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kykim 
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Joined: Dec 31 2013 Status: Offline Points: 27 |
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 Topic: Diagnosed in NovemberPosted: Dec 31 2013 at 3:03pm |
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Hi, I am new to all of this so please be patient with me. I have read everything I can to educate myself about TNBC and realize there is not a lot of material out there. This site has been the best for getting great information & I really appreciate it!
Here is what has been on my mind....as I read about TNBC, my understanding is that chemotherapy is almost a must? That is is the one thing/best chance at beating this? I am diagnosed with stage 1. Negative nodes (Dr took 4 nods), although one node had a single group of atypical cytokeratin positive cells it did not meet criteria for micrometastisis. The invasive cancer was .6 cm. I have had a lumpectomy and my margins were clear. My Ki-67 was 71%. The first time I saw the oncologist was the first I had heard of triple negative and at that time I had not had my nodes biopsied . He sounded like it was good to be triple negative? I had no clue what triple negative was other than my hormone receptors were negative. I had done no research or read anything about it. The oncologist talked like all I would need is the lumpectomy and radiation? Not sure if he was being cautious till my node biopsy was done? Or if it is because my cancer grade is 2. Most all the cancer grades for triple negative that I have read about are grade 3. I have not gone for a 2nd opinion yet. I had been waiting for the biopsy on my nodes (which I had done Dec 19th 2013) & to have another appointment with him (appointment is next week) to see what he will suggest for treatment. Any information will be greatly appreciated. Kim |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Dec 31 2013 at 3:47pm |
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Hi Kim,
I believe the NCCN Guidelines for chemo is anything greater than 5mm (or 0.5 cm). You are correct, most of us are grade 3 TN, but you'll also find some grade 2 ladies. With your's being .6 cm you should fall in the guidelines for chemo, although some may argue you don't need it. In my personal opinion you only get one chance to hit this beast head on so get another opinion (or two) and make your best decision. Can you get another opinion from an NCCN facility or someone knowledgeable in the latest treatment for TNBC? Wishing you the best. Please keep us posted on what you decide. Donna
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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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kykim
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Posted: Dec 31 2013 at 7:25pm |
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Hi Donna!
Thank you for the advice, I really appreciate it! I did look at the web site you listed & read the guidelines you were talking about. Didn't know if grade of cancer made a difference. There is a NCCN facility about 3 hrs from me. My surgeon has offered to make appoints for me if I choose to go for 2nd opinion. I think my insurance will pay. I am anxious to see the oncologist and see what he has to say next week. I do not want chemotherapy but at this point I am more afraid not to have it than I am of actually having it because of what I have read about triple negative and how aggressive it is known to be. Thank you again for your help. KIM |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Dec 31 2013 at 8:10pm |
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Dear Kim,
Donna gave you excellent advice.
I think it is great that your surgeon is willing to make an appt. for you but would be a help if you told us the name of the NCCN facility near your house and we might be familiar with a Breast Medical Oncologist there who is familiar with TNBC. Consultations are normally not that expensive, unless scans extensive tests are done...even if you are not covered for second opinion you should be able to get an idea of cost from the facility. I think it is money well spent but then again I am not spending the money..  seriously, you should get a TNBC expert in your life..most surgeons are not. Good luck to you. warmly, Steve Edited by steve - Dec 31 2013 at 8:11pm |
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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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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Dec 31 2013 at 10:32pm |
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Hello Kim,
I'm so happy you found us because this is the best triple negative Support Group you can find. We UNDERSTAND....
This may sound stupid but Triple Negative does not 'comprehend' words like criteria. Other types of cancer fall more into the 'meets the criteria' arena. Please gather all the information you need to and then hit the triple negative with a very large stick. It can be a sneaky and ruthless foe.
I'm not trying to scare you but please listen to the experts and take the treatment. Since triple negative travels throug the lymph and vascular systems, please be mindful of any node that shows up less than perfect. Chemo, at the present time, is our best friend in the fight.
I'm carrying on as if you were Stage III or IV. You are stage I, grade 2 and you chances of total recovery are Great. Please keep us posted about your journey and let all of us encourage you through it.
Love and God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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Kellyless
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Joined: Jun 18 2009 Location: Dallas, Texas Status: Offline Points: 1154 |
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Posted: Jan 02 2014 at 6:31pm |
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Any doctor that led you to believe TNBC "is a good thing", is not to be trusted, and perhaps avoided altogether. The appointment at a NCCN facility with a TNBC specialist for a second opinion could be the thing that saves your life. It was what saved mine I am sure.
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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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kykim
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Posted: Jan 02 2014 at 7:06pm |
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Thank you for all the information and advice.
Steve, if I have my information correct, U of Alabama at Birmingham Comprehensive Care Center is the closest NCNN. Lillie, my report said Lymphatic/Vascular Invasion: present and focal? It was under DCIS I have no idea if it is also for invasive or not? If I can remember I am going to ask the oncologist on Monday how many patients he has treated with TNBC. Just when I think I have a small understanding of my pathology report and what it all means I continue to find out..... I so don't! Thank you again for all the information and advice, it is very appreciated! KIM |
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overwhelmed
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Posted: Jan 02 2014 at 7:55pm |
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Kim,
I have to agree with the advice of the others and encourage you to get a second opinion. It sounds to me as if you may have a vascular invasion. A non- tnbc friend of mine did, and she ended up having chemo even though her tumor was small and her nodes were clear. That invasion increased her chance of recurrence. I am not completely sure that your path report does say you have a lvi, but that is something to ask your onc. One thing I didn't realize is once you go down a treatment path, that is the path you will likely stay on. I participated in a trial that sounded promising, but the trial drug isn't even being used much anymore. It sounded good at the beginning, but had I gotten a second opinion at a different facility, I might have gone down a different treatment path. I try not to think too much about that because I can't undo those early decisions. Thankfully, I am doing well nearly four years out. So, it could be I got just the right treatment for my particular cancer. Still, I would want to go with the most current tnbc treatment, which is more likely understood by an onc with tnbc knowledge. Good luck with your decision. It's not easy, so you will want the best most current information available to you. Lori Edited by overwhelmed - Jan 02 2014 at 7:57pm |
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DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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kykim
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Posted: Jan 05 2014 at 3:34pm |
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Tomorrow I go back to see oncologist. Will let you know what I find out. Because of all your encouragement (which I appreciate) I am going to go for a 2nd opinion. I have seen on this site where people have posted the names of doctors who are very familiar with TNBC and I saw the name of a doctor in Birmingham. I don't think this doctor is at a NCCN facility but I figure he must be knowledgeable about TNBC since it was posted on this site. I am going to call or have my surgeon call for an appointment. Maybe the doctor can get me an appointment faster than I could? Will also check with insurance and ask if they will cover a 2nd opinion.
I really hope the oncologist I see tomorrow was just being a little cautious about the info he gave me last time I was there and will have more to tell us. Be in touch, KIM |
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SagePatientAdvocates
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Posted: Jan 05 2014 at 4:07pm |
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Dear Kim,
There is a NCCN center in Birmingham. It is the UAB Comprehensive Cancer Center. good luck to you.. warmly, Steve |
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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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kykim
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Posted: Jan 05 2014 at 4:45pm |
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Hey Steve,
Just looked up the doctor and he is NCCN! KIM |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 05 2014 at 4:53pm |
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Kim,
There are several women who go to Dr. Forero at UAB. Please let us know how your appointment goes. ALABAMA
Andreas Forero, MD Cancer Center University of Alabama Birmingham, Alabama http://www1.uabhealth.org/UAB_PF/physician_10084_AndresForero_Torres |
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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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SagePatientAdvocates
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Posted: Jan 05 2014 at 4:53pm |
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Dear Kim,
that is an excellent start. Please don't be shy about asking the oncologist "how familiar are you with TNBC. have you treated many patients with TNBC?" I did that recently with an oncologist, privately, and was glad I asked as the reply was "no, my expertise is with HR+ disease. I would suggest you see Dr. XYZ for TNBC." best of luck to you.. warmly, Steve
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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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Dana
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Posted: Jan 05 2014 at 5:22pm |
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I was diagnosed in May 2010 with Stage 2 TNBC, had a lumpectomy and lymph dissection (no node involvement initially), since then it has returned to the same breast 2 other times both times had lumpectomy and lymphectomy (lymph involvement with the third surgery in 2012). December 2, 2013 I collapsed and they found a metastasis of the TNBC in the brain, it was removed and I had 3 tx of radiation. I am considered NED, but they are recommending Chemo. Has anyone out there had brain metastasis and is 5 years out after Chemo treatment. If so, which Oncologist did you work with and what Chemo agents did they use? Thanks, Dana
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Lillie
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Posted: Jan 05 2014 at 5:42pm |
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Dear Dana,
It sounds as though you have been through a lot in the past few years. I am reading your post to say that, so far, you have had no chemotherapy or radiation. Is this your choice or was it the medical advice you were given.
Please straighten me out if I am reading wrong. Usually chemo and radiation would be given with a first diagnoses of Stage 2 and a lumpectomy.
I cannot recommend a Dr. but I wish you the best of luck. There are others on this forum that can answer your questions better than I.
God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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Dana
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Posted: Jan 05 2014 at 5:50pm |
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Hi Lilly,
Thanks for your response. I had low dose Chemo and high dose VitC IV's but they didn't work for me. I would love to find someone that is still doing OK after 5 years with a brain Metastasis and find out what they did. I wish you all the best too! Dana
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MLindaG
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Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Jan 06 2014 at 8:01pm |
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Dana, When you say "low dose" Chemo.....what product did you receive? I have no info on the brain mets.....I am only 1 year out from chemo.....Wishing you the best.
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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kykim
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Posted: Jan 06 2014 at 8:30pm |
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So back from seeing the oncologist. I don't know if I am misunderstanding but I feel as though his info and mine are not adding up....even though I know he's the doctor.
My understanding is that he thinks I have a 10% chance of the cancer coming back. Chemotherapy, if I choose, will add 5% so that the chance would be 5% recurrence. He says because of the size (0.6 cm), negative nodes (a single group of atypical cytokeratin positive cells found in 1 node but does not meet criteria for micrometastisis) & the info he has he doesn't think I need chemotherapy. (Grade 2, Ki-67 was 71%) He said stage 1 TNBC is treated the same as another stage 1 breast cancer. I did ask how many TNBC he has treated and he said if you had 100 breast cancer patients about 20% would be TN. Hmmmmmmmm. He is going to order the oncotype test to see what that will say about a recurrence. I will need radiation but no chemotherapy. I have contacted my primary care physician about a referral for a 2nd opinion. My surgeon's nurse is getting me an appointment, we hope, with Dr. Forero at UAB. I just hope it doesn't take 4-6 weeks for an appointment. I have an appoint set up for next Wednesday to speak with radiologist doctor. Not sure what I think about the information I received today... praying that the appointment with Dr. Forero will be soon. God Bless, KIM |
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Lillie
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Posted: Jan 06 2014 at 8:45pm |
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Dear Kim,
      I am 'confused', 'sad', 'questioning', 'sick', 'angry, and restraining myself from bad language. Any oncologist, worth his salt, does not lump TNBC in the same basket with all other breast cancers.Good luck Kim with your second opinion. I wish I could think you totally do not need chemo, but in my heart of hearts I believe you do. He makes it sound as though you have an ingrown toenail.
Love and God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 06 2014 at 9:51pm |
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Kim,
I hope you can get in quickly to see Dr. Forero. A 2nd opinion will help answer your questions and feel better about your decision. Please check out this link. The bottom line - not all stages are equal. TNBC Stage 1 may not be the same as other Stage 1 bc's. Donna
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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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