Life after NET’s – from a personal perspective.
OK I was in my 50’s and the regular flushes I was experiencing I took as being normal. I’d drive to work in the morning, sip on my ‘up and go’ and by the time I got to work, I was feeling flushed and had a bit of an urgency to go to the bathroom, but to no avail.
Shortly after I was at a birthday party with some friends, and again the need to run to the loo hit me, but this time as I looked in the mirror while washing my hands, I noticed my face appeared to be all sucked in, bright red, so too my neck and the palms of my hands, I thought WTF, and when my friends saw me, other than the humour at the time of being called suck face, I knew something was not right. My morning habit increased and I started to experience nausea and weight loss.
A few weeks later I had the opportunity to go to Tassie, it was not till my ferry trip back that I finally took the matter seriously, as my frequent bathroom urges increased tenfold and resulted in what I called passing black mud. So finally off to the GP.
My GP gave me a referral to see a gastroenterologist, (I’ll give him a plug if you live in Melbourne) Dr. Dilip Ratnam.
OK, he was easy on the eyes and had a beautiful speaking voice, but more to the point he was thorough, he did all the required tests, up and down scopes, urine and blood tests and each time they all came back clear.
Thank goodness for looking outside the square, his exact words where “I have seen this before when working in England” and decided to order two simple tests, one blood test and one urine test (which at the time went to Tasmania), within weeks, bingo, not the win you want, but a win knowing there was a result to my condition.
“You have Carcinoid Syndrome – a form of cancer” he said. After hearing the word cancer I don’t recall hearing anything else he said except “I will make a referral to Peter Mac Cancer Clinic”. Of course, being in shock and asking the obvious stupid question about prognosis, I also recall hearing 5 years.
My world suddenly stopped, I felt I was in a different zone, not within myself, but somewhere else, disbelief, shock, call it what you want, just the disbelief that I had the “C” word. After all, every time the “C” word was mentioned in the media it was linked to a death sentence.
I was with my girlfriend at the time and we both left the specialist’s office and looked at each other and cried, we had never heard of Carcinoid Cancer let alone Carcinoid Syndrome. Looking up the internet did us no favours. There was little known about this cancer and it was all doom and gloom and not many resources in Australia, period.
I thought great, my marriage has just ended, my boys were overseas, my sister was about to move to Queensland and I never felt so alone in my life, it was horrible, scary and very, very lonely.
Back track a moment, I should add it was my 54th birthday when I got my diagnoses, just after leaving my lawyers office earlier that day with my divorce documents, so not a great day, and to top it off, as I arrived home I was confronted by the real estate agent waving a cheque saying “oh your family home has been sold prior to auction”. No wonder I was feeling flat as a tack.
The following weeks involved tests after tests at Peter Mac (did I tell you I am chronically needle phobic) I was scared as hell at the unknown, the tests, the uncertain outcome, the little information about a disease that was considered rare and even if I was informed, nothing was being taken in as I was still in a state of shock and disbelief.
I had joined the 8000 club. (At the time there were only 8,000 people with Carcinoid Cancer in all of Australia) Happy not, but happy I had my friend and sister for support before she went to QLD.
Cutting a long story short, I underwent several weeks of what I called pre surgery injections, some in the butt and some given to me in my belly by the home nurse (fun – not!) but essential as without it, having surgery could have been fatal and before I knew it I was being prepped for surgery.
The amazing team at Peter Mac concluded that I had carcinoid syndrome (continuous flushing, my face, neck and palm of my hands would turn bright red, bathroom urgency, nausea, and weight loss. (at first, I thought it great, and bought a new pair of jeans) but that did not last long.
My primary tumor was on the tail of my pancreas about the size of a 20-cent coin, I also had a secondary tumor on the right side of my ovary.
I initially was given a five-year prognosis, went out and bought a plot, organized my Will, and thought that was it, not much to look forward to. There were only 8,000 patients in all of Australia, so I became an unwilling member of the 8000 Club of a ‘rare cancer’.
A support network had recently been established and consisted of two co-founders of what is now known as NECA. There were about 8 of us who would catch up once a month. We were navigating the best possible support together, they volunteered their time and worked like a trojan to help and get the work out into the community and to GP’s, so if nothing else, I did not feel totally alone.
I had radical surgery, they gave me a zipper from my bra line to just below my belly button, removed my spleen, and tail of the pancreas (thank goodness I did not become a diabetic), took out part of my liver, my secondary tumour, my left ovary and stitched me up.
I never met my surgeon, only his support person who explained the theatre at the time was a full house, a great and rare training opportunity for surgical students as my condition was unique. I forgot to mention I also had a strange red line running down the middle of my face from my forehead, in perfect alignment to my incision scaring, they could not explain it, but happily took happy snaps of me for future records and I signed approval to use my tissue and biopsy samples for future research and pleased to say it eventually faded away.
The next two weeks I was recovering in Peter Mac, the multi-disciplinary team was something that was not clearly understood at the time, but upon reflection, I don’t understand how anyone diagnosed with NETs doesn’t have a multi-discipline team to support them, they all work together for the best possible outcome and 14 years later, I am still here thanks to them and for early diagnosis through an outstanding gastro specialist.
Two weeks in the hospital (East Melbourne was not all roses, but I give credit where credit is due, I did not have one second of pain) and the care and service were excellent except for the endless needles and student nurses not really being that good at it.
I knew my house had been sold, so I had no option but to move in with mum who pampered me over the coming months while I recuperated, with regular chicken soup, hot cooked meals, I think I took advantage of the extra pampering, but I missed my pets who were being cared for elsewhere and needed to start my live over again regardless of what time I had left.
The frequent visits to Peter Mac never got easier, they were always scary and caused an increase in my anxiety, but as time passed the weeks became months the months became years and the annual visit became bi-annual, and to this day I know I am lucky.
I know how important it is to have an early diagnosis and a multi-disciplinary team behind your medical needs and how lucky NETs patients are today to have the support available to them and though the progress may still be slow there is progress nevertheless. Without this progress, I may not be here today.
If you are recently diagnosed with Carcinoid Cancer your shock, dismay, stress, and anxiety level does not change, but you learn to deal with it as time passes. It is worth noting how things HAVE changed and improved over the years.
- It is with great thanks to the hard work of Neuroendocrine Cancer Australia, that once patients are introduced to NECA they feel understood, they access the support of the NECA specialist NET Nurses, Living with NETs programs, National and local support groups, accurate and up to date resources, educational videos and other patients stories similar to their own.
- Patients Australia-wide have been taking in NECA Education module flyers to their HCPs to ensure greater GP Awareness, this is key to earlier diagnosis in more patients – however the government can not rely on the organic reach of the programs – government funding is required to reach mass HCPs in a quicker amount of time
- There are better and improved options of treatment but there is still much more to do. As with other cancers, there are better scan treatments, clearer detections, better pathology, and better prep medications and options – although many NET patients face greater/inequitable out-of-pocket expenses to access these.
Little of this was available when I was first diagnosed.
Acknowledgment must be given to the initial founders of the NETs support group who have contributed, fought, and strived forward to improve understanding, communications, and lobbying with the Government they understand that NETs is the 7th most commonly diagnosed cancer in Australia.
There IS life after NET’s, I know I am lucky, but you have to believe that each day is one step forward.
You can live with the discomfort of bowel urgency which will probably follow after any stomach or bowel surgery.
You can live with not being able to enjoy all the foods you once did, once you work out which foods are best for you.
You can live with feeling scared and anxious, once you find ways to enjoy life and learn to relax and as they say, smell the roses.
Be grateful for the improvements that NETs continue to strive for moving forward and know that with each step new challenges, new opportunities, new procedures, and better and improved practices are progressing to help NETs patients have quicker diagnosis, better treatments, and options, and most of all, longer life. I was given 5 years and now I am a 14-year survivor, I know there are many, many more long-term survivors out there, way more than my 14 years and there are many, many long-term survivors out there.
So yes there is life after NETs,
I have a new man in my life. I have a new pet family that brings me lots of joy, I am 14 years since my diagnosis and learned which foods I can eat or which foods I need to avoid or pay the price.
OK I did not keep the weight loss off, but grateful to have the extra weight I carry
And each day my scar reminds me of the second chance I was given, just should have worn a support brace around my belly longer to minimize the scare stretching, but that was not an option back then LOLOL
So yes there is life after NETS and yes you can live with NETS, you don’t have to feel alone or unsupported, there are wonderful NECA NET nurses full and rich with knowledge, skills, abilities, passion, and drive, and there are now more understanding and online resources, you don’t have to travel this life-changing journey on your own, reach out to the NETS community, join or establish a support group and move forward. Hugs.
Ann Wills
Dosh a 3 yro Groodle and Zac a 14 yro Labradoodle
