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Genetic testing - preventative measures?

8 REPLIES 8
Guest user
Not applicable

Re: Genetic testing - preventative measures?

Hi Shenagh

Once you have the results of the BRCA tests back, your geneticist should be able to give you a more accurate forecast of your chances of developing an inherited cancer. I had BRCA testing recently, which came back negative, but she was able to predict statistically my chances of developing both ovarian and breast cancer over a life time just by looking at my family history and I was able to decide whether I felt surgery prophylactic (preventive) surgery would be beneficial. In my case, I felt that surgery wouldn't reduce my risk by a lot, so the disadvantages of surgery outweighed the risks of cancer. Once you have these facts, then the geneticist will discuss how prophylactic will reduce your risks, if at all. Then you can discuss this with the surgeon who should be guided by the results of the geneticist. I know the immediate thing you want to do is get everything chopped off that may be at risk of giving you cancer but you need to wait as it may not be necessary. Wishing you all the best and hope you enjoy the fair tonight.

Guest user
Not applicable

Re: Genetic testing - preventative measures?

Thanks very much for comments everyone. Worryingly, we have ovarian (mum), prostate (dad) lung (mum) pancreatic (gran) and query stomach (other gran who died at 43). The more I think about this, the more I think I won't feel really reassured until I have had surgery. My geneticist (who is from Yorkhill) has been very helpful so far, but I assume it would be my surgeon locally who I would discuss preventative surgery with?

Thanks again, it really helps to hear what other people have to say, and the link was very useful.

Anybody else, keen to hear from you too.

Just going to take the baby down to see the lights of the fair. It's his first time, so think he might quite like them : )

Shenagh x

belinda
Member

Re: Genetic testing - preventative measures?

Hi, here's the link to the page, http://www.ovarian.org.uk/ovariancancer/whatyoushouldknow.asp
and sorry it's near the bottom of the page under 'should I be concerned' not as my first message suggests, risk factors.
My Chemo Brain! Belinda..x

Helen
Member

Re: Genetic testing - preventative measures?

Thanks Belinda, thats very interesting. I've also quite a few relatives who have died from stomach cancer. When I discussed lung cancer with my geneticist she dismissed it as insignificant...

Best wishes xxx

belinda
Member

Re: Genetic testing - preventative measures?

Helen, Hi, I just found this, pasted below, on ovarian.org.uk ..amongst the risk facors.

have a family history (2 or more close relatives) of ovarian, breast, lung, stomach, womb lining (endometrium), lymphona or prostate cancer.

My Mum had lung involvement when she died but I had no idea actual lung cancer itself was a factor.
x

Helen
Member

Re: Genetic testing - preventative measures?

Hi Shenagh,

I was diagnosed with bc in 2004, I have a mutation of the BRCA 2 gene but only found this out early 2006. I had an oopherectomy in 2005 because my mum died of ovarian cancer at the age of 49. Given her and my diagnosis I didn't have to push too hard for an oopherectomy even though BRCA results hadn't come back. As Belinda has said some genetic clinics are more supportive and proactive than others but I think you need to ask for ovarian screening at the very least. I was interested to read that your mum died of lung cancer.. I've been researching my family history and discovered quite a few deaths from lung cancer, my grandmother being the last one. she had bc at the same age as me - 41 - but died from lung cancer 20 years later. Lung cancer isn't supposed to be linked to BRCA mutations but I'm beginning to wonder!
Hope this helps, let us know how you get on. Pm me if you want, I'm happy to help. xxx

belinda
Member

Re: Genetic testing - preventative measures?

Hi Shenagh..I've had genetic testing..since then my Mum was at first diagnosed and then died from ovarian cancer. I have ovarian cancer on both maternal and paternal sides, breast cancer on the paternal side and prostate (also connected to breast and ovarian cancer) on the maternal side of my family. I have neither BRCA 1 or 2 but because of my family history my sister has chosen to have an (NHS) oopherectomy and has earlier than the norm mammograms, one a year. My daughter will be offered yearly mammograms when she reaches 35 and ovarian cancer preventative measure whether screening or an operation will be offered to her when she reaches 40.
I and my family have had fantastic support from my genetic team but sadly I don't think, I may be wrong, that this support is universal throughout the UK.
I'm sorry you lost your Mum at such a young age. Please feel free to contact me via a PM for any info, where exactly my Genetic centre is etc. Love Belinda..x

Janet_BCC
Member

Re: Genetic testing - preventative measures?

Dear Shenagh,

While you are waiting for responses from the other forum users I thought a couple of our Breast Cancer Care publications may be helpful for you. They are "Ovarian Ablation" and "Breast Cancer in Families". You can download copies by clicking on the links below.

http://www.breastcancercare.org.uk/upload/pdf/bc_in_families__final_12_june_08_layout_1_0.pdf

http://www.breastcancercare.org.uk/upload/pdf/ovarian_ablation_june_2007_0.pdf

Kindest regards

Janet

BCC Facilitator

Guest user
Not applicable

Genetic testing - preventative measures?

Hi there

After some advice please. I am 38 and was DX on 28th May. Had lumpectomy and sample node removal (nodes all clear) and have just finished radiotherapy.

I saw a geneticist yesterday, and given my early diagnosis and family history, they are going to test me for BRCA1 and 2. My question is, even if the results come back as negative, do I have any rights to ask for an oopherectomy (spelling?) and/or double mastectomy? My mum had ovarian cancer at 38 (died from lung cancer) and I am so, so worried that it will get me too. I have a 13 month old baby who is my life, and I want to be around to see him grow up.

I would be so grateful to hear from anyone who has gone through a similar situation. Worried that doctors/surgeons would just think I am wasting their time in asking for possibly unneccesary surgery.

Many thanks,

Shenagh x