From very rare diagnosis to hope

A blog written by kidney cancer patient Kirsty Neilson

My journey begins

My story began back in 2021. I was having an ultrasound for my endometriosis and the sonographer found fluid on my left kidney. The sonographer informed me that usually fluid is a sign of a kidney stone, however they couldn’t see one so she would get my consultant to investigate.

I never heard anything, so assumed all was well. Throughout 2022 I kept getting abdominal pain and occasional back pain. When I went to the GP’s, they did urine samples, there was traces of blood but again I thought it was my endometriosis and did not worry.

It wasn’t until May 2023 that the constant pain started in my left flank following a fall off my bicycle. I went to the accident and emergency department, and they sent me for a scan as they were not sure if the pain was linked to my bicycle fall or an underlying problem. I had a CT scan and again the fluid on my left kidney was identified. The consultant seemed confident that because there was no change in the fluid since 2021 that I should be sent home and see how I got on. Over the next two months, the pain would not go away, even with pain relief. I started to become extremely fatigued, where I would need to go back to bed after school runs as I felt exhausted all the time. I also began to feel generally unwell the majority of the time. So, I went back to the GPs office twice. The first time they sent me for bloods and sent a urine sample off, the second time they sent a request for an ultrasound.

By October I still hadn’t heard anything, so I decided to go back to the GP because the pain by this point was intense and the fatigue had become worse. The doctor did a urine sample, and more traces of blood was found so she decided to send me for an urgent ultrasound. The hospital rang me the next day and said they had a cancellation for that day. I went for the scan and afterward the sonographer informed me that she would send the results to my GP, but that I would also need to see a urologist as the fluid on my left kidney had gotten worse.

The following day my GP called me and asked if I had heard of the ‘two-week wait’. The doctor explained that this was protocol for patients with suspected cancer and that the patient needed to be seen by a specialist in a two-week time frame to have further testing. This is to confirm or rule out a cancer diagnosis, the sooner diagnosed the quicker treatment options can be arranged. Following this conversation, I would be sent to urology for further investigation.

On November 14th my urologist rang me and said he couldn’t get a clear enough picture from the ultrasound, but judging by the CT scan from May he wasn’t overly concerned about it being cancer. However, he said that I would need a CT scan with contrast to investigate what was going on.

A week later I had my scan, then waited for the results. It took over a week, so I thought all was well. However, on the 30th November the hospital rang me asking to see me the next day.

Diagnosis

On the 1st December, everything changed for me. My dad and I went to see the urologist and he told me that it was definitely cancer and that surgery would not be an option as it had spread to two of my lymph nodes near my stomach. To be certain of the type of cancer I have, he advised me that I would need a biopsy. Whilst there I asked him to check my neck as a lump had appeared there in the previous week. He explained that it would also need checking and booked me in for an ultrasound of my neck and a chest X-ray. He also introduced me to my Macmillan nurse who would be with me throughout this whole process.

As you can imagine, I came away worried, but tried to remain positive and hope for some good news.

Over the next two weeks, I had my biopsy, chest X-ray and ultrasound on my neck and was informed that I had been referred over to oncology and they would be in touch with my results. The wait was horrendous, but I tried to enjoy Christmas as much as possible.

The 3rd January was the day I met with my oncologist. Alongside my Macmillan nurse, he began to tell me, my brother, and my sister-in-law my diagnosis. I had stage 4 advanced, incurable cancer of the kidney and it had spread to two lymph nodes near my stomach, one in my chest and a cluster of three in the base of my neck.

He drew a picture of a kidney and the tube and explained what the most common kidney cancers were called. However, mine was not that. Mine was called ‘squamous cell carcinoma’ (SCC)* and it was extremely rare to be primarily in the kidney, it is usually a very common skin and womb cancer. The prognosis for such a cancer is poor with a survival rate of up to two years. He advised me that this particular type of cancer does not respond well to chemotherapy, however, that would be the route that we would try to see if it has an impact. I was to have GemCarbo chemotherapy.

I left the meeting in a state of absolute shock and instantly went into fight mode. I am a single mother with my two boys who I have sole custody of, so this news was devastating to say the least. I’ve always been a glass-half-full kind of person so straight away I was positive that there was something that could be done and how mine being so rare was a good thing because statistically they do not know a great deal about it yet. What is known is not great but there is always room for hope.

A family member introduced me to homoeopathy and how those remedies can help not only alongside chemotherapy but also help the body’s own immune system. By this point, I would give anything a go.

Over the weeks before starting treatment, I began to get my ducks in a row. My main priority being the boy’s welfare, who would be their guardians, my will and mainly how I would tell them the news. I went through every scenario in my head and decided that I would have bears made with my voice in them and plan a day to tell them.

Telling my Children

That day was the most heartbreaking day I have ever encountered as a parent. Parenting is hard anyway, but to do it while dealing with cancer is just unimaginable. Alongside my Macmillan social worker and close friend on the 18th January, I told my little boys the news. I had already been honest about having a poorly kidney, and the boys knew about cancer from when my mum sadly passed with ovarian cancer.

I started the conversation, and then let them lead it with their questions. I’ve learnt over the years from working with children that they will ask what they want to know and how they grieve differently to adults. With adults its all the time, whereas children it comes in waves.

As you can imagine, the conversation was full of lots of cuddles and tears, and I am so incredibly proud of how brave and strong my boys are. I explained to them that when I start treatment it will make me very poorly so it can fight off the cancer. That night we all stayed together in bed, and I answered as many of their questions as I could. The only question I could not and cannot answer was the ‘how long they have me for’ question. Following this I decided to get us all christened and have the boys guardians be their godparents.

Treatment

I began treatment on the 22nd January, starting my 3 weekly cycles of chemotherapy. This consisted of one week of seven-hour chemotherapy treatment, the next week a half hour chemotherapy treatment, followed by a week off.

The journey into treatment has triggered an array of emotions and I have struggled with many side effects of the chemotherapy. However, I still remain positive and hopeful.

On the 18th March I had my follow up CT scan and received my results via my nurse on the 26th March, I saw my oncologist for a further treatment plan on the 3rd April.

The news was unbelievable, after such a devastating prognosis to hear that the chemotherapy and homeopathy treatments are working and have reduced my cancer by half. The lymph nodes in my neck have gone from 11mm to 6mm, the one near my stomach from 16mm to 8 mm and my kidney cancer has reduced by half. There are no traces of any cancer anywhere else in my body. This has been such an incredible shock after 8 weeks of treatment but gave me so much hope that even after such a poor diagnosis there is still light at the end of the tunnel and most importantly hope.

I have been documenting my journey so far, and how parenting with cancer has been since my diagnosis on Instagram @kirstys_scc_cancerjourney. I hope my story helps others out there with their own journeys and encourages people to look out for signs and symptoms.

Much love.

Kristy

*Note: Primary squamous cell carcinoma (SCC) of the renal pelvis is an extremely rare entity representing only 0.5% to 15% of all urothelial malignancies. It is clinically unsuspected due to its rarity and inconclusive clinical and radiological features, and rarely presents as kidney cancer.