Thought I'd revive this thread after a little time off!
Just to update you on the situation with my dad (Martin).
So, at our previous consultation in April with the Leeds Oncologist, they decided NOT to proceed with Chemo and wait a little longer to see how the cancer fared over the next 3 months.
Upon questioning why they would want to wait rather than just go ahead the response was the following.
"There is currently only one type of chemotherapy treatment that is known to be effective for CC patients, that is the Gemcitabine and Cisplatin regimen. The chemotherapy was shown to be effective in shrinking the tumours around 60% of the time but it would never completely cure the cancer. Therefore each subsequent round of chemo was found to be less effective than the last as when the cancer regrows it does so with an added tolerance, until eventually it is no longer affective. This varies from patient to patient, in some cases they could go through 4 or 5 round over a number of years, but in some cases it wasn't effective at all."
Therefore, given that my dad's Cancer is "slow growing" and he was in good health, the decision was to hold off on treatment until there was evidence of more significant growth in the hope that the chemo would have more to target and thus be more effective.
I have to say, I didn't really agree with this at all, it seemed very 'reactive' rather than 'proactive'. I mean if you have a leaking roof, you don't wait until the house is flooded before cleaning it up, you fix it immediately to minimize the damage... but hey what do I know I'm just a Construction Manager.
Anyway, around the end of July/beginning of August dad's bowel movements started to become irregular (i.e very often), he was showing signs of Jaundice and weight loss. He went to our local GP who took some blood samples and stool samples to test for infection and his Bilirubin levels. In the meantime he was prescribed some antibiotics. Blood tests results showed no signs of infection but Bilirubin Levels were up from 'normal' 20-30 to 95.
As he was scheduled for his quarterly scan at St James anyway this information was passed over to them. A week or so later Dad had his CT scan and more blood tests. All the time dad's starting to feel worse, getting very emotional, unable to sleep at night due to constant Diarrhea, generally quite emotional and drained of energy. Another week passes before the consultation with firstly the Leeds Surgeons and Oncologists to discuss his scans and blood tests. However it is decided that a ultrasound scan would be done before the meetings.
Monday 19th August, we go to Leeds for the Ultrasound Scan and to see the Surgeons. On this occasion we didn't see the general surgeon Mr Prasad, but one of his new understudy's, who was not at all familiar with his case, In fact she asked us to talk her through the case!! Perhaps it's just me but I was actually quite shocked by this.
Both CT Scan and Ultrasound scan show once again showed 'no significant growth' (they love that term) in the existing tumours, and no new mets. So from a surgical point of view they didn't believe there was any work to be done (i.e no need for a stent or any other surgical treatment). So his case was passed on to the Oncologist to discuss further. More blood samples were taken.
We returned on Tuesday morning to see the Oncologist. This time, we saw Dr Anthony, he was far more up to speed with the case and actually talked us through the scans which we were loaded up on his computer.
The scans showed that that over the course of 11 months since the recurrent tumours were first spotted, the 2 lesions in the liver had each grown approximately 10mm in 11 months and were approximately 31mm and 38mm in size. However, these lesions were situated in areas of the liver far from any bile ducts and were unlikely to cause any blockages or be responsible for his recent symptoms. He expected that for these tumours to cause any significant problems they would need to be 5 times the size. The mets in the lung were negligible and not of much concern.
The decision was made that now would probably be the right time to start chemo, but also an MRI scan would be done beforehand to see that would give a clearer picture of what's going on in his bile ducts as all symptoms point towards a blockage. To quote him "We don't want to be lured in to a false sense of security based on the Ultrasound and CT".Blood tests showed a steady rise in bilirubin which was now at 112 up from 95. We were told that we would hear back regarding a scan in the next couple of days before the August bank holiday.
The Week Passes and no word, Dr Anthony is on holiday for the whole week commencing 26th August but on the 29th a letter is received via our local GP. My dad's Bilirubin Levels are now at 195 (up from 112). A meeting is arranged for Tuesday 3rd September with Dr Anthony.
Meeting on 3rd is held, Dr Anthony is surprised that my dad has not had his scan yet (he thought it would take place while he was on leave) and so arranges an MRI for next Thursday 12th September, with results to be discussed on Tuesday 24th September (two months since symptoms first started). Not much further to discuss, other than my dads lower left abdominal region which was in pain/aching. Dr Anthony suggested that this could be due to his bowel being in a strange place so waste gets trapped causing discomfort. When queried about the rise in Bilirubin levels Dr Anthony seemed unconcerned and said that Bilirubin levels need to reach 600+ before they become dangerous.
Anyway, since April my dad stopped taking the hemp oil (it made him very drowsy and tired), given that the hospital had no prescribed any medicine he started taking again. For the first time in 5-6 weeks he was able to sleep through the night without having to get up repeatedly for the toilet. We have also bought some supplements to aid liver functions as I read milk thistle and NAC can help?
Being able to sleep has obviously raised his energy levels. He is still working full time and playing golf at weekends, although he admits he was flagging on the back nine and gets tired in the afternoons.
I find it incredibly frustrating how long things seem to take with the NHS and can't help but feel that all this waiting around not knowing is doing my dad no help at all both mentally and physically. I'm certain that if we had the money we would go private. I appreciate that they have other patients to see and they're under resourced but 2 months is just a complete farce in my mind.