The Plan

I’d learnt pretty early on following my diagnosis that I would eventually lose my colon because of the genetic mutation that predisposed me to the cancer.  I guess at this point it helps if I give a little bit of background information to give more context to my story.

On the same day that my tumour was diagnosed in early February 2016 my gastroenterologist informed me that they were 99% certain that I had a fairly rare condition called Familial Adenomatous Polyposis or FAP for short.  No me neither… although I’m much more knowledgeable now of course.

I’d ended up at hospital following a visit to my GP in which I told her about my change in bowel habits, coupled with my extreme tiredness when out running.  This was soon confirmed as anemia, courtesy of a blood test organised by her.  On the back of that she sent me for an urgent colonoscopy and endoscopy at my local hospital to find out what was going on. Thank goodness for a very good doctor.

During these procedures the gastroenterologist not only found what he suspected was a cancerous tumour in my rectum,  but also hundreds of polyps in both my large bowel and my upper GI tract.  This is very unusual.   Although the general public at large have never heard of FAP, experts in the field come across it relatively often and the number of polyps he saw were a big red flag.   His suspicions were confirmed a few weeks later following a special blood test and once I’d had my diagnosis.

According to the website  “FAP is diagnosed when a person develops more than 100 Adenomatous colon polyps.  An Adenomatous polyps is an area where normal cells that line the inside of a person’s colon form a mass on the inside of the intestinal tract. The average age for polyps to develop in people with FAP is their mid teens.  More than 95% of people with FAP will have multiple colon polyps by the age of 35.  If FAP is not recognised and treated there is almost a 100% chance that a person will develop colorectal cancer.”

FAP is a genetic condition and is usually passed on from parent to child. As the website goes on to explain, the APC gene is linked to FAP and when a mutation occurs  in it then “it gives a person an increased lifetime risk of developing colorectal cancer or other cancers of the digestive tract”.   In simple terms a child with a parent who has the mutation has a 50% chance of inheriting the mutation.  A brother, sister or parent of a person who has a mutation also has a chance of having the same mutation.”

Because it is a genetic condition most people will be screened for signs of FAP with regular colonoscopies from a young age and they will be advised to have their colon removed by their late teens or early twenties. Whilst this obviously means learning to live life with a stoma,  it avoids them developing colorectal cancer.  Left undetected there is no real sign as polyps don’t really do much in the meantime.  I’ve learnt since being diagnosed that there were signs I had the mutation from an early age.  These included such conditions as having ostomas which are non cancerous benign growths usually on the jaw line, I had one removed from my jaw line when I was about 9, and epermoid cysts,  I’ve one of those on my ear that we always thought was from the pressure of playing front row in the scrum in my rugby days.  But back then no one would have been the wiser.  Indeed the gastroenterologist thinks I’d had my polyps since my early teens.

We have no history of bowel cancer in my family and subsequent genetic testing has proved that my immediate family do not have this genetic mutation.  This is of course is a huge relief because it means my first degree relatives and their children are safe,  but it begs the question how can I have the mutation?  My genetic counsellor has however told me that there is a 25% chance that a person diagnosed with FAP can simply be unlucky enough to develop this mutation without any family history.   So I guess it’s pure bad luck in my case.  One silver lining is that it will live and die with me as I don’t have children.  However,  It also makes me a pretty complex case because it’s fairly rare for individuals to be diagnosed as lateas I was, and also because it makes me more susceptible to other complications.  But more of that another time.

In June of last year following 5 weeks of chemo radiation at Charing Cross hospital and follow up scans back at my local hospital I was referred to the Royal Marsden in Fulham.  The surgical team at West Middlesex hospital felt I was ready for surgery but saw me as a challenging case and so referred me on to the Marsden.  When discussing the likely surgery ahead of me I was told that it would most likely be what is called a panproctocolectomy.  This operation involves removing the entire colon, rectum and anal canal and would also mean I would have a permanent stoma.

Although I realised this was a huge operation and indeed life changing, the way I always looked at it was that it was life saving.  Plenty of people live full active lives with stomas and I was going to be one of them.  I’ve had the opportunity to connect with so many people in this part of my life who for whatever reason have not had this type of lifeline to feel any other way.  However after their own MDT (multi disciplinary team meeting) The colorectal team at the Marsden felt I needed more treatment before surgery.  Hence the extra 6 months of chemotherapy to shrink my tumour later in the year.

So when my friend and I came back to the Marsden in late January of this year that’s the operation I was expecting, if they said yes at all.  However I was soon to discover that it was to be much bigger operation than I had antipated or planned for.

Once we had composed ourselves, as I must confess there were more than a couple of watery eyes in the room after he confirmed the surgery would go ahead, my consultant, Mr Rasheed explained more.  With the aid of diagrams he explained how the latest scan showed that the tumour had gone to the pelvic floor area and invaded the back wall of the vagina so it was impacting on the urethra/bladder.   He also suspected that the new polyp showing in another part of the colon was a new cancer.  This was all explained with the use of diagrams in which it became obvious how close our internal organs are to each other.  Because of this,  he gently explained he was not only going to have to perform a panproctocolectomy,  but he was also going to have to remove my womb, posterior wall of the vagina and possibly my bladder too.  Although this would be decided when they were operating.  I would also need to have a new pelvic floor made up and there were several ways this could be done but once again this depended on decisions made earlier in the surgery.

He went on to explain that this was the biggest operation that someone could have, telling us it made having open heart surgery look like a walk in the park.  He also told us that he was one of only 10 surgeons in the country who could perform the operation, although amazingly he said he performed one weekly.   It would last up to 15 hours and I would be in hospital for around 3 weeks.  There was an 80 to 85% chance he would get all of the cancer and he would be looking to operate in March sometime which gave my body time to rest from all the chemotherapy.  There would of course be a team of surgeons including himself, the Urologist, Gynaecologist and the Plastics surgeon involved in the operation.

He explained that in the coming weeks he would see me for a day procedure where under general anaesthetic he would perform a colonoscopy and an OGD where he would also check my upper tract.  This was to make sure everything was as he expected.  I was also to meet all of the other teams that would be involved in my surgery so they could fully explain their part in my operation.  Finally,  not long before surgery I would have both an MRI and CT scan to make sure there was no change.

In the meantime he told me to get as fit as I could because what he was going to put me through was like doing 15 rounds with Mike Tyson!  He was amazed but encouraging that I wanted to return to boot camp saying it would definitely help!  He then outlined his priorities as being safety, removal and avoidance of further complications.   Finally,  he explained that in 6 months to a year I would be back to 80 to 90% of how I was currently.  I would never be quite the same but it would be the new normal.

For me what sets my consultant, Mr Rasheed apart,  is that this was all explained to me in a way that I could understand and in a way that showed he cared.  He was aware that I was so relieved that I was going to have the operation that I was only really taking in about 10% of what he told me.  Although it seemed huge and of course it was and is, he told me of other patients who had the same or similar operations and of how they were living full lives now.  If I needed to meet a patient who had had the operation before then they could arrange it which i certainly did. He was also very aware that they were going to look after me physically but that he wanted to make sure I was supported emotionally too.  If I had any more questions then I could come back at any time to see him or speak to one of his amazing team.

My friend who was a wonderful support and I left the meeting feeling pretty shocked.  My over riding emotion was one of one of shock but I also had complete trust in him.  I really didn’t want to lose my bladder because the thought of living and dealing with two stomas seemed extremely daunting,  but at the same time i had this inherient belief which stayed with me always that this was a man who was going to save my life.  My friend actually reflected my feelings very well in her brilliant notes on our meeting later in the day.  She said she came away thinking that the next few months were going to be extremely hard for me but if I ever wanted to have somebody in my corner then it was Mr Rasheed.

She wasn’t wrong.







11 thoughts on “The Plan

  1. Thank you for being so brave in sharing this Hoppe. I’m a mix of emotions from your incredible blog but am also full of belief in your strength to get through this and hopefully continue sharing what may be a life changing episode for you xxx

    Liked by 1 person

    • Hi Colette, thank you. I realise it must be a tough read but it’s been really cathartic and I’m so touched by everyone’s response. I hope it throws light on what it’s like to go through diagnosis and treatment. Yes I’m really positive. It’s been incredibly hard but I feel very lucky to have the chance for a new start.
      Lots of love xxx

      Liked by 1 person

  2. My Goodness Claire what you have been through and are going through is really something else. You are truly amazing. Your blog is fantastic. Would love to see you in tine 😘

    Liked by 1 person

  3. Hoppe, thank you for sharing this. Looks like it will quite a journey..bottle the highs and ride the lows… sending positive vibes. Max


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