references to pancreatic cancer in the news

My wife has inoperable pancreatic cancer and four years later can say that the chemo she receives thus far keeps it in check. She is sometimes very affected by some of the references to pancreatic cancer in the news, specially when it is about a 'celeb' either diagnosed with it ie Pavarotti or dying from it ie Gareth Hunt (d.14/03/07). There were some sentences about him in the BBC story reporting it. One of the better reports in my view.

'A statement from his agent said he died at his home in Redhill, Surrey, adding: "He fought the disease with great courage and through his strength of character and his wonderful sense of humour he continued to work right up until the end of 2006." Joanna Lumley said "he kept his illness quiet, only his family and a few close friends knew. I went out with him for his birthday in February and he was pretty frail but still hysterically funny."

What can upset her the most is when pancreatic cancer is referred to in hopeless terms. I believe journalists need to be careful how they report cancer statistics and stereotypes.

afc333

my best wishes to you and your wife.

I understand completely how she must feel, it cant do her morale much good to hear how brave these celebs are in the face of the cancer.

I lost my dad to it in 2003, it hurts me when I read how brave and defiant 'celebs' are when my dad fought with all his worth but it still beat him.

Hello.. I'm new to this forum. My dad was diagnosed with inoperable pancreatic cancer on 8th March and he came home on 13th March. He hasn't been offered any treatment (and doesn't want any). He is 68.

When we saw the story about Gareth Hunt in the papers, we decided not to give him the newspaper that day. He is bed bound and isn't mobile - so relies on us to take his paper in to him. We made up some story about throwing the paper out by accident. My sister did tell him that Gareth Hunt had died, and when he asked how, said it was the same as he had.

The problem was, my dad wants to die quickly (he has this "thing" about the cancer not dragging on) and we didn't want him to see the bit about a "2 year battle" as we felt that might make him very anxious that his illness would go on for years. So, AFC, I guess we were holding the story back for different reasons.... but I do understand your point. Thing is, every case is so different.... as I am finding the more I read into Pancreatic cancer.

We have no idea how long dad has, (the Registrar who told us his diagnosis said that because the cancer had spread it would be "months") and the weird thing is that my dad has no pain at all. Which makes me wonder if the cancer is as advanced as the hospital made out?

Anyway - I am veering off topic now so maybe will have a look around the forum to see if there is a better place to post questions about my dad.....

This story caught my eye this morning.

Some of the comments are really harsh - I wonder if these people have ever faced a diagnosis of "Terminally Ill" themselves!

http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=453095&in_page_id=1770

OMG thats such a shame but he is alive and well now and if it was me I think I would leave it at that and start again. We are only human and doctors are human too, yes there are lessons to be learned but the money he could sue for could be better spent improving treatment and diagnosis of pancreatic cancers. He probably sold his story too.

I think the paper could have better used their space and devoted a section to the figures for pancreatic cancer and how a diagnosis of it affects the family unit and changes their lives. The light needs to be shed to the world about this horrid silent killer. It upsets me that other cancers get much more publicity and funding.

You should post up a comment on the Mail website to that effect, Lynn. It's a very good point.

hi ya. bbc breakfast was following the same story.it upset me a bit, as i dont think he realises how vauable his life is. i emailed them, and they acctually read out my message. basically i said i would swap my pancreatic cancer with being broke anyday. unfortunatly they did not mention that it was pancreatic cancer i have, just cancer ,but i think it got the message across. i have to apologise for my typing, but i am still in hospital so writing this on a crappy patient line keyboard.

should be home today

see ya

simon

Hey Simon!

I'm quite impressed you're using Patient Line to get online. Yes, that's another good point you're making.

I didn't see BBC Breakfast but I'll have a look on their website to see if there is any mention of the story (and you!).

Hope you get out today....

Edited to add - here's the link to the video news clip of John Brandrick

http://news.bbc.co.uk/player/nol/newsid_6630000/newsid_6633300/6633357.stm?bw=bb&mp=wm

Hi Simon and Jan, well done youSimon! I didnt even know you could get online in the hospital it mustnt have reached dundee yet! But then again they didnt seem to know what to do when I asked about how to complain either!

So glad you emailed them, and put the other side of the story across! Im sure any of us would give up our right arm to be in his position now!

You get urself better soon Simon!

Jan I did just that and posted a comment to them! (After a few wines so I hope it reads ok)!

Lynn

This story was on Jeremy Vine on Radio 2 this afternoon - they were taking calls and emails, but I was driving at the time so couldn't ring up!

It was only a short piece, and JV spoke to John Brandrick, but I missed that bit. From what I can gather he said he had life insurance and that's why he wasn't worried about what his family would do after he'd gone.

I think BBC Radio has a "Listen Again" feature on the website so if I get chance I might listen to it later.

Lynn - good for you, I'll go and look for your comment later.

I went looking for it and they havent posted it! I wonder if they close postings after a short while?

Or maybe they have to vet them first but there were no obscenities! So I should pass that one!

Lynn

I couldn't find it either, Lynn. I wonder if they do have to be cleared first? Strange....

The story of John Brandrick is still on the BBC site, as well as the video. The link to the story is

http://news.bbc.co.uk/1/hi/england/cornwall/6615351.stm

Yet again, there seems to be made the assumption that pancreatic cancer means terminal cancer. We need to keep up the publicity both for more research (and funding) and that already progress has been made and that some pc sufferers are being successfully managed.

There is quite a major story on the BBC news site where it is reporting the long term plan of Cancer UK. In one sense it is a sad news story but in another it plugs very strongly that something must be done about more research on pancreatic cancer. I welcome this coverage. Here is the link

http://news.bbc.co.uk/1/hi/health/6634517.stm

Its worth following up postings and emails on the BBC site too.

Interesting that the BBC has featured a PC patient. Thanks for the link. The lady they interviewed is very philosophical.

I wondered if anybody had seen this, and if it's as encouraging as it sounds?

http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/new-surgery-offers-pancreatic-cancer-hope-793970.html

Dear Rosieh, Yes we also saw the article about the new operation being pioneered at the Royal Free and when my wife goes for her next appointment there with the oncology dept we are going to ask about it. This Feb we celebrated with thanks to God the fifth anniversary of her pc diagnosis.

Patrick Swayze's story will be followed with great interest (I loved Ghost) and as always my hope is that when a celeb is involved it will bring publicity leading to concrete support for more research regarding pancreatic cancer. afc

If surgeons cannot remove all of the tumour there is a high risk of the cancer returning at the site of the surgery or to spread elsewhere in the body such as the liver. Chemotherapy is usually given to help reduce this risk. Portal vein resections such as these now reported have been undertaken for 20 years in selected patients. The replacement of the portal vein is already undertaken by many surgeons elsewhere in London, the rest of the UK and abroad to enable patients to have more or all of their tumour removed. The main issue is which patients will get benefit from this technique and that is still debated by surgeons nationally and internationally. Once the tumour has encased the portal vein there is a risk the cancer is already in the blood system and so may spread elsewhere so systemic treatment with chemotherapy is still likely to be required.

Thanks for the extra info, Administrator (is that you, Sue??)

afc333. it is great to hear that you and your wife have just celebrated 5 years post diagnosis.

Did anybody see Hotel Babylon earlier this week, Tuesday 25th March? The main plot was about the staff trying to cope with the demands of the film crew. The subplot which came on screen without warning was about a young woman recently diagnosed with pancreatic cancer and given six months to live. She wants to have her last fling. The story develops that she broke with her boyfriend without telling him because she didn't want him to see her go downhill. The hotel purser gets involved and engineers the boyfriend to come to the hotel and be told, and eventually he finds out about the cancer and is determined to journey with her and support her.

My wife found it very distressing and we switched off. Two questions went through my mind. The BBC did give a warning that there was objectionable language, but didn't say anything about the plot. The second was that the story writer chose pancreatic cancer because it was terminal. There is a line about 'Can't they use lasers or something to treat it? No. This is it' This is clearly the public perception.

If anybody wants to check this out, I found Iplayer works well - you can download it and then go to any part of the programme.

So sorry she was upset. There was some advance warning in a report in a Scottish newspaper earlier in the week.

They also mentioned losing hair from chemotherapy - why do people always assume you lose your hair which doesn't happen with the standard drugs used for treating pancreatic cancer (just thinning)

This is a reply to afc333 (couldn't do a PM!). It's great to hear your wife's still OK after 5 years - pancreatic cancer is not 'hopeless'. My wife also has inoperable and we both aim to be celebrating wedding anniveraries for many years to come. She, like your wife, refuses to accept the prognosis and protects herself from any mention of terminal cancer, especially in relation to pancreatic. That can be stressful for us as partners, and it's difficult to maintain a positive outlook when your own oncologist treats you with a sense of impending doom! what sorts of symptoms does your wife have now?

Simon