Beating bowel cancer together

Anisha Patel, Surrey

I was diagnosed with stage 3 bowel cancer in September 2018, aged 39.

I’m a GP with two beautiful children aged 6 and 7. My husband is a consultant Gastroenterologist and one of the regional leads for the UK’s bowel cancer screening programme. He spends most of his time trying to diagnose bowel cancer at an early stage in patients of current screening age.

Being a GP, one could say I should have known better. But I felt surely my symptoms could have been attributable to piles and IBS. I’m very fit and healthy, with no risk factors and no family history of any cancer. I didn’t feel unwell but looking back, I probably had what I thought were new-onset IBS symptoms for the year before my diagnosis - constipation requiring laxatives intermittently, some urgency in needing to go to the toilet, and occasionally some fresh blood on the toilet paper, but since childbirth six years ago, a little blood every now and again on the toilet paper from a pile I thought I had was not unusual.

Tiredness was also a feature, but I expected nothing less as a part-time GP, being mother to two energetic children, running a household and quite frankly I can’t remember the last time I wasn’t tired. Gradually over the last four months or so, I started to experience an increasing feeling of incomplete bowel emptying after I’d gone to the toilet, the blood became more noticeable, initially on the paper, but then in the pan, and in July 2018 my bowel habit was, for want of a better expression, frankly explosive. I finally spoke to my husband about my symptoms as I felt that things weren’t settling. I knew something just wasn’t right, and he suggested I should get checked by a GP.

I went to my GP, and was given suppositories to treat presumed haemorrhoids and laxatives to treat constipation. I remember saying to the GP as I was leaving, “I’m sure it’s nothing”, but was duly told to report back after two weeks if things were no better. The symptoms then seemed initially to settle somewhat, but four weeks on, it was clear that all my symptoms, especially the bleeding, were in fact becoming much worse.

I began to suffer panic attacks at night, and I didn’t sleep properly in the weeks leading up until the op. The cumulative exhaustion proved very limiting, and before long I had to stop working.

I went to the GP soon after and was then referred to my local hospital along a two week suspected cancer pathway. Blood tests at the time also revealed I was anaemic, but I had had problems with anaemia on and off since childhood. I was seen by a consultant within five days of my referral, who also didn’t feel cancer was high up on a list of diagnostic possibilities, given my age and lack of risk factors, but felt I definitely needed to be checked further.

On September 21 2018, the day of my colonoscopy, I will never forget seeing the cancer on the screen, presented in high definition in all its glory. The room fell silent, and my world crumbled. In rapid succession soon afterwards, I underwent a variety of further investigations. First, I had a staging CT scan to look for liver and lung metastases which I didn’t have. I had also been experiencing sciatica for several weeks prior, with no previous history of any similar symptoms. Sciatica can be a feature of rectal cancer, so obviously we were concerned that the tumour may have spread to my spine.

It felt like the longest four days of my life waiting to get an MRI scan of my pelvis and spine to assess the situation further, and thankfully there was no evidence of spread - but I did have a prolapsed disc to add to the list of diagnoses.

At that time I was told I had stage 3C cancer. Even 30 minutes after the bombshell was dropped, some of my first conversations with my husband were that I wanted two important things. First, to be open about my diagnosis, my symptoms and my treatment plan with our friends and families. And second, I also wanted to maintain as much “normality” in my life, especially for my children, my family and our friends. So with this in mind, I continued to make plans for my trip to Sierra Nevada with seven extremely supportive friends, to climb the highest mountain in Spain - Mount Mulhacen - the following week. I was determined not to let cancer beat me already or get in my way.

I finally received clearance to continue with the trip 12 hours before we were due to fly and it was the best decision I ever made. Although I didn’t summit to 3500m on medical advice due to the altitude and my anaemia causing me severe breathlessness, I completed most of the trek and reached 3250 metres above sea level. I knew on my return I had a much bigger mountain to climb so was determined to get this one under my belt beforehand!!

However, in the quest to carry on with ‘life as usual’ until my operation date, I began to suffer panic attacks at night, and I didn’t sleep properly in the weeks leading up until the op. The cumulative exhaustion proved very limiting, and before long I had to stop working. As I had not experienced a panic attack before, I initially thought I might be having a pulmonary embolism. And as a long list of other possible medical explanations for my symptoms started playing repeatedly in my head, I realised that my medical training might be a double-edged sword on my long journey ahead. After seeing the GP again, I spoke to the colorectal cancer nurse specialist, who has been fantastic. She signposted me to an amazing holistic centre attached to the cancer unit. They have been invaluable to me and my family. I had some hypnotherapy sessions too, which helped alleviate my anxiety symptoms.

In October 2018, I underwent an operation, initially an examination under anaesthetic, to assess whether my cancer was operable. I found contemplating the prospect of surgery tremendously nerve-wracking, and the uncertainty about whether my surgeon would be able to excise the cancer or not played havoc with my mind in the long days leading up to my surgical D-day, only serving to heighten my anxiety further.

On account of the size of my tumour, it also wasn’t clear-cut whether the chances of the tumour being removed surgically would be increased by a course of neo-adjuvant chemo-radiotherapy. The surgeon and oncologist involved both of us in the decision-making processes, and we decided to pursue the surgical approach first, as this might possibly spare me the chemo-radiotherapy if the tumour could be removed successfully at operation.

I was very scared as I went under general anaesthetic, not knowing what I was going to wake up to - the cancer gone and perhaps a stoma, or the cancer still there and needing chemo-radiotherapy... My tumour was (thankfully) deemed operable, and I underwent a laparoscopic anterior resection and the decision was made to give me a temporary ileostomy from a surgical safety perspective. I won’t lie that I have found having an ileostomy very difficult, from both a psychological and physical perspective. However I have been extremely well supported by the stoma nurses, and I have joined an online support group. But gosh, a stoma can be a handful!

Ten days after my operation, it was confirmed by the pathologist that the tumour had been successfully removed. One nearby lymph gland was involved with cancer which had spread from the nearby tumour but I was told to cancer was now a stage 3B as less lymph nodes were involved than originally seen on the scan. This means I will now need three months of chemotherapy to reduce the risk of the cancer returning elsewhere at a later date.

Being doctors ourselves has helped us at times, but has also hindered, as our knowledge of outcomes has increased our anxieties even further

After careful consideration, I have now also opted to have my stoma reversed prior to my chemotherapy (I’m told about 30% of patients opt for this instead of having it reversed afterwards). Psychologically, I personally think I will be in a better place without my stoma when my chemo starts. I accept the risk of a disrupted bowel function when the reversal is completed, which may be made worse by chemo-related diarrhoea, but I’ve weighed up all the pros and cons, and just hope that this is the right decision for me.

My husband and I, like anyone receiving such a diagnosis, have been put through a whole host of emotions these past few weeks. Being doctors ourselves has helped us at times, but has also hindered, as our knowledge of outcomes has increased our anxieties even further, when we momentarily think about worst case scenarios and cases we have seen, and overthinking symptoms and the hundreds of different possible causes for their presence.

Like many of you out there, who have ever had the misfortune of receiving life changing news, we have felt hopelessly lost, distraught, and directionless, and at other times inconsolably upset, angry, and irritated. We have experienced every phase of grief. For me, I probably initially experienced shock, then a denial / “burying my head in the sand” phase for quite a while, then a few days of anger and sadness, and then acceptance to get on with whatever treatment was deemed necessary. Those feelings still rear their head from day to day in any order or combination, and one of the hardest things is never knowing how you will feel when you wake up in the morning. I know deep down I so wanted “normality” in my life to continue, but I’m now starting to question, what is “normality”? The continuous uncertainty as to whether this cancer will come back? The inability to make plans for next week, let alone the future. The continuous hospital appointments and tests? The fear that every symptom you now have is cancer-related, causing health anxiety? The anxiety that this may be genetic and my brothers and children may be affected? The worry that your treatment may be altered due to the fact you can’t cope with it, or that your condition changes? So this is the new normal that cancer patients face.

Now that we are receiving treatment, we are much clearer in what we would like to do. I have talked a lot about creating positivity out of the negative scenario that we have had to face. We are closer as a family and see life in a totally different way now. We have stopped sweating the small stuff. One thing high on our agendas, is ensuring we help raise the awareness of bowel cancer in the young amongst both health professionals and the public, and helping to alleviate the frequently encountered stigmas surrounding this cancer by sharing our story and trying to stop people presenting late by getting checked early. We know there are so many inspiring people going through this out there who are championing this cause for the #nevertooyoung campaign, many of whom we have followed and who have helped us on our ‘journey’ so far.

In retrospect, I know I probably down-played my symptoms in terms of their severity and longevity (despite being a medic myself), as I repeatedly pondered the question “well, what are the odds of me having something serious?” Day-in and day-out at work, I see so many patients with variations of my symptoms at my age, who are investigated appropriately, who have normal test results and they are given the diagnosis of piles and/or IBS. So did this cloud my judgement of my own symptoms? I don’t know. Deep down, maybe I did know that something was wrong, and why “I buried my head in the sand” I’ll never know. I was probably just scared. But be certain of this - with the support of an amazing network of friends, family, and the rock that is my husband, I will fight this all the way with pure determination, grit and resilience, and will take whatever life throws at me and run with it as best I can.

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But we’re leading change

Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.

What are we calling for?

  • Improved clinical guidance and practice on bowel cancer in younger people
  • Improved identification of people with genetic conditions and access to surveillance screening
  • Improved information for younger people on bowel cancer symptoms

Back to younger people with bowel cancer  Share your story

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