 2 children and my first grandchild is due in 8 weeks’ time. I had a left nephrectomy to remove a 6.8 cm RCC in 2014; just 4 days before my 60th birthday and I was determined I was not going to spend it in hospital!
My story starts in the previous June. We had been on a family holiday to celebrate my 60th, in Majorca. I noticed that I was waking up in the morning and the bed was drenched, I don’t remember having night sweats, but obviously they were happening. I thought that maybe the air conditioning hadn’t been working properly and I was overheating at night. I also had a slightly upset stomach, which I put down to change of food and water.
When I returned home I started to get a slight “pushing” sensation in my left side and after a couple of weeks I went to the GP. She gave me antibiotics for a fortnight, as she thought I had an infection as I still had an upset stomach. I had lost a little weight but nothing too much, in fact I had been dieting a bit as I had wanted to lose a couple of pounds anyway.
After taking the antibiotics, I was still having the same symptoms, so I went back to the GP and she decided to refer me to a Gastroenterologist for possible IBS. I was fortunate to be able to go privately and saw him a week later. He examined me and said that I didn’t have IBS and felt I should have a CT scan just to check everything was ok. I can honestly say that I was oblivious to the fact he was looking for cancer. I managed to get an appointment fairly quickly and I remember asking how long it would be before I got the results and was told it would be up to a week. Imagine my surprise when the GP phoned the next day and asked to see me, as she was going on holiday. It still didn’t click that I was going to be given bad news. Even when she told me that they had found a lump inside my kidney and that it probably a cancerous tumour. I asked how certain she was. “More than 50%” I said, “Yes” she replied. I went home stunned, where I had to tell my husband and my parents, who were staying with me the bad news. My Dad, who is 88, immediately offered me one of his kidneys if I needed it. Bless him!
The Gastroenterologists saw me again, confirming the diagnosis but reassuring me that the tumour was contained and there was no spread to the adrenal gland or anywhere else. He advised me not to go to our local hospital, but that I should be referred to a larger hospital about 2 hours away where hopefully they could do a laparoscopic operation rather than the ‘big cut’ His mother had recently been diagnosed with kidney cancer and although her outlook wasn’t as good as mine, she had been treated there and he was impressed with both her treatment and care. What a recommendation!
I had the operation on Sunday 31st August and was released on Tuesday 2nd. The surgeon was amazed at my recovery, commentating that I would greatly improve his statistics! They had successfully removed the tumour laparoscopically. I had 3 small wounds, only needed paracetamol for about 2 weeks and recovered fully within 4 weeks. And I celebrated my 60th at home! The histology on my tumour came back as grade 1, stage 2. So it had been detected just in time.
I had a CT scan at 3 and 9 months and now am having an annual check-up which includes an X-ray and an ultrasound. I pay for these privately, because the local NHS would actually not sanction me having any other follow ups as I am considered low risk. But for own my peace of mind I want to be checked. I also have a 6 monthly kidney function test and a blood pressure check with my GP.
I realise that I was very lucky and that if I had ignored my vague symptoms, my outcome could have been very different. The symptoms were not the usual back pain or blood in the urine.
The diagnosis was a terrible shock to me, my husband and my family and for months afterwards we all fretted about every ache and pain that I had. But gradually the cancer scare and worry of recurrence has become less to the forefront and we are getting on with our lives. I don’t suppose it will go away completely but I want to enjoy my future and although no one can give me 100% reassurance it won’t come back. I’m not going to let it rule my life.
As to the KCSN; I have found it a great resource for information about the disease for both patients and families and although I rarely post on the Facebook page I do read what others have written and it is obviously a wonderful support and reassurance to many. It is the first place I would go to if my situation changed, but fingers crossed, I will remain ” no sign of recurrence” for the foreseeable future.
Thank you all for the work that you do. I hope that KCSN goes from strength to strength and becomes the “go to place” for all kidney cancer patients in the UK. If everyone makes their GP’s, Urologists, Oncologists, Nursing Staff etc. more aware of the KCSN Charity’s existence, imagine how many more patients could be supported by people who know what they are going through.