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I have a few queries so apologise! But grateful for a little guidance on some or all:
1) my father and I both have the BRCA 1 gene. I had BC, Grade 3, stage 1, at age 36, (and have since had prophylactic mastectomies and hysterectomy) and my father (72yrs) has just had a total pancreatectomy/ splenotomy etc, with IPMN tumours found to be aggressively malignant and Gastric Cancerous cells with low dysplasia.
his surgery team has suggested that my father’s tumour is almost definitely related to his mutation and as a result I too will probably need screening.
in your experience is this the case or should I not be too bothered unless I have symptoms?
2) is it possible to have more than one mutation/ could the pancreatic cancer be related to a mutation other than BRCA 1. My father’s sister and my siblings did not inherit BRCA 1 but would they potentially be at risk of the pancreatic cancer? Eg my aunt has had digestive issues for many years but is of the mindset that if it hasn’t proved fatal yet she does not want to be hassled! But obviously her family is v worried.
3)I was lucky enough to have had my BC treatment at the Royal Marsden in Sutton. However, they (Chelsea & Sutton) were not very proactive (indeed the surgeon Mr Mudan refused to do surgery) about my father’s issues and I have heard that tho a specialist cancer centre, pancreatic cancer is not a particular forte for them.
He was finally taken on, successfully by a superlative surgeon (Prof Kito Fusai) at Royal Free but it seems as if we are going to be transferred now to UCLH - would they both be centres of excellence in Maxmillans experience or is it better that we insist all follow up care is done at the hospital where the cancer was discovered?
apologies again for length but I hope you may be able to guide me a little...
thank you so much
aarti [edited by admin]
Thank you for getting in touch and welcome to our Online Community.
I’m sorry to hear that both you and your dad have had to cope with a cancer diagnosis.
NICE who provide treatment guidelines in NHS England recommend that monitoring should be offered to people with faults in the BRCA1 gene (as well as other mutations) and one or more first degree relatives with pancreatic cancer.
A first degree relative is usually considered to be a parent, child or sibling.
As you can see from these guidelines there are other mutations that can be related to an increased risk of pancreatic cancer.
We would suggest that anyone with a family history of pancreatic cancer should discuss this with their GP. This is also the advice given by Pancreatic Cancer UK.
It’s understandable to think about the hospital where your dad will have his follow up care. As a daughter you want the best for your dad and knowing that he is under the care of experts can provide some reassurance.
As a cancer support charity, we are unable to comment on specific hospitals but this information from UCLH does suggest that it offers a specific specialist service for people with liver, pancreatic and biliary disorders including cancer. UCLH is also a research centre for pancreatic cancer.
I do hope that you and your dad have good support around you and that you and your family know that there are lots of ways that Macmillan Cancer Support may be able to help.
We have a Macmillan Support and Information Service based at UCLH that your dad and all the family are welcome to visit.
Our national support line has several specialised teams who can help with any practical, financial, clinical or employment queries.
Please don’t hesitate to get back in touch if you have further questions and you are welcome to give us a call to talk things through in more detail. We can also discuss other ways that Macmillan might be able to help your family right mow.
Best wishes and take care,
Cancer Information Nurse Specialist
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