"Cancer diagnosis and incorrect MRI results"

I am writing to share my recent experience at CGHS.

Late last year I had an appointment with a Gastroenterologist who referred me to CGHS for a Gastroscopy and Colonoscopy as a Category 2 patient. A few months later, I had not heard anything from the hospital so followed up as my symptoms were worsening. I was advised then that I had been on the waiting list for just over 40 days (despite being referred over 100 days prior) and it would be at least another 60 days before I would receive a call from the nurse. What I am struggling to understand is why I seemingly only made it to the waiting list early this year, when my referral was sent late last year.

Last month I presented to A&E at approximately midday with excruciating stomach pain. On this occasion I sat in the waiting room for 6 hours, in agonizing pain with minimal pain relief.

I saw a Dr who I felt minimized my symptoms and was intending to send me home with pain relief to await my procedure a few weeks later. I had been experiencing intermittent pain for several weeks but this was on a different scale and knowing in myself something was not right I insisted on a CT scan before being sent home.

4 hours into my wait my pain was increasing and becoming unbearable and a friend supporting me had requested more pain relief which I did not receive after waiting more than 2 hours.

In the evening I was called into the triage room expecting that I was finally going to receive the pain relief I had been waiting for. I was met by the Dr I had seen earlier along with a second Dr. I noticed they both stood in uncomfortable silence until who I assume was the senior Dr stated “they are your patient you tell them”. The Dr went on to advise they had bad news and that the CT scan showed what they believe to be cancer in my bowel and stated that a surgeon would be in to see me soon.

I felt the way in which this news was delivered and the environment I was in was entirely inappropriate and showed an absolute lack of empathy for the life changing news that I was receiving. I believe that I would have been sent back into the waiting room without the intervention of my friend who insisted on us being provided with a private space so that I could process the diagnosis and manage the shock. 

I was admitted then in preparation for a colonoscopy the following day. The following morning I felt I was well supported by the staff on the Surgical Ward as I underwent the bowel prep and had the procedure late that afternoon. I stayed the night and was discharged the following day with a script for 10 Endone (I believe nowhere near sufficient for a 4 day long weekend) and a referral for a PET scan.

When I got home I opened the PET referral and read that they were investigating a likely malignant tumor in my bowel and possible Liver METS. Reading this referral was the first time I was aware that there were suspected Liver METS, at no stage did anyone discuss this with me in person. I feel to read this on a public holiday in my home is totally unacceptable and led to significant anxiety and distress over the long weekend. I believe I should not have had to find out that I have potentially life changing Liver METS on a piece of paper.

Several days I presented to A&E again in severe pain. I saw a Dr who made me go through my whole 18 month history of bowel issues despite already having received a cancer diagnosis a week prior and advised that I just needed to continue to take endone. I again sat in the waiting room with, I felt, insufficient pain relief and was advised I could not have anything more as there was not a bed available.

A friend was advocating for me as I was in too much pain to effectively communicate for myself. My friend asked to speak with the doctor and requested pain relief and another CT scan to identify or rule out a potential bowel obstruction (a complication I was advised was likely to occur given the location of the tumor).

The doctor advised my friend that they had offered me pain relief and I had declined – I believe this is an outright lie. The doctor also advised a CT was not necessary as they could hear some bowel sounds. I was placed in a bed and provided with additional pain relief and an Xray (not CT) was done. The surgeon came to see me and advised the Xray was clear and there was no point doing a CT as things would not look different a week later. I was discharged with additional Endone to be taken as an increased dose. I felt extremely dismissed.

I spent the next day in significant pain and on the following day my partner called an ambulance as the pain had become so unbearable. With no available ambulance transport my partner drove me. On arrival the triage nurse Cass was fast to act. A CT scan was ordered and a bowel obstruction was identified. It is likely this obstruction had been there since my presentation two days prior but as my request for a CT was seemingly dismissed this was not identified. 

I was admitted and underwent a bowel resection the following morning. I had a myriad of surgeons come and see me and it felt like there was no consistency and I was not receiving any information which caused a lot of unnecessary stress.

I am wanting to understand what happened with my referral, the wait list and the delay in my procedure being booked as this  has potentially led to an incurable spread of disease that has now changed my future.

I would welcome the opportunity to discuss further.

Whilst in hospital had an MRI on my liver to investigate possible METS that showed on a CT.  I was advised by my surgeon afterwards that the MRI was clear and there was no spread to liver - what a relief.

After discharge I opted to have a PET scan as an additional precaution. The PET showed liver metastases. 

I had an appointment with a liver specialist in Melbourne recently who advised that the MRI in Sale had been “stuffed up” and the incorrect sequences were taken resulting in the cancer not being detected.

Had I not advocated for a PET scan this would have gone undetected.

I recall the specialist was also alarmed that I was not discharged with the standard 28 days of clexane. I queried this on discharge as I have a history of DVT and was advised by the surgical registrar that it was not necessary.

I believe this is yet another example of an apparent lack of care that has placed me at an unnecessary risk of further complications.