How big can a Pancreatic tumour be ...?

[emcee46]

My partner has just been diagnosed (we think) with what is, apparently, inoperable Pancreatic Cancer. I say 'we think' because there is, apparently, a small doubt in the surgeon's mind about the size of this 'mass'. When viewing the CT scan, he pointed out the mass which is some 80mm in diameter and which appears to obliterate the whole outline of the pancreas. His feeling is that there is the remote possibility that this could be a lymphoma or even a secondary. Whilst we await further CT scans, blood tests and an endoscopy/biopsy, IS it at all likely this could be something else - like a serous cystadenoma - or are we clutching at straws like so many others have done? Either way, it would appear to be a malignancy and I would like to ask everyone what their opinion is on the best combinations of chemo drugs - like the American 'GTX Protocol' selection of Gemcitabine , Docetaxel & Capecitabine ... or Gemcitabine, Docetaxel & Bevacizumab. If we were lucky enough to be able to participate in any of the trials, such as with the adenovector TNF-erade or the 'radioactive silicon injection', does anyone have any advice on how to go about this? (I'm not knowledgeable about these things - just a Google search like so many others have done).

[emcee46]

My partner has finally been diagnosed here with an 'Adenosquamous Carcinomas Pancreas' - which is around 4 inches across and attached to her stomach wall. The tumor is described as locally advanced but not metastatic so far as they can see.

I gather it's very rare and I also gather that its prognosis is not as good even as the worst one that most people get? Obviously, ANY help from ANYone is going to be very gratefully received as I haven't the first idea of what kind of treatment (if any) can impact this horrible 'lump' ... but, of course, that doesn't mean to say I'm ever going to give up trying.

Thanks all of you for everything so far, but this is where I need to step up a gear!

It's obviously Stage 4, but has anyone got any thoughts about whether the best course of treatment would be a targeted radio/chemo or just straightforward chemo - and, if the latter, which drugs?

I have been looking at the latest platinum-based drug researched in the UK which they say is 80 times more toxic to cancer cells than Cisplatin. Apparently, it is quite an inert and relatively harmless thing until light is introduced to it when it becomes a veritable rottweiler towards cancer cells. I don't think it's going to get introduced through clinical trials in time for us to use, but it may well benefit those of you posting here in the future.

Basically, though, I'm looking for a hopeful path thru this latest bad news for us again .... I realise that this forum seems to be rarely used and I get most of my useful answers through some of the American websites - but it would be good to get some input from this side of the Atlantic as well. Can anyone help?

[chinup]

Hello emcee46

I can well understand your disappointment that this site seems to be relatively inert compared to the American forums. To be honest Pancreatic cancer seems to be very low down on the list of priorities for most oncologists and research centres in this country and I can only imagine that this is because the prognosis (whatever the type) is generally very poor and therefore doesn't attrach the funding. Because diagnosis often comes when the disease is advanced, sufferers and carers don't really have time to do the research and it seems to me that once the cancer is deemed advanced, there are very few options available other than slight variations on a cocktail of chemotherapy drugs and even these are only offered for palliative care. The best bet seems to be the surgery option but only something like 10% of those suffering from the disease are able to have it. Pancreatic cancers seem to be very aggresive once they take hold. I have read of people who seem to do well after surgery, start on the chemo, everything seems to be in check and then suddenly, wallop, the tumours have spread all over. On the other hand, there is a 75 year old relative of one of the posters here who is doing just fine. My mother, aged 68, has pancreatic adenocarcinoma, first diagnosed nearly twelve months ago as a 1 inch mass on the tail of her pancreas, small amount of lymph involvement but no distant spread. Her worst problem at this time was pain. She was given very few options and any suggestions we made as to other treatments was met with polite but firm refusal. She was given chemotherapy (gemcitabine and cistaplin) which she found really tough, and after 6 months she was told that the cancer was exactly the same as it was when it was diagnosed. This was considered a good result. Two months ago, she was told to go home, get fit and go on holiday and that a clinic appointment would be made. Everyone seemed pleased with her progress. A month after being told this she started to feel unwell again and a scan relvealed a huge mass of tumour spread in her lower abdomen which is fused to her pelvis and completely inoperable. It makes me very sad to say that today she is coming out of hospital after emergency surgery for a blocked bowel so that she can die at home which is her final wish. She has been given a week or two to live.

I don't know how well your partner is at the moment but my advice to you would be to stay very strong and do everything you can to try and get the best treatment possible, but be aware that this may be difficult and you will have to be very persistant. I do hope that you will be able to take some time away from thinking about the disease (easier said than done, I know) and just enjoy being with each other. I wish you both all the very best.

[emcee46]

Thank you so much - I was just beginning to think that the national apathy which seems to have spread throughout this once great nation of ours was terminal as well.

Overall, I don't think you have told me much that I didn't suspect already ... nevertheless, thank you again for just simply answering. I don't think anyone would have done more research than I've done since this was diagnosed yet, even so, there are still so many questions, as you probably know.

The surgeon who is passing us on now to an oncologist at The xx said he had been through this himself recently and that, broadly speaking, people he told about this rotten disease fell into three categories:- those who simply said: "Thank you doctor ... I'm off on a world cruise ... and, no, I don't want any treatment" ... 'down' to those who went for everything they could to keep them on the planet. As he said, most fell into the middle somewhere - i.e. they made a few basic attempts to improve their diet, mental strength and general well-being, but, overall, they accepted their fate.

However, his last group was probably the most thought-provoking:- these were the people who decided to go for every possible treatment that they could to keep them alive. But .... his point here was that, if you only had a few months to live because that was the sort of cancer you had, did you want to spend it in pain, throwing up, being inserted into a CT tube, etc., etc., when you could have taken the middle road and led a relatively pain-free life until whatever was going to be happened ... or otherwise?

Now that's the REAL question ... isn't it?

[Ellie]

Hi emcee46

I am so sorry to read about your partner. Although you have had only one reply to your posting, I am sure that everyone who does use this site will be wishing you all the luck in the world in your search for some answers to what can be done. It's a real shame that this site isn't used more, but it seems that people come on here in shock at their own, or relatives diagnosis, and then after a few postings just disappear. Whether they are too involved in their own situation, or the worst has happened, it's hard to know, but like Chinup also said, this cancer seems to be one of the worst to recover from.

I have been using the site since late last year, but haven't seen anyone post who has had the same diagnosis as your partner. Maybe that's why you haven't had any real replies - maybe no one has the answers you are looking for. It's hard to know what to say sometimes. I certainly can't help you, but I did just want to offer my support to you, knowing what it is like to be the partner of someone who has been diagnosed with another type of pancreatic cancer.

Is there no one at the hospital who can give you more specialist advice? Have you tried the Macmillan or Cancerbackup sites, or CancerCompass in the USA? One small consolation is that we DO have much more access to information, via the internet, than anyone would have done 20 years ago. There again, that can lead to frustration and disappointment when you read of new treatments which won't be available to your loved one at this time.

It sounds like you are doing everything you can to research your partner's diagnosis and again, Chinup gave such good advice to try and make the most of every day together and enjoy whatever good times you can.

Wishing you all the luck and strength in the world to cope with whatever the future holds. Even if you only use this site to get your thoughts, feelings, frustrations & worries out in the open, then I'm sure it will help you a little to write them down.

Best wishes

Ellie

[Ellie]

Dear Chinup

I am so very sorry to hear about your mum. It must be so utterly heartbreaking to think your mum has had treatment but nothing more can now be done. I just hope that the medical staff will keep your mum comfortable and pain free as much as possible.

Don't know what else I can say......except I also wish you the strength to cope with what lies ahead and I hope you will get to spend as much time as possible with your mum now.

You will be in my thoughts and if you want to post on here, I promise I will reply.

Love

Ellie

xx

[emcee46]

Thanks both of you - for simply caring enough to take the time to answer. Yes, I am a regular poster on the Johns Hopkins, Cancer Compass and MedHelp forums and, yes, even though the treatment available to them in the US may be no better than it is here, they really seem to (like yourselves) simply CARE. Most of the answers I get on those forums come either from patients themselves or people who are losing/have lost loved ones - something which seems to be largely absent on this forum ... ?

I have been travelling to the USA as part of my job for over forty years and, although Americans (like us) have their critics, I have always found 'small-town' or Mr./Ms. Average to be generally caring people who do have time for each other. I'm really not sure if the way we are over here any more towards each other is the way I want to live out my own days ... but that's another story!

Either way, thanks so much again for taking time out to offer support. I really do think that, if a diagnosis of 'simple' pancreatic cancer was bad, then this one is numbing in comparison.

But ... as we all know, we NEVER, EVER give up ... do we?

[morpaul]

Hi emcee46,

I was diagnosed in April 2006 with the same tumor type. It was 7cm and deemed inoperable. I had 3 cycles of chemo (Gemcitabine and Cisplatin). The next CT scan showed the tumour had shrunk to 6cm. I then had chemoradiotherapy with 25 fractions of radiotherapy (1 a day mon-fri for 5 weeks) with a once weekly low dose of Gemcitabine. After this my tumor had shrunk to 2cm! I then had radical surgery - removal of Pancreas, duodenum, gall bladder and spleen). As you can see, 3 years on from diagnosis I am here to tell the tale!! My 'story' is on this site - http://www.pancreaticcancer.org.uk/BioPaul.htm

Clearly I am one of the very, very few who responded well. Age and relative fitness before all this was on my side. Certainly the love and support of family and friends was key but my overall 'positive' outlook and approach was instrumental in my mind.

Take care

Paul

[emcee46]

Have already contacted you privately Paul, but can't say just how important it is for patients (and carers) to be able to cling on to the hope that they can do something ... ANYthing ... to fight back. Thank you.

[emcee46]

Thanks for the thoughts everyone. I have been asking everywhere about the possibility of RFA (Radio Frequency Ablation) - http://www.ingentaconnect.com/content/klu/423/2007/00000392/00000001/00000098?crawler=true - and, although the answers are somewhat mixed, it would seem to me that, if the object of the excercise with an inoperable, aggressive and life-threating tumour such as the one I've mentioned here is to contain and shrink until a better treatment is devised, I haven't actually come across (from a layman's point of view) a better, less invasive and more effective way of doing this than RFA. My excursions onto American websites such as the Johns Hopkins pancreatic cancer forum and the Cancer Compass forum have yielded a veritable treasure trove of information about this method of treatment. Although it would appear there are no claims to it being regarded as a 'curative', it surely is worth considering as a delaying tactic. And, in closing, they are now mentioning a 'microwave' version of the same thing which, they declare, has even more possibilities. Anybody got any more thoughts?