Just found out I have TNBC. Need a friend. |
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btstark2003 
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Joined: Apr 24 2010 Location: St. Louis area Status: Offline Points: 426 |
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 Posted: Mar 27 2013 at 1:48pm |
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Hi Aligrace,
And I add my congrats that you caught your cancer when it was so tiny! That's so lucky! And I'm glad that you won't have to have chemo or rad tx because they are unpleaseant and toxic and it seems that you have a very low risk for recurrence with such a tiny tumor and being LN- (assuming you are BRCA-).
I think it's really smart to have a mastectomy and SN biopsy and I'm so glad the pathology reports showed nothing new. It is NOT TRUE that a history of breast cancer on your father's side "doesn't matter" - it certainly does. BRCA mutations can be passed down through either the father's or mother's side. The genetic counsellor will tell you all about this. So it's also very smart to have the BRCA mutation testing done.
Your first assumption about TNBC is not wrong - TNBC is RELATIVELY rare. It represents only about 15% of all breast cancers. But since breast cancer is so prevalent, that adds up to a lot of women!
Having a checkup with your oncologist every 3 months is very important! Sounds like your onc knows what she is doing.
As for the double mastectomy - if you are BRCA+ then it's a no-brainer to have it since you already had the single. If you are BRCA-, then it's a much tougher call. A mastectomy is no cakewalk!
Good luck with the BRCA results!
Beth
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2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF 2011 LN mets, Gem/Carbo, surgery, rads 2012 lung mets, PI3Ki/taxo 2013 anti-PD-1 2014/15 Xeloda, IMMU-132, eribulin Aug 2015 Keytruda |
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aligrace726
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Joined: Mar 22 2013 Status: Offline Points: 48 |
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Posted: Mar 27 2013 at 4:48pm |
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Thanks so much Beth,
I think I'm very lucky too. God has been very good to me through all of this. I wasn't aware that a mastectomy was that tough to go through. I'm choosing not to do the reconstructive surgery. Why? I don't want to go through any surgery that isn't necessary. Yeah, my family thought I rushed to judgement about the mastectomy, but when he gave me the lumpectomy results and said it was clear and all I needed was some radiation, and then said it was aggressive and could come back I immediately told him to set up surgery and do a mastectomy and sentinel node biopsy. My Oncologist told me yesterday that I made the right call. I've done the paperwork yesterday for the BRCA testing. I'm waiting for them to call back with my appt. for the genetic counselor. Having the test wasn't really a option for me. I have one daughter and two grand daughters that I want to look out for. I just hope it's negative and I haven't passed it down to them. It will definitely be a no-brainer if its positive. I will immediately set up surgery for a right side mastectomy and ovary removal. My oncologist also done a lot of blood work yesterday and a CA27-29 test. From my understanding its a test for women who have had breast cancer and it checks for signs of early re-accurances. So I hope all that comes back okay. I still feel like I'm walking on needles. I do have a few questions that occurred to me today..... maybe you can help. Can the BRCA skip a generation and if my test is negative what does that mean I understand if its positive that its a mutation, but what if its negative? And what do the majority of women do that are BRCA negative about having a mastectomy to remove the other breast. Again thanks for the congrats. I really appreciate it. Please put me in your prayers and hope the rest of the testing comes back okay.
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DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
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arabella
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Joined: Jan 28 2013 Location: Alabama Status: Offline Points: 288 |
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Posted: Mar 28 2013 at 6:57am |
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Hi aligrace!
Thanks for being understanding about my getting your size confused. I really am so happy for you to have caught this at such a very small size. I'm sure you will be full of info after you talk to genetic counselor and if no one responds to your questions above, will you please come back and answer them here? I too am interested in all I can find out about this BRCA mutation but it will be a while before I speak to a genetic counselor. My very best to you.....I will remember you in my prayers. Kaye
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Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy |
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aligrace726
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Joined: Mar 22 2013 Status: Offline Points: 48 |
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Posted: Mar 28 2013 at 10:46am |
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No problem Kaye,
I realize how lucky I am to have it caught at such a small size, and just to think I was going to put my mammogram off another year, because I've actually had people tell me there is nothing wrong with just having them every 2 years. Fortunately when I went for my yearly gynecologist appt. she told me when I came back in a few weeks that I better have had my mammogram done and the report on file. So KUDOS to my gynecologist.
I definitely will post the answers.....If you have other questions that I didn't mention let me know and I will add them to my list and ask. You may have questions to ask that I haven't thought of and need answers to. If you want PM them to me or post them here, either one. |
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DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
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beck
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Joined: Nov 30 2012 Location: ILLINOIS Status: Offline Points: 276 |
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Posted: Mar 28 2013 at 11:44am |
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YES THATS THE LATEST THING , IT WAS ON TV AND FRIEND OF MINE WAS TOLD EVERY 2 YEARS, WHAT THE HECK ARE THEY NUTS bECK
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ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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denise07
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Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
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Posted: Mar 28 2013 at 10:20pm |
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Ali,
Very happy for you as I did not realize your tumor was so small you are very fortunate to find it very early and your doctor seems to be very on top of things, good luck with your labs and genetic testing take it ond day at a time as krisa did mention tnbc traveling via blood stream I would ask your doctor that one just to be on the safe side just my suggestion, please keep us up dated.
Very happy for you...
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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btstark2003
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Joined: Apr 24 2010 Location: St. Louis area Status: Offline Points: 426 |
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Posted: Mar 29 2013 at 6:15am |
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Hi Aligrace,
To answer your questions... If a woman inherits a harmful mutation in either the BRCA1 or BRCA2 gene from either her father or mother, then her chance of developing breast cancer in her lifetime is about 60%. Normal risk is 12%. If you have a BRCA mutation, then each of your children has a 50% chance of inheriting the mutation from you. It cannot skip a generation. Here is a link to a website with more detailed info about BRCA1 and BRCA2 including the other types of cancer they can impact and the implications for men. http://m.cancer.gov/topics/factsheets/BRCA You may have to cut and paste the link. Keep us posted! Beth |
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2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF 2011 LN mets, Gem/Carbo, surgery, rads 2012 lung mets, PI3Ki/taxo 2013 anti-PD-1 2014/15 Xeloda, IMMU-132, eribulin Aug 2015 Keytruda |
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bunnyutah
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Joined: Jun 15 2013 Status: Offline Points: 3 |
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Posted: Jun 15 2013 at 12:01pm |
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Triple negative can be a scary diagnosis but it is beatable. I was originally diagnosed with stage 2a triple negative of course grade 3. I believe in a more natural, proactive approach to the disease. I had 1 micromet which just means microscopic cancer cells in one lymph node. I did not do chemo, utilized naturopathic oncologist for my treatment and availed myself to a myriad of different naturopathic protocols. It has now been 4 years since that time and I am doing just great. I did avail myself to radiation but also incorporated a naturopathic protocol at the same time. Triple negative is more responsive than other breast cancers to life style interventions. What that means is exercise is key and paramount to do. Stress reduction is also paramount. Mind/body connections are helpful to controlling your stress levels. Nutrition in my mind is also extremely important. Just having a positive attitude can make a difference. Take deep breaths, and you will get though all of this. It is beatable and that is what you must remember no matter what treatment plan you are on.
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