Genetic screening for me and Mum - all a bit scary!

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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JudyB
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Re: Genetic screening for me and Mum - all a bit scary!

Postby JudyB » Mon Nov 16, 2015 10:27 am

Hi Aurin. I was under the impression that they would test the person with the breast cancer first and then go from there. Has your grandmother been tested? I think you will find that your mother would like you tested for the same reason that you want her to be tested. As Ruth said relying on mammograms means that once they show a problem then you have breast cancer whereas if you know you have the gene you then have the choice of doing something to lessen your chances of ever getting it. It would be a difficult choice but at least you would have it.

Go and see the counsellor, do your research and have all these questions ready for them and then make your decisions. Hopefully there will be no decisions to be made because you won't have the gene :)
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Genetic screening for me and Mum - all a bit scary!

Postby ruth1 » Mon Nov 16, 2015 8:16 am

Aurin, my Mother died of breast cancer at 52 - I was about 26 then. I had cervical cancer at 24. These factors were significant when it came to genetic testing - the process and discussion I had with the genetic counsellor focused on the age when my mother's cancer appeared - being under 50 - she was dx at about 45. They weren't that concerned at family history of relatives dx over that age although the history of cancer in the family was significant in the overall.

The actual screening test is a blood test so no problem there and my results came back earlier than the 2 mnths. The result will indicate what advice is given by the cancer centre - if the gene is found then you will be referred for regular screening and suggested preventative measures. That can be surgical and may entail preventative mastectomy and or oophorectomy.

This is all scary to get your head around but being aware and informed and even facing a positive result is better than getting this disease. Having the chance to take preventative measures is something I wish I had done years ago now. I have a young daughter to worry about now too. Unfortunately it is what it is but at least we have choices these days. If you rely on mammograms and get a positive result through that testing you then have the disease. By doing the genetic testing there is room for prevention. Having said that though - the genetic counsellor pointed out to me that causation of breast cancer is not just genetically based and the percentages of brca1 and brca2 cancers are quite low in the overall.

I think you would be wise to attend the genetic counselling and see if your history comes within the guidelines for testing. Even if you don't get the test under the public system its probably a very good idea to get your mum do it anyway even though it is expensive. The counselling is a very informative and will certainly assist you in making decisions which are so important.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Genetic screening for me and Mum - all a bit scary!

Postby ruth1 » Sun Nov 15, 2015 10:46 pm

Hi Aurin, Ive been through all of this and I will answer you properly in the morning. I am recovering from surgery and need to sleep. I wake early so will get my coffee and let you know my experience.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Genetic screening for me and Mum - all a bit scary!

Postby Janette » Sun Nov 15, 2015 10:31 pm

Hi Aurin,
Welcome to the forum. I've linked below to a search for the term "Genetic Testing". There are quite a few posts on the subject. I understand that this would be distressing for you both, but knowledge is power. I hope someone with experience of the testing procedure and their feelings posts soon. :hugs:

search.php?keywords=genetic+testing&terms=all&author=&sc=1&sf=all&sk=t&sd=d&sr=posts&st=0&ch=300&t=0&submit=Search
Janette


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Genetic screening for me and Mum - all a bit scary!

Postby Aurin » Sun Nov 15, 2015 8:59 pm

Hi all,

My love and hugs for all you lovely ladies going through breast cancer and any other cancers.

Mum is 53 and I am about to turn 31. In the last week, at the age of 75, my Nana (grandma) on Mum's side was diagnosed with stage 3 breast cancer on both sides. She has never had any cancer before. She has had mammograms every year and it went from a normal mammogram last year straight to stage 3. She is having a double mastectomy in the next two weeks and has been given a good prognosis.

Her oncologist told her that me and Mum should look at getting the genetic screening for breast cancer. This was partly because of the leap from normal mammogram to stage 3, but also because:

Mum's side:
- Nana's mum died of breast cancer at 67
- Nana's sister also had breast cancer at 71
- Pop - grandpa - died of stomach cancer at 65

Mum has also told me that on my Dad's side:
- Nana's mum has had breast cancer (age unknown)
- two of Nana's sisters have had breast cancer (ages unknown)
- his cousin died from breast cancer ten years ago in her 40s

My Nana on Dad's side, Mum, neither of my two aunts, and none of my three female cousins have had breast cancer. I haven't had cancers and most of us are generally healthy people (most of us being a healthy weight, all but one aunt non-smokers). Mum has mammograms twice a year and my GP checks my breasts every two years when I have my Pap Smear. I don't have children and will not be having them. As far as we know, no one has had the genetic screening for breast cancer.

As Nana and all other extended family are in New Zealand, Mum and I shuffled off to our GP on Friday. He is very concerned for both of us and we are now waiting for an appointment at the familial cancer centre at Monash Medical Centre as public outpatients (they've said it's about a two month wait and we don't want to go private as Mum needs to go to NZ to care for Nana anyway). Neither of us are actually keen on the genetic testing, but the GP said that even if we choose not to have the screening (though the GP strongly recommends we do), we must at least go speak to the genetics specialist. The GP has said Mum will probably need annual mammograms now and I will probably need a baseline mammogram at the very least.

We are a little anxious so have some questions. It would be lovely to have my mind at a little bit of an ease :)

1) What happens at the appointment? MMC have said they'll send us some forms to complete and send back first, I'm guessing these are family histories?

2) I understand that some people can have the genetic test done in the public healthcare system (rather than pay for it, as we hear it's pricy) if they meet certain criteria? Would I meet the criteria as I don't have parents/siblings/aunts/uncles/cousins with cancer?

3) Has anyone been offered the genetic test but decided not to get it? This is where I'm currently thinking... I'd like Mum to get it as I worry about her getting breast cancer but me not so much. I think I would rather mammograms for awhile and have the test if Mum got breast cancer, or hers came back positive.

4) What happens if it's positive? My GP referred to more blood tests and scans... what ones does he refer to and how often?

Any advice would be appreciated! It's just a bit scary!


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