Im 28 and was diagnosed with grade 3, oestrogen positive, her2 positive breast cancer in Feb 2008. I’ve had a lumpectomy and have recently completed chemo & radio. Im now having herceptin and tamoxifen.
Despite my grandmother, and great grandmother (on moms side) having breast cancer, I have been advised that my cancer is not genetically linked as they were in their 70’s & 80’s when diagnosed. Neither had genetic tests, and both have now passed away.
I have been informed by a friend, (who is also my age, and diagnosed with breast cancer this year), that if she is found to have the BRCA genes, she will be offered routine yearly breast MRI’s, and ovary removal at 40 yrs of age.
I asked my breast care nurse about this and she advised me that I will not be offered geneitc testing, and that I will not be given regular MRI’s. She advised me that I will possibly only be entitled to yearly physical examinations. This really frightens me as the doctors couldnt detect my original cancer from a physical examination. It was only found because I was adamant that there was a lump, and they agreed to perform an USS.
Has anyone got more info about routine screening, or genetic testing, following bc diagnosis, in young women?
I think it again depends on where you live. I have had genetic testing (am still awaiting the results! _ fingers crossed hopefully no news yet is good news.)
My Mum had breast cancer at the same time as me, but because she was over seventy and I was under 40 (both of us incidentally out of the age range for mammograms! at the time of diagnosis) I was told that they wouldn’t test because they believed the two not to be related. However I happened to mention that my Dad had died young of pancreatic cancer, (as had his Mum, although later in life and my half sister (on my Dad’s side) had had breast cancer at the age of 32.) I was told that in our area there have to be 3 family members with breast cancer, cervical cancer or pancreatic cancer, so this then put me in the ‘criteria’ for testing.
I was told by the councellor that Manchester (where my blood sample will be sent for testing)insist on 3 family members and even then they can ‘reject’ patients and not test if they don’t think the link is strong enough., but I don’t know if this is true for everyone.
I was dx Jan 07. My dad died at 45 with pancreatic cancer 20 years ago and when my sister dx with bc 13 years ago aged 29 she was offered genetic testing after going through a family history with genetics team in Newcastle. They didn’t find anything but 8 years ago she was recalled as they thought there maybe some link. She found out last Sept 07 she had BRCA2 mutation, I found i was a carrier month after. So it may depend where you live to the criteria they follow.
Lynne
I was tested by genetics as I was 32 when diagnosed, my auntie (maternal) was diagnosed at 50, my great-aunt at 50 (maternal) and great-great-aunt too. On my dads side, my grandma was in her 40’s and her sister was also in her 40’s. I think I was put forward due the amount of people on either side. Although I came back negative (thankfully) they would have thought it was from my dad’s side if I had been positive. Have a look and the NICE guidelines on genetic testing, if they say different, get back in touch with your GP or tell your oncologist you want to be referred. Sometimes they do it for peace of mind too, I know my doctor (from genetics) said she is happy to test people (in some cases) due to they mental state of health. Fight - don;t give up hope.
I just wanted to say you will get yearly mamogramms as this is standard follow up for breast cancer- and always ask to be seen inbetween that if you are worried.
Since you have already been diagnosed, testing won’t likely change your treatment, it would mostly be helpful to determine if you have relatives at risk. In addition, a negative genetic test just means that you don’t have the markers that have been identified, it does not mean that there is not something genetic there that has not yet been discovered.
You may want to put away the genetic testing worries for a while. If you don’t wish to do that, insist on a second opinion. You can also volunteer for studies at specialist cancer centres that mean more frequent testing. (that is how mine got diagnosed in the first place.