Posted January 13, 2009 By United We Cure
It should be interesting to note that both my mother and late sister have had breast cancer but with no BRCA1 or BRCA2 mutation/link.
My mother, now aged 68, was diagnosed and treated in 1993 at the age of 53 with stage 1 ductal insitu breast cancer. My sister died in 2002 at the age of 41 from complications of chemotherapy. She had stage 2-3 differentially infiltrating ductal carcinoma with no Estrogen/Progesterone Receptors.
Neither my mother nor my sister posess/ed the mutations. At the time, 2000-2001, researchers stated that that is not to say they don't have genes: BRCA 3, 4, 5, etc. but these are not yet tested for from what I gather from the research 'out there.'
My other sister (48) and I (42) have been advised to categorize ourselves as having a hereditary risk even though no genetic mutations have been detected in our familial line.
My current course of diagnostic prevention/screening is to practice breast self exam (minimum-monthly) as well as to get a mammogram every year through my family Dr., along with pap and routine bloodwork. Additionally, I have regular visits to my Naturopathic Doctor (ND) whom I love and trust--where we coordinate herbal, mineral, etc. and everyday food choices into my lifestyle that optimize my health. I also tried the Breast Thermography last year. My Family Doctor (FD) is open to this and other unconventional methods of screening. I love her for this!
This is key...find both a FD and a ND that you trust implicitly with your health-care choices-one with you can discuss things openly and honestly and not feel rushed, turned down or meant to feel crazy! I think this is the most important factor in my health care choices. I hope this piece of advice helps you.
Posted January 26, 2009 By dkschulte
I just attended an information day in Wpg. for families living with the risk of BRCA1/BRCA2 and the advice for screening for those with a high risk was to alternate MRI with mammogram. Instead of getting them done at the same time they were scheduled six months apart. The MRI's were more detailed and sometimes found cancers early, but occasionally picked up false positive results. One woman did not get her results for the MRI and when she went for the mammogram they saw something...and followed up with a biopsy when it had always been there on the MRI. So if you are getting screened regularly, make sure someone is letting you know about the results.
Neither of the two women I know that are having these tests for screening stated that they had any issues with getting appointments for the MRI's. There was never any struggle or difficulty getting them done on time.
My cancer was found in 2006 at an apt. with my GP. I was going to get the paperwork for a screening mammogram when he found a lump. Had I not been keenly aware for screening (as my sister was already a BRCA2 carrier but not tested myself), the cancer may not have been found so soon.
If you know you have a strong family history, talk to your health care provider about what the best screening is for you, and what you are comfortable doing as far as long term follow up and risks involved.
Posted January 27, 2009 By Carolyn
I had regular yearly mammograms/physicals. Last April after my scheduled yearly mammogram I was told to return in 6 mos, which I did, and then again they asked me back in 6 mos. At that point I asked for a biopsy which found high grade invasive ductal carcinoma. I had a double mastectomy a week ago and will meet with my Oncologist this week. I am having a hard time thinking that with my history I should have been biopsied 6 months ago. I cannot stress your diligence enough. Sometimes it is not just BRCA1/BRCA2 that calls the shots but your Her2 and hormone status that drives the cancer. Being proactive pays off.
Posted June 15, 2009 By vern
Hi, I have lost a sister to breast cancer, one more have a mastectomy, Me 19yrs of fighting B/C
found out that I'm positive for BRCA2 mutation
I'm a black girl from Jamaica, A Canadian citizen living in Canada 19yrs now. 1 of My daughter tested pos for BRCA2 also 1 sister ,my other daughter did'nt get tested as yet and the other sisters are scared to get tested.
Posted October 26, 2010 By SharonE
I'm not sure I'm able to read all the original post but based on what I have read here are my comments.
I have also had two family members with BC, my mother and my sister with no BRCA gene mutations. My mother survived BC at age 34 and my sister passed away in January of this year from BC.
The genetic counsellor recommended screening for me (46) which included clinical breast exams every 6 mos and an MRI in addition to what I had already been doing. The MRI saved my life because in August I had a negative mammogram but the MRI found a tumour. I'm currently going through treatment right now.
Also, the genetic counsellor recommended new genetic testing because the testing is much more accurate now than it was when my mother was tested quite a few years ago. There has even been improvements since February 2010 and they recommend more testing for me.
The genetic counsellor I spoke to doesn't feel that they will find a BRCA 3 or 4. So, that the issue could be another enviromental/lifestyle factor that is affecting my family's genes. Wow...that is something they will probably never be able devise a scientific study for!
I now have to make some decisions about a prophylactic procedure....any advice?
Sharon
Posted January 27, 2011 By jeni1972
Hi there
One problem with the genetic testing is that you can be BRAC1/2 negative and still have the genetic predisposition.
They have the ability to test for the 2 gene mutations however another 6 have been identified....there is just no funding in Canada to develop the testing for those 6 genes.
We have breast cancer in our family as well......the gene info is what I received from the genetics doctor.
