Sandra’s story of hope
Sandra was diagnosed with early-stage IV pancreatic cancer in October 2019, just after her 54th birthday. At the time Sandra was experiencing issues with her pancreas, however she associated this to a previous diagnosis of pancreatitis which she suffered from back in 2017. While she acknowledged that her pancreas issues were back, she didn’t for a moment consider that it might be cancer.
Early warning signs
“My pancreas issues started with pancreatitis in January 2017 almost 3 years before my cancer diagnosis. Although thinking back now I feel there was a change from as early as 2014 when I developed an under active thyroid and then suddenly developed elevated blood sugar levels which was a first for me. I only found this out because of an eye test and the prescription kept changing so the optometrist said to have my blood sugar levels checked. At this point in time my GP should have had my pancreas checked seen as there was no other changing factor for the blood sugar levels. I had a Glucose tolerance test that said my levels were borderline diabetic but that was it.”
Starting the long journey to diagnosis
Sandra was admitted to emergency where she was told that the cause of her pancreatitis was likely overconsumption of alcohol on New Year’s Eve which had taken place 4 days prior. While she was a social drinker, who on occasion had a little too much, Sandra knew that she hadn’t been intoxicated and remembers sleeping badly due to reflux that was not usual for her. Additional tests didn’t reveal anything further.
“I did not think the pancreatitis was due to the alcohol but the CT scan without contrast did not show anything, so I was released a few days later when I was beginning to recover”.
Following her discharge Sandra had a lot of trouble with bloating and feeling very full after only a small meal. She found herself having to eat bland food to avoid very bad digestion pain. Knowing that this was not normal for her, Sandra went back to the GP who sent her to see a gastroenterologist/surgeon specialist where further investigation continued to come back with no clear cause. Sandra was put on antibiotics and no further investigation was undertaken.
“I had some ultrasound scans, and they came back with nothing and then I had an EUS endoscopic ultrasound. My stomach was extremely inflamed, and the gastroenterologist was convinced I had helicobactor piloris, but the test came back negative”.
Sandra continued to have digestion problems, with pain, nausea and sometimes diarrhoea. On another trip to her GP to advise of these ongoing symptoms, the GP rang the gastroenterologist who recommended that Sandra take reflux tablets, which did mask the symptoms for a while.
However, her pain and diarrhoea continued and worsened. Not only would meals out result in Sandra being up all night with diarrhoea and pain, but she was also becoming quite alcohol intolerant, feeling unwell the next day after only one or two glasses of alcohol.
As time passed Sandra’s digestion issues became worse. She tried everything. She saw a GP/Naturopath for perimenopause, she improved her diet and tried going gluten-free in the hope that it would make a difference.
Each time Sandra went back to her GP, as the diarrhoea issues continued to worsen, he would check her stools for bacteria, but never for steatorrhea. Steatorrhea is a condition which can develop after pancreatitis. With steatorrhea you see an increase in fat excretion in the stools. This can be a feature of fat malabsorption, can be an indication of issues with the pancreas, and suggests that your digestive system isn’t breaking down food adequately.
One year later, a diagnosis
In February 2018 Sandra requested that her GP test her for steatorrhea, which came back positive. She was also put on Creon digestive enzymes but no further tests or investigations too place. Sandra continued to experience nausea and digestion pain.
Sandra experienced constant pain in her thoracic area and her lower back and was lethargic. At this stage of her diagnosis journey Sandra saw an endocrinologist who specialised in the pancreas and lipids. Her endocrinologist was very thorough and began the testing process again, from the beginning. By the time Sandra attended her 2nd appointment, on a Thursday, she had been suffering from severe pancreas pain for 24 hours. A blood test for pancreatitis was taken and again came back negative and Sandra was booked in for an endoscopic ultrasound (EUS) the following week. The EUS was not required.
Sandra was admitted to emergency on the Sunday night.
After having a CT scan with contrast Sandra was told the next morning that she had pancreatic cancer that was metastatic and that she had to have a PET scan as soon as possible. The PET scan revealed a primary tumour of about 2.5cm and two lymph nodes affected.
“I was in shock. My world changed on 14th October 2019.”
A biopsy revealed that Sandra had adeno carcinoma, the most common form of pancreatic cancer. At this time her oncologist informed Sandra that her cancer was not curable, and that any treatment would be to extend her life and that surgery was not currently an option. She was told that she should live through 2020 but would probably die in 2021.
Not long after her diagnosis, Sandra commenced weekly chemotherapy treatment. After 12 rounds of chemotherapy Sandra’s lymph node cancers had shrunk, the cancer had not spread, and the primary tumour remained the same size. She was then put on fortnightly treatments for 3 months, which took place through the COVID-19 2020 lockdown. The primary tumour grew during this time, and Sandra’s oncologist recommended that she return to weekly chemotherapy or swap to a fortnightly chemo treatment of folfox6.
“Mentally I did not think I could go back to weekly chemotherapy after doing fortnightly. The folfox6 was harder to cope with as you essentially have chemo for 3 days. One day in the chemo ward and a pump for 48 hours. I was not well on this, and my dose had to be modified so I could cope.”
In August 2020, after 6 further chemotherapy treatments Sandra was given a PET/CT scan that revealed no cancer in her lymph nodes and just the primary tumour. This was her first PET scan since diagnosis, and she was so excited that she may now be eligible for surgery.
Sandra’s oncologist said that because her original diagnosis was metastatic that she was not a candidate for surgery. He said that while she may be in remission for a while, the cancer would come back in her lymph nodes and that she should keep doing chemotherapy.
“I knew my body could only handle so many rounds of chemotherapy, I had already had 24. I asked if the tumour was likely to become resistant to the chemotherapy and my oncologist said ‘yes, but that’s how it is’, in other words he was telling me that there were no alternatives, and that I would die.”
Seeking a second opinion
This was not good enough for Sandra, so she sought a second opinion and was given a few options which included new treatment options still to be approved by the TGA. His belief was that due to Sandra’s age, her health, fitness, and her outcomes from chemo that she should have surgery.
“He became my advocate and spoke to my surgeon. My surgeon acknowledged that it was uncharted territory and agreed to do a staging laparoscopy to see if I had cancer hiding anywhere else, thankfully the tests came back negative.”
In light of these results, Sandra’s surgeon agreed to operate on the condition that Sandra wait 2 months and undergo another PET scan 9 days prior to surgery to confirm that the cancer had not returned to her lymph nodes. While the cancer had not returned to her lymph nodes the primary tumour had grown 1.5cm, it was very aggressive and ready to spread.
Surgery goes ahead
On the 17th of November 2020 Sandra had a distal pancreatectomy and splenectomy. The surgery took place in the nick of time as the tumour had just started to spread into the lining between Sandra’s kidney and small bowel. The surgery was a success, with 6.5cm removed from her pancreas and to date Sandra has not become a diabetic but still needs the digestive enzymes.
3 months after this surgery Sandra had her first PET/CT scan, and the results that came back were not as hoped, “I had four tumours, they had grown in 4 separate segments of my liver. I was obviously devastated to the core”.
After receiving this news Sandra made the decision to change oncologists, she believed that she needed people around her who were positive and focussed on the best possible outcomes. Her treatment continued and after a month of treatment Sandra requested a CT scan as motivation to continue her treatment.
“I started on Folfirinox fortnightly treatments. I did not handle it well and was sick for 24 out of 28 days. I asked my oncologist for a CT scan as I needed motivation to go on. If I was going to feel this bad, I needed to know it was worth it.”
To everyone’s amazement the CT scan revealed that the tumours in Sandra’s liver had resolved and could no longer be seen. This provided Sandra with the motivation she needed to continue with chemotherapy in the hope of long-term remission. This treatment is ongoing, and Sandra is hopeful that her CT scans will continue to come back clear. Sandra also credits her ability to get through 31 rounds of chemotherapy to the additional allied health and complementary therapy support has received through integrated oncology naturopathy, massage, acupuncture, and regular exercise.
When looking back at her own experience, Sandra wishes that she had pushed her GP harder to order more tests and scans. “If there wasn’t a clear answer then it should have been investigated. If my sugars changed out of the blue, it should have been investigated”.
Hope for the future
Sandra’s hope, other than for the successful development of early detection testing, would be to empower GPs, and ensure that they have the knowledge they need about the signs and symptoms of pancreatic cancer and other upper gastrointestinal cancers, to feel confident in their investigations and to recognise any early presentations of the disease, which can often have significant impact on outcomes for patients.