Following diagnosis in 2003 with no symptoms and, as is often the case, when being checked for a different issue, a full left kidney removal carried out. Tumour approximately 7 cm. Monitored at Urology and scanned regularly until approximately three years later when spread to chest was discovered – transferred from Urology to Oncology care.

 

SPREAD TO CHEST

Advised numerous spots on chest had developed and indication that this was inoperable and incurable, thus the condition would be treated on ongoing basis. At this point pazobanib had just been approved and commenced on this oral medication.  Continued for a number of years with few side effects apart from some tenderness to soles of feet and palms of hands. Very occasionally incidents of coughing up blood within sputum.

SPREAD TO BRAIN

Seven years after diagnosis experienced a regular tremor in left leg. Ignored, assuming perhaps a nerve pressing issue. Experienced difficulty in walking and attended physiotherapy and awaited a Neurology outpatient appointment. On reflection have often wondered why referral to Neurology for brain scan, whose waiting time was lengthy.

Recall physiotherapist mentioning he “wanted to be sure nothing was going on up there”. I did not realise he was referring to the brain and looking back he was the only one whose thinking went in this direction.

There followed an incident of falling out of bed and numbness in left leg resulting in hospital admission. Brain scan carried out and brain tumour identified.

The Palliative Care Consultant visited me in the ward and discharge followed on the Wednesday. On the Friday phone call received advising me to report to the Neurology Unit at the Southern General in Glasgow on the Monday, and could I please pick up my hospital record from Glasgow Royal Infirmary (from where I had been discharged) on my way!

A MDTM (Multi Disciplinary Team Meeting) had decided I was a suitable candidate for removal of tumour and this was carried out with discharge to a rehabilitation ward a few days later. Initially I had no ability to walk and little use of left arm. Arm improved quickly but not so walking.

A long period of rehab/physiotherapy followed and discharge using a walking stick. Physio continued at home. At follow up appointment when I mentioned my poor mobility the Neurologist indicated “you would be a much more ill person if the tumour had not been removed”. The tumour came from the kidney, i.e. was not a new primary.

FURTHER BRAIN INCIDENT

Approximately three years later my scan showed a new brain lesion, brain scans having been clear until this time. The treatment for this was scary. A number of special scans carried out and measurements of the head taken. A plaster type caste of the head was made which was used to pinpoint the lesion when radiotherapy was carried out. This was painless and only two treatments necessary. The brain scans to this day have now remained clear.

SPREAD TO BONE – FEMUR

Walking continued to be difficult. The left leg was very heavy, given to spasms and dragged when walking. I sensed further deterioration and now using two sticks to walk, mentioned my concerns to Oncology. An immediate x-ray showed a tumour on the femur bone.

Hospital admission when Orthopaedic Surgeon carried out treatment by inserting a metal rod into the femur to avoid fracture and repositioning of hip area. Oncology medication required to be discontinued during this period. Intensive period of rehabilitation and physiotherapy followed. Unfortunately, almost four months in hospital due to discharges but two subsequent falls which required further surgery.

MEDICATION TREATMENTS

  • Pazobanib, as mentioned earlier.
  • Nivolumab infusions for 18 months until a horrendous rash occurred and discontinuation required.
  • Cabozantinib for almost two years to date with little side effects apart from some tenderness in feet and some constipation.
  • Following the brain tumour, prescribed Tegretol to eliminate fitting and Omeprazole as the former can cause stomach issues. Continue with these to date along with an anti- hypertensive medication.

 

May 2020 marks entry into my 18th year since diagnosis. I am hugely grateful for the Oncology, Neurology and Orthopaedic care received which has been outstanding. Throughout this time, apart from when an inpatient, I have kept extremely well. Mobility continues to be severely restricted but manageable and life is good. Fortunately I am not a worrier by nature and feel worrying does not change outcomes. Continued working full time throughout retiring aged 67, three years ago. Currently the disease is stable and hopefully will remain so.

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