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New member - diagnosed in Dec

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CharB22 View Drop Down
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    Posted: Feb 16 2012 at 9:20am

I was diagnosed on 12/1/11 with BC after a routine annual mammogram. After my lumpectomy and SNB on 12/9/11 it was determined that I have TNBC. I'm 47 with 2 boys (ages 11 and 14) and a wonderful DH. So this is devastating to my family.

I'm very lucky in that the tumor was small - 1.2 cm, no node involvement and no vascular involvement (not sure what that means except that it's really good). My surgeon is a wondeful older man, whose mother died from breast cancer, and he is a 4 year throat cancer survivor - so he gets it. My MO is also wonderful - she's head of the genetics cancer program at a large cancer center in Phila.
 
I got the BRCA test and am negative. I'm guess I'm one of the rarities of TNBC - I'm caucasian, of non-Jewish descent, and BRCA negative.
 
I'm currently undergoing DD 4 AC and 4 Taxol. I've got 3 AC under my belt. I've been lucky with SE's so far - just some manageable nausea and fatigue - and hand/foot syndrome. My WBC has been extremely low, even with the Neulasta shot - it drops to less than one. So I've pretty much quarantined myself to my home. Fortunately, I can work from home.
 
The thing I'm most concerned about is recurrance. Should I have just had the boobs removed??? I still have time to do it. I think my BS and MO would try to convince me to keep them, but I don't think I could go through a recurrance. But the thought of surgery is frightening - I hate needles, hospitals, etc. I was a healthy 47 year old with low cholesterol, low blood pressure, etc. The only thing I needed to do was drop about 30 lbs and increase my exercise from 2 times/week to 5 times. That's it!! I'm just so angry -- even now.
DX IDC TNBC 12/1/11; lumpectomy 12/9/11; 1.2cm, Stage 1, Grade 3, 0/2 nodes DD 4 AC & 4 Taxol, 7 weeks rads
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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: Feb 16 2012 at 9:33am
Charb22,

Glad you shared your story with us.  Yes, this disease makes us angry when we think we've done everything right and still get it.  I think there is some misconception about who gets TNBC.  You'll see members from every age group, every ethnicity, every religion.  If you are BRCA positive, you have a higher chance of being TN.  You'll see many of us on this forum tested negative for BRCA and have no history of breast cancer.  Sometimes this disease just sucks as there is no answer for why we got it. 

There are studies that say the chance of recurrence are the same with lumpectomy and mastectomy.  It's a personal decision, but having a mastectomy won't prevent a recurrence.  As you can see from my signature I had a recurrence.  With a mastectomy, your chances of a local recurrence decline because you no longer have breast tissue, but you still have a chance along the scar line and the small percentage of breast tissue left.  The bigger fear we have is distal recurrence.  Chemo is all we have to help prevent that.  

Please keep us posted on how you are doing.  You are now a part of our family and you'll find this is a great place to express your feelings because we get it.  

Donna


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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CharB22 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CharB22 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2012 at 9:37am
Thanks for the welcome, Donna. I guess I hadn't thought about a recurrance after a mastectomy. Wow.
DX IDC TNBC 12/1/11; lumpectomy 12/9/11; 1.2cm, Stage 1, Grade 3, 0/2 nodes DD 4 AC & 4 Taxol, 7 weeks rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2012 at 9:40am
Char,

Yes, my recurrence was to an internal mammary node.  Many women with TNBC do not recur.  It's just difficult to know who will and who won't have a recurrence.  

Donna
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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Charlene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2012 at 10:32am
Hi, Char,
Glad you posted.  It is really good that your tumor was small, lymph node negative, and no vascular invasion (evidence that the cells entered the bloodstream.)  When I finished treatment, I was frightened about having an immediate recurrence and I talked to my MO about going ahead with a mastectomy.  He convinced me that I would not be improving my long term prognosis.  My surgeon reminded me that it could still come back in the chest wall, even after mastectomy.  And, the most serious concern is a distant recurrence.  I don't mean this to sound like gloom and doom, because most people survive!  I think it's just that we have to learn to live with no guarantees.  Nobody else (even people without cancer) has any either.  I continue to have mammograms and ultrasounds every 6 months and a yearly MRI.  If I have a local recurrence, I know I will have to a mastectomy.  But, it might never come back.  Wishing you the best.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2012 at 3:22pm
Char,

Hi and welcome! I am 46 with 11 and 13 year old boys- very close!! You are right in that it is very devastating. I was diagnosed at the end of April last year. I think initially my kids were terrified and we (DH and I) were okay because we had the plan in place. That has slowly shifted to where now it seems like the kids don't worry about it but just roll with the next step. We have kept them informed of the steps along the way and they seem to be okay with it all. It is the adults who are now scared!

I too have no family history, tested negative, averge for height weight, pretty active, very good health etc, etc, etc and yet here I am. Donna said it, it sucks, plain and simple.

I did chemo first, before surgery. I cried on my last day of chemo because I felt like I was walking off a cliff. The last day of radiation was okay because I know I am entering a trial. BUT, I think it would be fair to say that I am pretty darn scared. Every ache in the vicinity, every tenderness, you get the idea, I worry. I know they say it lessens with time, I'm just not there yet! You will see and hear a wide variation of stories. I personally think it is all a crap shoot with no rhyme or reason we can understand at this point in medicine.

The statistics would say that a mx will not increase your chances, but certainly there are women that have opted for that for the peace of mind. You may become one of them, and that is totally your choice. You have to do what is right for you. The other thing to do is to look at lifestyle. My (new) oncologist stressed the diet and exercise piece to me. A recommended diet of 30 grams or less of fat, 3 hrs a week of exercise, and many of us have low Vitamin D that warrants checking. I would say that is all to be considered after you get yourself through chemo- right now just get yourself through it! Different doctors approach follow-up slightly differently, but do what you can and do your follow-ups. Beyond that, it is out of our hands!

I think I always appreciated the beauty in each day, but maybe more now. I have always had a fierce love for my family and I would say leaving my boys is the thought I hate most. I wouldn't say I am angry, per se. If anything, I would say I have less of a tolerance for some of the mundane crap people grouse about! Some of the extraneous has been boiled away for me and I am left with the condensed stuff that is much more important. Hope that doesn't sound too corny! At this point I just keep putting one foot in front of the other!

I hope you continue to do well with your treatments- you are nearly through the worst of it! The women (and men!) here are the best, so welcome to the family!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2012 at 8:31pm
Hello Char,
I was diagnosed at 54 with 3 teenagers at home and 3 older children who had moved out at that time. I went through a lot of emotional stages, and yes, I do remember anger being one of them. I recall being "mad" that I had none of the risk factors for this disease, yet there I was with the diagnosis and it seemed like it didn't matter that I had done many of the good things that were supposed to have been in my favor.
I got a lumpectomy and was told that the risks of recurrence were equivalent whether I chose that or the Mx. I chose the lumpectomy because it was less surgery and better recovery time. One of my downfalls is lack of patience, so a longer recovery was not something I would choose if I didn't have to.
One of my sons did end up exhibiting panic attack symptoms. After many physician consultations, we have determined that my CA experience in 2010 and his grandmother's death (my mother-in-law) from BC in early 2011 (not TNBC), caused him to funnel his anxiety into panic attacks. He was 15 when I was diagnosed and was 17 when the attacks started. This has made me angry too, because I will gladly take whatever pain and suffering I have to...but leave my children alone! <sigh>  
I wish you well as you complete your treatments. Thank you for sharing your story.
~Nancy~
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17
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CharB22 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CharB22 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 17 2012 at 9:37am
Thank you all for the wonderful welcome....tears came to my eyes reading your stories. I hate this stupid disease. I'm very lucky too in that I have a great support system. I married into a very large (and sometimes overbearing) Italian family! LOL....lots and lots of in-laws and cousins. But they're all helping out which is great. My elderly parents (late '70s) are also doing so much - cleaning and cooking meals- all of which has been a huge help.
 
We've been very honest with my boys - mom had a cancer in her boob (boy humor) and the doctor cut it out. Mom's gotta take nasty medicine that will make her hair fall out (my 11 year old thinks it's hilarious that I'm balder than Pop-Pop) and once I'm done this stuff, I'll be fine. (I hope.)
 
Nancy-I, too, am not a very patient person, but I'm definitely learning to be a lot more patient with people now....I often forgot that people were struggling with their own issues - I wasn't struggling with anything, so I thought people should just be like me - an Energizer Bunny - but now I'm learning to slow down a lot!!!
 
Deb - thank you. One of the things I know I need to do is drop about 30 lbs and exercise a lot more. I have a gym at work which I rarely took advantage of - not anymore! After this is over, I'll become a gym rat. I need to change my diet, too. I had gestational diabetes with my first and know that I need to decrease my sugar to keep that from coming back. I've been reading a lot about sugar and cancer. I'm also going to try to limit phthalates (my MO told me that one) and exposure to other chemicals and preservatives. I know I can't do it 100%, but I figure whatever exposure I can limit has to do some good, right?
 
I also want to get my Vitamin D level checked.
 
Thanks again everyone!
DX IDC TNBC 12/1/11; lumpectomy 12/9/11; 1.2cm, Stage 1, Grade 3, 0/2 nodes DD 4 AC & 4 Taxol, 7 weeks rads
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