Ali Stunt, Founder of Pancreatic Cancer Action, diagnosed 2007
I was diagnosed on 30th August, 2007 with pancreatic cancer – an adenocarcinoma in the tail of my pancreas. I was 41 and up until a month before, I did not have any recognisable symptoms – being fit & healthy (or so I thought), I exercised regularly, I did not smoke and I drank in moderation. On the 8th September, 2007 I had a distal pancreatectomy and splenectomy during which they got out all of the tumour they could see. Luckily no metastases were present and only one of my lymph nodes was affected.
I am married with 2 children who at the time of diagnosis were 14 and 10.
At the beginning, even though I was in considerable pain, it was not considered (by the collection of GPs I saw on a more or less weekly basis at my local practice) that I had anything more serious than dyspepsia or even irritable bowl syndrome. An after-hours emergency doctor (who had to give me morphine for the pain) came the closest by suggesting Pancreatitis. I do not in any way blame the GPs who had to eliminate the most obvious causes for the abdominal pain I presented with; I am not over 60, I do not smoke, I don’t have a family history of pancreatic cancer (although my father died of a brain tumour aged 50) and until 4 weeks before diagnosis I was very fit and healthy. There is currently no known test for pancreatic cancer outside CT scanning and the Ca19-9 marker test that I am aware of, although I know that research is ongoing. Even if there were, the GPs probably would not have thought it relevant to me.
A concerned locum GP (who had all the details of the previous night’s visit by the after-hours service) discussed my potential admission to the Surgical A&E department with them by telephone while I was sitting in her surgery, and between them they decided I wasn’t in enough pain to warrant their attention. A few days later I ended up in A&E (because of the pain) on a bank holiday only to be sent home with pain killers and told I needed a scan which I couldn’t have because it was a bank holiday and no-one was around to operate the machine.
I think I am one of the lucky ones. This is probably due to the fact that I persistently visited the GP surgery and because I have private health insurance through my husband’s work. The same locum GP wanted to set up an ultrasound appointment. However, on the NHS it was going to take 4 weeks before I would be seen. With the private health insurance I was able to meet the consultant surgeon within a couple of days. He admitted me to hospital straight away, I had all the tests done and was lucky enough to be operated on the following week. I don’t want to think about the possible outcome had I waited another 4 weeks for a scan.
Thanks to an excellent surgical team here in Surrey, my operation was successful. It was not until after the surgery that I discovered that less than 10% of people diagnosed with pancreatic of cancer (especially in the tail of the pancreas) can actually be operated on.
I recovered very quickly from the surgery – I was lucky not to suffer any complications, was home within 2 weeks, was out shopping with girlfriends after 4 weeks and back doing the dreaded school runs after 6 weeks (once my insurance company would let me drive again). An initial CT scan after surgery was clear and Ca 19-9 levels normal.
A week after hospital discharge I was discussing options with my consultant medical oncologist. It appeared I didn’t have many. Either I do nothing and the cancer could come back (or it might not) or I could have chemotherapy which may or may not prevent the cancer coming back. We discussed various clinical trial data – none of which gave any conclusive evidence that there is any one treatment that is particularly effective, but to me it seemed better to be doing something than doing nothing. On the advice of my medical oncologist I then embarked on 6 months of chemotherapy treatment – each cycle consisting of 3 weeks of a combination of Gemcitabine and Cisplatin once a week, every week, followed by a week off.
As predicted by my medical oncologist, I tolerated the treatment well. Very well in fact. I had nausea after the very first treatment and amazingly (especially considering the weekly doses of Cisplatin) absolutely none after that and consequently developed a huge stockpile of anti emetics (anti-sickness drugs) that were not needed. I would feel absolutely knocked out the evening after chemotherapy, like I had been run over by a truck. I would often get cold and have a headache. I coped by eating a light meal, taking a couple of paracetamol and going to bed early with a hot water bottle. By the following morning I would be feeling tired but all the ‘nasty’ side-effects experienced the night before would usually have gone and I would be up doing the school run almost as if nothing had happened! In fact the only time I experienced really nasty side-effects was when my neutrophils became too low and I had to forego the chemotherapy and instead was prescribed a G-CSF drug to stimulate the bone marrow to produce more white blood cells. This caused the most awful bone pain imaginable (not everyone suffers this I’m told) and to add insult to injury I had to self-inject the stuff for 5 days.
One of the positive things about my chemotherapy drug combination was that I didn’t lose my hair. It thinned, but not so as anyone else but me (and close friends) would notice, and still having my hair meant that in-between treatments I looked ‘normal’ – I didn’t look like a cancer patient. That for me was extremely important. Vain, I know, but it meant I could go about my business without people knowing I had cancer – a real psychological boost. From the first cycle of chemotherapy my periods stopped and a few months later I developed menopausal symptoms in the form of hot flushes. I didn’t (knowingly at least!) have any other symptoms such as mood swings. A couple of months after chemotherapy, my periods resumed again, but they are still a little erratic, so I am not sure whether the menopausal state is a temporary or permanent fixture. Luckily for me, I have already had my children and don’t desire any more.
Once the chemotherapy regime finished, I had a month’s break including a well-earned holiday in the sun for all the family. I was then referred to a clinical oncologist who prescribed a 6-week daily dose of chemo-radiotherapy. Even though I had tolerated the chemo really well, I now felt well . I had just had another clear CT scan and normal cancer markers and the thought of radiotherapy plus more chemotherapy sent me into a bit of a spin. My medical oncologist told me he thought it would be good to give it a go even though many a clinical study had little proof that adjunct radiotherapy for pancreatic cancer was at all effective – with one study actually going as far as stating that there was a detrimental effect on survival rates! I just couldn’t see the benefit and really, at that point, I did not want to go through with it.
On the advice of my oncologists and my husband threatening me with “if you don’t have this treatment I’m going to kill you” (he was joking, but only just) I did go through with the chemo-radiotherapy. I had to have a Gröschong line fitted – a tube that went into my central line via holes in my chest through which the chemo-pump containing 5-FU was attached. I hated that pump. I hated the tubes going into my chest, I hated the fact that I had the most unattractive ‘bum-bag’ in which to carry the pump clipped onto my jeans belt (to my knowledge Louis Vuitton don’t do them). Essentially I was carting around medical paraphernalia 24/7 which brought attention to my condition. After about 3 weeks, my husband started naming the pump ‘Eric’ – probably to wind me up (it worked) – I didn’t want to anthropomorphise that device, I just wanted to get rid of it. I just wanted to go back to being normal.
Initially, the radiotherapy wasn’t that bad. The staff operating the linear accelerator at the St Luke’s Cancer Centre, Guildford were absolutely fantastic; friendly, professional, they completely put me at ease. I was only on the machine for 10 minutes at a time, but it seemed longer. Trying to keep still on the machine was really the most difficult part of the process for me. What they don’t prepare you for is the waiting area where people sit in their gowns awaiting their turn on the machine. The area itself was fine, some of the patients though (generally men of pensionable age) seemed unaware that the gowns don’t cover your modesty completely and I found myself ‘exposed’ to a diverse range of men’s underwear choices, some more tasteful than others and one was worn back to front!
After about 3 weeks of treatment, I began to feel the side-effects. Extreme exhaustion was the most overriding one; I even fell asleep at the dinner table one evening (soon after, all dinner party invitations dried up). As my abdomen was receiving most of the radiation I developed a rather embarrassing side-effect; belching – it came out of nowhere and was very loud at times (very unladylike) but it amused my two boys no-end. During the last week of treatment I developed some mild ulceration to the stomach which left me unable to eat – but that, after finishing the radiotherapy and with the assistance of medication, soon cleared up. I was liberated from ‘Eric’ and promptly left for another holiday in the sun (they say vitamin D is good for you).
Six weeks after the chemo-radiotherapy I had another CT scan and more blood tests – all were normal and showed “no evidence of disease.” Relief and elation rolled into one. My clinical oncologist happily passed me back to the medical oncologist who arranged another scan at the end of November. Mercifully, both the CT scan and the blood tests came back normal. It was weird not having any more treatment. In a funny kind of way I felt comforted by the fact that while I was undergoing treatment, I was being proactive, I had weapons with which to fight any unseen cancer cells from developing tumours. Now I just have to wait it out – life being compartmentalised into the time periods in-between CT scans.
The physical scars have healed and I live my life more or less as I did before. I have been left mildly diabetic. The 20% or so of pancreas I have left is going like the clappers, ably assisted by Gliclazide (to stabilise blood sugars). I still have a small problem with peripheral neuropathy – a hang-over from the Cisplatin I’m told- which causes the ends of my fingers to go numb (and eerily white) when I am cold.
Over the course of a year, I lost 3 stone and I am now a UK size 8-10 (down from a size 12.) Since finishing the last course of treatment, my weight has stabilised. I seem to be able to eat anything, albeit in small quantities, except red meat (I don’t digest this very well) and refined sugar/sweets/chocolate/cakes (due to the diabetes.)
I admit that I am basically a strong person and most of my friends and family will attest to me having what can only be described as pig-headed stubbornness at times – sometimes not a very likeable personality trait – but it has got me through the past few years. What has also got me through is the unconditional love and support of my husband, my boys and my many dear, dear friends.
I haven’t sought alternative therapies, nor bathed in antioxidants. What I have done is put my faith in the fabulous, wonderful surgeons, oncologists and nurses I have met along the way, gritted my teeth and just got on with it.
Ali Stunt, January 2011.