External Pancreatic Tumor and Liver blood vessels

[Matt1973]

Hi all. First of all, I am so glad there is a place to read up on things and to feel there is support out there... a big thank you to everyone who contributes here.

My mum, who was until recently a picture of good health, at 74, was diagnosed only yesterday. From what I understand (she lives abroad) she has a tumour on the outside of the Pancreas but it has wrapped itself around the blood vessels to/from the liver.

Initially I thought it would be 'good' news that it was external to the Pancreas but apparently on Holland, where she lives, the doctors do not / cannot operate on tumours affecting these blood vessels as it would be 'tantamount to murdering her'.

I am trying to come to terms with how final this all sounds, after being told for weeks they couldn't find anything wrong with her on various scans and tests. Therefore I guess it is only natural that I question such a blank refusal to invest more time or energy into exploring solutions to save her life... has anyone ever heard of this or similar diagnoses?

[julieg]

Hi,my Mum was diagnosed with PC about 8 weeks ago she is also 74, we have been told that her tumour has also grown around major blood vessels to her stomach. They cannot operate as they would have to remove these essential blood vessels also and she could not survive without them. Sounds similar.

Best wishes, stay strong it's a tough journey.

[J_T]

Hi Matt and welcome to the forum and sorry to hear of your mum's diagnosis.

It is extremely common for the major arteries to be involved with pancreatic cancer, its the reason so many patients are 'inoperable'. Your mum may be well enough to have chemotherapy which can be used as palliative treatment but sometimes patients respond well and the tumour can shrink away from the artery and the Whipple procedure can then be carried out. Unfortunately this is not common but it does happen. Some patients have been to Heidelberg in Germany for the operation when its been refused in the UK, sometimes successfully, sometimes not. The Heidelberg team would have to review your mum's case before she would be accepted for treatment and it is also very costly.

Pancreatic cancer is a tough cancer to have, find out all you can and make sure mum asks questions and pushes for treatments, in short make a nuisance of herself!

You will get plenty of support here and learn a lot that should help you and your mum. Keep posting.

Regards

Julia

[Matt1973]

Awesome... thanks, both, for your replies. We'll have a chat with the family, mum and the docs to see what makes sense for her particular situation.

[Sueoliver]

Hi my mum is 76 and was diagnosed in May. Her tumour also involves blood vessels and she was told was inoperable. Mum is currently on folfironox chemo as recommended by her oncologist. Ask as many questions as you can and try and get treatment moving as quickly as you can. This is a good forum with lots of information. The nurses on here are excellent and very helpful.

Just be prepared for a roller coaster ride!

I hope your mum can start treatment soon. Take care. Sue

[Matt1973]

Thanks Sue. I am going to collate all my sources of info and see what the overall picture looks like. Will mention Folfironox. Mum is very reluctant to try ANY chemo. I am flying out to see her today. Apparently there are two options, one lighter and one heavier type of chemo. First of all though, they are yet to confirm if they've been able to take a sample of the cancer cells that they need to inform any decision.

[Matt1973]

Hello all. Anyone know anything about Gemcitabine?

[J_T]

Hi Matt, quite often treatment can be started without finite results, my husband didn't get a definitive diagnosis until well into his chemotherapy treatment.

Gemcitabine is the gold standard treatment for pc and is usually very well tolerated. Folfirinox is a newer treatment and, statistically, has better results in terms of dealing with the tumour and in longevity. Saying that, there is a lot to be said for personalising the treatment to the patient and I think quite a bit of research is going into this. Like anything, what suits or works for one may not necessarily work for another. I'm sure your mum's oncologist will have all the answers, at least I hope so!

You can phone or email the nurses on this site, Dianne and Jeni. They are specialist in the field and have a wealth of knowledge and advice and are always ready to help. Be aware they work office hours.

Safe journey.

Julia

[Matt1973]

Many thanks. Because this is all taking place in Holland where my brother is trying to help mum, and speaks to the docs, I am a little bit removed from it all. He told me today the main oncologist wasn't very happy about him asking so many questions (!), to the point where the doctor started just shrugging his shoulders and then... actually walked out! The doc also had never heard of Adeno, which I think is another chemo option? I am flying out there to see if I can help.

[Matt1973]

Also a very interesting trial whose results I think are due to be published: http://clinicaltrials.gov/show/NCT01939665

[J_T]

Never mind what the onc wants, without being rude you must be fully involved with your mums treatment and if you think there is something that can help and its not happening you need to say so.

I've never heard of Adeno either are you thinking of the name of the cancer? Adenocarcinoma of the pancreas? Main chemo treatments are gemcitabine, sometimes with others, eg capcetabine (Gemcap), Folfirinox and in the UK Abraxane has been added to the Cancer Drug Fund but not licensed by NICE yet! Don't know what the situation is in Holland.

I feel quite mad that your onc would walk out of a consultation because you have questions! Is he/she a pancreatic specialist? Our onc was not and we got loads of info from Jeni and told him what we knew. We got the impression that he thought he knew better but to be fair he did do as we asked - and we turned out to be right. This was regarding the use of Creons, so there's an example that they don't always know everything.

Good luck.

[Sueoliver]

I am shocked that an oncologist would walk out! Your poor mum! There must be another oncologist you can see. Oncologists should be positive and helpful! I hope things improve for you all. Sue

[PCUK Nurse Dianne]

HI Matt,

Welcome to the forum, and I am so sorry to hear your mother's story. I am pleased that the forum family have been welcoming as always and provided you with some great information. Please do feel free to be in contact if we can be of help to you. Our support phone line (020 7794 0500) is open from 10-4pm Monday to Friday, however as you are in Holland you may find it helpful to send us an email if we can help (support@pancreaticcancer.org.uk).

Dianne

Pancreatic Cancer Specialist Nurse

Support Team

[Matt1973]

Thanks all. Sorry about the silence. I was back in Holland with mum. She has been very poorly as a result of a stent they placed in the gal duct. That and the sample they took from the tumor caused inflamation and they pumped her full of fluid which she then couldn't get rid of. She's struggling to breathe as the fluid pushes on her lungs and is on oxygen and I've had to ask the hospital to tube feed her because she wasn't eating at all. She is on a lot of morphine too so I asked them to reduce that now. She was given it as she was in a lot of pain from the stent and subsequent problems. Not a great sit rep really. There's still a lot of info and terms I need to get my head around it seems. Creons, Cyber Knife etc. Doc was talking about Gemcitabine but wanted to use it only for symptoms (and wait for those to start) which to me sounds like purely palliative treament. I am uncomfortable with that. That said, mum is very weak at the moment.

[J_T]

Hi Matt, good that you got to Holland safely to see your mum. Have you had the full extent of her problems ie how contained is the tumour etc? Sadly, it may be that palliative chemotherapy is the only option, as it was for my husband. It did help greatly with the effects of the disease and sometimes it CAN shrink the tumour as I mentioned before. You have to be very fit for Folfirinox so maybe that is why the onc has opted for Gem.

Keep us updated on your mums progress and good luck with it.

Julia x