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An update but down beat. The referral for Cyberknife (SABR) seems to have stalled with the amount of time for exchange of letters between hospitals. It’s now 23 days and one hospital is still waiting for the CD of my scans to be sent from the other hospital. Whatever happened to the joined up NHS and electronic communications?
Due to the delay, I’ve lost a fair chunk of what apparently remains.
The Hospice Nurse has visited twice and things are in place for the “end game” which seems to be approaching with an air of awful finality so we’re more or less reconciled to the prognosis.
I have ruled out Chemotherapy on the grounds that we would rather have six (or so) months of good quality life rather than 18 weeks of pretty awful conditions, if the Oncologist is to be believed, for the sake of an extra three months part of which would apparently be spent recovering from chemotherapy.
I’ve just started taking Theracurmin as a final “last straw”. Here’s hoping.
I’ve been reading through the criteria for trials eligibility and it would appear that because other cancers that I have, I don’t clear the first hurdle. I’m not even sure if the referral for Cyberknife intervention will be successful for the same reason as SIRT is ruled out because of my past medical history.
Doors closing as I approach them.
The biopsy result was received today and the result is “suspicious” and had abnormal cells that point to there being a cholangiacarcinoma. Next step is to see the Oncologist next Wednesday to discuss “options”. Yesterday, I saw one of the Surgical Consultants who is/was involved in my case and he said that I was not presenting as one with CC normally would. No weight loss, no loss of appetite and some other non-specifics that are normally present. I asked if that was a reason to hope and he was non-committal but seemed to have some optimism. Today’s revelation, though not a total surprise has dashed that hope.
I’m relying on chemo-therapy I guess unless I’m offered one of the other risky treatments available. So the roller coaster ride continues – up last night after seeing the Consultant and down today after receiving the biopsy result.
I had a stent fitted yesterday via ERCP plus the surgeon took “brushings for a biopsy. It’s the waiting game now but the stent has perked me up no end both mentally and physically. Once I get the biopsy result I will continue to explore my options further.
It would appear that my tumour is inoperable. I have seen a consultant who knows about these things and he explained it all to me in a 45 minute session last week. The medics are assuming that it is malignant. It is wrapped around my hepatic artery just at the point where the left and right bile ducts become the common bile duct and it will be too risky to get at it. I’m due a stent to be fitted into my bile duct this week to relieve the jaundice symptoms which are now becoming tiresome. That will be followed by an attempt at a biopsy and then chemotherapy. Palliative care is all that is on offer at present with a forecast of 6-9 months and perhaps a year before I meet my maker.
If (big IF) it is benign then a different prognosis exists that will make me happier.
I’m pursuing the option of Cyberknife intervention but I’ll have to self fund it as NHS won’t pay for it and my GP has written the referral letter to explore that option. Even that may prove to risky.
Maybe I’m clutching at straws but I’m not going quietly in to that dark night.
Many thanks Helen for posting those useful links. Terminology appears to be the great barrier to knowledge with CC and breaking down that barrier with regular use of that terminology doesn’t eliminate, but goes some way to alleviating the fear or trepidation of what’s to come.
When I was in the Royal Marines I did a military parachute course with the RAF Parachute Training School. Their motto: “Knowledge Dispels Fear”. Fairly apt.
Now drinking five pints plus of water per day to help clear the bile from my system. Half a pint per daylight hour seems to make it go down easier.
Back from the hospital and here’s the sketch:
We’ve just got home after our hospital visit with the Team Registrar and the Specialist Nurse.
I didn’t see the result of the MDT meeting at the other hospital as it hadn’t been faxed/emailed through but the gist was that the other team want to instigate/carry out two more actions.
First action would be to fit a stent in the compressed bile duct to relieve the jaundice symptoms. Which by the way, I hadn’t noticed in yellow skin and eyes but the team had, plus my blood markers were very high in the indicative area. The stent would be by local anaesthetic and through the skin like an angiogram. You’ll know I guess.
Second action would be an ultrasound ultrasound biopsy (as opposed to an endoscopic ultra sound biopsy). Once again, I’m sure that you’ll be familiar with that process. The target is about 25mm long
To my mind, that give me a bit of hope in that surgery hasn’t been ruled out straight away (fair enough, it hasn’t been ruled in) so it seems like good news though they have been unable to explain the intermittent pain in my upper left quadrant so that remains mystery and at present the most debilitating part of the illness.
Thanks Helen. I have also read the article on MDT which gives a few pointers and of which RD&E staff have apparently taken notice.
I’m in limbo at present as my CC is yet to be confirmed. I am meeting the Team Registrar this PM to discuss the outcome of an MDT in Plymouth due this morning. I live in hope.
My question is: What are the signs of the disease progression? Can I expect severe pain? Where will the pain be situated – abdomen, liver or elsewhere? I have had none of the listed symptoms except severe pain and vomiting which the Team thinks (or thought) was not related as it was emanating from the left upper quadrant.
Currently we (my Wife and me) are mystified.
My first symptoms (in July/Aug 16) seem to have been a prickly feeling in my upper abdomen in a line just below my rib cage. This was on/off for a while so I went to my GP who said that it was probably related to a previous spinal injury and surgery so there the matter was left. In November, I was awakened with a dull pain in my upper left abdomen which quickly became pretty serious. I tried indigestion remedies and paracetamol and promptly vomited them back up. After about 90 minutes the paid subsided and went back to sleep. This happened a further two times in the period before Christmas and each one lasted about 90 minutes. I thought, “Ah well, if I can stand it that long, indigestion it must be.”
Christmas day I had to call 111 as the session was into the two hour mark and showed no signs of subsiding. The On Call Doctor gave me codeine phosphate as he said that it was a duodenal ulcer and I should go to my GP. The GP said it was definitely not DU but Gall Bladder.
At the beginning of January, same deal with the pain and violent vomiting but this time the 111 call was escalated to 999 and I was taken into hospital where after numerous scans (MRI, CT) I was discharged with no diagnosis. (Mystery illness). My GP was not happy and wrote to the specialist who I later saw by appointment. He told me that the scans revealed no signs of tumours or other explainable problems and that the problems might be caused by intermittent twisting on the gut and that I had a hiatus hernia.
I was as happy as Larry with that.
Into February no and 999 again and re-admitted and in hospital for eight days during which time I had Barium Meal (where the aforementioned Hiatus Hernia had disappeared!), UltraSound, MRCP, CT TAP which between them showed mo metastases, vague lesion anterior to the portal vein, soft tissue mass at the porta, dilated CBD(?), thick walled GB (?) thin walled GB (?). During this stay on the ward, I had another episode which lasted seven hours and was mitigated by IV Morphine and IV Paracetamol. A Day or so later, I was discharged but a Doctor came to see me accompanied by a Nurse. I knew that it was bad news when he sat on the bed and the Nurse held my hand. Even so, the illness wasn’t named and after discharge I had no idea of the seriousness of me predicament. Within four days, I was back in A&E with the most painful of these events yet and this time it seemed that the problem was receiving more serious consideration with MDT scheduled. more extensive blood tests in the search for markers and a video conference with a specialist at another hospital.
The pain in the upper left abdomen is apparently un-related (?) and may still be an intermittent twisted gut (volvolvus) and the finding of the tumour may have been just “by the way”. Who knows? I doubt that I ever will.
In all this, my apparent or likely condition has never been named. I found out by reading my copy of the Discharge Letter to my GP.
I have never had the jaundice or tireness symptoms just the those mentioned above.