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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2018 at 10:59pm
Welcome Tishabe, so glad you found us. I've found amazing support here since 2009. I had a recurrence 2 years ago, I came here for help and support before I told anyone but my husband and BFF - it may have saved my life!
What I discovered is a recurrence 2+ years from treatment, if you don't have a genetic predisposition, is very very rare. The odds are it is not TNBC - seriously. But if it is, you can beat it again. What you're going thru is terrifying..I was sure it meant I was a goner. But I'm still here, 2 years out again with No Evidence Of Disease - so know that whatever the tests say you will be okay.
Please let us know what the results are, we're waiting with you now, sending you all the calm thoughts and survivor strength we have
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jmrascoe Quote  Post ReplyReply Direct Link To This Post Posted: Jul 02 2018 at 10:45pm
Hello All,
Desperately seeking a second opinion.  
Heart
Thanks so much for this site.  As all who will read this 
know, this is a tough pill to swallow.  But knowing all
 of us swallowed it and we are still here to hold the hand
of the next one, makes it just a little less harsh, going down.

I am Jennifer, diagnosed with Stage 1 TNBC in April, 2018.
I had lumpectomy on June 11, 2018.  .6 gm RT breast
No cancer in lymph node. (negataive for metastatic carcinoma
Nottingham score:  8 points
Surgical margins:  Negative.  Closest margin:  The invasive carcinoma
at least 1.2 cm from all margins

Chemo suggested for 4 rounds beginning July 16th, 2018.
Radiation for October.
Desperately seeking a second opinion.  Cannot find an
oncologist in Greater Hampton Roads area of Virginia.
I live in Suffolk, VA.  I am willing to travel further
if I have to.  I just need to do this before July 16th, 2018.
Scheduled to see Hampton Proton Therapy for consultation
tomorrow.  
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2018 at 12:08am
Jennifer,
Welcome to the club nobody would willingly join but you came to the greatest one 😘
I had my slides sent to MSKS, you can request yours sent to anyone but would suggest either MD Anderson or Sloan Kettering. My oncologist was on board with it, very easy to do. Sign release for them to send and there gone.
Most oncs have no issue with it. My oncologist and MSKS were on board and agreed on a plan.
We are here for any and everything.
Love & light,
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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jmrascoe View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jmrascoe Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2018 at 9:50pm
Thanks Natalie,
This is such a refreshing resource.
May I ask what the reason was for the mastectomy?
If you prefer not to share, I understand.  I am curious
because your numbers resemble mine alot.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gretta58 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2018 at 9:23am
Good morning, new to group. Guess I'm getting my feet wet. I got myself registered to this group, good start. Now to learn how to navigate. Thanks for having me. My name is Gretta and I have TNBC.
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2018 at 8:33pm
Welcome Gretta! So glad you found us but so sorry for the need. How are you and yours holding up so far? Have you chosen a treatment path yet?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JodiAnn Quote  Post ReplyReply Direct Link To This Post Posted: Jul 14 2018 at 12:29pm
Hello.  I am glad I found this but wish I saw it earlier.  I was diagnosed June 1,2018 after a long road of tests to see what was going on in my left breast.  The right breast was found with the cancer off an MRI (nothing was seen at all on mammo or ultrasound).  My left breast has since been ruled out and showing no areas of concern.  I traveled from Alabama to Houston to have surgery at MD Anderson Center on July 17.  According to my pathology report I have invasive carcinoma that is 1.3 cm along with DCIS that is 3.4 cm. My invasive carcinoma is stage 1, grade 3, triple negative with a ki67 score of 80% (very high). I have read, researched, talked with other women, and listened to my drs.  I have decided bilateral mastectomy with no reconstruction and then chemo.  After meeting with my breast surgeon at MDA she was mentioning lumpectomy since the tumor is small (1.3 cm) followed by radiation and chemo.  Now I feel torn again and confused as to whether i should go more invasive (mastectomy) or less invasive (lumpectomy).  Scared to death with all that I read about TNBC, recurrence, and recurrence with worse case scenarios. Thanks for letting me introduce and vent all in one.  I will read other's posts.  Bless you all. 
Jodi 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maree155 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 5:56am
Hi from New Zealand Smile I new to the group, and I am looking forward to meeting people. Just a quick question does anybody here have a Medullary Carcinoma? I am told it is quite rare but is normally a type that will be TNBC. Cheers Maree

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Post Options Post Options   Thanks (0) Thanks(0)   Quote bgbanks Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 10:24am
Hi Jodi...I was diagnosed March 2016 TNBC Invasive Ductal carcinoma of my right breast with tumor over 5 cm. I chose mastectomy after chemo with no reconstruction. It is truly a personal choice. I am glad I did because the pathology showed suspicious abnormally in my left breast as well. It will be 2 years in August since surgery and I have no regrets. Pray about it and let it be YOUR decision.

Belinda
56 year old; Dx: 3/4/2016 w/TNBC in right breast 5.3cm tumor; Stage 11B; Grade 3; 4AC treatments complete/ 4 Taxol complete; Bi-lateral mastectomy 8/31/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 9:39pm
Hello,
My name is Leah, and I was diagnosed with TNBC a week ago. To make this more interesting, I am also 11 weeks pregnant with my second child.
My tumor is huge, coming in at 10cm, but my onc Dr is still talking about a PCR. I have three enlarged nodes, one was biopsied and was positive, and the other two are assumed to be as well. I am stage 3B, and I anxiously await my neoadjuvant chemo starting when I am 13 weeks pregnant on August 8th.
Thank you so much already for all the information in these forums, I went into med onc knowing so much about treatment and was so happy to hear my Dr talking about trials and the newer drugs you guys have been mentioning.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2018 at 11:42pm
Hi, I saw Nashville on your bio-are you receiving treatment at Vanderbilt? I wondered because I know they get a lot of clinical trials early. Your post reads "Grace under fire" which is the perfect combination to fight all cancer. I just circled August 8th on my calendar so You will be in my thoughts and prayers all day.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2018 at 9:42pm
Hello! Thank you so much. I am actually working through St. Thomas Midtown in Nashville, but I believe but haven't verified they're using MD Anderson protocol. I am considering flying down to TX to get a second opinion and treatment plan due to the size of the tumor and my limitations because of pregnancy. Some days I'm certain we will win this, and some days I'm totally overwhelmed. Your kind words have made this evening better for me!
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 2:06am
Welcome Leah! I am so sorry you are dealing with this, especially pregnant! We've seen quite a few women come through here pregnant and in treatment, luckily there are chemos you can do, as well as surgery that should be safe while pregnant.
I had a recurrence after 7 years which is quite rare, so I went to MD Anderson for a second opinion.I cannot recommend it enough! It's an incredible place with amazing doctors. I'm a HUGE proponent of second opinions under any circumstances, but I think your situation is unusual and especially consequential, making a second opinion really really important. I would say 3b and only 11 weeks pregnant qualifies as a Special Circumstance emergency that your doctor should help you get into MD Anderson in as quick a fashion as possible. Once you've gotten in to see a doctor there you have them on your team. My local doctor worked with my MD Anderson doc thru treatment. I chose to go to Houston every few weeks for my scans during chemo and to see my doctor there, even tho I was receiving chemo and surgery here at home. it was this approach that got me to PcR before surgery. Return trips aren't mandatory tho, to utilise their help once you've seen a doctor. What chemo are you scheduled to start?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Leahstuffle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 12:41pm
Good morning, Kellyless!
I'm scheduled to start AC (not dose-dense) on August 8th. After four of those treatments that are three weeks apart, I expect to do a maintenance set of Taxol treatments for 7-8 weeks, deliver the baby, and go back for some more chemo that is TBD, but I believe they're talking about using carbo among other drugs and doing immunotherapy of some kind. I thankfully have family in Houston, which will make the MD Anderson trip a lot less stressful if I'm able to get in.
I'll start treatment regardless of MD Anderson appointments on the 8th because I don't believe I can afford to wait longer! I'm calling MD Anderson today, hopefully to be in touch with Dr. Jennifer Litton.

I'm so sorry you had a surprise recurrence, that must've been some next level emotionally difficult stuff!

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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 2:03pm
I know she's the best for your situation! Even if you have to start chemo before you see her it would be so worth it to still see her. My doc at MD Anderson is Vicente Valero, I love him. He's wicked smart,.really listens and is very thorough. His clinical interest is aggressive breast cancers and locally advanced BC. In case you need a second choice Dr, I highly recommend him!
There's few things in life that have impressed me as much as MD Anderson. My husband and I will be forever grateful for our experience there. I'm so glad you're working to get them on your team. Let us know what happens!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 2:27pm
Leah, I think you are 100% right in going to MD Anderson. I am supporting a friend with TNBC on this site but I had ovarian cancer in 2005. All of my doctors where I received treatment at UNC/Chapel Hill, NC and Baylor/Dallas all trained at MD Anderson. If you read the bios at all the great cancer hospitals (NCI) around our country ,  almost all those oncologists/surgeons trained there. I am so happy you have family in Houston and that you would not have that added stress of travel/lodging. I hope you can get in touch with a cancer navigator there, they can help with appointments for special circumstances- like your case. Check with Southwest airlines and ask if they still have a MD Anderson special fare in case you get worked in at the last minute for an appointment. Remember to breathe and get some fresh air in between all these phone calls. Thinking of you, Lori
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie109 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 8:59pm
I am new here and am still in shock. I had a mammogram on July 6 and learned that I have TNBC with largest tumor at 1.65 cm but multiple lymph nodes involved under my arm. I am having CT and bone scans this week and I am so scared of the results. Can anyone offer encouragement or advice and similar circumstances?? My stage is III C due to the lymph node involvement. I don't have symptoms anywhere else. Need encouragement.
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2018 at 10:06am
Welcome Debbie, I'm so sorry for your diagnosis. I was diagnosed in 2009, and I had lymph node involvement as well - I know what you are feeling. Before I started chemo I updated my will, got power of attorneys ready for my husband, cleaned out my household files and made notes on everything so that he could understand easily where everything was, made a list of all the household bills.... I packed away all of our Christmas stuff carefully, in case I wasn't the one that unpacked it the next year..... I preparing for my death at 45 years old and I was terrified. I found this place a week later, the wonderful folks here talked me off the ledge and helped me believe I was going to beat it. And so I did! And you can too. They've made advancements since then too, so there's even more options in your tool box for treatment, it's not a death sentence!
Everyone goes through the testing your about to have when they're diagnosed with cancer, to make sure it's not spread beyond what they've found in your breast and axilla. Be prepared for "things" to turn up that require further testing. You've lived in that body for a while,.and it leaves marks :) it's usually nothing, so don't panic! The first time I had a "thing" on my lung, back rib and ovary. Lung xray showed a scar from pneumonia many years ago, back xray showed a healed rib fracture i didn't know if had, probably from a 1985 car wreck, and ultrasound showed a very normal fluid filled cyst on my ovary. I had a recurrence in 2016 (extremely rare!!) This time it was my thyroid and nasal cavity that lit up - ultrasound and bloodwork showed normal thyroid inflammation, a very uncomfortable scope up my nose showed nothing going on up there. ALL of that is to show you that when they start telling you stuff showed up its probably nothing!!
Have you found another doctor to get a second opinion for treatment? Let us know if you need doctor recommendations, it's a step we all highly recommend. You might be a good candidate for an immunotherapy trial or something - both times second opinions changed my treatment plan. Your doctor should welcome the input of a second opinion so don't feel weird about it.
Just remember to stop and breathe! If you're anxiety is too much tell your doctor - medication for anxiety is common at this very stressful point in the cancer journey. And bring your fears back here and let us help. You're going to get thru this!
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie109 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2018 at 3:48pm
Kelly,
Your response was so comforting. Thank you for that. Just you saying it's not a death sentence was what I needed to hear. What was your treatment like in 2016? What is your screening like now? I am guessing you are now about my age, I just turned 55.
I am very alone in this journey so any friends I can gain will be very needed and appreciated. I am single with 3 grown children. My youngest goes away to college in a few weeks leaving me alone at home for the first time, not good timing. My older two live 4 hours and across the country from me respectively. I do have friends nearby that I can lean on, but they have husbands, careers and families as well.
I have already signed up for the immunotherapy trial. My Dr recommended it. I don't know how to go about getting a 2nd opinion. Where would I go. I live in Central NY state and my treating oncologist is in Binghamton. They are recommending chemo first. I have no idea what to expect as I have never been close to anyone going through this kind of treatment. Can you or others tell me what to expect. Will I be able to continue working? I work in a small very supportive but very busy office.
I am so very appreciative of this support since I have no clue where to turn. Thank you again Kelly. Debbie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2018 at 10:57pm
Hi Debbie, You are NOT alone! You are going to make new friendships with women( and men) that you will cherish in this turn in your life. I am supporting a friend who was diagnosed with TNBC in late June. I have my own cancer experience being diagnosed with ovarian (3c) in 2005 at the age of 44. Cancer is a crazy journey but I have laughed with my new friends as much as I have cried. The first few weeks are crazy and stressful, but as soon as you have your plan, you can take a breath. My friend had her first chemo today and she called me and she sounded "normal" for the first time in 30 days.
I have been doing lots of research for my friend because I am working on my masters at TWU. Surprise! I am becoming a medical librarian. All my research points to immunotherapy being the most cutting edge promise for TNBC. Recent medical journals are buzzing about results from recent trials. I am impressed that your Dr. already has you enrolled.
I am going to suggest applying for social security disability. I went on it as soon as I could and it worked out for me because I had a recurrence and then I entered 2 clinical trials. I am happy to hear that you have a supportive office and great neighbors. My apartment maintenance man saved me because he walked by my building several times a day and had a key to my apartment in case I needed a ride to the ER (blood transfusion) or a run for some crazy junk food craving, equal in importance to me.
Cancer is always harder on our families than for us, in my opinion. I think it might be a blessing that your youngest is off for college. Visits with that child will give you something to look forward to and will reduce stress for them seeing the day-to-day, ups and downs that you will encounter. I am 13 years ahead of you in this cancer journey, and I pray that you will be reaching out to a Newbie in 2031 on this website to offer hope. I will be chiming in right behind you!!!! Lori
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