Linda’s story started about 13 years ago when she started getting “attacks” – this is how we described it. Linda would get immense back pain and could not eat or drink for 4.5 days, it was the exact same every time and lasted the same length of time. She went to the doctor a few times and was normally told it was just a cold/virus/flu, etc etc etc with no real follow up. As it happened exactly the same every time we pushed for testing, Linda told the doctor she had an Ulcer when she was younger (this was a mistake) so the doctor went down this path and ordered a breath test for the ulcer bacteria and a CT scan. The breath test came back positive (interesting as she did not have an ulcer) and the CT scan came back as an X-Ray as the doctor ticked the wrong box.
Instead of sending her off for a CT the doctor diagnosed her with an ulcer and sent her away with a script for Nexium. These attacks did not stop and became more regular, every 1-2 months. During this time we had moved to another town close to the previous one and instead of going back to the same doctor I suggested Linda finds a new doctor closer to where we lived and see if they could do some more testing. The attacks did not slow down or ease while on Nexium, which made me think it was not an Ulcer. Linda found a local doctor and went to see them. She was given several tests, bowel screen, CT scan and bloods. Linda being Linda did not tell me that the doctor had called and asked for her to bring her Husband to the appointment, instead Linda went alone and I went on a weeklong fishing trip that had been planned, she told me later the reason she didn’t tell me is so I would not cancel. I would have cancelled.
Linda was 39 when our lives changed forever, The CT scan showed many lesions in the liver, bowel and lymphatic system, the diagnosis was either bowel cancer, liver cancer or lymphoma or maybe all 3. Until surgery to remove the lesion causing the attacks, we would not know.
I was in Linda’s hospital room when the surgeon called me, Linda was still in recovery. He apologised which broke me straight away. He said he was not able to remove all of the lesions as they were far to extensive, he had also done a liver biopsy while operating so testing could be done to make sure we were dealing with only one type of cancer. He also mentioned I should start studying as he was very confident of what the diagnosis would be and told me it was very rare and many doctors would not understand or would not have seen it. This was the best advice I ever received. I started studying straight away finding the best sites to get information from and the ones to stay very clear off. Trying to understand the terminology and read scans, reports and anatomy.
Linda was diagnosed with neuroendocrine tumours (NETs), primary in the small intestine with secondary disease in the liver, local and regional Lymph nodes, some boney Mets as well. This is where we began the journey.
I took Linda to the ER in a rural town in the Sunshine Coast Region, as she developed a cramp like pain in her leg, she was only 3 days post surgery so I was worried about a clot, The ER doctor was nice, but also made the statement ” At least you don’t have cancer” It was still too early in my studies to call him on this but Linda and I looked at each other and just smiled.
We decided to get a referral to a NET specialist and move to Brisbane We were told the best care would be at the Royal Brisbane under Dr David Wyld. To be able to do this we needed a local oncologist to refer us. We made an appointment, we were asked to drop all Linda’s records off 2-3 weeks before the appointment, we did this. When we arrived for the appointment, I watched a person walk around the back of the counter and retrieve the folder where it was placed on the ground 3 weeks earlier. We waited another 30 minutes then this person called us in, it was the Oncologist, by this stage I knew more about what Linda was dealing with than this person, she had not prepared, and had very limited knowledge of this type of cancer. We only needed a referral, so it did not matter, it did cost us from memory about $400 that was not covered by private or public health. We got our referral.
We moved to Brisbane and started being treated by Dr David Wyld at the Royal Brisbane Hospital. This is where we finally felt safe, the team there and Dr Wyld were so incredible and although they had so many patients to see every day never made us feel like we were asking a silly question or wasting their time. The move to Brisbane and to Dr Wyld was the best thing we did. Linda’s disease stayed relatively stable for many years; Linda was put onto Sandastatin LAR injections every 28 days to help with disease progression. Linda did not experience a lot of the symptoms other people get but the injection was there to help with progression. Linda also had 4 rounds of Lutate with the nuclear medicine department Dr McFarlane from memory and again the treatment was incredible from everyone.
Linda was getting more and more tired, and heat was a major issue, Brisbane was great, but the weather was not great for Linda. As her disease was stable, we decided to move south to Tasmania and start a life there with the idea to retire in Tasmania. I always told Linda she would die with cancer not of cancer. Her disease was stable, well differentiated, KI-67 index of 2% so we were set, we left the mainland and moved to Tassie.
We purchased 12 acres of rain forest where we had all sorts of wildlife coming to visit, tassie devils and quolls visited at night and so many wallabies and possums. We fell in love with Tassie and Linda’s creative spirit kicked in, she started creating more and more incredible jewellery, pottery and timber pieces, some of which she sold at Spotted Quoll in Hobart, Mint Gallery in St Helens, Under the Oak in Ulverstone and Cradle Mountain Art Gallery, she was so happy but also starting to get more symptoms.
We started going to a Tasmanian Cancer Centre, a beautiful clinic, new and unlike Brisbane very few people there, most of the time we were the only ones in the waiting room, Linda was concerned about her care, she was worried about getting access to treatment and was not sure if a Multi-Disciplinary Team (MDT) was still looking after her in the background like what had she had experienced in Brisbane. When we asked we never really got a straight answer on this, but with stable disease we decided this was ok, we would keep a close eye on things ourselves as well.
Linda started getting more symptoms about 3 ½ years ago and her blood test CGA levels started to really go up. These results were always excluded with either, “the test is inaccurate” and/or “there are probably other factors causing it”. This was the only test we were aware of and it isn’t’ very good. Her CGA kept rising, her symptoms kept getting worse. We were referred to a Specialist Centre for some more Lutate and oral chemotherapy. During the Lutate we were still being told the disease was stable. Linda’s Symptoms kept getting worse, they were all discounted as not related to the cancer. They included; intolerance to coffee, alcohol, and some foods, intermittent very low blood sugar. The only time I managed to test her blood sugar it was down to 3.4. Linda had severe fatigue. Things kept getting worse, scans showed stable disease, no biopsy or MRI scans were ever done or ordered during this time. Linda started to experience intermittent steatorrhea which can be a sign of pancreatic issues, with her blood sugar problems and all of the other symptoms we were being told were not related we decided to move from Tasmania back to the mainland to get better treatment, we left this too late.
Linda’s first scan in Tasmania showed and reported intense uptake in her Pancreas that should be thoroughly investigated. We asked about this and we were told every time this is just physiological and not disease related. Early diagnosis of Pancreatic cancer is normally found by mistake looking for other issues…………… This statement comes straight from the Pancreatic Cancer site. I have recently been told this was looked at with previous scans and a new report was done, I do not recall seeing or being given this report.
Linda’s symptoms became more severe after we moved, her intolerance to coffee and alcohol became so severe if alcohol touched her tongue she would get pins and needles in both arms, her head would feel like it was about to explode and she would get a severe internal flushing similar to the contrast injected for a CT scan, again all of these symptoms were rejected as being part of her disease, her scans stayed stable.
We ended up going to see a gastroenterologist to try and find some answers, he agreed with us that it seemed very likely to be related to her cancer and also reached out to one of his previous employers The Mayo Clinic, they also agreed and strongly suggested we get more testing done, again Linda’s scans showed stable disease. Her CGA and liver tests kept increasing but again we were told ‘the machine is not working properly’, ‘They have changed the way the tests are done’, ‘other factors are in play’ etc etc etc.
Our new Oncologist did mention at our very first visit that what Linda has is not called Cancer, or I think the words were, “We do not refer to this as Cancer”.
What was about to happen, I think, changed his mind. I should also say where we were in this journey when we started to see him was at the end, we did not know this then but we do now, nothing this Oncologist could have done would have changed the outcome, we left it too late to move (in my opinion).
Linda had another CT scan in October as her symptoms were not improving and they were getting worse, she had started to take medication given to us by the Gastroenterologist for a Pancreatic issue and this did help with her Steatorrhea which again made us think there was an issue here. This scan also showed stable disease. Things were getting worse by the week, we tried different things to help but some foods were affecting Linda as well, if she had a decaffeinated coffee out sometimes they might not give her decaf or maybe use something with caffeine on it and she would be affected, things were going from bad to worse but everything was stable.
We pushed for another scan and in January her scan showed a massive increase in disease, so much that her liver was double the size and now had no visible un-diseased sections, and MRI was done showing an increase of 250 lesions in her liver alone, things had now shown up that her body was screaming about for 3 years. The MRI and CT also showed a lesion in her pancreas in the same area that had been highlighted 4 years earlier and discounted as physiological.
Linda’s prognosis went from slow growing stable disease in October to aggressive progressive disease in January. More tests were done to start the next chapter and where we go from here.
Linda started 12 rounds of Chemo in April, she handled the first 2 well and moved onto the 3rd round, Linda was admitted to Hospital the Monday after Mother’s Day 08/05/2023 and apart from a small stint at home for a few days stayed in hospital until she lost her battle with whatever she ended up with on 14/07/2023. I lived in the hospital room with her during this time and watched my beautiful Linda get ravaged by this disease. This was not a slow growing stable disease. This was incredibly aggressive and spread throughout her body with so much speed it took everyone by surprise. Clear lungs on Monday were full of cancer on Thursday. This was CANCER.
The Lake Macquarie Private hospital where Linda was treated and spent her last months were incredible, the care and compassion they showed was testament to the fantastic people they have working for them. Doctors, Nurses, Cleaners, Catering staff – all brilliant. Linda was always treated so well and felt so special, and I am forever grateful for this, I am still living a nightmare but knowing how Linda was treated while there helps me and our family. Thank you, Lake Macquarie Private Hospital, Reid Ward.
The advice at the beginning to study and learn about this disease was the best advice ever given, it helped me understand and be clinical about Linda’s Cancer, up until we lost her then everything changed from Clinical to emotional. 11 years of built-up emotion has come out at once. Linda’s body was telling her and me something was not right, we need to find more testing and ways to diagnose this disease when things start to change, we need to not look at things as physiological just because the patient has one type of disease and therefore would not have another.
During Lindas Journey we were told the scans showing uptake in her spine were nothing – ended up being neuroendocrine cancer, the uptake in her temporal lobe was nothing – ended up neuroendocrine cancer, the uptake in her arm was nothing – ended up being neuroendocrine cancer, the uptake in her pancreas was nothing – ended up being neuroendocrine cancer and in my opinion this was a new different type that ultimately took her life. Linda wanted nothing more than to make sure this does not happen to the next person.
We need to educate health professionals about neuroendocrine cancer. NeuroEndocrine Cancer Australia provide free education modules to HCPs on how to best diagnose and treat NETs, yet there is no government funding to promote these education modules.
Equity in cancer support funding should be a government priority. Your level of support should not depend on the type of cancer you have. The need for specialist NET Cancer Nurses in each state should be provided like most other cancers. If Linda had have had access to a local NET Cancer Nurse we may have made different decisions, we would have known which specialists to visit in each state. The NET Nurse could have provided education, literature and training to our local GPs. Importantly, Linda would have had a local Nurse who would have been able to better explain the road ahead as her neuroendocrine cancer transformed from slow growing to aggressive, we would have understood the possible outcomes every step of the way.
– Written my Kirby Marr, Loving Husband
