Not a Typical Triple 3--Am I Alone Here?

I'm 54 and lilly white.  I'm not sure if there is any color in my family tree or not.  After all I'm an American.  My mother had breast cancer but it was ER positive.  I am also BRACA negative.  There are a lot of us out there.  In women of color 60% of them have triple negative breast cancer.  I'm watching the research on women of color because who knows what they find may apply to me.

I am 36 year old white female with absolutely no family history on either side and I had the brca test and I am negative....I too have NO IDEA WHERE THIS CAME FROM....

I've had triple-neg BC twice, two different varieties! In 2005, a 4.5 cm medullary tumor that wasn't there on a mammo eight months before. It grew really really fast. In 2007, had 1.2 cm IDC tumor in other breast, found on routine post-treatment mammo.

I'm about as white as you get, Scandinavian and British gene pool <grin> No cancer of any kind in my family. BRCA-negative. But I feel like there's another gene out there that may apply to us. It just hasn't been discovered yet.

I'm the oldest (51) of four sisters. They are all getting earlier mammos, etc.

--CindyMN

I don't fit the "typical" tri-neg mold either. I'm caucasian and do not have the BRCA mutation. I WAS young (48) at diagnosis. That's the only factor I have that fits the profile. You can't really effectively define something by what it is not, but that's exactly what the tri-neg designation is. It is useful to look for commonalities and groups that have a higher incidence of it, as these are clues that could lead to an important discovery and maybe even a treatment. Still, I think that triple negative BC is probably not one disease, but many diseases with different conditions that drive them. We need more targeted research!

Indomitable 1  You are so right, whether we fit a mold or not we are all in the same boat.  I'm really interested in the research that was featured on Black in America.  I feel like there is a gene out there that we don't know about yet.  If the specialist from University of Michigan finds a common gene among the women of Detroit and the women in Ghana I'm doing to Detroit for the same test.

Good topic subject!

My stats are not typical: 

TN tends to be among younger women with high parity and history of breast feeding.  I have none of these characteristics as I am caucasian, BRCA neg, but mom had BC, don't know her receptor status.

Mine was completely INVISIBLE ON MAMMOGRAM, even with a marker.

Fast growing but small at discovery, 1.3 cm. 

Found by accident by my kitty!  

A lot of Medullary features (prominent lymphocytes, circumscribed, high grade). 

Sylviaexmouthuk

Just a positive thought for you.  You have gone cancer free for 4 years.  Your statistics for reoccurence have already vastly improved.  One more year and it is highly unlikely that your triple negative breast cancer will reoccur and you can be pronounced cured.  At least that is what my Oncologist told me.  My doctor wants me to take the vitamin D as well.

 I need to learn something here, I'm new to this.  Triple negative?   I am negative for the two hormone receptors what is the third?  Am I understanding this correctly?  I am the first person in all of my family to EVER be dx with bc.  I'm 47, caucasion, had my first baby @ 22 and breast fed both of my children.  I'm trying to understand what is happening to me.  I haven't had any genetic testing done.  Can someone help clarify my confusion?  I would be very grateful.

I guess I am a typical TN.  I am part African and part Austrian (a black woman) and I am 42 years old.  I also breast fed my daughter.  I love to hear about women who have survived TNBC.  I really need that positivity.

Anita

I also am causasian, 47 at dx, 2 children, breast fed, no BRCA gene and no breast cancer on either side of my family. I am the first and hope to be the last.

I fit into another triple negative mold.  I'm Ashkenzi Jewish and have the BRCA1+ mutation.  85% of us have triple negative disease.  There are hundreds, possibly thousands of mutations that haven't been identified yet.  It is quite possible that you all have one of those.  They are discovering more and more each day.  I know of a woman from India (born and bred in India) who has the same type of allele that I have (185delAG).  That is supposed to be a Jewish allele, but we figured out that during the first diaspora, some Jews did not stop in Babylon.  They kept going to India.  Hence, my Indian "cousin" in Mumbai.

 I know that there has been some resistance in the African American community to genetic testing to pinpoint any common mutation.  I understand the reluctance based on the Tuskegee 'clinical trials'.  But, if more African Americans would test, they could come up with a cure that much faster.  I believe that the fact that African American women do worse than the general population has more to do with genetics than with availability of care.

 Best wishes,

Caryn

I am learning more and more about TN BC from this forum. I had no idea that having children and breast-feeding them was connected with TN BC. I was diagnosed at 62 and have had no children. I had an ectopic pregnancy in 1971 at age 29.

When I was diagnosed with the BC I had to fill in an information sheet and was told that one of the risk factors for any kind of BC was not having had any children. A friend of mine who was diagnosed at the same time, but was only 38, also had TN BC. She has never been married and has no children.

I agree that these TN cancers are very fast growing. Mine seemed to have appeared overnight and was large. I told my medical team this and my GP but I do not think they believed me.

Here in the UK they do not test for the BRCA genes 1 & 2 unless there is a strong family history, so I have not been genetically tested. Could someone explain what being negative for BRCA 1 & 2 means? Does it mean that the cancer is not hereditary. I ask this because I was told by my consultant that TNs act like hereditary cancers, but are not. The p53 gene has been silenced somehow, allowing cancer cells to proliferate.

I feel it is high time that a preventive treatment for TN BC became available. We have been left in the darkness for too long.

I would be interested to have more information about medullary features in TN BC. What exactly is a medullary cancer and what do prominent lymphocytes mean?

As far as TN cancers are concerned, I was told by my consultant that about 90% of TN BC are basal-like, but I am not exactly sure what this means.

It looks as though when you are diagnosed with BC you have to ask a lot of questions. I did ask a lot, but not much information was available four years ago. On top of everything else, there is what I see as a connection between BC and hyperparathyroidism. Are there any statistics available out there?

What is also interesting is all the information now available about different races. Do we have any statistics about the number of black women, the number of white women, Asian and Jewish women affected by TN BC. They say all the races are mixed up, so how do we reach any conclusions?

How much does anyone know about the p53 cancer prevention gene, sometimes called " the guardian angel gene"? p53 turns genes on and off. If p53 becomes mutated, then it no longer performs its anti-cancer activity and the cell is much more likely to become cancerous at some future point.

I have found information about an experimental class of drugs, called PARP inhibitors, which have the potential for treating TN BCs. Trials have been carried out on women with TN BC that has spread and have found that PARP inhibitors added to chemotherapy give a longer survival time.

Another study carried out about TN BCs and basal-like cancers has found out that CK5/6 and HER1 are frequent in TN BC. Further studies are needed to investigate whether such cases might benefit from anti-HER1 therapy.

I do not fit the mold either. I am of Sicilian decent. BRCA 1 AND 2 negative. I was 42 at diagnosis.I have 2 children no cancer on maternal side for the woman at all. Paternal grandmother had BC cancer at 72 i think it was. Don't think they did the gene testing back than. She had unilateral Mx, no chemo and lived till 93. My Paternal Aunt died at 50 of ovarian cancer so I was recommended to get mine removed. The obgyn onc at Mass General told me there are actually 10 genes they know of but only test for the BRCA 1 AND 2. My tumor also came out of nowhere. They say these things take years to grow. I am wondering if that is actually the case for TN. I also heard of the PARP inhibitors still being studied. Does anyone know anyone who has partaken in the PARP study?

I was waiting til age 40 to get a mammogram too! Cancer found me at 39 -ugh! Triple negative is associated with a high Ki-67 score, which is the rate of tumor cell proliferation - the higher the ki-67 score, the faster the tumor is growing. In my case, mine came out of nowhere, and my Ki-67 is 100, so 100% of the tumor cells were actively dividing at the time of the test. I told my doctors that my tumor was getting bigger, but they dismissed it and said it was probably a hematoma from the biopsy. I swore I could feel that it was bigger, and sure enough when I had surgery, it had grown substantially to 5 cm!



They've GOT to find a cause and cure for us, and soon!

Hi.  My first dx was TN.  The second one is weakly ER+, mostly -.  I have no idea what the implications are.  

I can also feel my biggest tumor getting bigger as I await my mastectomy which is on the 2nd of Sep.

Oh, I'm Filipino, which makes me Asian, but I've lived in San Diego for more than 30 years.