My story so far.....

Background
My name is Tony and I am 49 years old, I've been married to Tania for 23 years and we have four children ages 23, 21, 17 & 13 plus a new Grand-daughter, Heidi, born in May 2011.

Diagnosed - 1st Surgery & 1st Chemo
After two years of tests for abdominal pain without any other symptoms, I was eventually diagnosed with Stage B Bowel Cancer in October 2006. I had a laparoscopic right hemi-colectomy operation (Richard Cohen - Harley Street) that November, followed by six months adjuvant chemotherapy (Capecetabine+Oxaliplatin).

Rediagnosed - 2nd Chemo & 2nd Surgery
Unfortunately, in November 2007, just when I thought I was clear and had beaten it, I was rediagnosed with peritoneal metastases. This made me now a stage D which is when cancer is recurrent or has spread from its original site. I had six months further chemotherapy (FOLFIRI+Avastin) and then in July 2008 I had a laparotomy (Richard Cohen - Harley Street) which was another big operation to remove several tumours by removing the omentum and gall bladder.

3rd Chemo, Rediagnosed again...Inoperable?
In August 2008 I was put back on chemotherapy (Tegafur+Avastin)but unfortunately, on 9th December 2008 I was rediagnosed again. The chemotherapy was stopped. I had a 5cm tumour in the porta hepatis wrapped around the portal vein (just outside the liver) and three others (about 2cm each) in the abdominal area. I was told I was inoperable.  However, we were determined to find further treatment and was subsequently successful in finding a surgeon who would be prepared to operate (Charlie Imber - Harley Street) and Cyberknife.

Cyberknife
We had heard about Cyberknife and contacted the Harley Street Clinic. I was accepted onto the treatment and I was the 5th person to have the Cyberknife treatment here in the UK in February 2009.  However, it was only effective in the largest area near the liver.

3rd Surgery
My oncologist said further surgery was needed and in May 2009 I had an operation similar to a "whipple". I had my spleen removed, the tail of my pancreas removed and section 3 of the liver resected also. A couple of mets were found in my liver that hadn't shown on any scan.

There are very few surgeons who are able to perform this complicated surgery but it went well and I left hospital after a few weeks but subsequently had to return as I was getting the most unbearable stabbing pains in my stomach going through to my back. Apparently these are classic symptoms of pancreatitis which was subsequently diagnosed and I ended up spending about 7 weeks in hospital. I lost 2 stone in weight, my lungs collapsed and I needed drains put in to remove fluid which was excruciatingly painful.

Unfortunately, I also missed a charity golf day that my dear friend, Alan Gilbey and the Carriage Club Golf Society had arranged in my name "Tee Off for Tony" on July 13th.  All the proceeds went to Bowel Cancer UK and totalled approximately £10,000.

After the operation my tumour markers (CEA level) went down to their lowest ever level of 1.5 but unfortunately my levels rose rapidly and reached 300 for CEA and 8250 for CA-199 which meant the cancer was back......again - they just had to find where it was hiding.

My March 2010 scan and subsequent biopsy showed an area in the splenic bed, which was originally thought to be a haematoma from the previous operation, to be a solid mass of tumour nearly 8cm in size.

This time because the tumour was so large and there were other suspicious areas in my abdomen I wasn't a candidate for either surgery or cyberknife. This was devastating news.

4th Chemo
My oncologist didn't offer chemo either so I found another oncologist who would offer it to me in the hope of shrinking it and making it operable and started on chemotherapy (FOLFIRI + Avastin regime) in April 2010 for 6 sessions to see if it would shrink the cancer enough to operate.

Inoperable
The chemo was debilitating and unbearable but I finished the regime in June 2010 and had my CT scan and waited for the result. It was a massive blow to find out that it hadn't done anything significant and we have had to come to terms with the fact that I am inoperable.

I had another scan in mid September 2010 and unfortunately the cancer had spread to my pelvis and there is a node in the liver as well as the one in the splenic area that is still 8cm.

5th Chemo - permanently
The oncologist I was under wanted me to go back on Folfiri & Avastin but I'd had enough and said 'no'.  I decided it was quality of life that was important now.  I wanted to have Capecitabine (Xeloda + Avastin) but he said it wouldn't work so I decided to have the treatment locally which meant moving to oncologist number 3 who promptly offered me the treatment that I asked for in the first place!  This oncologist and the last one didn't think I would make it to Jan 2012 when it is my son's Barmitzvah - in fact the last one said that was being a "bit too optimistic!".  After a really disastrous appointment with this oncologist, Tania decided to call oncologist number 4, back at the LOC in Harley Street.  This is where I am now, under Professor Justin Stebbing who is excellent.  He made some adjustments to the treatment and monitors me regularly when I go every other week for treatment and it's true to say is amazed as anyone that it is still holding the cancer a whole year on.   I know, for the first time, that I have someone who truly will do everything he can to keep me going.

Well, the Barmitzvah came and went and Tony was most definitely here and it was wonderful!  Unfortunately the couple of weeks afterward were really hard and he wasn't feeling well at all.   We came to the conclusion that the chemo has really been taking its toll and decided to ask if he could have it three weekly instead of two so for the next couple of times that's what it is and we'll see what the tumour markers are and be guided by them for now.

Update 21st April 2012
Tony had a PET scan on 12th March, the same day as our adorable grandson, Ethan James Avery, was born.  We knew the result wasn't good when we received a call from Justin's secretary to come up for a meeting.  The scan showed progression and that the cancer had spread and "coated" his liver and was not showing on the CT scans and was growing where there was no blood supply, which is unusual.  The chemotherapy was not only back to every two weeks but now doubled! Hey ho, you ask for it to be reduced and then it gets doubled - unbelievable! Anyway, he had two rounds of that and after a month, Tony went back to have another PET scan to see if the double dose had helped and found that although the bloods had continued to rise, the scan was showing regression.  Mmmm. Not sure about that!  I don't believe that the scan worked.  This might sound odd but Tony has had a PET scan before that hadn't shown up tumours that we knew were there and also has had scans before operations and they have then found additional disease in the liver which hadn't shown on a scan so it isn't quite as daft as it sounds, or quite as pessimistic as it sounds, not to actually believe what the report shows.  So, now all we can do it watch and wait every two weeks and see if the bloods continue to rise, or whether they fall and in the meantime continue to live on a knife-edge.

The prognosis is not good. However, no-one knows exactly how much time I have left and I am not prepared to just give up! I want to enjoy the precious time I have left with my family - however long that is.