Anyone with ILC who is BRCA+?
Comments
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How many of you with ILC were positive for one of the BRCA mutations? I may also see if there's a BRCA forum somewhere to ask the reverse. I am feeling this weird resistance to taking the BRCA test - probably should have done it last year when my insurance deductible was more than met and I didn't have time to think about it. On paper, I absolutely don't have anything that would suggest I would be positive for BRCA - I don't have the right family ethnic or cancer history. I think perhaps there's some OTHER, as yet unidentified genetic link (there's a good amount of colon cancer in my mom's family, all of whom got it over about 75 years of age). I have also heard that ILC is not generally the cancer you are likely to get with the BRCA mutation. As with much info on ILC, this doesn't seem to actually be documented anywhere...
Logically, I know that even with a miniscule chance of testing positive, it may be worth it so I know whether to put my ovaries on notice. But it just seems like an expensive waste of time and torture of a good vein...
I'd love to hear from women with ILC who have had BRCA testing - what were your results?
Coleen
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Hi Coleen, I had the test done and was negative.
My mom had ovarian cancer, so by the stats I had 16% risk of being positive. I had the test with no hesitation whatsoever. I was trying to decide between lumpectomy and mx, and wanted that additional info. I would have any and every test like this that's available that can help predict what your individual risks are - what does me in is the not knowing. I would rather know something and then deal with the result than always wonder. Good luck with your decision!
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Everyone was so sure I would had the mutated gene because I had "all the signs." 1) cancer in mother's family, 2) first cancer [DCIS in 01] was premenopausal 3) second cancer [ILC in 08] was completely different from the first...and so on. When the test came back negative, they were all shocked and wanted me to be re-tested to see if I was in the 4% that had some other mutated gene. At that point, I said what does it matter and passed on the second test. Didn't think it was a good use of my insurance's money because both breasts were removed anyway..
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I was another one of those who looked BRCA+ on paper--young age, mother with bc, father with pancreatic cancer, Ashkenazi Jew (pancreatic cancer in that population is often BRCA2+), etc, etc. So everyone was shocked when the test came back negative, especially the surgeon, who'd already been plotting out the oophrectomy she was going to do when she did my lumpectomy.
There is a CDH1 mutation associated with ILC, which is the gene that causes familial gastric cancers.
I googled ILC/BRCA quickly, and came across an article that was talking about the best screening technique for BRCA+ women. In the BRCA group they studied, they found 23 IDC tumors and 2 ILC tumors, so obviously BRCA women can go on to get ILC. But BRCA tumors are often triple negative, and ILC is rarely triple negative, so that along with the fact that there aren't that many ILC cases to begin with would mean that there aren't that many ILC BRCA+ women.
Has your onc suggested you see a genetic counselor about the BRCA testing? That would be the first step in deciding what to do.
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Will get my results on Tuesday. Thinking all is in my favor to be neg, but it's hard to trust the stats since I was told that 85% of biopsies are negative!
MM
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Nothing like a cancer diagnosis with virtually non-existent risk factors to really kill any feelings of being "lucky" one may have had... good luck to you, mymountain.
I'd had an appointment with someone at UT Southwestern who was a genetic counselor last year to discuss this and likely test me, and then I canceled the appt. when I was pushed into scheduling a bilat w/ recon. And then when I canceled THAT a few days later in favor of a lumpectomy, by the time things played out, it was too close to the end of the year and into a new calendar year for my deductible...
In the meantime, my oncologist at my follow-up in March pointed out that her physician's assistant has been trained to administer the BRCA testing, so why not just have her do it when I come in for the next follow-up? That appointment is next week. I'm thinking she's not a true genetic counselor, and probably that's who I should be chatting with. The one I spoke with last year (when we determined we couldn't schedule me in before the end of '08) pointed out that while she thought it was likely I wouldn't test positive, the reason to find out was because of the lack of good methods to screen for ovarian cancer... But she also said that there would be in the next few years several more tests to track other genetic markers that they're finding could lead to breast cancer...
So, what I go back and forth on is whether to wait a year or two to see whether they increase the number of things they're testing for, possibly to include something I might be at risk for, or whether I go ahead with the physician's assistant's minimal discussion and see if my insurance will pick it up...
Throughout this whole process, the only thing I've had this weird "visceral" reaction to other than this goofy test was the scheduling of the bilateral mastectomy. Everything else seemed logical and even if not fun, was the thing to do and I did it. The only thing I can put my finger on here is that for some reason, I feel convinced that it's a waste of time. I know that sounds bizarre, but there it is...
So far we have two "I thought I was and I wasn'ts." I think I'm looking for any "I thought I wasn't, but I was..."
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I am BRCA2+. My first dx was IDC triple negative. My second dx was ILC ES+/PR+
My mother and several of her cousins all had BC. The trend continues to the next generation in my family. My first cousins also have BC and are also BRCA2+
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hi have not posted in quite a while....
I am brca 2 with a diagnosis of pleomorphic ILC.... BRCA 1 is the brca that tends to be er negative with a high incidence of triple negative... I have found a study that linked BRCA2 to pleomorphic ILC... I dont have the link handy. I had my original surgery in Oct 2008 after diagnosis and before my BRCA results came in because my doctor was so certain I was negative ..l had a single masectomy. After testing positive for BRCA I was advised to get a masectomy on the other side and remove my ovaries. I am still struggling with the decision to go forward... My oncologist view is that because I am on femara that reduces my risk for a new primary and that the best step is remove the ovaries because of the dificulty in diagnosing ovarian cancer.
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I was tested for BRCA 1 and 2 and found to be negative. I had a TAH/BSO after consulting with a gyn onc. It was my call; I felt better getting it.
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Coleen, I was diagnosed with ILC and wondered whether I should do the genetic testing. The only breast cancer in my family is my paternal grandma. I was concerned for my 18 yr old daughter as well as whether I might have issues with ovarian or uterine cancer later. The genetic counselor at the cancer center went through my family history and he recommended that I do the test, which my insurance covered. Fortunately, I tested negative for the BRCA mutations, and that peace of mind for me and my daughter was priceless. I've been poked and prodded so much these last few months (doing several clinical trials), and I wasn't sure about doing this, but now I'm glad I know.
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Has anyone tested negative for BRCA 1 and 2 but was found positive on the BART Analysis? I get my BART results this Tuesday. Was told the BART test can pick up an additional 10-15% of patients who don't show up as BRCA positive on the standard test but do on the BART.
I have over 15 relatives on my fathers side with cancer, including breast, ovarian, pancreatic, prostate, renal and lung. My 47 year old cousin was just diagnosed with Triple Negative IDC a month ago and she plans on getting BRCA tested also. My genetic counselor has told me if my BART analysis is also negative we may pursue the P53 and CK2 testing next.
Just curious if anyone else has done the BART testing.
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Hi LindaLou53,
Can you tell me what the BART test is? Is it part of the routine genetic testing for the BRCA?
I get my results on Tuesday also! Good luck to you!
MM
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Hi mymountain,
BART stands for BRAC Analysis Rearrangement Test and is provided by Myriad Labs who also do the BRCA1 and BRCA2 testing. If a patient tests negative for the standard BRCA1 and BRCA2 but has a "strong" family history of cancer and particularly cancer in family members younger than 50 years of age they may be eligible for the BART testing.
Here is a link to an article about genetic testing that explains it better than I can.
http://www.facingourrisk.org/newsletter/2006fall/brca_testing.html
Good luck with your results on Tuesday!
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Mine were Negative! Yeah!!! I forgot all about the BART when I was there (I was so nervous) and it was not mentioned. I'm just going to put my head back in the sand and enjoy it!
Linda Lou? I'm thinking of you and hoping you get the same.
MM
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LindaLou, Thank you for the link. I read it today and it said that beginning in August 2006 they began doing the BART testing. I pulled my report from Myriad to see what it said. Can you believe I was tested in August of 2006? Well it does say that they did a 5-site rearrangement panel in addition to BRCA 1 & 2. There was no mutation detected there either. YEA! I guess this is the BART you mentioned. Again, thanks! G
mymountain, Believe me, I know the feeling! Congratulations on your test results. Enjoy! G.
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Ok, I guess i had it afterall. My test performed was
BRCA1sequencing, 5 site rearrangement panel, BRCA 2 sequencing
BRCA1 full gene rearrangement
BRCA 2 full gene rearrangement
Is this the BART?
MM
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I'd be interested if that's the BART, too. I assume it is--I had the same 5 site rearrangement panel, and my testing was done June 2007.
Congrats on the negative results, MM--good news!
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Thank you Nash and Gitane! A great relief for me and even more for my daughter!
How do you put your dx stats in?
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mymountain, to put your dx stats in, go to MY HOME at the top of the page. Go to "Edit My Profile", then go to the bottom of the screen where it says "Signature" and input the data there.
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Okay, so I had my follow-up appointment yesterday, and the PA was allegedly prepared to do my genetic testing for BRCA. I was still ambivalent as to whether to get it done now or whether to wait until they have more things they can test for. Also, I was thinking it might be better to go to UT Southwestern to see a full-time genetic counselor, rather than the oncologist's PA who does it on the side as a "convenience" for the patients.
As it turned out, we didn't have time for the BRCA testing - I live about 25 minutes away from the complex where my onc is and where I had radiation, so I have the drive down to a science. Yesterday, a traffic light along a frontage road I need to take to get up there was out, so it took about 15 minutes just to get through an intersection that normally takes 2 minutes to breeze through. Perhaps I wasn't meant to have that testing yesterday... I'll chat with the UT Southwestern people and see what I can set up, and find out about BART as well. Many insurance companies are allegedly changing the age at which they'll cover the test. Last year, it was 45 and under at diagnosis, but several major companies are taking it down to 40, I've heard.
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Colleen, I think it was providential you got stuck in traffic and didn't have the blood pulled. I really think it's important to go over all the implications of a positive result with a genetic counselor before going forward.
The year before I was diagnosed with bc, my gyn ordered the BRCA testing for me b/c of my family history (I think back to that blood pull now, not knowing at the time I had a big ol' honkin' tumor in me. How ironic). Anyhow, the whole thing was very casually approached, no discussion of the impace of the results, etc. The insurance denied coverage, specifically b/c the test hadn't been ordered by a genetic counselor. The next year, once I'd been diagnosed, they did cover it of course. I still hadn't seen a genetic counselor at that point, but my surgeon talked to me about oophrectomies, bilat mast, etc.
I ended up talking to a genetic counselor after my testing came back negative, at the urging of one of my second opinion oncs, b/c he felt I was still at risk of some sort of unidentified mutation. The recommendation is that I be retested as new mutations are discovered.
Just my two cents, but I think you'd be better off in the hands of a genetic counselor with all this.
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Thank you for your two cents (more like a couple of gold coins, really!), Nash. I am in agreement with you - I will end up at UT Southwestern at some point... It's likely that the colon cancer in the older folks on my mom's side of the family will tie in with this somehow. We shall see...
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Kleenex,
My initial counselling session was about 1 1/2 hours and went into great detail about family history including a genetic chart and how everyone was connected in the family tree. My head was spinning from all the questions and information. Once I consented to the test I was accompanied to the lab by an intern and after the tech drew the blood, she gave it directly to the intern. Crazy thing is that although the ins co approved the testing (aside from my copay) I had to pay an $18 lab fee before they drew it. Go figure.
Lots of questions about family members who've had breast,ovarian,skin,colon,pancreatic or gastric cancers. But things like brain or blood cancers don't seem to be related.
I hope you get good direction from a certified genetics counselor.
MM
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Ladies, I am in awe of all of your knowledge. I am in a bit of a different situation when it comes to this topic, and I would love to hear what you all think. I am adopted, and have no family history, and essentially no family left to ask, (parents both gone, and no siblings). I have two daughters and wonder if I should be tested. Would they be willing to do genetic counseling considering that I have no history to discuss? In a way it really scares me because I just don't know what is in my background, and I don't even want to think about my daughters having this. I hope you will give me your ideas about this.
Thank you,
Susan
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Susan, My situation is not exactly like yours but there are some similarities. There is almost no family history to speak of due to the few female ancestors, orphans, and general lack of records. Among the male ancestors we were able to trace there is some cancer history on both sides of my family. It wasn't much according to the genetic counselor to really use for decision making. I just had to decide if I wanted to pay for the testing and get the results. I did it for my daughter primarily.
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Thank you for sharing with me Gitane. I have been thinking about this since I was diagnosed. I plan to talk to my oncologist about it the next time I see her. I would like to have the information for my daughters, and my son too. I don't know how it works with my insurance so I will find that out as well. I always do better with things when I find a way to be proactive.
Take care,
Susan
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I tested positive for the BRCA2 gene. It is important for you to know this info for the following reasons: the risk of ovarian cancer is much higher, colon cancer somewhat higher, breast cancer in both breast higher, and any of your family may want to be tested so they can be proactive in their health decisions, especially your own children.
All that is involved is taking some blood from you, no big deal for most of us.
It helped me make the decision to have a double masectomy instead of single, which was good because they found IDC in the other breast, and that was AFTER chemo! Something to think about.
Just thought I would note, the gene is fairly rare, my onc said I was only the second out of 600 patients to test positive. More women who get BC who don't have the gene.
Kleenex, my brother and his family live in Mansfield, too!
Hope everyone has a great holiday!
Deen
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TXBadboob - thank you for your response! I will be following up with a true genetic counselor, as there are likely other things I should be tested for as well. I do have two daughters, so it's important for them.
We have been in Mansfield for almost exactly 4 years, and we mostly like it. The schools are pretty good - for Texas - and we have almost everything we need down here (although a bookstore and a Panera would be nice!). I do have days when it's just too much of a faceless suburb for me - WAAAAAY too many chain restaurants down here. I like the smallness of it - you run into people you know at Target, etc.
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ILC, LCIS - Right Breast
LCIS, DCIS - Left Breast
BRAC 2 +
B/L Mx
44 years old
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geneskirt - Thank you for responding! May I ask if you have family history?
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