A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Theresa Upton
Posts: 56
Joined: Thu Oct 11, 2018 4:39 pm

Getting confused with all the information

Postby Theresa Upton » Mon Nov 26, 2018 8:25 pm

Hi, I continue to read so much information relating to pancreatic cancer and I am becoming confused. I was diagnosed in September 2018 with pancreatic cancer with liver metastases, the main tumour which is 62mm x 38mm is in the body of my pancreas and is encasing the splenic vessels and the common hepatic artery. The lymph nodes are also affected. At the point of diagnosis my only symptom was tiredness so I was offered folfirinox and I am due to have round 4 this week, I have also been told that my life expectancy can be measured in terms of months not years and it is a prediction that I do want to accept. I have read stories about people with similar diagnosis that have lived for 1, 2, 3 and 4 years after diagnosis and have only had chemo, I have also read other stories about other treatments including nanokife and this is where I get so confused. I appreciate that the whipple is out of the question but should I be pushing for other treatments. My oncologist has suggested that we wait for the midway scan but is not hopeful that any other form of treatment will be offered (it has been suggested that chemo will continue to be offered for as long as I am able to tolerate it) so how do I found out if there is something else out there, how do I get a second opinion and should I wait until he midway scan (due January) before I do anything? I feel I need an honest and informed discussion about the pros and cons of all that is available but I sometimes feel that my oncologist/medical team are restricted when it comes to thinking 'out of the box.
Any thoughts are most welcomed.

Theresa

Undyddarytro
Posts: 19
Joined: Fri Nov 23, 2018 9:29 pm

Re: Getting confused with all the information

Postby Undyddarytro » Mon Nov 26, 2018 8:54 pm

No one can tell you how long you have as everyone is different. A family member had a very similar diagnosis to yours in July 2017. The shock at the begining is so horrendous that you cannot think properly. I would urge you to ask for a second opinion from a centre that is known to treat pancreatic cancer. The results will probably be the same but a different perspective is always useful and you or your nearest and dearest will not have to ask youselves in the future " Would things have been different if. . " My relative who had lost three stone at diagnosis has regained all the weight, has had 20+ chemo folfox and 15 5Fu which is in a pump attached to the pikk line. We are now looking at radiotherapy and a pill version of more chemo. I have also Googled,prayed and research endlessly and know this horrible thing will most probably win in the end but we are now 16 months post diagnosis even though that was not the doctor's prediction. My post sounds so positive when I re read it but it has been so so difficult and I find getting up every morning very difficult. There are so many of us on this horrible journey I hope we can support each other.

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: Getting confused with all the information

Postby toodotty » Mon Nov 26, 2018 10:41 pm

Hi Theresa,
Firstly the stats that you are reading are four years out of date and things have moved on, even if our Oncologists haven't. One thing I have noted is that the people who survive the longest are the ones who do not follow the NHS pathway but do anything and everything in their power that may extend their lives, whether this be taking cannabis, paying for private treatment, changing their diets etc. But you need to do your research now, have as many irons in the fire as you can get so that you can make decisions quickly if you need to. Keep using sites like this but also look at joining facebook groups, I think there is so much information out there much of it extremely useful.


Erika

PCUK Nurse Dianne
Posts: 284
Joined: Tue Aug 14, 2012 3:29 pm

Re: Getting confused with all the information

Postby PCUK Nurse Dianne » Thu Nov 29, 2018 3:36 pm

Theresa it might help to touch base with us on the support line, we could have a long discussion with you about second opinions and some treatment options, probably a bit lengthy for purposes of this discussion forum. Please do be in touch as you may need.

With kind regards,

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic cancer support team
Support line: 0808 801 0707
Email: nurse@pancreaticcancer.org.uk

aishamalvi
Posts: 2
Joined: Sat Mar 09, 2019 5:07 am

Re: Getting confused with all the information

Postby aishamalvi » Wed Mar 13, 2019 8:46 am

Don't look for other patients stories it will lead you in depression. Be positive and fight back it's only way to recover fast.