A forum for advanced pancreatic cancer issues

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Joined: Wed Dec 16, 2015 9:55 am

loved one just diagnosed with advanced pancreatic canncer

Postby sarahxef » Wed Dec 16, 2015 11:45 am

Hi everyone,

This is very new to me. I had absolutely no idea about how common pancreatic cancer is until I found out this week that my aunt has been diagnosed with advanced pancreatic caner, which has spread to her liver, spine and lungs. This is devastating news for me and my family, especially my father as she is his only sibling.

She is starting radiotherapy on her spine today, but has been told by the consultant that she has less than a year to live. She is in her 50s.

I am just reaching out for any advice, as none of us are quite sure what to expect. My other main concern is that she might be carrying a familial pancreatic cancer gene, so I am concerned for my father - not sure if myself or my sister should be worried too?

I'd love to know whether you advise that we (especially my father) should get screened for any of the genes that can lead to pancreatic cancer, such as the below, and if anyone knows how and where we can get screened (we live in Surrey, near London):

- MEN1, multiple endocrine neoplasia type 1
- Von hippal-lindaul syndrome - this gene causes a multiplication of blood vessels in the spine, etc.
- Tuberous sclerosis- this causes extra tissue growth in the pancreas which may become cancerous and is the TSC1 gene.

Thank you,

Sarah x

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Joined: Sun Dec 29, 2013 10:35 am

Re: loved one just diagnosed with advanced pancreatic cannce

Postby Didge » Wed Dec 16, 2015 12:50 pm

Hi Sarah, sorry to hear about your aunt. Will she be offered chemo after radio? As far as screening is concerned, you need two cases in a family for screening to be considered and there is a screening programme in Liverpool at the moment I think. I don't think they have successfully identified all the genes with a possible connection with PC although one is the BRCA gene associated with breast cancer which my partner was tested for, being the second member in his family with PC. I don't think paying for private screening is an option especially if there is just one person in the family with it but I may be wrong!

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Joined: Wed Dec 16, 2015 9:55 am

Re: loved one just diagnosed with advanced pancreatic cannce

Postby sarahxef » Wed Dec 16, 2015 1:07 pm

Hi Didge, thank you. I don't know about chemo, I think they are waiting to see - she is having a PET (?) scan on Monday, so I guess that is going to show more clear results. I've emailed pancreaticcancer.org's support email, and a nurse has replied this:

"You are absolutely right that there can be a hereditary link to some cancers. Approximately 5-10% of pancreatic cancers are known as familial pancreatic cancer. This could be down to an underlying genetic mutation, such as the BRCA1 or BRCA 2 gene, which is also prevalent in breast cancer.

Other things that need to be considered, is the age of your aunt when she was diagnosed. So for example, if your aunt was in her 70’s there is less risk, and a higher risk if she is in her 40’s. As it is your aunt and not your mum, this also is a lower risk for you, as such. Also, Sarah, if there are other cancers in the family, such as breast or ovarian, then again, this may pose you at a higher risk. As you can see, it is quite a complex process and some of the information below may also help?

Europac are looking at two types of families - those with inherited pancreatitis and those with an inherited predisposition to pancreatic cancer (familial pancreatic cancer). They are interested however, in people with a minimum of 2 blood relatives who have had pancreatic cancer, and you can contact them directly.

Researchers hope not only to learn more about the genetic causes of pancreatic cancer but also to assist in the development of new treatments. In addition, the ability to identify people at high risk will allow researchers to develop new screening systems to detect early pancreatic cancer.

People with familial pancreatic cancer and their unaffected family members can join the study by completing questionnaires and giving a blood sample. The blood is tested to try to identify which gene(s) may be responsible for familial pancreatic cancer. If a link is identified between a family history and pancreatic cancer unaffected family members may be offered secondary screening. If the faulty gene(s) is identified individuals on the registry will be offered testing if appropriate.

EUROPAC has developed a separate secondary screening study for people on either register who are at high risk of developing pancreatic cancer. Screening combines imaging (EUS and/or CT) and blood tests with the option of molecular analysis of pancreatic juice sampled through an ERCP. The juice is examined for changes in genes called K-Ras, p53 and p16. If there are any changes in these genes, the case is referred to the Liverpool Professorial Pancreas Research Unit for further testing. The aim is to identify the best screening regime to detect the early changes of pancreatic cancer. Screening usually starts at age 40 and is accessed via the EUROPAC registry, which allows a full risk assessment."

Sarah x