37 and Just Diagnosed TNBC
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Topic: 37 and Just Diagnosed TNBC
Posted By: Tabatha00
Subject: 37 and Just Diagnosed TNBC
Date Posted: Jun 03 2009 at 11:17am
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I just wanted to introduce myself. I am 37 and just found out this morning that my breast cancer (invasive ductal carcinoma) is ER/PR negative and also HER-2 negative. I was really upset by this at first because I know being "positive" gives you more options.
I'm not new to the cancer thing. My sister was diagnosed with breast cancer when she was 29 (she is now 41 and doing fantastic) and I had an Aunt (father's sister) diagnosed with the same kind of cancer I have when she was 37.
I guess I've been looking for some good news out of the bad and this morning's results didn't help me any. Please tell me that there are things that can be done for TNBC. I will be having a double mastectomies on June 11 and I'm ready to get that done, get going with treatment and put this all behind me.
I guess I'd just like some encouragement that all is not lost and that being TN isn't horrible!!!! I will be meeting with an oncologist on Monday to see what he thinks my treatments should be and then I'll be heading to another facility in Birmingham, Alabama to see what they think.
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Replies:
Posted By: SagePatientAdvocates
Date Posted: Jun 03 2009 at 11:37am
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Dear Tabatha,
my daughter was dx at age 36 in August 2004. so in a couple of months she (we pray) will be 5 years N.E.D. you will see on the site several threads on PARP inhibitors that may help folks with TNBC hopefully within the next year or so. I think it is important to have a positive attitude and try to be your own advocate and try to stay current on new developments. There is a marvelous woman her who posts as trip2 who does an absolutely superb job posting new research in the resources section and at times on the regular forums as well. Pam is her real name and she is simply incredible so please go through that section and try to stay active on the board checking new developments out that you can then perhaps take to your oncologist. I would also encourage you to check with a Certified Genetic Counselor to see if testing for a BRCA gene mutation may make any sense. good luck to you... all the best, Steve ------------- 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 |
Posted By: Tabatha00
Date Posted: Jun 03 2009 at 11:42am
| I am actually waiting on the kit to be sent to my surgeon's office so I can do the testing. I'm pretty sure I have the gene but want confirmation as I also have a twin sister and we both have daughters. Thanks for your reply! |
Posted By: Shelly Rae
Date Posted: Jun 03 2009 at 5:32pm
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I have read that some people have chemo before the operation to see if the drugs work & make the tumor smaller. I wish I would of done that as mine was pretty big. |
Posted By: SagePatientAdvocates
Date Posted: Jun 03 2009 at 6:32pm
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Dear Tabatha,
it is my understanding that if you are identical twins with your sister(and no need for her to test) you both have the gene mutation if you are positive and she will be negative if you are but if you are fraternal the odds go back to 50-50.. my eldest daughter is BRCA1+ and her twin brother is obviously fraternal so 50-50 for him but he has not tested to date. I will root for a negative result for you!!! all the best, Steve ------------- 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 |
Posted By: Luv2sing
Date Posted: Jun 04 2009 at 1:49am
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Hello Tabatha,
Just wanted to let you know "all is not lost". As you say you are not new to cancer. Stay positive, be inquisitive, if you feel a second opionion is needed ... get one. Surround yourself with positive people, don't give into the 'horror' stories, keep yourself as active as possible and listen to your body. You are not alone. You will find support here as well as from family and friends.
Be encouraged.
Raymon ------------- Raymon 
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: Valkayri
Date Posted: Jun 04 2009 at 9:37am
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Hi Tabatha,
Like Shelly Rae said, a lot of women have neoadjuvent chemo(before surgery) to see if the tumor responds to chemo and shrinks...I did that. I would ask about that when you meet with the Dr.s next week. There are definite benefits to it as far as seeing if the chemo works against your tumor or not, as that varies even within all of us TNBCers. Best of luck to you with the genetic tests as well...I have daughters and the gene and I sincerely hope you do no have it for the heartache that alone causes:)
Good Luck,
Kara
------------- TNBC May 2008 @35 stage 2, grade 3 3.7 cm & under 1cm BRCA2+ dose dense, neo-adjuvent 4AC& 4Taxotere bilateral mast Oct.08 Reconstruction finished Nov 09 www.mishmashin.blogspot.com |
Posted By: mgradinger
Date Posted: Jun 04 2009 at 12:18pm
 Tabatha, I ( I am now 49) just saw my oncologist this morning for my 6 year checkup. Cancer free today and in great health, I was diagnosed with a 3cm Triple Negative breast tumor 6 years ago. Today when I saw my doctor (one of the top oncologist in San Francisco) I asked if she had seen many more of my type of tumor. She mentioned that there is a wealth of new studies on this type and new treatments are being developoedShe said yes a few, but it is still rare. She mentioned that there is a wealth of new studies on this type and new treatments are being developed.
I had a major lumpectomy, chemo and radiation 6 years ago and am doing great. You will be doing great soon too. As one of my sisters pointed out to me when I was starting my treatment - "Chemo is your new best friend. Be happy you've met her, she's going to make you well."
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Posted By: rena
Date Posted: Jun 05 2009 at 4:48am
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Hi Tabatha. I was diagnosed at age 37 also. I had 22 positive lymph nodes and underwent surgery, chemo and radiation. My tumor was ER/PR-negative. That was in 1986, and there was no HER test in those days, but my oncologist is 99-percent certain that I was triple negative. I later tested positive for BRCA2.
I am about to celebrate my 60th birthday. I have watched my daughter grow from a feisty two-year-old into a lovely 24-year-old, and I've had 22 years with my husband that I was afraid I might not have. Chemo is a very potent weapon against triple negative breast cancer. We may not have all the "after-drugs" that ER/PR-positive women have, but we can feel confident that chemo works especially well for us. Just know that there are many of us who have lived long, healthy lives after triple negative bc. I wish you all the best. Rena ------------- Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm) |
Posted By: Tabatha00
Date Posted: Jun 05 2009 at 5:05am
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Well I had a post and then lost it. Figures! lol I just wanted to say thank you for all the support and the encouragement.
I will be meeting with the Breast Clinic at the Kirklin Clinic in Birmingham, AL on Wednesday so I'm ready to get this show on the road.
I have to say when I found out I was ER/PR negative I was more upset about that than I was about actually having breast cancer. I will be having a double mastectomy no matter what (because of my family history).
My main focus right now is praying for no node involvement. My tumor was 2.2 cm and dang it I don't want my nodes to be involved!!!! I didn't get my way with the ER/PR status so I'll be dang I better get good news as far as nodes! lol There I go trying to control things I have NO control over. God is in control. That's what we try to do when we feel a little helpless, we try and control what happens but in this case I just have to face that I can't control it. I CAN control how I react to it though even though it's really hard sometimes.
It's just weird how some people can have a 5+cm tumor and no node invovlement and some can have a 2.0 cm tumor and have node invovlement. My tumor had not reached my chest wall and from what I understand it was just in the breast tissue. I'm not sure what that means as far as traveling through to the lymph nodes.
Anyway, you women have helped me so much and my favorite saying is "IT IS WHAT IT IS" and I'll do whatever I have to do but I would like a little good news along the way. Maybe I'm looking at that wrong. Maybe God is giving me good news but I'm just too stubborn or wrapped up in something else to realize it.
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Posted By: trip2
Date Posted: Jun 06 2009 at 12:09pm
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Hello Tabatha and welcome to our forum.
Please feel free to ask anything and we will do our best to help.
Research best you can so that you can make a list of questions to take to your meeting next week.
Researching, asking questions, empowers us to feel like we participate more in our treatments instead of just being told what to do.
I would also suggest you get copies of all your scans, any tests, path reports and make a file for you to use at home.
Make copies of anything online that you feel might have a bearing on your situation and take it with you when you go.
Up near the right top of your page you will see a link called Resources. If you click on that you will get a drop down box, click on Taking Charge of your care and you will find some very helpful info you might like to read before next week also.
Good luck and let us know what they have in mind. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Jun 06 2009 at 4:32pm
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Hi there Tabatha, Sorry I missed your first post. Of course you do not want the nodes to be involved, but as you say, "it is what it is" at times, and then you just have to gather all the info you can and make your decisions as to treatments based on that information. If you are like Lori and the millions of other women when first dx, it is difficult to even function for weeks. Lori seems to think that she was the only one who could not decipher all the info thrown at her, but I know from reading the posts from almost 2 years now, that she is not alone. What does help at this time Tabatha, is to have someone with you at all your appointments, so that they can take notes, or just take a recording device with you and that way you can refer back to what the doctors say. Lori's hubby was her "cancer secretary", and still is. He's one of those people who has a photographic memory, and he's just "super smart also". Let us know what the doctor says on Wednesday, and keep posting and asking questions, and these amazing women and men will reply. I will now send you a private message with my email so that I can send you directions for accessing all the resources here on the site. Hugs, Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
I am Nancy and it is my daughter Lori who was dx with TNBC in June 2007. You know, we hear that all the time as to being dx with TNBC, and sweetie it is better to be HER2- that HER2+. At least from all that I keep reading. Posted By: travelintootsie
Date Posted: Jun 13 2009 at 3:14am
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just saw your post, I hope your surgery went well. there is hope for TNBC. but don't get dicouraged.Keep it positive.! ------------- stage2b gr3 6/14+nodes tnbc DX 1999 |
Posted By: Tabatha00
Date Posted: Jun 13 2009 at 3:19am
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I had a CT scan, bone scan, mammo's and an ultrasound of my axilla nodes and everything turned out CLEAR!!!!!! I am so thankful!!!!! I will be having chemo treatments first (total of 9) and then double mastectomy with reconstruction. At this point it doesn't look like I'll have to have radiation.
Thank you for all the support and information!!!!!
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Posted By: SagePatientAdvocates
Date Posted: Jun 13 2009 at 3:45am
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Dear Tabatha,
what wonderful news that your tests were clear...thanks for sharing wishing you the best, Steve ------------- 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 |
Posted By: Luv2sing
Date Posted: Jun 13 2009 at 4:31am
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Great News! ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: vdq7015
Date Posted: Jun 13 2009 at 6:17am
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whenever I get scared about my tnbc I am going to read your post. Thank you Thank You!!! ------------- tnbc 0.5cm mass. 3+ lymph nodes. 4 rounds a/c, 4 rounds taxatere. left mastectomy11/2003. tram flap 6/2006 |
Posted By: Tabatha00
Date Posted: Jun 13 2009 at 6:42am
| Sounds like you are doing GREAT!!!!! Looks like 5 years cancer free? I'm going to read YOUR posts when I get scared! I just started this journey! lol |
Posted By: luvingwhatis
Date Posted: Jun 13 2009 at 2:13pm
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Hi Tabatha00 and all!
I am 47 and was just diagnosed with TNBC of the medullar kind. Falls in the 3-5% category of breast cancers.
I am going to MD Anderson Cancer Center in Houston. As I understand, there are pro's and con's to TNBC. I like to focus on the pro's mainly to keep a positive attitude. I update my family often with the info I get from my surgical and medical oncologists there.
Triple negative cancer cells respond best to chemotherapy since the cells quickly divide and are aggressive and that is what chemo targets. That is why they do chemo before surgery as well because TN tumors respond very well to chemo. Triple negative cancer tends to relapse within the first 3 years due to its aggressive nature, and every year after that the risk continues to decline of any relapse. Hormone sensitive cancer risks do not decline with time. One would always wonder in 20 years if it will return, and if one can make the 3 year mark, can most likely be labeled as “cured”.
I know we will all make the 3 year mark!!!!
Sending love and many prayers.
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Posted By: Tabatha00
Date Posted: Jun 13 2009 at 3:38pm
| Wow now that's some great news I love to hear!!!!! Do you live in TX or just go to MD Anderson for treatments? If you have any other positive news to pass along as far as TNBC PLEASE let me know because I'm new to this ballgame! |
Posted By: HappyGoLucky
Date Posted: Jun 13 2009 at 3:52pm
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I have read that too and you know Tabatha you got what it takes to make it. It all sounds very encouraging and I prefer to not worry till its time to worry.
ps i am also on an anti depressant which has helped for the last 10 years.
LOve,
Karen
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Posted By: luvingwhatis
Date Posted: Jun 13 2009 at 3:58pm
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I'm lucky to have been born and raised in Houston! I haven't met a local person yet that is going to MDA...most are from across the state, USA, and the world. I will pass along anything I can at this point love. I'm new to this as well. Was diagnosed on 3/12, got into MDA on 4/6, had surgery on 4/23 - had fairly severe surgery complications with a hematoma, and just started chemo on 6/10. Will do chemo for 6 months and radiation for 6 weeks and my tumor was .7mm.
Bought my wig, am ready to video my head shaving (with mohawk 1st) in the next week and will have it on Youtube. We must be positive in this fight. Be strong, think positive, TNBC can be 'cured' and we are all blessed by this kind of experience.
I'm new to this ballgame too and we are going to throw a 'no hitter' GRIN!!!
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Posted By: Tabatha00
Date Posted: Jun 13 2009 at 4:07pm
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Did you have a mastectomy? After I have 9 rounds of chemo I'm going to have a double mastectomy with reconstruction. It's great to be able to talk to you because you can pass your knowledge on to me since I'm just now getting my show on the road. lol |
Posted By: luvingwhatis
Date Posted: Jun 13 2009 at 4:14pm
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I had a lumpectomy since my tumor was fairly small, yet, I had rare complications after surgery and I'm still doing ok. I don't have a lot of knowledge because I only had the cancer in one breast and chose to keep it and do radiation. We are friends now due to circumstances, so ask and I will help as much as I can, or ask others when I'm around the clinic. I've met soooo many incredible people and their own stories - it makes my eyes tear.
This is a lesson in listening to your soul, heart, and mind. Don't let the fears run wild - reach out and you will have many many friends that will help as I've already seen on this thread.
((((hugs))))
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Posted By: luvingwhatis
Date Posted: Jun 13 2009 at 4:15pm
| Forgot to mention that I'm know in chemo - 1 down, 15 to go |
Posted By: Tabatha00
Date Posted: Jun 13 2009 at 4:23pm
| I'll be starting chemo in about 3 weeks...........don't have an exact date but I know the first 3 will be adriamycin (sp), then 3 of a different kind and then 3 of a different kind. My tumor was 2.2 cm and after chemo, double mastectomy and reconstruction I can hopefully put this behind me. Just taking it one step at a time though! It is what it is right? |
Posted By: sueellen
Date Posted: Jun 13 2009 at 5:53pm
| I am from the Beaumont area. Went to MD Anderson too. Diagnosed September 2007. 1.5 cm node negative, grade 3. Had lumpectomy and 4 FEC and 12 taxol. Love my doc from MD Anderson. I know you all will be doing great before you know it and stay NED. Keep the faith!! |
Posted By: NINASUZIE
Date Posted: Jun 14 2009 at 7:33pm
To all the new gals and the great sisters who answered back...wow! such greeat positive energy. I just know you newly dx gals are so on top of things and are doing such good things to have this turn out great! Wishing you the very very best in your treatment outcomes and stay aboard for anything at all...and to the great sisters who've walked this walk, you are amazing and thanks....hugs allllllll around ------------- Suzie ************** Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11 |