Susan B's bowel cancer story (diagnosed age 71, QLD)

I have suffered from constipation periodically, ever since I was young, so I did not regard it as unusual. My father died of cancer in 1995 in the UK. He told me a few years earlier he had had some polyps removed but he had played down the seriousness of his condition when I spoke to him on the phone. I now know he eventually had open abdominal surgery but still not much more information than that. I had assumed his cancer started in his lungs because he was a pipe smoker.

No one ever told me he had bowel cancer – in the mid nineties I had never even heard of bowel cancer. I knew that my mother had Crohn's disease. When I had constipation, I thought I might have Crohn's too and believed there was no treatment to cure this apart from surgery so didn’t want a diagnosis. 

 My mother had been frightened she might end up with a colostomy bag - a terrible stigma in her view - and conveyed these fears to me. She might actually have had a better life with one, as the Crohn’s eventually made it difficult for her to venture out. I thought I could treat my gut problems with changes to my diet but probably did not stick to it well enough. 

After a bad gastric episode with frightening chest pains in 2011, my GP wanted me to have a gastroscopy and colonoscopy at the same time. I did not really understand why I needed a colonoscopy when my problem was reflux so I agreed to the gastroscopy only. I had a gastroscopy in 2011 in a private hospital clinic and was subsequently treated with Nexium 7 for Helicobacter Pylori. My experience of getting a gastroscopy was a bit off-putting and contributed to my reluctance to have a colonoscopy when it was suggested again.

Though a private patient, I did not meet my gastroenterologist – he was just a name on a form. When I arrived, I was taken through to a ward full of men to get changed into a theatre gown but then was told they had no bed spare for me and to go back to the waiting room (still in my street clothes.) When they eventually called me in, I was put straight on the operating table in my street clothes which I thought was odd as they had wanted me to get changed the first time. Also, the anaesthetist was pushing a too large breathing tube mouthpiece between my teeth and I was trying to protest because it felt as if they might break my front teeth but then I became unconscious.

There was no introduction to the doctors treating me and no reassurance - it seemed very brusque and impersonal to me and I am an anxious person who needs reassurance. The procedure was carried out successfully.

A year or so later when the subject of a colonoscopy came up again with my GP, I still refused but agreed to a regular, annual FOB [faecal occult blood] test. I had done the 60th birthday one and don’t recall getting a 50th one – perhaps they started at 60 back then. I bought one every year from about 65 on and it was always negative.

In October 2017, I returned from the UK to find a 70th birthday FOB test in my front garden. I had already done a [FOB] test in March that year but thought I may as well do another one. That test in October 2017 came back positive. I didn’t believe it and bought another from the chemist and that came back negative. I did not believe the positive result in spite of the fact I had had chronic constipation during my six weeks stay in the UK in 2017 as staying in the UK was often accompanied by this condition. I subsequently saw my GP after experiencing some discomfort in my breast – (I had avoided mammograms for four years.) I had a mammogram which came back clear, but my GP said I should have a colonoscopy since I had a positive FOB test.

I became very anxious about the whole situation and was having chest pains and had to have an ECG at the medical centre. I ran away in panic. My GP put a referral to a clinic in my bag hoping I’d reconsider. My reaction was partly out of fear but there were other contributing factors. One was worry about the flushing out of my microbiome – we hear a lot about this on science shows but most doctors and specialists don’t seem interested.

Another was that at that time there was no-one I could think of who I could ask to drive me home from hospital and stay with me overnight. I rang the clinic and several other organisations to ask what I could do about this but was not offered a viable solution. I had had this problem in 2016 when I had my wisdom teeth removed – one acquaintance had offered but then let me down at the last minute saying she had never agreed to stay with me overnight. Though I could probably have managed on my own overnight I wasn’t sure what to expect and was not comfortable lying about it.

In desperation, I asked someone I didn’t know very well and luckily, she was very kind and picked me up and put me up overnight. At the time of the colonoscopy suggestion, the only people I felt I could ask were either away or working. There seems to be an assumption that everyone knows someone who can be readily available for this responsibility. The older you get the less likely you are to have friends who can provide this service. Perhaps some people are better at asking acquaintances for help with such a personal thing.

I decided to see a naturopath and her regime had my bowels working as they should for a couple of months. In January 2018, I experienced diarrhoea and believing it to be a ‘bug,’ I went to the GP expecting anti-biotics. I saw a different GP to my usual one. He said I needed to have a colonoscopy. He had quite a ‘matter of fact’ manner and I felt unable to refuse but said I would like to meet the gastroenterologist for a consultation before the procedure as I did not like the anonymity of screening clinics. The gastroenterologist was very professional and friendly, and I felt confident in him.

I had already arranged a holiday in Tasmania so, still convinced it could be nothing serious, I booked to have my colonoscopy on 9th March after my return from Tasmania and he supplied a bowel cleanse kit and instructions for me to take home. During my holiday, I had unusual gut rumbling which I blamed on airline short- haul food – another “bug”? On the last day of my holiday, I had an embarrassing involuntary bowel movement which I did not even feel happening. I was finally convinced I had a problem except I was now convinced I had Crohn’s disease like my mother.”

“When I returned, I did the bowel prep which was not so bad as people often make out and had the colonoscopy at a private hospital where my experience was far better than before. Though still a production line – it felt better organised and more personal, the medical staff were friendly, and they found a smaller mouthpiece after I explained about my narrow jaw opening. The procedure went smoothly for me – I was unaware of anything except feeling the last few centimetres of the endoscope exiting just as I regained consciousness.

The results, however were not good – I can’t locate the report at the moment, but basically the gastroenterologist removed one pedunculated polyp in my descending colon but was unable to remove another large adenomatous polyp with tendrils below the bend between the transverse and ascending colon (the hepatic flexure.) This had grown into my bowel wall and was almost blocking my bowel. I think he had trouble getting past this or didn’t get past, but he noted, in medical terms, that my ascending colon was not in good shape. He would have taken a biopsy of this.

I was referred to a colorectal surgeon and can’t remember the exact sequence of events but I had a CT scan with contrast then a liver biopsy which indicated that the cancer had spread to my liver and there were multiple tumours in my liver which were inoperable. The colorectal surgeon was very professional and friendly and drew diagrams for me and explained what he thought I needed to know but it was all a lot to take in especially with my poor hearing and still a very daunting prospect for me in spite of it being all in a day’s work for the surgeon.

He was very professional, and I had confidence in his surgical expertise and experience but the idea of removing half my colon seemed horrendous to me and I worried not just about the operation but how I would function with only half a colon. I watched such a procedure being performed on ‘You Tube’ by ‘A Brisbane Surgeon’ – (probably not to be recommended for prospective patients.)

The seriousness of my condition had not fully penetrated my understanding at that stage. Once cancer was confirmed I was referred to an oncologist. He explained about the tumour which was almost blocking my colon and how the cancer had spread to my liver and seeded several tumours there. On my second appointment he asked me if I wanted to have chemotherapy or surgery first. I didn’t know - I am not an expert.

Chemotherapy seemed less irreversible to me so I chose that wishfully thinking it might preclude the need for surgery. I could not imagine how I could function with only half a colon and the idea of them stapling what was left to my small intestine seemed bizarre – the surgeon could not tell me what the staples are made of. I could not even imagine how that could be done. My friend’s daughter is a GP and came with me to my appointments. After we left, she asked if I wanted to consider having surgery first while I still had a good immune system and the healing process would be better. Probably for legal reasons, doctors have to allow the patient to make these decisions, but we don’t necessarily know what the best option is. I changed my mind and had the surgery first on 19th April.

The operation took about two and a half hours and was successful – the surgeon removed half my colon and several lymph nodes and although I had signed consent for open abdominal surgery, he managed to do it all laparoscopically - 12 months on you can barely notice the 4 small scars – even the one straight through my belly button. To my surprise, I still have a belly button. When I came round I was aware of wearing what I decided to call my “Wallace and Grommet trousers” i.e. a medical device to keep the circulation going in my leg to minimise the risk of blood clotting.

I was in hospital for 8 days and received some Physiotherapy to assist my recovery. There was a fair bit of intermittent, sometimes quite intense, abdominal pain. In hospital I was given pain medication but after going home I used only paracetamol (Panadol) and a hot water bottle for pain relief. There were some days when the pain was worse than others but it was bearable and though my GP prescribed endone, I kept these as “insurance” against unbearable pain but never actually took one.

On 8thMay I had to have a portacath (‘Power-Port’) fitted below my right shoulder in preparation for Chemotherapy. Again, this seemed a somewhat scary prospect just two weeks after my major surgery and I had little idea what exactly to expect and had not met the surgeon who was to operate. It was supposed to be day surgery and I was expecting it to be at 1:00 pm and I was asked to check in to admissions at 12 noon. As I had to have a scan done in the morning at 9:00am, and because I was fasting, I went straight to admissions at about 10:00 am and was gowned up and then sent back to have the scan redone because the markings had rubbed off.

Then I sat in the surgical waiting room all day still having some pain from the abdominal surgery with no food or water or information updates and pretty much ignored all day.

My friend rang at 5:30 pm to see if I was ready to be picked up. I then asked the nurse at the desk what was happening and learned I was last on the surgical list and could have had some water earlier, but it was too late now. I said I just wanted to go home as I had a headache and was exhausted and I feared the surgeon might also have had a rather long day of it, but then the doctors persuaded me they were still up to doing my surgery and found me a bed for the night . I did not see this surgeon again but in the morning, I found some brochures about the device on my locker which, fortunately, I realised were for me.

It was not nice discovering I now had this ugly lump under my skin and a scar, but I’ve got used to it and it has become less tender as it has healed. (I tell people that I am about to give birth to an alien with several rows of teeth.) Its purpose is to save my veins when I have chemo and it enables take home chemo so was for the best. I left hospital and went straight to the chemo induction session. I began palliative chemotherapy on 14th May. The tumours in my liver have shrunk to about a third of their original size but I have to continue with fortnightly maintenance chemotherapy and regular CT scans indefinitely. I still have hair, but it is very thin and dry.

My wait was self-imposed, as I prevaricated for a long time then wanted to meet the gastroenterologist beforehand and I also had a trip booked to Tasmania. Having private health insurance, I could have had a colonoscopy within about two weeks of a referral from a GP if I had gone to a specialist clinic.

I didn’t get a colonoscopy sooner because of fear and lack of knowledge about colon cancer and thinking I was not likely to have it. When you read the risks of having a colonoscopy you learn there is a chance of getting a perforated bowel and that is worrying but really this is quite rare. All surgery and procedures have some risk and doctors are obliged to advise you of these.

I sometimes had a problem finding someone to drive me and look after me overnight, so this was a disincentive to having day surgery. At my age, not all my friends drive, younger ones are still working, or they are away on trips sometimes or have family responsibilities. I’m sure there must be provisions for people like me, but I was unable to discover any at the time apart from employing a private nurse at $75 per hour.

I used to be anxious about anaesthesia and ‘going under’ after unpleasant experiences with nitrous oxide and ether as a child. I’ve had quite a few operations and procedures since then and modern anaesthesia or sedation is not so unpleasant but those memories, particularly of the nitrous oxide, still produce unjustified apprehension.

I think doctors need to recognise when their patients are scared and talk more about what’s going on. Even now, getting chemo., I only have a limited understanding of my treatment. I see the oncologist for just a few minutes each fortnight and sometimes have difficulty hearing what he is saying due to my hearing loss. I am not complaining I understand that specialists are very busy and don’t have a lot of time to spend with each patient.

They have to stick to their schedule and be efficient in time management and, most importantly, order the appropriate treatment for each patient. I think some people are more at ease about asking questions and probably get given more information. A friend of mine was given an information session before getting a portacath but perhaps my circumstances were too urgent for that.

I used to be hesitant about screening because I thought it was mainly about making money for private health providers and was surprised to learn how common bowel cancer is. Now I’m really grateful for the medical treatment available to me. We are very lucky in this country - especially if we are city dwellers. I’ve also learned not to be such a wimp about medical procedures: no-one enjoys them, but it is something that most people will have to go through at some stage of their lives.

Bowel Cancer is something that is not talked about. My family didn’t talk to me about it, but I don’t think they got much information themselves. I thought my father had lung cancer because he smoked. I didn’t know he had bowel cancer. I had no idea I was high risk. I did not understand about metastases and that once bowel cancer has spread to other organs the prognosis is poor and chemotherapy can only try to control it for as long as possible. Symptoms are not evident in the early stages and may be hard to recognise even after the disease is well established and may not even be picked up on an FOB [faecal occult blood] test.

Early diagnosis is vitally important and at present this requires a colonoscopy to begin with. In the future there may be other less awkward and off-putting options, but they are not here yet, so - get a colonoscopy. As for the FOB test, I was surprised by how many people find this disgusting. I never had an issue with this though I don’t try to follow the instructions about fiddling about in the toilet as I worried that my rusty steel water pipes might give an incorrect reading. I find a clean cardboard container which can be emptied into the loo after you have your samples and then burned is much simpler.

Bowel cancer is serious, don’t bury your head in the sand – if you believe all is not right with your bowel go to your GP. It may not be cancer but don’t take the risk. It’s only a day out of your life to potentially save years of your life.

The colonoscopy was not as bad as I thought it would be. If I’d known what it was really like, I would have had one sooner. Put your fear aside and have a colonoscopy.

I have no complaints, I’m very grateful. It was just my fear and anxiety about medical procedures, the alarming things in the lists of risks* and having to find a driver and overnight carer that held me up. (*They have to warn about these risks but generally the risk is low.)

I hope I can be of some help to people like me who might be afraid or think it won’t happen to them, like I did.

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