A forum for family, friends and carers of pancreatic cancer patients

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Mistipop
Posts: 21
Joined: Mon Dec 12, 2011 11:01 pm

Pancreatic cancer hereditary ?

Postby Mistipop » Wed Aug 28, 2013 10:08 pm

Hi, well I've not logged on here since my mum sadly died March 2012 but have felt the need to come back tonight. Although I cannot bring myself to read my old posts I have read a few recent ones and it amazes me how very similar peoples stories are and my heart goes out to each and every one of you going through this hell at the moment.
My friend, who is in her 50's, has just been diagnosed with PC and it has brought everything flooding back...not that it was very far away. My question is can PC be hereditary? Her Dr says no but I have read that if at least 1 close member of your family has had it you are more at risk and tests can be done. After my mum died I mentioned it to my Dr and was fobbed off (no surprise there)
I don't want to sit and wait for the B****** to come and get me if there's something I can do.
Misti
x

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Pancreatic cancer hereditary ?

Postby charney » Thu Aug 29, 2013 9:51 am

Hi I lost my mother in law last August to this wicked disease
My husband and his sister were told there was a 5 percent chance
Of it being hereditary, they have lost a grandfather and their mum both to pc
They are currently joining europac who are in Liverpool and who take details
And are doing studies into this disease, as they have two family members
A father and daughter lost to pc they are hoping they can go on trials with this
Company.

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Pancreatic cancer hereditary ?

Postby LindaH » Thu Aug 29, 2013 9:56 am

Hi Misti,

So sorry to learn about you mum, not easy to know the right words to say, I just hope you are at the stage now were you can remember the wonderful times with your mum and treasure those memories.

Well, you ask about hereditary, my dad died of stomach cancer aged 60, his two sons (different mum to mine) both died of stomach cancer one aged 58 - Arnold and Roland aged 59. I am 59 (60 in October) and I was diagnosed with pancreatic cancer last Christmas.

I went to {Name removed - moderator} for an interview with their head of Oncology and he told me my daughter (aged 21) would be able to have a DNA test to see if she carried the gene....at the time she said no, she doesn't want to know, but I hope she will change her mind as we all know Pancreatic cancer needs to be found at its earliest stages....

There would be no harm in you requesting a DNA and having the test, but it has to be your choice.

Linda x

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Pancreatic cancer hereditary ?

Postby karen17 » Thu Aug 29, 2013 10:58 am

That's interesting Linda, I was not aware of a DNA test for PC. I have read somewhere that if you have a first degree family member with PC then you are at risk and I guess if more than one relative then definitely so. When we had an appointment with the consultant he said he suspected Bob's was genetic although we are not aware of any relatives having this disease. Saying that his mum says she remembers a couple of family members when she was younger going into hospital and being 'open and closed' due to cancer so it makes you wonder. I do worry about our children aged 20 and 24 and if there is a test available would advise them to have it

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Pancreatic cancer hereditary ?

Postby KATB » Thu Aug 29, 2013 11:45 am

It terrifies me.

I have contacted Europac but they only recruit onto their study if you have history in 2 direct family members. They are looking into my grandfather for me as we were never sure what his primary cancer was and now my dad has PC.

If there is anything I can do I'll do it. I understand the 'not wanting to know' but I want to be around for my children so I'd rather catch it early and have the best chance of survival.

I'd go for low dose CT scans annually - in fact I'm considering it now.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Pancreatic cancer hereditary ?

Postby Cathy » Thu Aug 29, 2013 1:36 pm

Hi all

there is something on this site about familial PC.

Link here...

http://www.pancreaticcancer.org.uk/info ... ilial-risk

Cathy

PCUK Nurse Dianne
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: Pancreatic cancer hereditary ?

Postby PCUK Nurse Dianne » Thu Aug 29, 2013 3:33 pm

Thanks Ladies for all your replies,

Cathy thanks for providing the link. We have a lot of people contact the support line about the hereditary link, especially young people who have done a lot of 'internet searching'. As you have mentioned we usually do give out the link for the Europac study run by the Liverpool trials unit (http://europac-org.eu) and they have a very good user friendly web site. As has been mentioned the risk is higher when there are 2 generations of the same family line involved. Of course there are other familial/genetic dispositions that may increase your risk. One of these being the BRCA2 gene, which most people are aware of in breast cancer.
If you have a history of PC in your family, it is worth finding out about other relatives, and also if there is evidence of other cancers. If you contact Europac you can then provide all the information and they can review this for you.

Dianne
Support Team

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: Pancreatic cancer hereditary ?

Postby PCUK Nurse Jeni » Thu Aug 29, 2013 4:42 pm

Hi All,

And can I just add that there is no direct link with Stomach or Gastric cancer and PC, so Linda, what you are referring to with your daughter, is probably some form of genetic counselling, with regard to the multiple instances of cancer in your family tree. There are several gene mutations which can predispose you to cancer of one form or another - only some of these will have a link to pancreatic cancer. (As Dianne mentioned - BRCA2)

Thanks all,

Jeni.

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Pancreatic cancer hereditary ?

Postby marie souter » Thu Aug 29, 2013 8:35 pm

Hi Hun just to let you know PC is linked to the BRCA1&2 Gene .. My grandad had it, my mom has it and is terminally ill ... You can just go to your docs to be referred for testing but the screening for Pancreatic Cancer is actually an invasive procedure and you wouldn't be put forward for that unless you had the BRCA1 gene .... You have to have a history of cancer in your family to be put forward for gene testing, they will build your family tree with you to link the cancer through the family then its a simple blood test and you get the results around a month after testing ... I get my results on the 9th sept .. wish me luck ...

What other cancers have been linked to mutations in BRCA1 and BRCA2?

Harmful BRCA1 mutations may increase a woman’s risk of developing fallopian tube cancer and peritoneal cancer (7, 8). Men with BRCA2 mutations, and to a lesser extent BRCA1 mutations, are also at increased risk of breast cancer (9). Men with harmful BRCA1 or BRCA2 mutations have a higher risk of prostate cancer (10). ****Men and women with BRCA1 or BRCA2 mutations may be at increased risk of pancreatic cancer (11).****

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Pancreatic cancer hereditary ?

Postby marie souter » Thu Aug 29, 2013 8:38 pm

so the test itself is not for DNA on the pancreatic cancer BUT rather on the Gene (BRCA 1 & 2) that carries the mutation, after that the screening on your pancreas is an invasive procedure..am not sure how often you have the procedure as I havent got that far into it yes (am waiting for my BRCA 1&2 results) hope this helps xx

Mistipop
Posts: 21
Joined: Mon Dec 12, 2011 11:01 pm

Re: Pancreatic cancer hereditary ?

Postby Mistipop » Sat Aug 31, 2013 2:30 pm

Thanks everyone..I have been away for a couple of days to a place where there was no mobile signal so couldn't log on to see any replies to my question, now I have I thank you all so much for the info. I did see Europac say you need 2 close family members with PC but how do we know if anyone had it a couple of generations ago? I also thought from what I've read that testing can be quite invasive. Can anyone request the BRCA 1&2 gene test?? I need to do something as I am really worried about this but I have no faith in Doctors these days and past experience tells me I will be fobbed off as some over reactive, paranoid daughter of someone who suffered this horrid disease and never stood a chance :(
XXX

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Pancreatic cancer hereditary ?

Postby marie souter » Sun Sep 01, 2013 10:53 pm

I was told because my mom had pancreatic cancer I Cud b tested as I went loaded with info .. I did my homework and found out this type of cancer was linked to the gene .. Sounds like you are doing yours as well done... I find this helps ... Some drs have god complexes ... My mom btw has 'not' been tested I got my test on the strength of her current diagnosis ... Ask family about other members .. You can provide proof via death certificates .. Other family members can give consent for the gene Dr to access drs records ... Ask cousins etc ...distant cousins even .. Hope this helps honey...peeps can also get the test skipping a generation if a parent refuses to get tested ... If u r positive there is a 50/50 you
r children. Will carry the gene Dr... Good news is if u haven't got it then children won't have it either x

Mistipop
Posts: 21
Joined: Mon Dec 12, 2011 11:01 pm

Re: Pancreatic cancer hereditary ?

Postby Mistipop » Mon Sep 02, 2013 3:37 pm

Thanks Marie, My mum had pancreatic cancer and died 5 months after diagnosis. Really only know of one other person in my family who's had cancer and it wasn't a first relative nor was it pancreatic....now I'm feeling the doctor will just laugh me out of the room.
If I had to pay for the gene testing I would but I am going to make an appointment next week and take it from there. I will go armed with info like you and hope to get somewhere.
I wish you luck on your results and wait to hear to the outcome.
Xxx

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Pancreatic cancer hereditary ?

Postby marie souter » Wed Sep 04, 2013 6:17 pm

I wish you all the luck in the world Misti xxx fingers crossed for you