I was diagnosed with advanced rectal cancer in January 2016 (T3 N0 M0). My local surgical team (in a major South West hospital) said the only treatment was the “gold standard” abdominoperineal resection (APR), in which one’s bum is cut out, sewn up and a permanent stoma (poo bag) is created on one’s tummy (colostomy). The diagnosis was a terrible shock. But the treatment proposed was an even greater shock. I had been picked up through my first bowel cancer screening when I hit 60 in November 2015. A darling little pack fell through my letter box a few days after my birthday – Happy Birthday from the NHS! And then, I played with my poo for three days and send it off to be examined. I had no symptoms, although I did feel very tired, but put that down to looking after my husband, who had radical surgery for prostate cancer in December 2014 and still hasn’t recovered from the side effects.
Once I was in the system, the MRI, CT scan and colonoscopy were quickly organised, and the diagnosis delivered. I did not have a PET scan at any time. I did not see cancer as a definite death sentence. But when I was given the diagnosis – over the phone by a colorectal nurse who had just come out of the MDT meeting – the Angel of Doom told me “time is of the essence” and that I would die if I didn’t have the APR surgery (I was told this several times). Later questioning revealed that the cancer was slow growing and I did have time to contemplate my options, although I was not given any options. I was given a date in March 2017 for surgery, which I refused because I needed more time to think and research. My second date for surgery was 28th April.
I had cancer before – in 1999 I had a hysterectomy for ovarian cancer, which was also a shock – I’d gone in thinking I had an ovarian cyst. The surgeon talked to me about the possibilities, and as I’d had my children, and was not planning more, I had already given permission for whatever surgery was required.
Normally a very pragmatic and positive person, I went into freefall after the diagnosis of advanced rectal cancer (T3 N0 M0). For the next four months, all my many appointments found me weeping whilst trying to have a sensible conversation. My husband came to every appointment. I was referred to the Psychological service and went to two appointments. The first one was more about me outpouring my fears, both about the surgery and about the team’s response to me if I refused the surgery. The second appointment gave me the clarity to contact Professor Myint (at Clatterbridge) directly and to follow through on refusing surgery until he had a chance to review my case.
My question was this: Is there any alternative to this surgery that we can try before I have my bum cut out – after all – there is no coming back from that.
I demanded to see different surgeons to discuss their specialist ops – a couple of other ops are available, but clearly not for me. For me, I was told, only the “gold standard” would save me from death and give me the “best chance” of a cure. Even the oncologist, who I also had to demand to see, kept to the party line. Chemotherapy and radiotherapy would only be palliative, whilst I got worse and died. I felt bullied and unsupported. Having discussed the operation, and done a lot of research about it, I knew that I would not be able to come to terms with it unless I had investigated everything else. I wanted to be treated like a rational adult, and I wanted to discuss the options, without being told that I would die if I didn’t have the APR surgery. People kept on telling me that the treatment route was my choice, but this was not my experience. I was given only one choice, and it was very hard to sit across the desk from the might of NHS skills and opinions and say “no”.
I was frightened, angry and despairing. The colorectal specialist nurses were awful and bullying (Hit by a Bus and the Angel of Doom). I was shouted out about doing research on the internet for alternative treatments, being told, more than once, that all the information on the internet was rubbish and out of date. I was told that having the APR surgery was like being hit by a bus at 40mph and it took a long time to recover. I was told sternly that I had to trust the surgeon. Trusting the surgeon was never the problem – he is one of the top surgeons in the country for APR surgery. I just didn’t want the surgery until other things had been tried. It is final, mutilating and life changing, and I didn’t want it unless it was truly my only option.
I also approached Macmillan about treatment choices but was very disappointed in their response. I had always thought they were there to be “on the patient’s side”, but it felt very much that they “toed the NHS line” and were not open about the Papillon treatment.
Every time I went to an appointment to ask about a different treatment, I was refused and my research poo-pooed (ha, ha, ha, ha). In every appointment there were visiting doctors and other interested parties, so eventually I felt as if I was being set up as a training opportunity. The APR surgery is huge and dangerous and takes about 8-12 hours. It requires two full surgical teams, who can swap over when someone gets tired or part of it needs to be done by someone else. Very expensive.
All of the treatments I asked about were standard NHS treatments. I was not trying to be cured by bathing in baked beans and pushing daisies into unmentionable places. Yet that is how I was made to feel.
During this time I did a lot of research about having a colostomy. Given the alternative for me – death by cancer – I admire everyone who has had it and says it’s not so bad, you get used to it, you just have to change your routines and make new routines etc etc etc. I went to see the stoma nurses during this time and found they were the only people to agree that this was a dreadful operation. They were also hilarious and I knew that if I ended up with a poo bag then I would be safe with them. They were the only bright moments in a dark four months.
Eventually I found out about the Papillon treatment, and Professor Sunny Myint. In 1992 he went to France to be trained in this procedure, then set up the first Papillon Suite at the Clatterbridge Cancer Centre on the Wirral. He has been offering this treatment since 1993, on the NHS, so it can’t be said to be whacky or weird. It is a treatment specifically for rectal cancer, where the probe is put into the rectum and the tumour directly zapped by radiation. It is usually held up to be a treatment for T1/T2 tumours, or for people very much older and frailer than me – people who might not survive the APR surgery. I am pretty appalled that because I was younger (60), and in other ways, quite healthy and robust, that it was deemed suitable to condemn me to mutilating surgery. I read the book “Saving My Arse” written by Mark Davies – a young man also threatened with APR who found Professor Myint and was cured.
I asked three times to be referred to Professor Myint – the surgeon refused me twice and my GP refused me once, asking me why I was upsetting myself and I should calm down and get ready for the surgery. I don’t see that GP any more.
Given that I was being refused at every turn, I emailed Professor Myint myself and asked if he would check my medical records and tell me if I was a suitable candidate for the Papillon procedure. He emailed me back and said yes, but I would have to get officially referred by my medical team. He also said that it was my right to get a second opinion. So – four days before my scheduled APR surgery (28/4/2016) – I forwarded Professor Myint’s email to the colorectal nurses and said I was refusing surgery and would they make arrangements for my medical records to be sent to Professor Myint. They did this after I had chased them a couple of times, and I felt like I was a pariah. I was quite frightened that if I did need to go back to the surgical team then treatment would be withheld because I was “a difficult patient”.
I was given an appointment to see Professor Myint about three weeks later, and after a good (and uncomfortable) rummage he declared he would do the first Papillon treatment there and then. Afterwards he explained that because my tumour was T3 I would need chemoradiation at my local oncology hospital, combined with another three or four Papillon treatments. So part of my treatment (Papillon) was done at Clatterbridge Cancer Centre on the Wirral, and the chemoradiation was done in my local cancer centre.
That was in May 2016. I had chemoradiation in June and July – oral chemo and a daily visit for radiotherapy for 5 weeks. It was pretty gruelling and I was really unwell towards the end. However, I was hugely cheered up by the fact that the alternative was a sewn up bum, and I had a very good chance of avoiding that. Each time I went back for another Papillon treatment Professor Myint showed me the images of the tumour, and it was shrinking at a rate of knots. By September I was in partial remission, and by December I had a “complete clinical response”, which means that the tumour had shrunk and seems to have disappeared completely. I did not need surgery. I am in remission, I still have fully functioning internal pipework and I have a 75% chance of being declared cancer free in few years’ time. I’ll take those odds.
Now I have three monthly MRIs, six monthly CT scans and three monthly sigmoidoscopies, done alternately at my local hospital and then at Clatterbridge. So far they are all OK, and the biopsy was clear too.
The person doing the sigmoidoscopies in my local hospital is the surgeon who was going to do the APR (the Diva). He insisted on doing a biopsy, despite being told by Professor Myint and the oncologist they were not needed at this point. He also said he wanted to give me a general anaesthetic to do the biopsies (has anyone else ever heard of that??) and we disagreed about that because I refused. I asked if it was going to be any more uncomfortable that the original biopsies – he said no, but it was only a light general anaesthetic (!!!) and I would be able to go home the same day. I wondered what he was on. He may be a good surgeon (zero deaths for the APR surgery) but he is one of the worst Divas I have ever met. Definitely in the “god complex” club of surgeons. Because of the unwarranted biopsy, I now do not have a post treatment scan that shows just the healed cancer area. Scar tissue was caused by the biopsy, and of course, there is scar tissue caused by the dying tumour. So whenever I now have a scan there is always the shadow of scar tissue which MRIs cannot distinguish from the early stages of a tumour. By the way, my oncologist trained with Professor Myint in 1999 in the Papillon procedure, but because the local NHS Trust refused to fund the machinery we do not have a Papillon suite in the South West of England, and the oncologist has to toe the line of surgical intervention for rectal cancer when Papillon treatment would save money and the risk of major surgery, and the life changing effect of the APR. Following my treatment however, he was completely different – like Jekyll and Hyde. He was the charming, talkative and informative oncologist I had been led to expect from my research on the internet. At least he had the grace to be pleased that my “non-standard” treatment was successful.
So – rage, fear, sadness, uncertainty and relief. Rage that I was treated so poorly by my local surgical team, that my choices were disregarded and that I was bullied and frightened into agreeing to have surgery I didn’t want, as a first line of treatment. Rage as well that I have cancer for a second time. Fear that I was told several times that I would die if I didn’t have APR surgery, and the usual fear that comes with a cancer diagnosis. And the fear that I am under the local care of a team I don’t trust to treat me as a rational adult (the colorectal nurses have not turned up to any of my appointments post-Papillon). Sadness that my local team thought it was OK to treat me like that, and that other people, with less support, and less determination, and less bloody mindedness are having very expensive, life changing and mutilating surgery unnecessarily. Uncertainty – there are no guarantees in cancer treatment – I could be dead in months if it comes back or could last another 30 years. And this would the same situation whether I’d had the surgery or gone with Papillon treatment. Relief – that I followed my instincts and Professor Myint agreed to see me and that I am in remission.
It’s great but not all plain sailing. I am having late effects of bowel cancer treatment and have not managed to get back to work yet. Incredible fatigue, lack of concentration, urgency and frequency of bowel movements, gastritis, problems with my mouth and teeth, and lately a diagnosis of radiation proctitis. Chemoradiation – the gift that keeps on giving!! I went to a meeting with HR recently, after my GP (a different one) signed me off again, and was told that they would now have to dismiss me for “incapacity to do my job”. I had been on half pay for 6 months, and that ended in February. So, through no fault of my own, I find myself being sacked and on benefits with all the anxiety that brings about not being able to pay the bills. “Ho hum”.
Since my treatment finished I have been undergoing three monthly MRIs and sigmoidoscopies, and six monthly CTs. My most recent sigmoidoscopy was done after a period in which I had suffered two lots of back pain, abdominal pain and rectal bleeding. Given the history this was worrying, but having recently had a thorough examination and scans which were clear, I was not too worried. Two GPs examined me and wrote to the surgeon in charge of my follow up care at my local hospital in April 2017 and May 2017, expressing their concern that it might be diverticulitis, and could he do a colonoscopy instead of the regular sigmoidoscopy scheduled in June. Prior to that appointment I tried to find out if I was having a colonoscopy or sigmoidoscopy, and what preparation I needed to do. In the end I cancelled the scheduled sigmoidoscopy in June for two reasons: I had not had any sensible response from the hospital, despite, on June 8th, going to the GP surgery, as requested by the surgeon’s secretary and standing there while the receptionist printed off the letters the two GPs had sent and then faxed them straight to the secretary (she said they had never received the letters). The second reason I cancelled the appointment was that I didn’t want two uncomfortable procedures – a waste of time and money, when one would give the required answers.
At this point I felt so frustrated and angry that no-one was responding to my request for information regarding which procedure I needed, despite the surgeon having had two months to respond, I made a complaint to the PALS department of the local hospital. Things moved on. I also asked to be put onto a different team for the rest of my 5 years of follow up.
The same week as my complaint, I got a phone call from one of the colorectal nurses (the Angel of Doom – who will make even a rainbow seem like a terminal cancer diagnosis). She said that the surgeon wanted to do a sigmoidoscopy and discuss the symptoms I was having. So he had – finally – read the letters from the GPs. I went for the sigmoidoscopy on 1st July. Bearing in mind that I had already had several similar procedures, which were bearable if uncomfortable, I believe the surgeon was overly (and possibly deliberately) rough. I had to ask for pain relief and was given gas and air – doesn’t kill the pain, just makes you feel out of your head, so you don’t care what’s going on. He did not stop to let the gas and air take effect. Afterwards I felt a great deal of pain and abdominal discomfort. This lasted for five days. I felt like I had been assaulted. His diagnosis was not diverticulitis, but radiation proctitis. When I asked if there was any treatment, or anything I could do for myself in terms of diet etc, he said no, shook my hand and walked away. On the report he states there will be no follow up, but there are treatments, although he did not want to discuss them.
This was the final straw and I was then very determined that I should be referred to another team. I was contacted by the Performance and Operations Manager and we discussed being referred to a different hospital, which meant not only a different surgical team, but different colorectal nurses. After a couple of days I chose this option, and feel optimistic that the rest of my follow up care will be calm and reasonable, and not done by people who disapproved of my choices and resented their success.
Due to my choice of refusing surgery and pursuing a different treatment route I am regarded as a “non-standard” patient. I believe that my experience and relationship with the surgical team and colorectal nurses would have been very different if I had complied with their choice of my treatment. However I believe that I have been treated differently because I went against the accepted “gold standard”. I sense a hostility which frightens and disappoints me. After all, if the purpose was to cure the cancer shouldn’t we all be pleased with a positive outcome in spite of the way it was achieved? I don’t think there is a policy about “non-standard” patients. If there is then it should be reviewed. If there isn’t one then one needs to be written. Cancer patients need all the options explained, and although this takes time, treatment choices are life changing. This is clearly done in some hospitals. My after care should have been undertaken with the same sensitivity and empathy that a surgical patient received.
Cancer is scary. Some people have a wonderful local team, but unfortunately this was not my experience. And despite NICE recommending in September 2015 that Papillon treatment should be discussed in rectal cancer cases that is not happening. In a cash strapped NHS I think it should be the “gold standard”, first line of treatment for appropriate patients.
In any case – I AM NOT DEAD YET.