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Hi my name is Suzanne Stewart, I am 48 years old, the mother of two children and live in Darwin. I have Metastatic Neuroendocrine Pancreatic Tumours (PNET’s) .
My cancer has spread to my lymph nodes and my liver – I have been told that I am terminal, and that I will die from this disease. This is a slow growing cancer but I have been told that some of my tumours have become aggressive and I should put my affairs in order ………I have retired from my public service job as a project manager where I worked to build palliative care pathways for people with Chronic Diseases in the Northern Territory and now cherish the time that I have to spend with my children, family and friends.
Below is my story so far, whilst I appreciate and am very grateful for all of my care so far during my PNET’s journey there have been times where I have felt alone, isolated and very uncertain about my pathway and how to access treatment and information.
I was first diagnosed with NET’s in October 2010 after the discovery of a mass in my pancreas. I had been unwell and lived with symptoms for about 4 years and for a while I actually thought that I might have ovarian cancer as the symptoms were very similar (according to the adverts on TV).
I had a hysterectomy in 2008 due to a large cyst in an ovary and fibroids and for a while after this surgery my other symptoms did seem to disappear or lessen. About six months after my hysterectomy my symptoms had returned. I put my symptoms down to IBS as had a couple of doctors but after continual acute stomach aches which then radiated to my back for 24 hours, constant diarrhoea, flushing, night sweats, tremors weight loss and on the third occasion of embarrassing myself by not making it to the toilet I presented to the GP looking for any thing that was going to make me better. It had become increasingly difficult to get myself out of bed with constant fatigue, lack of appetite, I was barely functioning. It was my daughter who noticed that every time I had one of these acute episodes it was after I had eaten Asian food usually within 12 hours and it lasted for about 48 hours.
On going to the GP I had not seen this particular older Greek Doctor before and as I described my “IBS” to him he said that “something did not sound quite right – I think we should do a CT Scan to have a good look I cant quite put my finger on it just to be sure” – I told him that I thought that was a bit of an overkill just give me some pills and I will be on my way. I had the CT without contrast as I had reactions in the past and thought I would here nothing else from it.
It was 11.30am on the Friday morning; I was at work tired as usual when I received a telephone call from the receptionist at my GP’s stating that the Doctor wanted to see me today in regard to the results of my CT. I left work and drove to the surgery thinking it was going to be some little thing and I was annoyed that I had to go to all this trouble and miss work and my meetings. When I arrived at the reception they were not their usual happy ladies that I knew and I wondered what had happened to them today that put them in this sort of mood. I sat and waited and Dr “George” came and called my name. We walked to his room entered and he turned to me with a scared look on his face and said “where is your family or friend” – what is he talking about I thought why would I bring someone to a Dr’s appointment I am 45 years old I don’t need anyone – then he said “You were supposed to bring someone with you – you need to phone someone to come here right now”. I called a best friend Karen and then there was the gruelling 15 minute wait for her to arrive. Dr George explained to me that I had a mass in my pancreas, in my bowel and possibly in my liver. He was saying lots of things that I could not understand but I did make sense that as I did not have the contrast with my CT that it might not all be masses but basically it looked like I was a very sick girl. I told him I wanted to phone one of my bosses whom just happened to be a palliative care physician so that she would be able to explain to me better. Dr George in broken English was explaining to her the xray report and he promised to fax it to her so she could help me.
Maureen through Dr George wrote me a script for steroids for my contrast allergy and I underwent another CT which showed that there was only a mass in my pancreas.
This Is Where My Rare Cancer Journey Begins
I underwent surgery in October 2010, my specialist surgeon had been hand picked by my friend and colleague and as a favour to her he would see me straight away. The Surgeon explained that 70% of these types of masses were cyst which made me quite confident that I would not have cancer. When I explained my symptoms and my “golf balls” in my back he did not really think that my symptoms had much to do with my diagnosis although he said we would wait and see. After being in hospital for 7 days and waiting on the results of the pathology the Surgeon was off to Katherine Hospital which was 4 hours away but he promised to phone the pathology unit first thing the next morning and harass them for the results. The next morning I had a lovely friend visiting who was a palliative care registrar whom I worked with, the nurse came in and said they were putting a call through from my surgeon – being upbeat and cheerful I greeted and said ok lets have it. He paused and said he was sorry to tell me that I had a very rare type of cancer – it was called a Neuroendocrine Tumour – the mass they took was positive as was the 18 lymph nodes that they also took with the tail of my pancreas and spleen. I asked what does this mean – what is NET – he said he did not know – he had not heard of it before but he was just researching it but he knew I was waiting. Stunned, numb shocked …. I looked at Cathy my friend – I was tying to let he hear what the Dr was saying- I asked him to tell Cathy so she could explain it to me – Cathy wrote the information down when she got off the phone she looked worried. What is it Cathy why doesn’t he know what it is? Cathy said I am going back to the office to “Google it”. Within one hour my other colleagues from palliative care came to visit me. A senior pall care physician greeted me with sue I am so sorry for your diagnosis this is when I figured I was in trouble.
Sitting In a Corner
Again due to friends in high places – Pall care team the Oncologist was asked to see me straight away (that day which he did which meant I was very special) he told me that it was very rare, slow growing and that they would need to do a special xray called a PET scan in Adelaide but the important thing was I was not going to die right now. After I had my PET scan in Adelaide I was told that there was no sign of NETs in my body and that I should go get on with my life and I would have blood and urine tests every 3 months to review any return of the disease – return of disease, I was not stupid you cannot have 18 lymph nodes positive and it not be in your system somewhere.
After hearing that Peter MacCallum Cancer centre were very well known for treating people with NET’s I requested a referral to Dr Michael Michael at Peter Mac for a second opinion. After another PET scan Dr Michael agreed that there was no NET’s present, go back home be health, look after myself and do lots of exercise and he would see me again if any disease returned.
I was very frustrated, scared and annoyed – I had been told that chemotherapy does very little to fight or cure NET’s and that if I had any radiation therapy around my pancreas it would do more damage than good. I wanted to fight this disease, I knew it would come back, how could people with lumps in their breasts that had them removed be given radiation and chemotherapy – they had lumps, I had a mass with 18 lymph nodes that was all positive to cancer. Was / Is my life not as important? Was my children’s future not as important? I didn’t care if the chemo did not work at least I was doing something I was fighting; I was doing something to save myself. I wanted chemotherapy; I did not care how sick it made me, but nothing came just ‘be healthy”.
I become very angry. I would see someone that was undergoing chemotherapy and had no hair and resent them - They were given a chance, they were fighting. People saw that they were going through chemotherapy there is sort of a respect – I often think some people think I am exaggerating about my diagnosis “ well she cant be that bad, she’s not having chemo”. I then worried that God would hear me or know what I was thinking and that he would punish me for having these thoughts and would make my cancer return. I could not tell anyone what I was feeling and thinking as they would think I was terrible and ungrateful and that I did not appreciate that I at least was still alive – the other thing I always say is that I am grateful that I have Pancreatic NET’s because if I had normal pancreatic cancer I would be long gone by now.
I did the best I could over the next 12 months attending my review appointments. I would attend the appointment and sit in the waiting room watching everyone come and go for chemo, radiation, Dr’s appointments. I was quite amazed at how much of a relationship all the other patients seemed to have with the staff at the cancer centre, there were inductions to the service for new people undergoing chemo or radiation therapy, there were welcomes smiles, ‘how are you going?”” how is the family?” conversations were struck – me I sat in the corner – no one really knew me except for the doctor. I did not see the Nurses or the coordinators or any of the other allied health staff – I wasn’t having any treatment, I was just waiting to see the Dr. People often say to me “well having cancer gives you another chance its not like getting hit by a bus and bang you are gone – NO its not but I am always looking over my shoulder to see which bus stop my bus is at. How many stops away till the bus gets me. This is not me being negative it is just reality for me
It was always hard leading up to the appointments as you need to do your urine and blood test 3 weeks before your appointment and the CT one week to make sure the results are back. I was still at work but was starting to feel very tired, vague, boughts of diarrhoea and some pain in my “golf balls” in the middle of my back. The emotions leading up to this appointment I know all “survivors” go through but when you have not had chemo or radiation therapy after diagnosis and initial surgery you are always suspicious that “its back” because you didn’t do everything to stop it coming back.
One and a half years after my surgery I told my Oncologist in Darwin of my concerns that I thought my symptoms and cancer were back. I was offered medication for depression as a lot of my symptoms fitted the depression diagnosis. I was offended because the depression diagnosis made me feel like I was putting it all on or a hypochondriac and because I am not “nuts”, but at that time I agreed to fill the script as I was feeling pretty tired and confused. It was at this time that my Oncologist suggested I talk to my GP about seeing a psychologist which at first I thought would not help but agreed to talk to my GP about.
It was at my next review that the urine and blood tests showed some elevation and that there was some suspicion around a lymph node near my aortic artery. I was told that there was the possibility that my PNET’s had returned. Devastated was an understatement. My son was in his first year of University in Melbourne, My daughter had just turned 16, there father had died when they were young what would happen. It was then that I questioned why did we just wait for it to come back? Why could we have not done something to stop it? How bad has it spread? Will they be able to stop it? Will I die? After consultation between Darwin Cancer Centre and Peter Mac it was decided that I was start having Octreatide Injections every month which would assist with my symptoms.
Treament - I'm Doing Something, I'm Fighting
The day had finally arrived I was starting treatment; I was fighting this disease even if it was just the symptoms. I had heard that the needle was huge and that it hurt really bad, couldn’t be as bad as the stomach aches I thought I did not care just give it to me. A chemo nurse had phone me at work to make sure all was ok for me to attend and she introduced herself as the person that would giving me the injection. I walked in to the cancer centre and was greeted at reception; I had taken a friend and work colleague along to hold my hand. I told them I was there for an injection for my NETs – “oh yes Sue we have been expecting you”. How are you feeling about all this I was asked – Bring it on was my reply. I was asked to put out my hand and they placed a red ID band on my wrist. I was now a patient undergoing treatment – I almost started to cry my friend hugged me. None of the staff there in that waiting /reception room understood the significance of that ID band on my wrist. I felt like everyone cared, they knew I had cancer, they knew that I was sick, they knew I was scared.
Oh I loved that injection I felt so much better – my symptoms settled somewhat and I was able to function better than what I had in months - nothing and one was going to get in the way of me and my
Octreatide injections. It was big and it did hurt a bit but the benefits make it all well and truly worth it. After a while the injection did not last as long and I had to have the dose increased and then every three weeks but it was still my favourite injection ever
After a few months on the injections a Doctor and PET Scan appointment was made for me at Peter MacCallum Cancer Centre in Melbourne and travelled down for my appointments. As I was not having any treatment I was not entitled to have an escort but I felt that this was something I could not go trough myself so I funded my mother to travel to Melbourne from Darwin with me. Dr Michael was away and I saw another Dr whom informed me that I had a tumour on my aortic artery, my left renal artery and there were three maybe four tumours in my liver. He tried to explain that some of the tumours had uptake to one of the PET scans contrast which indicated that they were of the aggressive nature and that they could not cure it and that it is the type that would grow faster than the other usual NET’s. I was told that I should put my affairs in order and that maybe the team at Peter Mac could assess me for a trial drug called Everolimus – there were only going to be about 20 people in Australia on the trial but to me anything was worth giving a go especially if it meant I could live longer to be with my children, family and friends
It was at this time that through a friend that had had breast cancer invited me to attend the rely for life fund raising event here in Darwin. I had never attended before and did feel unsure about attending as I did not know anyone else in Darwin that had had cancer besides my friend Sharon. After many tears were shed driving with my Mum to the venue I arrived to be greeted by Sharon in bright pink tutu, feather boa, wig and sunnies and given a glass of champagne. I was taken to meet all the other breast cancer relay team and started to feel a little better about being there. Sharon and I were talking with some of the other breast cancer women and Sharon told them about our friendship and my cancer, they were talking about the up coming breast cancer retreat and all the activities they were going to have and Sharon commented that the retreat would be great for me as I was in a place were I could really benefit from attending and it would help me to be able to cope with what was happening to me. I was stunned when a women who had had a lumpectomy more than 8 years before stated that I would not be able to go because if was only for women that had breast cancer. Sharon said that was ridiculous and I could take her spot as I really needed it. Again the women said no it was only for women with breast cancer. I ask why there is such a distinction that you have to have breast cancer. I am a woman and where my cancer is less than 3cm from my breast. In fact if I take my bra off my breast sits where my cancer is. I have the very similar issues around my body and being self conscious, I am very uncomfortable with people seeing my scar from my bellybutton the top of my ribcage. I find it very difficult that just because my cancer is not in my breast I cannot have access to the same activities and support services as someone with breast cancer. I am on a trial drug that is used for advanced breast cancer yet I am discriminated because my cancer does not sit 3cm above.
I was going to try and do another one about my 2 friends that have cancer one is Ali who had stomach cancer that lives everyday with the fear that her cancer is going to come back and also about Alison whom had melanoma that unfortunately passed away before xmas. We formed friendship through our diagnosis, isolation, and not having breast cancer. One stand out thing for me is that during one of our first catch ups Alison made the statement knowing that she was terminal ‘it would have just been easier if I had breast cancer – I am going to die but there are more services and support for those women”……that is a pretty powerful statement for someone that knew she was terminal and did not have long to live.
I started the trial and whilst there had been some growth possibly when I stopped the drug for 3 weeks due to a lung problem, at my last review last week I was “STABLE” yeahhhhh. I have a few symptoms come back (one which requires constant surveillance of the whereabouts of toilets) but at least I have another 3 months before my next scan to make the most of my time. I know there will come a time in the future where I will have to change my Treatment from the Everolimus to another type of drug, chemotherapy (they tell me it is a Salvage option – which is a last resort) or maybe there will be hope with the new Lutate 177 drug which is available to some types of NETs.
I must acknowledge the Staff within the NT Department of Health especially the Oncologist Dr Naryan and CNM of the Allan Walker Cancer centre in Darwin whom after sharing my journey and concerns for patients like myself with rare cancers are now working to improve patient journeys through consultation, research, and identity patient outcomes. This includes mental health, identifying support options, integrating rare cancer patients with more common diseases through activities and initiating cancer care plans.
The Unicorn Foundation
About six months after I was diagnosed with PNETs I was introduced by a friend and Peter Mac cancer Centre to the Unicorn Foundation. I was extremely grateful to finally find an avenue to be able to hear other people’s stories, treatment, issues and very importantly how to cope with living with the disease. One very important factor that a lot of people do not realise is that when someone has a diagnosis such as cancer especially a rare cancer it is not only the person that has the cancer that is effected it is also their family and friends. Every body is effected everyday, emotionally physically and to some extent financially. The unicorn foundation is a very good tool for everyone to be involved with. My family and friends often utilise the website and facebook page to seek information and advice and we all gain strength from the knowledge. Being in an isolated place like Darwin where there is one or two other NET patients having this as a support mechanism is extremely important especially when you feel alone and scared. I also found the foundation an excellent source of information when I was researching different treatment options (not that there are many) and it was there that I was able to find information on the trial that I started on through Peter Mac. I was also pleased that I was able to give feedback to others that were looking at commencing on the trial drug that I had been on for over nine months about the side effects and the results of me being on the drug.
Whilst in Melbourne at Peter Mac last year I was lucky enough to be able to attend a unicorn support group meeting. I was very excited to finally be able to meet others face to face that were going through the same thing as me. Being able to hear others stories, their diagnosis, treatment, and encouraging words made me feel normal and gave me courage. It was also fantastic because now when I go to the website and see others comments on the site I have a connection with them and I feel much more comfortable about asking for advice, support or just even to have a rave :-)
Without the Unicorn foundation I am not sure how I would have cope over the last few years. Many times when I have been unwell during the middle of the night I have logged on to the website and facebook page to read how everyone else is going or read the latest information or asked one or two questions if I have worries – it is like one big family.
When I was at the support group meeting I was astounded to learn that the unicorn foundation receives no government funding what so ever. The support that this foundation provides to so many people throughout Australia and beyond is enormous. It is not just the patients; it is family and friends also that benefit from the foundation. At present from what I can gather pathways, support and services for people with NETS has not been formally implemented, recognised, evaluated and most importantly FUNDED within Australia. The support and services that the Unicorn foundation provides and delivers is essential to all NET patients and their family and considering how much support that other foundations receive such as the McGrath foundation I think it is about time the Australian government started to deliver funding to other diseases especially rare diseases such as NETs. There is so much support and funding for breast cancer patients and their families that it makes me resentful. Foundations such as the Unicorn foundation need to be funded. I feel discriminated against because I have NETS and not breast cancer. A lot of my friends did not understand my frustrations about funding and raising money for breast cancer. It is when I explained to them that foundations like the Unicorn foundation do not receive any Australian government funding BUT how much money is funded and raised for the breast cancer they were shocked. A NET Support Nurse/ coordinator is essential for now and future patients. When I look back at my NET’s journey if I would have had the opportunity to be supported by a specific NET’s nurse it would have been a lot less traumatic both mentally and physically. Considering how many breast cancer nurse and coordinators we have here in Darwin, let alone anywhere else in Australia surely the Australian Government could fund one NET’s nurse through the Unicorn foundation that could help all NET’s patients throughout Australia.