Pulmonary neuroendocrine carcinoma - Suzanne's story

Pulmonary neuroendocrine carcinoma - Suzanne's story

I'll try to make it as brief as possible (you have hours to spare???)To begin, some background. I never tell my age, I lie continually. I'm a private person but from necessity I need, on occasions, (too many,) to stand up for those who can't. I live near Dunedin by the beach with my 30 year old son. He is home on occasion, and feels he needs to be around for me. He's purchasing an adjoining property, how good is that! 

Breast cancer was diagnosed in April 1999. After a lumpectomy, radiation and chemo I travelled to the Gawler Foundation in the Yarra Valley, Melbourne for complementary therapy. This 11 day 'retreat' restored my mental power which I found cancer had depleted. The course was endorsed by my GP and Dunedin oncologist, the most wonderful medical support in my quest for survival. 

I went public when I returned home to Dunedin and established a support group based on the Gawler guidelines. I was challenged by the local Cancer society which insisted that support groups did not work but I defied the organisation and set up the Dunedin Cancer Self-Help and Wellness Group. It was hugely successful and eventually morphed into divergent groups supported by medical professionals. The Cancer society sent its field officer to report on the group and it received a favourable response. Now the society has many support groups in place for various cancers.

Still got your attention? Good.Fast forward to September 2012. I experienced pain in my right femur. My GP insisted on an MRI and other procedures ( I had 3 monthly bloods and other scans on a regular basis since my breast surgery.)There was not any indication of any abnormality. 

In February 2013 while enjoying a month with family in Melbourne and indulging, as always, in a hectic physical and lively lifestyle, the pain continued to annoy. And I suffered a bout of indigestion, an extremely rare occurrence. Returning home my GP insisted on yet another MRI and, as I casually mentioned the indigestion she examined me and directed me to Mercy for an ultrasound. 

Within 2 days I discovered I had cancer in the femur and liver, and within the week I was facing my former oncologist, whose opening comment was, 'I never wanted to see you like this again!' The diagnosis was heart-stopping, momentarily. Small cell carcinoma with metastases In liver, lung, femur, both hips, shoulders, neck, spine, scattered through the pelvis etc. I've probably omitted some areas. With the majority of my large family now resident in Auckland the reaction was dreadful. My son was my main support in the first instance. Dunedin incurred a brief population explosion when the family arrived. 

The orthopaedic surgeon, who had previously operated when I had a spinal fusion, set a time for a rod insertion within the month. I objected, obstreperously, with the support of my large whanau and I was admitted within a matter of days. 

It is the longest rod that has ever been inserted, according to the local private and public hospital teams. I like to make history but really being a film star would have been more exciting. 

Fast forward again. Have you fallen asleep yet?

November 2013. No positive reaction to the various chemos and no indication of any improvement. My cousin In Sydney emailed me an article about the Peter MacCallum clinic which I presented to my oncologist, who commented that there was a doctor in Auckland who had connections with that institute. I flew to Auckland, met up with this specialist who asked for the liver biopsies, which my oncologist in Dunedin, had his pathologists review again. Still small cell. Richard's pathologists examined the samples and diagnosed atyptical pulmonary-neuroendocrine carcinoma. What? Total disbelief, never heard of such an outlandish cancer. I was referred to a NET Oncologist. 

My Dunedin oncologist was unimpressed with the Dunedin pathologists' diagnostic ability, but they had not seen this before and I do not hold anyone responsible. If I could claim ACC for wrongful diagnosis I would.....As my oncologist said, he is now learning from me. He recently retired, and I'm now locally under the direction of another oncologist. 

The NET oncologist in Auckland recognised my brother, who accompanied me, amongst others, to our first appointment. He had been a boyfriend of one of my young cousins and featured at many of our family gatherings. (I did confront her on her huge mistake in letting him go. Lawyers abound in our family but we could use oncologists) sigh. 

I have an extremely rare primary in the lung. Just my luck. Two trips to Peter Mac revealed no receptors. My cousin who accompanied me burst into tears when she viewed the extent of the cancer, then needed a huge sugar rush to stabilise her!  What about me?

My Auckland NET specialist said I would NEVER develop the carcinoid syndrome. I have. I'm re-writing medical history. They love me.

I have confronted Pharmac and appealed and have suffered their inaccuracies as regards my state. It is difficult to expect continuous written support from the medical professionals as we require them in their professional capacity. Pharmac's words were ' if Everolimus is successful with you, others will want it.' One way of keeping the population in check. 

My insurer Southern Cross, knows my wrath and persistence. As I mentioned, I addressed the AGM last year, I refuse to be intimidated, and they attempted to silence me but I was persistent. I am currently preparing a submission to alter that society's rules. When I have completed the legalities I will circulate it to all oncologists who I know will support with comments. Then I need to present it to the company prior to October 1 st for consideration. I need 75 percent of those present at the AGM to pass it and this can include proxies. I have verbally advised people on the shortcomings of Southern Cross in regard to the covering of new generation medications including mTOR protein inhibitors, and SIRT. There is consideration being given to TACE but I am not confident that this will be added to approved procedures as other specialists have been continually canvassing Southern Cross with little success. 

My disease has now broken out of its stability and all specialists are hopeful of containment with either SIRT, TAE or TACE. 

I refuse to allow this cancer to dominate my life though some days it is difficult. My spirituality lifts me up and I thank God for all those in my life who are there to help me. I am blessed. 

At some point I will tell you about me, and I am not defined by cancer. I have the utmost compassion and empathy for all who are attacked by this insidious disease. 

Thanks for reading this short story.

Kia Kaha,Suzanne