Dad just diagnosed

[CJF]

Hi everyone,

 

I've just been reading some of the information on the website and some of the posts by others on this forum and found it all very helpful, so I thought I'd post about my experience.

 

My dad is 83 and has just been diagnosed with pancreatic cancer - probably stage 4 starting in the head of the pancreas. He's not been well for a while, and over the last few months has been in and out of hospital a lot with heart and other problems, then in early Jan he had a fall and the paramedics who came noticed he looked very yellow and took him to hospital. Lots of tests and scans (ultrasound, CT and MRI) followed and we gradually got a clearer idea of what was going on. Then he had an ERCP carried out to take a sample and insert a stent. Finally we had a family meeting with a MacMillan nurse who talked us through everything, explained that it was almost certainly pancreatic cancer, that it was inoperable due to its location, his age and his health, and that chemo would be an option to give him more time but we would have to weigh up the side effects against his quality of life and dad seems to be leaning towards letting it run its course without chemo. We are now waiting for the results of the tests on the sample taken during the ERCP for more information to make a decision. Meanwhile his jaundice doesn't seem to be getting much better so he's still stuck in hospital and couldn't even start chemo if he wanted to. He's very lethargic and sleeping most of the time.

 

The doctors and nurses have all been wonderful and luckily my mum and my two sisters are all around so we can support each other. We have mostly accepted the position and limited treatment options available to him and started to think about how we support him through the time left.

 

As we have reached out to the wider family with the news, some of them have started to push some other treatment options they know of - immunotherapy, proton beam, etc. I hadn't heard about any of these before and there's limited information about them from the usual "mainstream" sources - I'd rather trust doctors, NHS, CRUK or PCUK than random Google searches. However, I have seen several posts in here about them and they have been very helpful to understand a bit more. From what I can see they are unlikely to be suitable for someone in his position.

 

So I'm a bit torn. My heart says to support my dad in his decision and make the most of the time without additional suffering. However there's another part of me that thinks "No, we should fight for every chance at extra time!" I'm sure this dilemma is familiar to others on this forum, I'd be interested to hear about other people's experiences.

[LisaC]

It is a very difficult decision to make, and there are a lot of stories out there of all the weird and wonderful treatments available for a price.

From what I read of proton beam therapy I don’t think it was suitable for pancreatic cancer. 

To me my fiancés cancer was stage 4 spread to the liver, he was having lots of issues due to the cancer, pain, swelling, blood clots and infections, treatment just seemed to prolong the inevitable and he was suffering every day which was really hard to see your 37 year old partner go through, he never got to start treatment and I’m kind of glad and his family were pushing for private treatment and all sorts which was really hard to deal with as I knew he would not want to suffer and the treatment he would of had was quite a gruelling cycle of super strong chemo. 
 

I trusted the drs and specialist nurses at the hospital and spoke a lot with the nurses here too, if your dad is able to have a chat with the nurses about what treatment options may entail for him it might help

him think about his options.

[Borobi]

I agree with Lisa C. The weird and wonderful (and even the legitimate overseas clinics) rarely seem to have better outcomes for Pancreatic cancer than standard UK treatment. And they all involve massive interventions and often long recovery times. Chemo can give you extra time but there are side effects. Your dad is 83 and sounds like he is in poor health apart from the pancreatic cancer. Maybe the family should let him make his own mind up. 

[boa]

I agree with LisaC and Borobi. The person who makes the decision what to do is the person with cancer. And whilst your wider family might want to suggest other treatments It really is up to your Dad what he wants to do,

I have been around these forums for about six years and I agree with Borobi that some of the overseas treatments mean massive interventions with not much evidence that outcomes are better than the NHS here.

[CJF]

Thanks for the input everyone, very reassuring that your experiences and thoughts align with my own.

 

Sadly everything now points to the cancer spreading to other organs and lymph nodes. Also he is starting to experience problems with his kidneys, so the doctors have reduced his life expectancy further. It's pretty clear he's not going to be well enough for any major interventions and the focus now has to be on getting him comfortable and making sure he has the best standard of life for his remaining time.

 

Happily, his jaundice has been slowly improving (he's not itchy any more which has come as a huge relief to him!) so we should be able to move him out of the hospital and into some kind of care soon. Originally we thought a hospice would be suitable, but now it looks like a care home will be more appropriate - we have a meeting with the doctors and palliative care team today to discuss options.

 

Thanks again - nice to be able to share with people who understand.