Family PC

[elgirl]

Dear all,

I have been a silent reader of this website for more than 6 months. I don't know why I have decided to write now my experience although my loved ones with this disease have already left us. Yes, I say loved oneS because three members of my immediate family passed away from PC. First my grandfather which I have never met, he died before I was even borne. This did not particularly affect me as I have never met him.

However my life turned upside down in june 2016 when my uncle was diagnosed with stage 4 PC. My mothen insisted that my dad got checked himself "just in case". Although he had no apparent symptom, he reluctantly went to his doctor. In july 2016, my father (my uncle's younger brother) was also diagnosed with stage 4 PC. He never drank alcohol and did not smoke. He was never overweight and ate relatively healthy. Until this day I still don't know why he had to have this terrible cancer... So then started the process of chimios and other treatments, my cousins and I working together to help both my father and my uncle. I point out that both brothers tumours were at the tail of the pancreas. However they both reacted differently to the chimio. Both started with Folfirinox but it was not effective at all. They were both then switched to abraxane and Gemzar. Although my dad lost all his beautiful hair he led a more or less beautiful life. He could walk and drive and eat well. All mets were suddenly "shut down" and tumour size was reduced by more than half. We then decided to try the nanoknife. We do not live in the UK and this procedure does not exist in my country. We flew all the way to London and the doctor said my dad was a candidate for the nanoknife. The procedure was done in March 2017 and was apparently a success. However, in the meanwhile he had a chimio break of 2 months. During that time all mets came back with a vengeance (although no more main tumor existed). He then developped ascites and that was the beginning of the end. During the whole battle he was a fighter and being real positive about it all. When ascites kicked in, he spent 6 terrible weeks and passed away this May, after 9.5 months of battle.

My uncle also fought hard but also passed away last year on Christmas eve.

In less than a year I lost 2 close members of my family. We are all really close so this really has taken a toll on us.

We have made genetic tests during the course of their sickness but found nothing. Is this normal?? How is it that 3 male members of the same family passed away of the same disease and no apparent link has been found??

Not only am I scared for the future I still can't realise what has happened. I never had time to grieve for my uncle since I had to take care of my Dad with my mum and other siblings. Now that my Dad passed away as well I feel kind of numb.

I miss him more than words can describe. he was the best dad in the world so sweet and kind, always putting my mum and us kids first. He will never see me get married or have children.

Has anyone ever had/heard of family PC? Any expériences with nanoknife and ascites?

I apologise if my story seems disconnected or illogic I can't get in the details of it all. Also, English is not my mothertongue so I apologise in advance for any spelling/grammar mistakes.

Thanks,

El

[PCUK Nurse Jeni]

Hello El,

Thank you for your post on the forum.

I am very sorry indeed to hear your story concerning your family members who have had Pancreatic Cancer.

I will email you directly El.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[lcgmail]

Hello, I too have been a silent observer for a few weeks. My mum was recently diagnosed with PC in the head area. My maternal grandmother passed away 15 years ago from PC and I am told it was at an advanced stage. Both my sister and aunts are concerned that this could be a concern for us. Please can anyone offer any advice.Thank you.

[Elle]

I know this is an old post but here goes.

My dad and 3 of his brothers had PC. I’m scared of what the future holds for me and the rest of the family.

I’ve recently found out that my son in laws father died of the same as did his sister (aunt) and now a couple of his cousins have it.

There does seem to be a family link.

There is research looking into it and I’ve put my name down and my cousins are also going to join. Google EUROPAC, they are based in Liverpool but there are other regional places if it gets to the point of having to go for investigative procedures.

Hope that helps x

[PCUK Nurse Rachel R]

Hi there Elle

Thanks for posting.

I am sorry that you are feeling anxious at the moment especially in regard to your family history of pancreatic cancer.

As you may be aware, sometimes cancers are said to 'run in the family'. This means there is a faulty gene in the family that is linked to a type of cancer, and can be passed down from a parent to a child. People in a family who carry the faulty gene have an increased risk of developing that particular type of cancer, but it doesn't mean they will always develop it.

Approximately 5-10% of pancreatic cancers are known as familial pancreatic cancer, so the majority of pancreatic cancers don't run in families.

I am glad that you have been in contact with EUROPAC.

If you do wish to chat or email please don't hesitate to contact us via the contact details below.

Best wishes

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Elle]

Thanks Rachel

I have various feelings about my potential to have inherited PC, depends on the day really, but I will join in the research which starts with blood tests and see how it goes.

I have some older cousins, I’m watching them like canaries in the coal mine...

Elle x