Bit of a strange one for a watch forum but I know we have some medical experts here and maybe others have been through the same. A bit of background, my dad had kidney cancer several years ago which was confined to the kidney and extracted. As a result he has yearly tests and scans to make sure things are still ok. The latest check was at the end of last year which showed a hot spot in the pancreas. At the time what they found was small, around 10-15mm, and he was sent by his local cancer department to Kings in London for an endoscopy and biopsy of the surrounding area. For some reason this took three months to arrange and we have been waiting since for the report to be sent back to the local department for a follow up consultation so he would have a plan.
Local department was chased again last week and the answer was that he was now no longer a patient under them and has now got an outpatient appointment with general surgery in a weeks time, again at Kings. All this has been done without any results being given to him and no explanation of what it means and why it has taken four to five months to get to
I’m hoping that this is a positive step as it means surgery is a possible solution and, as I understand it, it’s the only possible cure. Has anyone here any expert knowledge or experience with this that can back up my thinking or correct me. To his credit he seems fairly relaxed about it all but the rest of us are going out of our minds with worry, and the delays and lack of communication have only served to make things worse. Many thanks.
Hi sorry to read your news, I have a good friend who was diagnosed with pancreatic cancer just after Christmas, he had the Whipple procedure the first week of January and then chemo quickly afterward, he is now recovering, his only symptom was no2 turned white, I think in your position all you can do is try to get everything done as quickly as possible,
all i can add to this is you can be put on the ‘cancer pathway’ for testing but thats just a mechanism used to get you seen as quickly as possible or if the tests you need are done at a cancer specialist centre like Kings.
(this is what my father who doesn’t have cancer but had numerous tests done told my partner who was having tests done at UCH cancer unit but only for the reasons outlined above and also didn’t have cancer)
Also try to get the consultants secretary details and call them to find out what’s going on, they are the best point of contact.
HTH.
I can give no advice but you all have my very best wishes.
Sorry to hear your news and your experience which unfortunately is far too common in my experience. My mum had pancreatic cancer and faced similar delays and as said above the secretaries are the key. I found them very supportive to our concerns and greatly helped.
I am very sorry to hear of this situation.
First of all, there are a couple of different pancreatic cancers.
They usually (at least for the prevalent type) have very poor outcomes and most patients will die within a rather short period of time. Approx 25% 5 year survival if surgery was possible. Surgery usually is only viable in 20-30% of the cases.
These poor numbers are a result of late treatment: at the time of diagnosing the cancer, it has already advanced beyond what can be surgically removed (growth around the artery, into the spine). Sometimes an agressive chemo treatment (neo adjuvant) can reduce this and make the Whipple (nowadays often a pancreaticoduodenectomy with stented gastrosomy) procedure possible.
After surgery the standard treatment is chemo, gemcitabine.
I am quite shocked about the 4-5 month period you mention.
Usually pancreatic cancer is very agressive and speed is key to get a positive result.
To me this sounds like either incompetence or neglect and I would want to discuss this with a specialized lawyer/a 2nd opinion medical professional.
BTW: if surgery is possible, see if the laparoscopic procedure is available. Much faster recovery, not the huge wounds etc.
I would do what I could to get it from prof. Topal at the KZ Leuven.
Absolutely brilliant surgeon.
I wish you all the best.
Last edited by Bernard; 3rd May 2022 at 22:15.
Thanks all. I’m hoping that, as he is checked yearly, it will be early stage and operable. From what I’ve found online the size is considered small and the fact he has been handed over to general surgery after biopsy sounds positive. I guess we’ll know more next week.
Best possible news today. Turns out that, despite being told that it was, it’s not pancreatic cancer. It’s a recurrence of his previous cancer that is in the area of the pancreas. It’s not fast growing, hasn’t spread and can be removed with keyhole surgery with no further treatment.
The questions about referral times and lack of communication, they will have known this for a month and could easily have communicated by phone, can wait for now, today is about relief!
Thats great news, and must be a relief for you and all your family. I lost a friend to pancreatic cancer, he died 5 weeks after diagnosis. A horrible disease. Best wishes to all
Very pleased to hear your update. Good news, and hopefully a speedy recovery after the op.
It's just a matter of time...
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