Hello fellow warriors,
I have started posting on the Prostate Cancer UK section of healthunlocked as my darling Dad has recently been diagnosed with aggressive PC. A poster suggested there could be a link between OC, PC and the BRCA gene and suggested I maybe get tested. My darling Mum also had primary metastatic liver cancer at age 64. Was just wondering what all you lovely people thought?
Wishing you all peace and good health 💋🙏🏻
Jemima xx
Hi Jemima So sorry about your Dad. Yes there is a link. As you probably know I have the BRAC2 gene. My older brother also has the gene and has Prostrate Cancer (as well as blood cancer now). The gene comes down the maternal side of our family and although not proven I believe my cousin may have had the gene, he died at 47 from aggressive PC (we also lost his mum, my mums sister) from cancer and also his sister.. My son has recently been tested and is also BRAC2 positive and this means that he will be tested from a young age for PC. My niece and nephew are currently being tested and my daughter is going to be soon. Hope you are doing well. Kathy xxx
Thank you for replying Kathy - gosh I'm sorry to read about the genetic situation within your own family. So it's likely it would be beneficial to be tested then...if for nothing else so my brother and twin sister, niece and nephew can be tested and perhaps regularly checked? If it turned out I had BRCA1 or 2 what would that potentially mean (for me or my immediate family?)
Where would I even begin to get this looked at? GP? Oncologist? Go private? Thank you again for posting appreciate you taking the time to respond.
Jemima x
Hi Jemima
I was referred for testing by my oncologist but subsequently my son, brother, niece and nephew have been referred through their GP on request. I have a letter from my genetics clinic where I was tested which gives them the information they need and I also signed a consent form so that my relatives drs can access my genetics details. It does take a while as you will probably be advised to have counselling first, although in my case I skipped that process as I already had a diagnosis of OC what more could they tell me that could make matters worse? I needed to know for my children, grandchildren etc. If you do turn out to have the BRAC gene it means that relatives can get tested and then (as in the case of my son) if they are found to be positive they will be checked/tested from a much earlier age. It also opens up different lines of chemo such as the Olaparib that I am on which I was only eligible for as I have the BRAC2 gene. I'm hoping my daughter will get tested but it's her decision and she says she will. If she tests positive it will mean she can have her ovaries removed or a full hysterectomy. Also I have the option for a double mastectomy with reconstructive surgery, a path I have chosen not to take, well I might have a 'dolly parton' when I'm 80 and need a lift! Kathy xx
Thanks for the clarity Kathy - I think I will bring this up with my Oncologist next time I see her. I guess if she doesn't feel its worthwhile (which she might?) i could try my GP? Alternatively I could have the testing done privately but i'm guessing that having gone through what i did last year and now with my Dad, why would they not let me do it? x
Hi Jemima If your mindset is that you want to be tested then I definitely think it's worth trying all avenues. When I was first diagnosed I was asked if I had any cancer in the family. I reeled off my maternal aunt dying of cancer, followed a year later (almost to the day) her son, followed a year later (almost to the day) her daughter, followed a year later (almost to the day) my dear mum and then another female cousin 6 weeks later . So given my family history and my diagnosis it was pretty clear something was going on (or we were just a really unlucky family!). My dear dad subsequently died of cancer 4 years ago but we have no way of telling if there are any genetics involved as he came from Belarus just after the war and lost all contact with his family. I do hope they allow you to be tested. Kathy xx
Oh gosh Kathy i'm so very sorry....what a lot your family have had to cope with 
I never considered our family having a history of anything, but of course, when I look at the details, my Grandfather died of brain cancer when he was 70, my Mum of liver cancer when she was 64, I have of course, had my own brush with OC last year (age 33) and my dear Dad now with his PC age 78 (and both him and my aunt have both had minor brushes with skin cancer) it does make me wonder if there could be a genetic link somewhere? Or, like you said...perhaps we are just unlucky. If no one 'allows' me to be tested and i still feel it would be useful, then i will just go private (assuming that is even an option?) xx
Hi Jemima We did seem to 'go through it' for a few years and fortunately things have quietened down at the moment! I believe it is possible to go private. I had another cousin (the one who lost her brother and sister) and she decided to go privately and fortunately tested negative . I wish you well. Kathy xx
I'm sorry to hear about your dad. In order to find out about BRAC, your dad needs to be tested first as he is the one with cancer. If he proves to be positive then that opens up testing for his children, brothers, sisters. Has any of your aunts or grandmother on his side of the family had breast or ovarian cancer and have any of his brothers, his father or his paternal uncles had prostrate? if this is the case then definitely encourage him to be tested. Its a simple blood test.
Good luck. Ann xx
Hi Kathy, this must be such a worry for you. At least they are now on the ball & getting to know even more about your family history. I will keep my fingers cross no more of your family have this dreadful gene!!! Take care love Cindyxx
Hi Kathy, so sorry to here your family history. It's hard enough to have to go through it yourself but to see others suffering as well must be hell. I hope the rest of your family don't have this dreadful gene that has done so much damage to your loved ones. Take care love Cindyxx
Jemima
My darling dad had Prostate cancer. He lived with it for 15 years - chemo and radiation: no Op as that was not widely done then nor the 'seeds' implant (sorry can't remember what thats called) - he did have lots of tablets which gave him hot flushes and sympathy with mum though!
He coped well and I understand that there have been some breakthrough developments however I do also know that no-one can really predict our path.
I had my genetic interview in Feb of this year and am still waiting to get my results.
I understand that Prostate cancer IS now thought to be linked to ovarian.
You and your family have a lot to cope with both mentally and physically- are you getting any help? To talk etc? Forgive me if you think that's not needed x
Thinking of you all
Clare xx
Thank you for your response Clare - especially as you are dealing with so much yourself. I'm sorry to hear your darling Dad also had PC, but wow that he lived so long with it. I have heard many things about it being one of the more 'treatable' ones and a cancer that men often die 'with' not 'of', but i'm guessing that also depends on whether its spread or not and for now, all we know is that it looks likely to already be in his bones. We are still awaiting his CT scan results for lymph node mets and a full look at his bone scan, which will be given to him on 7th June when he sees his Onc for the first time.
I'm just wondering what the benefits are of me having the genetic testing...and what the likely outcomes could mean for me and for my family if i were to be found as carrying the gene...? My twin sister and older brother (so far) seem happy and healthy and have never had any issues. Getting BRCA tested has never been something i'd considered until now when someone mentioned a link.
Re: speaking to someone...tbh Clare, having been through hell and back with what happened with Mum 4 years ago and then myself last year (albeit without much input from my family), I kinda feel like I can cope. I think i will encourage my Dad to seek some outside support though, just so he feels he can perhaps chat to someone other than his kids (although he knows we are all there for him)...but it might be something i'll pursue in time should things start to get a bit too much. I had big blub on my hubby over the weekend about it all after coming home from visiting Dad...it comes in waves like it always does.
Although nowhere near as bad as most ladies on here, I still don't feel like i am out the woods by any means and coupled with the start of yet another journey but this time with Dad does seem unbearable at times, but you of all people know, you just have to knuckle down and get on with it. I'm sure once we have a clearer idea of what's going on with Dad and what his intended treatment will be, things will seem eminently more manageable.
Thank you again for responding Clare - i read your update earlier and I am thinking of you often.
Jemima xx
Hi J, its worth noting that Mucinous OvCa is rarely associated with BRCA 1 or 2. The recent changes in protocols which allow women diagnosed with Ovarian Cancer to be genetically tested without reference to family incidence of associated cancers is for 'all non-mucinous types' in recognition to this. You may hear people say 'never' BRCA which is not the case- though it is as I said much rarer than with other sub-types. Much love Sxx
Thanks Hun...I did wonder about that. I'll have the convo with my Onc and see what she says. She may concur that the link is perhaps more tenuous xx
think its also true that genetic links are increasingly being understood and so takes a little time. KRAS is more likely to be a genetic issue associated with Mucinous tumours. Its a different thing though than the way BRCA manifests.. XX
Thanks for the info 👍🏻 X
Hi Sunfleury, thats worth noting thanks for the information take care Cindyxx
Hi there I was diagnosed with stage 3 ovarian last January ( 51) a week after my dad was diagnosed with prostrate cancer. My mum passed away over twenty years ago with breast cancer. I was tested for BRAC gene and revealed I was BRAC 2, my sister (49 then)immediately had a mammogram and they discovered breast cancer. She is also BRAC 2. Luckily the cancer albeit aggressive had not spread and she - following chemo has just had a double mastectomy she will have her ovaries out next month.
I've had chemo , radical surgery last year but unfortunately it came back however as I'm BRAC 2 and without other medical issues I qualified for an immunotherapy/ parp trial which I'm on for a year. My dad tested negative for the gene. ?
What I'm saying is it's def worth taking the test to inform relatives- I have two daughters who 17 and 21 who want to be tested although I'm trying to encourage them to delay for a while .
I wish you all the best at this difficult time x
Hi Montanaka, it so intresting reading other people's stories. Genes are such a mind field to explore. The fact your dad is negative only leaves you wondering why is he negative & did your poor mum the BRAC gene. So many questions but at least they are looking at your family genes.
Good luck on the trial lets hope for good results. Take care Cindyxx
Hi Jemima, when I went to the gene clinic I was told because of our cancer history my son had a risk of prostrate cancer. She went on to say my sister's risk was high to getting oc & bc because my mum, her sister & a first line cousin had oc not to mention the bc in our family.
So I am very interested in this subject & will keep an eye on your post to see what comes next. Hopefully you will get some answers to why you have so much cancer in your family. Please take care I hope your dad improves & can gets the help he needs. Love Cindyxx
Does anyone out there have a diagnosis of Primary Peritoneal Cancer. Or am I the only one? Would like to chat.
Gas Pains 
Sarah 1963
Fibroma or fibroid? Is there a difference?
