Steve, 58, diagnosed in 2012 with inoperable pancreatic adenocarcinoma in the uncinate process
I had been working in Germany for over 30 years where our two Daughters were born and grew up. In June 2012 we made the leap and moved back to Wales, settling in Swansea where our younger Daughter was studying with her partner. Our eldest Daughter is married and living an hour away in Newport (my home). We were looking forward to being close to the wider family after so many years away.
We enjoyed Swansea with many dog walks down the steep hill to the beach and I took up sea rowing, the combination of which helped me lose weight. With hindsight, losing 15Kg in a little over two months should have rung alarm bells, but I was perfectly fit, active and really enjoying life. During September, I developed what appeared to be constant indigestion which was keeping me awake at night. After two weeks, I visited my GP who (unlike me) seemed more concerned about the weight loss than my 'indigestion'. Luckily, she acted on her instincts and immediately referred me to an Upper GI Consultant.
Blood tests confirmed a stomach infection which was treated with tablets, but the referral still went ahead and the consultant sent me for an endoscopy. The endoscopy showed nothing untoward in the stomach or duodenum. The consultant then arranged for an ultrasound to rule out gallstones. The ultrasound was fine and the operator confirmed there were no gallstones. She did however call in the senior radiologist as there was something in the upper intestinal area that seemed difficult to identify. He had a look and seemed to be trying to get a better view between my lower ribs from the back. He could not confirm what it was.
Back to the consultant who confirmed they had found a lump on my pancreas which was approximately 3 x 3 centimetres. He arranged a CT scan, but for the first time the alarm bells were ringing. The CT scan happened very quickly, followed by another endoscopy (with sedation) which went further in to check the upper intestine. My family and I were visited by the consultant directly after the endoscopy. The intestine was clear, but I definitely had a lesion on my pancreas which was probably cancerous. They were so nice on the day, the gravity of the situation did not fully hit home. The results would be reviewed at the next MDT meeting, with an appointment scheduled with the surgeon after that meeting, we assumed (hoped) to discuss an operation. We met the surgeon and this time we got the message..... I had a lesion which involved major blood vessels rendering it inoperable. He went out of his way to state the likelihood of it becoming operable in the future was "slim"! This was difficult to take in and there were many tears shed in that room. We were introduced to one of the support nurses who whispered to me on the way out to phone her the next day (I wish I had listened).
I was quickly referred for an Endoscopic Ultra Sound where a biopsy was taken to confirm the type of cancer. The biopsy was inconclusive which is apparently not unusual with pancreatic cancer. The MDT agreed (based on all other information) that this was a malignant cancer and would be treated accordingly I was to be referred to an oncologist to arrange treatment, though not curative!
In the two weeks between diagnosis and seeing the oncologist, we were all on a real low. Ignorance unfortunately fuelled our concerns and we could only see darkness ahead of us. I immediately went to half day working (from home). During this wait, I did finally call the specialist nurses with the usual questions (how long, how bad etc.). We also discussed treatment options which could give me more time. This perked us all up a bit, but there was still nothing tangible to grab hold of. I was feeling really sorry for myself, but 10 days after diagnosis the tragic events of the school shootings in the USA gave me a much needed kick up the back side.... however bad I may have thought I had it, there were indeed people far worse off than me!
Just before Christmas, we met with the oncologist who was really positive and proposed a treatment regime lasting around 6 months. This surely meant I would still be alive in 6 months and by the sound of things a fair bit longer! I signed the treatment papers on the spot and couldn't wait to crack on. We all left the meeting with a spring in our step!
My treatment started in early January and is based on the SCALOP trial with a 4 week chemotherapy cycle (Gemcitabine and Capecitabine). Each cycle consists of 3 weeks treatment with 1 week break for the bloods to recover. After four cycles, I am scheduled to have chemoradiotherapy for 5 weeks, with a follow up CT scan for review by the surgical team. I have been lucky enough to have very few side effects, with the only significant issue being a rash over my stomach and thighs which was cleared with a steroid cream. My energy levels and appetite returned during the first cycle and I was also able to stop my pain killers (no pain at all). I also returned to full time working.
Unlike the dark days of initial diagnosis, at this moment in time we all feel pretty positive (all my girls are smiling again) and hopeful that something might be able to be done to help. Importantly, we now understand what we are dealing with and if things do not go well, we know that it will not have been from a lack of trying from everyone involved from the outset. The break between radiotherapy and the final CT scan gives us a window to do something, so we will try and get away to enjoy ourselves pending whatever this thing throws at us!
Update September 2013
With the treatment and Holiday behind us, the time came for the CT scan. Results were a
bit of a mixed bag...... the tumour has shrunk from 3cm to 2.2cm and has not spread which is excellent news, but it is still involved with the artery (and some tributaries supplying most of the gut) so surgery is still not an option. We had a very long chat with the senior surgeon and I truly believe he would have 'gone for it' if at all possible, but simply cannot. My health remains really good and I am only a few kilos away from my pre-illness weight of 85Kg after dropping to 68Kg in January. The surgeon pointed out that he has seen similar cases with no discernible change over several years, so all in all the news is quite up-beat. All treatment has stopped and I will have 3 monthly CT scans to keep an eye on things. We will now look at CyberKnife and NanoKnife, but discuss with my surgeon before making any decisions.
It's business as usual for now then, with the fingers remaining firmly crossed!
Update December 2013
The latest CT scans were sent to Cyberknife and NanoKnife clinics along with a copy to Heidelberg for good luck. I received positive responses from the first two, followed unexpectedly by an email from Heidelberg stating they would like to give the Whipples operation a try! We certainly were not expecting that. I flew over for a consultation which included a new CT scan, after which they set a date of 30th October for the operation. Their stance was that it may be operable and further radiotherapy would not help the procedure, so if we are to try then now is the best time. They would only know conclusively once they opened me up, but it was worth it as far as I (we) was concerned. On the day, I drifted into the drug induced sleep at 08:00 and awoke in recovery at 11:00 which was obviously too quick. It transpires that The tumour had totally encircled and infiltrated the artery at a junction making surgery (now and in the future) too dangerous to attempt. So it was back to the ward for recovery and back home to Wales 2 weeks later.
Whilst it may on the face of it appear a negative outcome, we do not see it that way and I have absolutely no regrets. We now won't be wondering if it is operable and can focus on other treatment options. The surgeon took samples which confirmed it has not spread and the Oncologist has given us more options based on the fact that it appears to be non-aggressive as I have had no treatment since June.
Could have been better maybe, but then again it could have been a lot worse and I live to fight another day, week, month, year............
Update December 2014
December 2014 - I have now reached a major milestone as tomorrow (4th December) is the second anniversary of my diagnosis and I am still going strong!
Since my last update in December 2013, I enjoyed a period of inactivity on the tumour front and no treatment. But we saw my marker rise in May, which a PET and MRI confirmed as the spread to my liver. I immediately started on Folfirinox with the usual side effects, though these have improved with time. The treatment has seen my marker drop from over 2000 to 90 at this time. I also had to drop Oxaliplatin after my 10th cycle of chemo as the Neuropathy was proving to be a problem.
So all-in-all, things are going well which has also helped with the decision to move from a 2 weekly to 3 weekly cycle to give us more quality time together and the ability to travel a little.
Next step is a (private insurance funded) PET scan on 16th December after which we will review all options, with a focus particularly on alternative treatments such as Nanoknife and/or Cyberknife.
2 years ago, I (we) thought my demise was imminent, but the fight goes on and is far from over. We fully understand that I have been luckier than most in the positive way I have responded to treatment and as a result remain optimistic that we can keep this beast at bay for some considerable time to come. Fingers crossed!
Update August 2015
My NanoKnife experience. (6 May 2015)
It was not an unpleasant experience at all, in a large part to Princess Grace Hospital and the personal touch from the staff, Professor Leen and the anesthetist. Everything ran exactly to schedule other than a delay returning to ward due to pain which was stabilised before sending me up, with my family being appraised on why it was taking longer than expected. I had further stomach discomfort on the evening of the procedure, but was given IV painkillers which worked well. The following morning, I was discharged with no pain or after-effects other than a bruise on my upper left abdomen. It is now 2 months since the procedure and the CT scans give no real information other than the tumour has not grown. We hope that the tumour is now in part made up of scar material from the NanoKnife, but only time (and possibly a PET) scan will indicate what activity is going on inside me!
Oh...the final cost was around £16k, which my Company Health Insurance paid.