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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2017 at 9:36am
Hi Nancy!  I'm from St. Louis too.  Siteman Cancer Center has a great genetic counseling program.  They gather family history, including familial cancers and may suggest certain genetic tests if they feel there could be a hereditary link.  Also check out Color's 30 gene test for hereditary cancers.  It's a very affordable test.

http://www.color.com/learn/the-science


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Pina View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pina Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 9:44am
Hi Everyone, I am a new member. I am 61 and just got diagnostigated with TNBC stage 1( grade9). I am very lucky as I went for my annual mammo, end of Nov,got the new 3D who showed the cancer very early. Got my surgery Jan 10 and it is very small 1.3 cm no involvement of the lymph nodes. I am so glad to have found your site to understand how to handle my future treatments as I have to receive chemo and radiations.
Even that I was preparing for the possibility of breast cancer, I still was shocked to realize that it was TNBC. Both my father and 2 sisters( one just passed away) are breast cancer survivors but the three of them had the hormonal one and we're BRAC neg I alway tought if it comes, I I'll deal with the surgery , take the tamoxifen and go with my life my aunt who just passed away was a 30 y survivors. Now I am dealing with this unexpected diagnostic, trying to read all here is on the web and telling you the true a little bit scare not or me but for my kids, my daughter especially. I do not carry the BRAC gene but was + for the RAD50.
I know ,I should take one step at the time but I cannot stop reading and reading...
Thanks for listening

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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 10:02am
Hello Pina,
I am so glad you found this site, but I am very sorry that you have this diagnosis.  I think we all do a lot of reading when we're first diagnosed, just be careful what you read on the internet, ok? Of course you're scared, we all were. Be sure to take a deep breath, then take another one and ask your questions here, we'll do our best to answer you and support you through this illness. I was much more active here when I was initially diagnosed, now I"m working on allowing my body to heal and don't post as often but I am here this morning.

Much strength for each day, God bless,
Jacklin
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 1:31pm
Hi Pina,

My sister was diagnosed in September of last year.  She started the 4 treatments of adrymicin and cytosine...she completed those without hardly any major side effects other than low white blood counts and some fatigue.  She is now onto the 12 weeks of Taxol, f which she has completed seven so far. And she is going great.  She was also diagnosed as Stage 1 no lymph node involvement.  I wish you the BEST!!   My sister was so worried and nervous about all the side effects of the chemo. 




Edited by LittleSister - Jan 25 2017 at 4:45pm
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 2:10pm
Hi Pina,

Thank you for sharing your story and introducing yourself.  I have a quick question - did anyone else in your family get the expanded genetic testing?  I know they are finding more mutations, beyond BRCA, that are associated with hereditary cancers.  This link shows the cancer type and associated genes.

30-gene Test For Hereditary Cancer Risk

https://www.color.com/learn/the-science




DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Tulips View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 7:15pm
Hi Pina,

Welcome, and I hope you find the support and answers to your questions you are looking for.  Glad you caught it early and have no nodes.  I hope you get through treatment easily.

I was diagnosed in April 2015, 2.2 cm,no nodes (age 45 at the time).  I did AC/T chemo plus carboplatin, radiation, lumpectomy, and then Xeloda.  I've been totally done with treatment since August, and it feels great!  I did not have a particularly difficult time on chemo--it went much better than I ever expected.

I also had a mutation on RAD50.  My grandmother had TNBC, although she didn't get it until her 70's, which is usually not a big flag.  Her mother had ovarian cancer, which can be related to breast cancer.  My mother (her daughter) had uterine cancer in her 30s (still doing great at 72!), but uterine is NOT supposed to be connected to breast cancer (but I still can't help but wonder).  My sister is dealing with ER+ breast cancer right now at age 51. Since there are not many women in my family tree (grandmother was only child; my mother only has a brother), I feel like that's a pretty extensive history.  But I was BRCA negative.  My RAD 50 mutation was called "likely benign" and a "VUS-variant of unknown significance".  So I'm a little curious about what you've heard about your RAD50 mutation.  Are you the only one in your family with it?

Good luck!  This will all be in your rearview mirror before you know it!
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pina Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2017 at 5:30am
Thank you for your kind words Tulip. They are very helpful

Edited by Pina - Jan 26 2017 at 8:42pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pina Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2017 at 5:36am
Yes my dad did and he was BRAC 1&2 neg. I just had the extended one and they found that even if I was BRAC neg I was positive for the RAD50 who is related to breast cancer ( defect in reparation of DNA)
In my father side . Him and both his sisters had breast cancer( the hormonal one) and a couples of my cousins ( in situ & stage one hormonal)
I am the first with triple neg.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pina Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2017 at 5:52am
As now I think I am the only one with the RAD50 , my father cancer was detected almost 10 years ago( he is now83) both his sisters had breast cancer in their 60 s. But no genetic testing were done. When I talked to the genetic counselor here at Yale after my father had his cancer, they told me that I didnt need to do it as he was BRAC neg! This did change when they found my cancer last month. My sister who leave in Belgium and had in situ breast cancer 2 y ago will have genetic testing now as well . Don't know much about the RAD but can tell you. Lots of cancers in my family! Forgot to say, cancer also in my mother side but only my maternal grand mother had breast cancer and died in her 70 s
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2017 at 8:02am
Pina and Tulips,

You've probably already seen this, but thought I'd share about RAD50.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Pina View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pina Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2017 at 8:37pm
Yes , I did 123Dona and Tulip.
Another site for RAD50 is Cancer genetics web and look for genes- RAD50 , you will find the latest research. and I also did research in Medline. It is mostly involved in repaire of DNA.
It is amazing how fast I went from not knowing anything about TNBC one month ago and now be almost as Knowledgeable as my doctor! I don't know if it is good to know to much but is the way I try to deal with my scares.

Edited by Pina - Jan 26 2017 at 9:00pm
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Tulips View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2017 at 3:59pm
Yes, thanks so much Donna!  I find the whole thing a little confusing, so I love to read about it.  My particular mutation on RAD50 is a variant of unknown significance (VUS) considered "likely benign", although there are definitely other mutations on RAD50 which are harmful.  I suppose there isn't enough data on mine yet to definitively say if it is harmless or harmful, but it is more likely harmless.  However, with my family history, I can't help but be skeptical.  I feel like there probably is SOME genetic component.  So I like to stay in the loop, thanks!

And Pina, yes, we can all become experts quickly!  Wish we didn't have to, but I am grateful for all of the information available to us!

Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2017 at 6:45pm
My wife is in on-going research and clinical trials @ UCSD/Moores, they are doing ongoing genetic/genomic/molecular tests and they have isolated a few mutations, and I looked to see if RAD50 showed up, it did not.
She is having tests by these (3)labs: Guardant360
                                                 FoundationOne(they found a strong mutation called EGFR, which has an approved FDA drug, if she has a recurrence, "Lapatinib "
                                                 Carris

fyi, good to compare notes...

wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ineta Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2017 at 5:16pm
Hi, my name Ineta I am from Latvian, my diagnosis - multifocal breast cancer. I have received six chemotherapy prior to surgery, amputation of the right breast and befor surgery 2 chemotherapy courses. Now it's keep radiation therapy - 25 times. While reading your leaf learned that you designated after tarapiju medicine - Xeloda or analogue Caoecitabine or set your country TNBC treatment guidelines?

TNBC, Stage 3C, ,Grade 3, KI-67 87%, age 54
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kjlady Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2017 at 8:41pm
Hello , I was diagnosed on March 22, 2017 with Triple-Negative invasive ductal carcinoma . I found the lump myself in late January, It was about the size of a pea . It is a 1.8 size. The doctor said the good part was that it is small . They offered me a lumpectomy where they would remove the lump and send it to the lab to know more about it . I was told they can't tell me what stage it is until they get a pathology report .The only other option offered is a mastectomy . If I do the lumpectomy I will need radiation for certain and maybe chemo . I know chemo and radiation causes secondary cancers .  I've never had breast cancer before. I am divorced & 68 years old . I have 2 grown kids and 7 grandkids . My first great grand daughter is due April 17 . Have any of you heard of research being done on this type of cancer in other countries ?  Thanks guys !
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2017 at 9:07pm
Hi Kjlady,

I rarely post these days...but I am up and jet-lagged in London and somehow I wanted to reply to your post. 

I am a patient advocate and have helped many on this wonderful forum over the last 8 years.

One of the key questions I have is if you have been genetically tested for mutations that may have pre-disposed you to breast cancer. If you have an 'actionable' mutation that can make a major difference in your treatment plan.

what country are you in? 

warmly,

Steve

Edited by SagePatientAdvocates - Apr 06 2017 at 9:08pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kjlady Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2017 at 11:02pm
I am in the united States . And no i have not been tested for mutations . I am new to this . no one else in my family has had breast cancer . I was not aware of this test . No one has mentioned it to me . Thank you for your reply and any help you can give me . 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2017 at 8:30am
Hi Kjlady,
So sorry about your news.  Typically, for TNBC chemo is recommended for all tumors larger than 5 mm, so I think it is likely they will recommend chemo for you regardless of whether you choose mastectomy or lumpectomy/radiation.  (By the way, the survival rates are extremely similar whichever surgery method you choose).  Yes, with lumpectomy they always recommend radiation and with mastectomy only sometimes is the radiation necessary.

There is actually  A LOT of research being done on TNBC both in the US and other countries.   This is good news for us all.

It is likely that they will test you for genetic mutations even without a family history (not just BRCA; now they have gene panels which test many genes for mutations that may be related to breast cancer).  If you end up with a known harmful mutation, it could affect your treatment plans like Steve said (for example, it might push you towards mastectomy because you would in that case be more likely to get recurrences or new breast cancer primary tumors in the future.  And it also might encourage you to consider adding certain chemos like carboplatin and/or parp inhibitors that have been shown to be particularly effective with BRCA+ TNBC).  Without a family history, the odds are more likely that you will be negative for a mutation, but you will have to wait for the results to know for sure.

You will feel much better once you have a treatment plan in place.  Waiting is hard, but you will get there.  Good luck with your treatment.
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Norma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2017 at 1:49am
I am 3 weeks out from TNBC and DCIS   INVASIVE COMPONENT BARELY 6mm so I am JUST beginning of stage 2. Dr says chemo (I am 72 -but otherwise health and very active) would be every 3 weeks for 4 treatments BUT with MINIMAL increase in preventing recurrence. Without chemo 85-90% non-recurrence.   
After finding this site I am wondering if I should have chemo. I have a horrible stomach and I am sure get double neauseated. ??
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2017 at 7:52am
Hi Norma,

You are asking a lot of very good questions.  I believe if your tumor is 6 mm, then you should be stage 1, not stage 2.  You are right on the edge of the cutoff for recommendation of chemo.  At 6 mm, the recommendations are "consider chemotherapy".  There is also question about giving chemo after the age of 70 and it's effectiveness.  Here are a couple links from the NCCN Guidelines for breast cancer patients.  Is it possible for you to get a 2nd opinion?  Are you close to one of the NCCN member institutions, like Siteman Cancer Center?  







DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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