The oncologist we saw at Broomfield Hospital said it was standard practice that once pancreatic cancer has spread to the liver no surgery is performed and only chemotherapy is offered. No other form of treatment is on offer.
My wife has had folferinox and stereotactic radiotherapy and although her need for insulin has actually disappeared and her weight has increased thus making us think that things have improved, we were told the petscan shows metastasis in the Liver and so offer only gemi as treatment. My wife refuses to have more chemotherapy as the neuropathy was quite severe and she thinks more would make it worse.
What other treatments are there on the NHS and is surgery really ruled out?
Surely the liver cancers can be dealt with by injecting chemotherapy into the tumours? Or liver cancers can be dealt with after surgery on the pancreas? There was no discussion offered of ways of improving the prognosis despite my request for some ideas as to what to do.
The oncologist appeared to not be well informed as to my wife’s case and had to be persuaded to actually pull up the scans to show us. And I came away thinking I could have been shown anything.
My wife could have been diagnosed six months earlier but the petscan was cancelled and we were told it was unnecessary and then she was treated for functional dyspepsia which even the nutritionist thought strange.
We got the cancer diagnosis with a trip to Malaysia where we were told there was no metastasis and to get treatment immediately. They thought the whipple procedure might be possible.
The NHS took three months to assign an oncologist despite all the scans and biopsies being sent to them. Given what we assumed was the need for urgency, we had a private consultation and embarked on chemotherapy therapy with a view to reducing the tumour in the hope of a whipple procedure. It had locally grown to impact an artery. Which I understand for some surgeons it could still be dealt with surgically.
And now we are in this situation with the NHS, whose treatment of my wife has been peculiarly lacking in urgency or communication.
What can we do?
Hi Orangeblue31
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
As for the way forward, could you seek a second opinion?
While you're waiting for replies, it would be great if you could put something about your wife's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
I don't have any personal experience of getting a second opinion but this information from Macmillan on getting a second opinion, tells you about the advantages and disadvantages as well as how to arrange one.
The oncologist is right that a multidisciplinary team (MDT) meeting will have taken place to decide the best way forward after your wife's recent scan results. You could ask for an appointment with your wife's consultant so that they can explain why only chemo is now an option.
My husband has just started chemo to hopefully shrink his tumour away from a vital blood vessel which currently makes having surgery too risky. He's only had one so far but, thankfully, doesn't seem to be suffering from any major side effects.
Wishing you and your wife all the best.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
