NET Cancer Awareness Day 2018: A timeline of metastatic Pheochromocytoma

Today is NET cancer awareness day – 10th November 2018. In order to help spread awareness I’ve written a timeline of my journey with this cancer. It undoubtedly shows how much life can be affected by a difficult to diagnose, difficult to treat but (usually) slow cancer. A little more awareness might just help someone reach an earlier diagnosis than I did; it’s the reason I started blogging. Early diagnosis is key for the best outcomes. Perhaps if my diagnosis had been earlier, I would not have reached the metastatic stage.

January 2012: 6 month battle with attacks involving severe headache/palpitations/sweating/shaking/vomiting. Numerous tests drew a blank so I was (mis)diagnosed with cluster headaches and injected with an anaesthetic/steroid cocktail into the base of my skull then sent on my merry way armed with a truck-load of sumatriptan self-inject medication.

August 2012: convinced I must be having some sort of nervous breakdown, I quit my job, packed up my life in London and headed Down Under….where I now live in NZ.

June-September 2014: recurrent UTIs, treated regularly with antibiotics.

September 2014: ultrasound scan to check kidneys, large 10cm tumour found above (and squashing) my right kidney, subsequent MRI scan and 24hr urine test confirms a diagnosis of Pheochromocytoma, a rare form of Neuroendocrine Cancer.

September 20-29th: alpha and beta blockers administered to block the effects of the excess adrenaline being secreted to prepare for surgery. When handled during surgery, the tumour could release too much adrenaline which can have life-threatening effects.

September 29th 2014: Right Adrenalectomy (resection of tumour including adrenal gland) by Adam Bartlett, liver surgeon. Surgery was 4 hours and involved mobilisation of the liver to locate the tumour.

The next 10 days: in hospital recovering from surgery, first 2 days in ICU. Hands down the most challenging 10 days of my life.

2 weeks later: readmitted to hospital for 5 more days with a pleural effusion, fluid on the lung requiring draining.

The next 3 years: surveillance and follow up involving annual MRI scans and blood tests after initial 3 monthly checks. All clear.

September 29th 2017: our baby boy Hugo was born.

February 2018: a proposed ‘final’ MRI scan and blood tests, hoping to get the golden handshake from my specialist (naive, in retrospect). Tests revealed metastasis in my lymph nodes. 5 days after this news I find out I’m pregnant.

March 2018: termination of pregnancy so that my treatment could progress after a LOT of soul-searching and decision making.

March 2018: GA68 PET Dotatate scan (a radioactive scan that locates Neuroendocrine cancer cells) confirms location of metastasis so surgery can progress.

April 5th-14th 2018: repeat alpha/beta blockers to prepare for surgery.

April 14th 2018: Lymphadenectomy (resection of affected and surrounding lymph nodes plus good margins of tissue) by Adam Bartlett. Entry through same L shaped scar, 4 hour surgery.

April 14th – 19th 2018: 6 days in hospital recovering from surgery, first 24hours in ICU. Still challenging but a much quicker and easier recovery this time.

May 2018: meet with my oncologist and I’m told that the cancer is a slow mover but stage 3/4 and it’s quite likely it will return. No chemo works on pheochromocytoma but there is a potential treatment (PRRT) I could be eligible for in the future if it returns, although surgery is always the treatment of choice where possible.

July 2018: first follow-up MRI. All clear.

November 2018: living and loving life as a mother of a gorgeous toddler and wife to the most amazing supportive husband.

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