I am so pleased and relieved that I have found this site!
After my diagnosis last month I have had a whirlwind of activity, but finding a consistent and informative source of information seemed impossible - until now.
I am 55 years old in March, married with two grown-up step-daughters and also our 10 year old daughter at home. I run an IT Operations function for one of the major UK cultural Public Sector institutions, and I am being treated at St James' Hospital, Leeds, West Yorkshire in the UK.
The "high" [ironic] points thus far:
Since 2010 I had experienced acute reflux 3-4 times per year, my GP had diagnosed it as such and treated me for this. I had put the cause down as in part stress-related.
In September, 2012 however, I had the same symptoms coupled with vomiting, agonising pain in my upper right chest and a high fever which lasted until 0400 the next morning. I made an appointment to see my GP the next day, as when I looked in the mirror I was obviously also jaundiced (I have not had these symptoms since).
My GP gave me a letter and instructed me to travel to the local hospital and get admitted for an ultrasound scan, as he suspected an escaped gallstone. I arrived at the hospital in early afternoon and was seen by the Registrar at 1830 (in between I had an IV drip inserted and a notice was posted above my bed stating "Nil by Mouth" around 5 minutes before a hot lunch was served to everyone but me <sigh>).
The Registrar was of the opinion that the gallstone had already begun travelling out of my body, and offered to admit me to hospital that night for an ultrasound the next day (although being a Sunday he was doubtful), or alternatively having one the next week as an out-patient; I chose the second one and went home to dinner. My discharge letter from the hospital noted "deranged LFTs" and "bilirubin down 161 to 43" - whatever that means.
My ultrasound occurred in early October, and I then received an appointment for three days later with a consultant colorectal surgeon. He opened the conversation by looking at my record on his computer system and telling me I hadn't had a scan. I replied I had, I then spent 30 minutes waiting for the scan results to be found and added to the system; I was then informed that the results were being faxed through, the consultant would review them and send me a letter containing the outcome later that day.
I received the letter a week later (the consultant had indeed written up his findings that day, however it had taken his secretary a further 5 days to type the letter). The day before I received an appointment for a CT scan which baffled me until the next day, when the consultant's letter explained.
The letter confirmed that I had gallstones and said that the bile duct, spleen, pancreas and kidneys appeared normal, however stated that there was an "abnormal area" on my liver that the radiologist suggested needed a CT (CAT) scan. The letter also said that in due course an MRI scan of my bile ducts might be needed. I had my CT scan a week later, and a week after that received a letter from the consultant which said "The CT scan performed recently to investigate the liver lesion seen on your ultrasound scan suggests that this is fat deposited within the liver. However we would like to perform a further scan called an MRI to investigate this....no other abnormalities were seen other than a fatty lump within the transverse colon. The pancreas was normal".
The MRI scan was run in the middle of November, and I then received an appointment to see the same consultant as before on 12th December, 2012; I had concluded that, whatever the underlying problem was, it wasn't critical because of the gap between the scan and the appointment. Imagine therefore my surprise when I was ushered in to see the consultant, and he introduced me to a MacMillan Nurse. He explained that "sadly" he would have to refer me to a specialist in Leeds, as the MRI scan showed an abnormality in my liver which had the appearance of "a cancer arising in the liver, or possibly arising in the bile ducts within the liver". The consultant said that the specialists in Leeds would determine the best treatment option.
From here on in things moved with some haste. My wife and I met with an Hepato-Pancreato-Biliary (HPB) Surgeon at Leeds St James on 17th December, 2012. He explained that my scans showed the presence of a "large likely intrahepatic cholangiocarcinoma involving completely his IVC as well as both left and right portal veins. Although the left hepatic is patent, the fact that the tunour extends across to the umbilical fissure makes him at this stage unsuitable for an R0 resection (complete resection) of his tumour" (the quotes above and below are from the letter from the consultant to my GP, which I requested and received a copy of).
I asked what my prognosis was after chemotherapy, which is what the surgeon recommended, and he said anywhere from 6 to 18 months, however he stressed also that there are a number of variable factors, and that a lot depends on the outcome of the chemotherapy. We asked if surgery might be re-considered post-chemotherapy if it were successful in shrinking the tumour, and he agreed (his letter confirms this part of the conversation but adds ".....although in my opinion it is extremely unlikely"). He also recommended a liver biopsy and a PET Scan before seeing an Oncologist, and I was assigned a Specialist Nurse as my single point of contact.
My wife and I decided we would focus on having the best family Christmas and New Year ever before telling them, and that's just what we did.
I had the biopsy on 23rd December, 2012, (and felt my existence "stutter" just after they pushed the button.....), then the PET Scan on 28th December, and then finally an another appointment with the HPB Surgeon on 21st January, 2013 - at which stage I rang my Specialist Nurse and she arranged an Oncologist appointment for 11th January, 2013 (see, I'm beginning to learn).
The Oncologist said that the PET Scan confirmed an intrahepatic cholangiocarcinoma of 15cm in size, that it had not metastasised elsewhere, and recommended a 12-week programme of gemcitabine and cisplatin chemotherapy (four 3 week cycles, chemo Week1 and 2, Week3 a rest week), followed by another PET Scan. We agreed, and I'm at the end of Week3 of the first cycle. She also said she viewed the chemotherapy as active rather than passive (palliative).
I guess some of my comments above could come across as derogatory to the medical profession, however this is absolutely not the case. For most of my life I've been ridiculously healthy (if increasingly unfit). Every nurse and doctor I have met has been clearly professional, interested and caring in their approach, even though they are under sustained pressure of work. If I had one constructive criticism it is that some of the administrative and workflow processes seem unnecessarily prolonged or are missing. (a 20 page A4 booklet for admission to hospital which needs to be filled in by a Nurse then checked by the ward sister, then at various stages other documents which need to be filled in and which ask the same questions again?)
I'm lucky in that I have few chemotherapy side effects thus far, namely insomnia (=get more exercise during the day), inflamed knuckles on both hands (=aqueous cream), slight abdominal discomfort rather than pain (=lots of little chemo elves cutting away at that pesky tumour).
Latest news is that my tumour marker (CA19.9) score on 24th January was 529, down from 624 on 17th December, however I'm told they look for a trend across the full chemotherapy cycle. Still, a good start.
I've initially taken four months of extended sick leave from work, we met with a MacMillan advisor who applied successfully on my behalf for Disability Living Allowance, (terminally ill patients qualify - meaning <6 months to live by their definition), and also had help from MacMillan Financial Advice (piloted in Yorkshire since 2011), and also with the local Hospice specialists (I had always imagined Hospice services were solely deployed at the end of an illness, but was delighted to learn they offer a range of counselling and complementary therapy services).
I've also begun to put financial affairs in order, so that my wife and children have as financially stable a situation as possible, and, of course, I'll need to make a will.
I stop smoking tomorrow (I started when I was 11), I've joined a gym to build up core body strength, and I've totally changed my diet to more or less exclude all meat save fish and the odd piece of chicken (lentil shepherd's pie anyone?), I tell myself I love Brussel sprouts and all forms of vegetables and fruit - and it must be working because I feel great.
The lessons I have learned thus far from this unlooked for experience are:
1. It's OK to cry. When something so shattering happens it's all right to cry. It's a human reaction and it will make you feel better. It is also OK to curl up in a ball in the corner for a while and attempt to deny the undeniable - just so long as it doesn't become a permanent condition, because after that you have stuff to do.
2. It is also OK to get angry - so long as you channel that anger into productive activity.
3. Own your condition. Patients should not be passive, but should actively pursue understanding of their condition and of treatment options, and should build relationships with and interact with carers on a basis of mutual respect.
4. Make a list of all the things you ever wanted to do and, while you are still able, get as many of them done as possible (including finally fixing that yard gate).
5. Confound expectations - make a plan. We have just celebrated our daughter's tenth birthday. I will bend my every effort to be there for her next one.
6. When you are told you need to be admitted to hospital and you have a choice between a local one which is close or a regional centre which is further away, choose the latter every time.
Apologies for the ramble. Future posts will be short and to the point. I am so pleased and relieved to have found this fantastic resource.
I have some questions on the above and welcome all opinions and advice.
1. I've read a number of forum posts which advocate getting second opinions on treatment approach. Should I seek a second opinion on whether surgery is an option, and if so should I do this ASAP or await the outcome of the chemotherapy? (I saw a reference elsewhere in the forum to Professor Peter Lodge)
If the chemotherapy is unsuccessful would I still have options for a Whipple or a liver transplant?