Calling all TNs
Comments
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Bak--Yes, I took myself off metformin a week or two ago. I was hoping it was the cause of my constant headache. No such luck. I haven't started taking it again, but I guess I should. I'll discuss this with my PCP when I see him next. How are you doing? Waving hi to all. Jan
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Luah,
I didn't do an independent study of my own. I'm repeating the numbers from my genetic counselor. I was told 20 percent of breast cancers are triple negative and of those 20 percent, 80 percent of them are BRCA positive. Of course, you do not need to be triple negative to have a BRCA mutation. If THAT were the case, only 16 percent of women with bc would be BRCA positive and we know the number is higher than that. (Sorry, I was a math major...I love playing with numbers)
I did not independently verify the statistics my genetic councillor gave me because that councillor is Jill Stopfer. She is the founding member of the cancer genetics programs at the Abramson Cancer Center and university of Pennsylvania in 1994, and was one of the first genetics counselors in the country to focus solely on oncologist so I trusted her numbers.
It doesn't mean she's correct...Just wanted to share where my numbers came from! Since I have no family history of breast cancer, the only reason she recommended testing for me was because my cancer was triple negative...low and behold, she was correct. I'm BRCA1 positive.
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Hi Rad: Thanks for sharing the source of the BRCA/TN statistic. I have no doubt she is a highly qualified genetics counsellor but there may have been an unintentional miscommunication. I am responding because I think there's a risk that we may leave the impression in this forum that if you are TN, you are very likely BRCA+ and that is not the case. Also, BRCA incidence among BC patients is nowhere near as high as 16%. I have referenced some studies below (with lots of numbers perhaps only a math major will appreciate!... or a research junkie, which I freely confess to being, lol).
As you experienced, many cancer centres are now referring TNs for BRCA testing (especially if you are younger) because TNs are indeed more likely to be BRCA1+ than the general cohort of BC patients - like you, that in fact was how I qualified for BRCA testing... but I was negative.
- There have been studies of small sample sizes like this one http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048924/ showing overall 19% of TN with BRCA mutation.
- And there is this study http://www.ncbi.nlm.nih.gov/pubmed/22434525
showing 16% of TNs as BRCA1+ (BRCA2 is generally not associated with TN), and
as high as 36% with early onset BC defined as <40 years here. - Fortunately there have also been larger-scale studies
recently such as this http://meetinglibrary.asco.org/content/115250-132 . It shows overall a 10% BRCA prevalence rate among TNs, subject to variations among racial/age subgroups but none above 24%. - Regarding BRCA incidence among the general BC population,
some specifics are in the study here http://www.ncbi.nlm.nih.gov/pubmed/23975317
where prevalence of BRCA mutations ranges from .5% among Asian Americans to
10.2% among Ashkenazi Jews. The rate among non-Ashkenazi Caucasians is under 3%.
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So I'm an hour away from my recheck of the little nodule I found last month that they assured me was nothing to worry about. I'm afraid it's bigger so they won't have any trouble finding it.
I also think there is another one beside it, and just now I noticed an enlarged pectoral node. SCANXIETY. I think so. Fingers crossed for me please. I'm either coming back tonight to announce my 3 year anniversary of being NED or I'll need some cyber hugs.0 -
(((((HUGS))))) Dizzy! Prayers too!
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Dizzy, - sending hugs and BE WELL wishes!
Radical and Luah, I am doing my best to follow your numbers .
I am TN, but did not test positive for the BRAC gene, even though my Mom, and first cousin had BC, as well as my Mom's first cousin. I am convinced that there is another gene that we all carry that has yet to be identified. 0 -
Dizzy, hugs to you!
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Thanks Luah,
I do appreciate the studies...yes, we math people love them too! Btw, I'm one of those lucky Ashkenazi decendants! Lol my mutation is over 2000 years old!
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thank you luah, I knew something wasn't right and tried to get my numbers together this morning to clarify, but not being a numbers person it just wasn't coming. Thank goodness to you numbers people. So my summary and understanding goes like this, a simplified version but it helps to clarify in my head and probably others; Most breast cancers that are BRCA+ are usually tn, but it does not mean that most tn are BRCA+. If you are tn, have a family history of BC or ovarian ca, are <40, are of Ashkenazi descent (Jewish Eastern European), are male, have recurrent cancers (and there may be a few more) you would "qualify" for BRCA testing. I had 3 of these (tn, 1 grandmother with ovarian ca very late in life(but no BC in the family) and Ashkenazi descent) and was tested but was negative for the BRCA gene mutation.
Huggs dizzy, fingers crossed.
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Okay, I'm back. I'm going to go ahead and announce 3 years NED!!!! The nodules are still a big concern because of where they are so I'm going to have them surgically removed in the next couple of weeks and they will test them then. No other signs of cancer found anywhere else. This girl was stage 3c with an 8cm tnbc tumor and I'm kicking cancers butt!!
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Dizzy,
That's great!!
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Dizzy, Happy Happy!
Hi Jan, waving back at you!
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Yes! Dizzy! glad to hear your good news!
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Way to go, Dizzy!
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Dizzy- Congrats on 3 years NED!!!Because I was only 40 years old at time diagnosis with no family history, my MO requested genetic testing for the BCRA 1 and 2 gene. My insurance required genetic counseling before they would pay. I went through the counseling which was very informative. Fortunately, I tested negative. I was never advised I should test because I was TN. I think the Cancer Center I go to recommends all women get tested. I've met a few young women with BC who were never tested nor was it ever mentioned. Different MO's recommend different things.
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dizzy...wooo to the hooo...3 years is huge for TN's...so exciting
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Dizzy, So happy for you!
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You rock, Dizzy... and your 3-years NED will inspire many others with advanced TN!
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Yeah, Dizzy, doing a happy dance!!
Did anybody get an inconclusive BRCA testing? I did for BRCA 1 and it's sooooo frustrating! I'm in the gray area and not sure what that leaves me in regards to getting ovarian cancer. There is no breast cancer in my family, but found out my great grandma and her daughter (great aunt) diead of ovarian cancer. That's all the family history that could potentially affect me. Sooo, still don't know if I should get an oophorectomy or not. For now I'm not because I'm still healing (physically and emotionally) from this year's mx.
Anybody else have similar stories?
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Just had surgery on the 10th. My pathology report came back with clean margins and my lymph nodes came back clean too. I still have radiation but I am hopeful for the future!!
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Superbody my BRAC test came back as inconclusive as well. My grandma (Mum's mum) had breast cancer and died at age 86 and my mum died of ovarian cancer at 48. I really don't know what my chances are for ovarian cancer or where that leaves my beloved daughter. I too don't know whether to go for an oophorectomy either. It's the thought of it going to my daughter or her daughter that frightens me. I can understand your frustration but I'm not sure what to do about it.
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Congratulations Coop! That's good news!
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simple, I see a new pucture. Nice! Looking good with nice hair regrowth.
Congrats dizzy and coop!
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Such great news Coop!
Looking mighty fine Kay
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For those of you with inconclusive BRCA testing, I imagine that is very difficult with regards to your children.... I'm sorry for that. I hope you elected to keep your blood on file if you were given the option. There are so many studies going on with those two BRCA genes alone looking for other known mutations as well as research with other genes. Maybe something will come up that will eventually give you some direction and you won't need to wonder.
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Coop!! yeah!! I know that awesome feeling you get when the news is finally good!
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BAK94 and others;
I had tnbc in 2010 and in the last year, I've had neuropathy that has progressed thru my entire body. I had it really bad in my hands and feet after chemo, but this is not related. Chemo neuro does not start progressing after 4 yrs per my neurologist.
Anyway, it started with the 'stocking/glove' syndrome Bak94 describes. Its been 6 months of ruling this and that out, and I"ll have a brain scan sometime next week. 50% of neuropathy is idiopathic (unknown) and I hope I don't fall in this category because its misery. All general blood tests are normal but the fatigue is off the charts.
So here's my question: Has anyone had a recurrence that was preceeded by painful neuropathy (my bones burn and my skin feels sunburned). And yes, I've tried everything to deal with the pain. You won't scare me...I just need a diagnosis before I lose my mind!!!
Love to all my tnbc sisters
Ruth
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Ruth, So very sorry you are suffering with pain and the unknown. I have no experience with what you describe, but I just want to tell you I'm thinking of you and hoping you get relief soon.
Dizzy, Happy dance with you. HooRay!
Hi Meadow
Jan
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Dizzy - congratulations!!!
Coop - awesome news!!!
Ruth - my situation isn't actually like yours, but I had to respond to your post. I don't have typical pins and needle neuropathy, but something is going on with my bones. During chemo I had terrible, every day, constant bone pain in my sternum, ribs, shoulder blades and spine. Over time, while still on chemo actually, it got better. However, 2 weeks after finishing chemo, I developed a sharp, stabbing ache in my rib, on my back. The rib is also tender to the touch, worse at rest and first thing in the morning. I have other ribs that are tender to the touch, but not painful otherwise. I also have occasional pain in my spine, back, hips and shoulder blades, although it's not as painful or constant as my one spot on my rib. It's an odd pain that I've never experienced before. I'm in the process of trying to get a bone scan (my insurance denied it so I'm appealing), but my onc keeps telling me she doesn't think it's mets. Since they did a bone scan when I first had the pain while on chemo, I had to make a really big stink to have further evaluation. So while I'm worried, deep down I trust my doctors and think it will come back clear. From my own research, the ONLY other thing I can come up with that would be causing the pain is an idiopathic neuropathic pain syndrome that has settled into my bones. Pain syndromes aren't super common, but known to happen post chemo, especially after Taxol. I'm not sure about them developing years down the line, but it wouldn't surprise me. As grateful as I am to chemo for saving my life, it has ravaged my body. You mentioned seeing your neuro, but have you talked to your onc about it? Again, I know our situations are different, but I had to respond to you because, like you, all I want is a fricken diagnosis at this point. I'm doing my very best to live my life and focus on other things, but it's difficult when you have a nagging pain in the background for which you have no answer. I'm sending you many thoughts and prayers that your upcoming brain scan is clear and you get some concrete answers soon. Please keep us posted.
Ladies, I'm hoping you'll indulge me in a little poll. If you were told rads would decrease your risk of recurrence by just 5-7%, would you do it? I think I mentioned here before that although my nodes were clear, I had probable LVI. My rad onc said the LVI, along with the facts that my tumor was near the chest wall, I'm premenopausal, and my tumor was over 2 cm, all put me at a greater risk of recurrence, so he's recommending rads. (He based that info off a study out of Harvard.) Both my BS and onc have told me if this was their decision, they would not do it because the risks of rads outweigh the 5% benefit. They both mentioned that the pCR I had was basically my insurance in place of rads. I hear that, but I just don't think I can walk away from this leaving those percentage points on the table. I'm getting one more opinion from an expert at a university hospital tomorrow, but I'm 99% sure I'm going to do it. I realize this comes down to what I'm most comfortable doing, but I'm curious what you all would do and why.
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Alicia, short answer to your problems, I had horrendous aches and pains for a solid year after chemo (which btw nearly killed me). I had brain scans, bone scans galore and everything came back clear. Sternum hurt, ribs hurt, on and on. Give it 6 months and save your time and money
I'll keep ya' posted.
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