Bryn is a member of KCCure’s Benign Renal Mass Community. He shares his story of being diagnosed with kidney cancer, only to learn following surgery that his masses were benign oncocytoma. Many patients struggle with anxiety and guilt after such an experience. KCCure is committed to supporting these patients and working to better identify gaps in care for newly diagnosed patients preparing for surgery.
I am Bryn Jones a retired police officer in the UK. Born in 1963, I led a healthy lifestyle and am in general good health.
In December 2008 I had an excision of a small lump/tumour (sarcoma) from my left shoulder. The procedure was carried out by a plastic surgeon, the rationale was that it was believed to be a lipoma.
From 2009 when I was informed that the lump was in fact a sarcoma, I had the usual check ups every 6 months. Nothing had altered other than a lymph node on the left side of my neck was, and still is swollen. In November 2012 I underwent a series of MRI and CT scans though merely precautionary due to the swollen lymph node. The consultant I saw in 2012 informed me that a sarcoma may affect the liver as well as extremities though they do not metastasize and it was very rare. I thought nothing more would come of it.
Early 2013 I was contacted by the plastic surgeon who ordered the scans, and I was informed the scan had found masses to liver, both kidneys and spine. The opinion of those that reviewed the scans was that the liver and spine masses appeared to be haemangioma and nothing of concern whilst the masses on the kidneys were to be explored further.
In April 2013 I was called to visit a consultant urologist who introduced me to a MacMillan nurse. This was a little awkward as I had no symptoms of anything being out of place. So my meeting went well though with some apprehension when the consultant informed me I would likely lose my left kidney which would be removed via open nephrectomy.
At the end of May 2013 I underwent surgery and informed only a partial nephrectomy was required and losing only a 1/3 of the kidney. Histology revealed the tumour to have been an oncocytoma. So relief all around of course and surgery to the right kidney may not be required. Nevertheless having had another MRI scan I underwent robotic (DaVinci) partial nephtectomy to the right kidney with several smaller tumours being excised which again were found to be oncocytoma.
Since that time I was discharged from the urologist and to date I have had no symptoms of kidney related issues other than frothy urine. I had an ultrasound scan a couple of weeks ago and results sent to my GP whose advice was – If I have further symptoms of kidney stones to get back in touch and make an appointment. To my knowledge I have never had symptoms of kidney stones so I await a further appointment with my GP on April 1st to discuss.
Having initially been given the news I had kidney cancer (of course it wasn’t) I have suffered no ill health other than the recovery. Though the feeling of guilt has not gone away, joining a support network has helped.
Best regards Bryn