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Niekira View Drop Down
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    Posted: Jul 02 2017 at 8:36pm
Hello everyone. I've been researching TNBC and came across this website, it's been great reading everything. I am 36, mother of two girls, 6 and 8, and I was just diagnosed with stage 1, grade 3 TNBC. I'm scaring myself, reading about how it's the most lethal type of cancer, most likely to return, hard to treat... I need to be here for my kids for a long time yet, and I'm terrified that I won't be around for them now.

I have so many questions, and the doctors appointments aren't happening fast enough for me! If anyone has answers, or good guesses from your own experience, I'd love to hear from you.

Will I need chemo? Do you always loose your hair? (Mine is waist length 😥)

Is it better/more typical to have chemo before surgery, or after? (My doctors are saying surgery will be done before I've even seen the oncologist!!??)


Im getting genetic testing done, but surgeon wants to do surgery before I have results. They said I can go back later to get a mastectomy if genetic testing shows I have BRCA 1 or 2.   This seems very backwards to me, I'm not sure what to to do about this.

My biggest question is of course, is treatment going to work? I'm discouraged from the statistics already.

Thanks
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Ppelo View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ppelo Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2017 at 1:31am
I was diagnosed with triple negative June 6 2017 and exactly two weeks after I opted for surgery. To me it seems chemo is always recommended first because Triple negative is so aggressive and it spreads fast. However I did not get the impression that it made a significant difference which is better first plus my breast cancer tumor hurt. I wanted it out. I spoke to several other women with breast cancer and many said that a formal diagnosis was not given until after surgery. In my experience I was happy I got the surgery first. In doing this they were able to tell me exactly what size my tumors were. Initially they thought I had two that were approximately 2.4 cm and .8cm . They also mentioned it could have been one very large one. They ended up being two that were 3.4cm. And 1.8 cm. They also were able to verify if my lymph nodes , skin or nipple were affected in addition to my pectoral muscle. All were negative. This will significantly determine what my chemo treatment plan will be. I read a lot of scary things about Triple negative too. I'm only 33 and it is very scary. However I have been told this type of cancer responds well to chemo. Also look into Kris Carr. She was diagnosed with stage 4 cancer @31 years old and is now 46

Edited by Ppelo - Jul 03 2017 at 1:34am
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TriplePositiveGirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2017 at 12:43pm
I think the question of whether to have chemo first depends a lot on the size of the initial tumor(s). My doctors recommended chemo first, which I ended up doing, in order to shrink the tumor prior to surgery. Believe me, I wanted the tumor OUT as fast as possible, but this way the doctors could see if the chemo had any effect on shrinking the tumor (which fortunately it did). I made it through 4 cycles, then had surgery, then completed the final 2 cycles after my surgery. Hair loss is likely but not a given, depending on the chemo. I had carbo/gemzar and I did not lose my hair on this chemo. I believe the ACT chemo causes hair loss. I know this is all very scary, but it sounds like both of you are early stage and triple negative can be defeated!
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Ppelo View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ppelo Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2017 at 6:34pm
Was  carbo/gemzar chemo because of your stage?
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Post Options Post Options   Thanks (1) Thanks(1)   Quote barrycarrot Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2017 at 3:51pm
Welcome Niekira. Our cases seem to have similarities. I was 37 at diagnosis and have two little girls that were 9 and 7 at the time. I also was stage 1, grade 3 TNBC. I had one small tumor that had not spread to the nodes when I found it.
 
I did chemo first, then surgery, then radiation. To me, I liked the idea of being able to gauge if the chemo was working by seeing if the tumor shrunk. Gave me a better sense of "I'm beating it" knowing that chemo was doing it's job. Yes, you lose your hair. Yes, it totally sucks. It really was probably the hardest thing for me on my cancer journey. But guess what - it grows back! And you get to live! Hair vs. my life - no chance that the hair was going to win. I was fighting for my girls. I was (and AM) going to be there for them. You are too! In the meantime of my chemo treatments going on, it allowed time for my genetic testing to come back so that I knew my options for surgery.
 
Chemo killed my cancer completely. To me, that made it all worth it and I'm glad that I was able to know it was successful, as if I had done surgery first...I would have not known. It gave me a better peace. It also gave me the option of just a lumpectomy vs. mastectomy. Radiation was my back up protection. I wanted to hit this nasty disease with everything that was available to me. I do NOT want to go through all this again.
 
I'm not saying if you go about things the other way that it is wrong. I'm just telling you my experience and how it was the best thing for ME. If you have a good trusted team of doctors, I'm sure they will steer you the best way possible.
 
Wishing you the best along your journey. You've got this!
 
Carrie
 
 
Age 38, DX: 12/10/15 Stage 1 TNBC, BRCA-, 7mm tumor in left breast, no nodes, ACT Chemo 1/4/16 - 4/15/16, Lumpectomy 5/16/16, PCR (Praise God!), radiation 6/22/16 -8/3/2016
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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2017 at 7:40pm
Niekira
You are in the scariest part now because nothing has yet to be determined other than "YOU HAVE CANCER." It does get easier once the ball gets rolling and you are more comfortable with procedures and what is going to happen. Most likely you will have chemo. Chemo is sometimes not done if the tumor is very small. Generally chemo is given first these days, to gauge whether it is working [ also depending on size of tumor.] For me becoming aware...[reading Dr. Love's Breast Book, after the kids went to bed each night] made things much easier. 

As you'll see by my signature, I was dx 17 years ago. They hadn't even named TN then. I was given half the chemo that is the standard today. My daughters were 9 & 13 when I was dx. 

good luck to you. 


kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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TriplePositiveGirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2017 at 10:34pm
Ppelo - my oncologist thought that the carbo/gemzar was the best choice for me. I can't really say why - I didn't question her enough - I think I was too scared at the time and didn't think to ask. I later did come to find out that this combo - especially the carboplatin - had shown great success with Triple Neg breast cancer. I see more and more women posting that are also receiving Carboplatin. 
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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