This BRCA forum is a REALLY good idea.
I do not have a BRCA1 or BRCA2 mutation, but I wanted to say that I think this new forum is a very good idea.
Many of us were thought to be at moderate to high risk for a genetic predisposition to BC, so we had BRCA testing done. There are lots of threads and posts in the "High Risk" forum about BRCA -- what it signifies, what the testing involves, who should be tested, what the results mean, and what can be done to reduce the risk of BC and ovarian cancer if someone has a positive test result. I also know several women who have tested positive for BRCA1 or BRCA2, and I think they would appreciate being able to talk directly with others in a similar situation.
So, although I've sometimes complained about the proliferation (and fragmentation) of new forums on the BCO boards, this is one that I think is much-needed.
Hugs...
otter
Comments
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I agree it's a good idea. There is also an entire website dedicated to this called FORCE ... facing our risk of cancer empowered....lots of great support and information there. Many large cities now also have BRCA support groups as well.
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Thank you for starting this forum. I am BRCA-2 + and having pbmx in May, with DIEP reconstruction. I have 7 relatives who have had breast cancer. I had ovarian cancer, dx June 2009. Surgery and chemo behind me, the mx is my next, and hopefully last, step in this process. Anyone else out there doing prophylactic mx?
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Regina, I guess you mean doing a pro mx by taking off both breasts with no cancer. I had my left breast removed with no cancer along with the right breast which did have IDC. Had 4 rounds of chemo, TE's, oopheretomy, exchange surgery and one last surgery coming up. I had BRAC done after chemo was over. BRAC 2 +. My mom died of BC and her mother had BC. My niece, 34 years old, just was dx with BC and had a bmx. She will need 30 rad treatments.
My sister and her daughters have not done BRAC. They have nothing to compare what we have been through to. I have had to think about why I did not do BRAC testing before dx and I couldn't wrap my head around what I would do if it were positive. I am glad it is available now.
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Great idea! I am still waiting for my results, but now know where to come for answers to any questions I might have when I get the results! Thanks Otter.
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I am finishing my chemo this week and can move forward with my life. I am BRCA1+ and was diagnosed at age 47. I did not consider myself a risk for BC, however, in talking with my family I realized that there were probably several "hidden" cancers in my family in the late 50s when women didn't talk about personal stuff like this. My sister who just turned 40 also tested positive and is dealing with the surveillance world.
I think this forum is great. I have gone to the FORCE site but it is not nearly as interactive as this site.
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I am waiting my results of my BRCA testing. I was diagnosed 12/23/09. Had a DMX on1/25/10 ans started my chemo 2/25. I am waiting for my final round of T/C next week. My onco test came out 25... and my mother had ovarian cancer.....She did not die of ovarian but lung cancer 91/2 years later.... I have a daughter who will be 21 on July and 2 sons ages 23 and 17. I hope everyone is well and having the strength to deal with this. Today I learned of to other forums on this site. Exchange city and sizing 101..... I will be looking into the FORCE....
Hug,
Donna
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I was recently diagnosed with BC. I'm 28, and no one in my family has had cancer before. My breast surgeon wants me to have genetic testing before we decide on surgery options. I do not feel comfortable waiting for the test result, and I feel that it's a low chance that I have the gene. What do you recommend?
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RS711, Sorry to hear of your BC at such a young age. Heavy stuff and I hope you have lots of support. I really believe your surgeon has your best interest in mind with genetic testing, but insist on genetic counseling too! You can always do BCT [breast conservation therapy or lumpectomy] now and make other decisions at a later date. With a BC diagnosis, Myriad Labs will often expediate results for this reason so women can be fully informed. Ask your surgeon about doing this for you beforehand. Being only 28, your young age can definitely be a red flag for BRCA hereditary pre-disposition despite little or no family history as well has having a High Grade tumor. This way you will have all the information you need to make the best decision for you by knowing your true risks. Best wishes.
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I have the BRCA1 gene. I agree. This forum is a great idea. The FORCE website is helpful, but it is not as interactive and easy to navigate.
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yes, great idea, and yes, you can have the lab do your test sooner rather than later. I needed that when I needed a hysterectomy in March and wanted to know about the ovaries because I may have left them alone if I was not BRCA 1.
I now wish that I didn't do infertility treatments....or birth control but I didn't know I was positive at the time.
I agree that this site has more active participants.
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To test or not to test: In the late 1990's, I met with a genetic counselor but decided not to test because I was so young (mid thirties) and was told a positive result could have future implications with insurance, and possibly employment. I learned last year that a new act was signed into law to protect us from such circumstances (link below). Had there been this protection all along, I would have known my status a full decade before developing cancer and without a doubt, would have chosen prophylactic, bilateral mastectomy,and oophorectomy (and therefore would have never had cancer, chemo, etc.). By the way, only one person voted against this law and I have to wonder why he or she would do that. I will now watch more closely how our elected leaders and representatives handle such matters.
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Surgery is no gurantee that you won't deveop cancer. It reduces your risk hugely, but doesn't remove it completely. I had prophylactic mastectomy, plus hysterectomy...and am now stage 1V-ie terminally ill.
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ElaineD - I am so sorry to hear of your diagnosis. It sounds like you took all the right precautions and I am sure you went through many tough times with each recovery. Did you also have your ovaries removed? Or, is yours breast cancer? Just trying to understand what type of cancer you developed. I do hope you continue to remain hopeful as there are so many new developments in medicine.
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Hey all - finally got my results and I am negative on both BRCA 1 & 2. However, the geneticist wants me to see a gynecologist about an ooph (2nd cousin had ovarian cancer at 40) anyway. I am considered "peri menopausal" and am wondering what se's I might expect from being put into instant menopause?
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ElaineD
Sorry to hear about your dx. Did you do the Prophilactic mast before developed cancer in that same breast or the stage IV was from the breast that did not do the prophilactic surgery?
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I understood that prophylactic surgery reduces risk of bc by 90% (not 100%).
However, doing mx following dx does not reduce risk of mets.
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I had two primary BC two years apart 10 and 12 years ago, BRCA1+, bilateral mastectomy, bilateral salpingo oophorectomy, TRAM flap reconstruction. I am having a difficult time trying to pin down what the standard of care is for long-term survivors. The best suggestion I have heard is yearly MRI for ten years and then what? I am now 10 years out. Now what? What do your oncologists or genetic counselors suggest?
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hi Joy1
Was your two times new primary ER negative? What were the stages? What kind of treatment did you take? thanks.
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I was diagnosed with BC at 60 and just finished my last radiation treatment, which followed lumpectomy and chemotherapy. It was estrogen positive. The oncologist said she didn't think she would recommend my being tested for brca because she didn't think I fit the profile. But my daughter and niece would like me to be tested so they would know if they might need to have earlier surveillance for BC. My sister was diagnosed with ductal carcinoma in situ--inside the ducts--and was estrogen positive--at 40. My mother was then diagnosed at 86 with calcifications and given a mastectomy. Hers was estrogen positive, too. I probably might ask for the brca test in a while, but I wondered if people diagnosed at so many different ages would be suggestive of sharing one of the brca genes, or would there need to be more similarities in their cases?
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I'm curious about how you all did the BRCA test. My doctor did a saliva test for brca. I can't find any info on this, it seems it's a blood test. Anyone have the BRCA test done with saliva or have info on this?
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Rockstar: I had my BRCA test done via saliva. It's newer. Here is a website for more info: www.myriadtests.com
Tulips: I thought if you had 2 close relatives w/breast &/or ovarian Ca you were eligible for ins to cover the BRCA test. In my family my grandmother died of BC in her 50s. 2 other BRCA(+) relatives had early stage ovarian Ca, one aunt has bladder Ca (that might not be BRCA related), and then there's me dxed w/BC in my 40s.
Karmil
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Could be insurance will pay for some or all. We will have to check that out.
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My HMO, Kaiser Permanente, takes an extensive family medical history and requires you to take an on line class as well as speak to a genetic counselor before determining if you are eligible for BRCA testing. They still use the blood test, though Myriad Genetics in Utah, is the company that holds the patent on blood and saliva testing. Many factors, such as type of cancer, age at dx and ethnicity go into determining if one is eligible for testing. Don't know if different insurers have different parameters. Hope to have my results back in 2-3 weeks. Caryn
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I'm all for communicating that this test is even out there...I never knew about it until my OBGYN told me about 2 - 3 years ago. Having it done proactively saved me alot of pain and suffering (in my opinion). Although I did end up having a bilatial masectomy, I would sure like to help educate women out there before a BC or Ovarian diagosis.
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Hi Rockstar and everyone...In April, 2012, I had the saliva test/swish test, sent to Myriad, and was diagnosed with BRCA2+. My paternal grandmother is the earliest family member to have breast cancer in her late 40's or early 50's. My father died of lung cancer and his sister of esophageal cancer. My sister was tested via blood test by Myriad labs, too, but fortunately, she was negative. My daughter (30) and son (34) will be getting tested, and, if positive for BRCA2 will follow with genetic counseling, and hopefully plan around having a family if necessary. So far, I have had a bilateral mastectomy with expanders and just started my first of 4 rounds of t/c chemo yesterday. So far, so good...surgery recuperation was a bit achy at times, but manageable...just needed to listen to my body and slow down and rest and take Tylenol prn. I did return to work and took it slow as needed. Today had my first neulasta injection...waiting to see if any side effects present themselves...otherwise took a 4 hr nap today and generally following recommendations as to meds to prevent nausea.
thanks for sharing.
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