TNBC Stage 1
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Topic: TNBC Stage 1
Posted By: 123Donna
Subject: TNBC Stage 1
Date Posted: Aug 27 2009 at 6:07am
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I was diagnosed in June with TNBC, Stage 1. I chosed to have a bilateral mastectomy with reconstruction. The tumor was 1.4 cm with clear margins and no node involvement (0/5). I'm halfway through my chemo and would be interested in hearing from others that are also Stage 1 to see how their treatment, outcome, etc. is going.
------------- 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 |
Replies:
Posted By: SagePatientAdvocates
Date Posted: Aug 27 2009 at 10:35am
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Dear Donna,
my daughter was dx with TNBC and had a quadrantectomy in August 2004. She then found out that she has the BRCA1 mutation...she then decided to have a prophylactic bi-lateral mastectomy after undergoing 4 months of AC+TAXOL. her tumor was 1.6 cm, 75% invasive but no nodes as per SNB.. It is now 5 years since her surgery and she is NED. good luck to you and welcome to TNBCF. all the best, Steve p.s. I also tested BRCA1+...my daughter inherited the mutation from me. have you been advised to have genetic counseling/testing? ------------- 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: 123Donna
Date Posted: Aug 27 2009 at 10:47am
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Steve: Thanks for the information. I'm having the BRCA test before my next chemo treatment. What's strange is that I didn't fit into any of the risk factors that are known for breast cancer. It doesn't run in my family, etc. The only thing I was always worried about was that the doctors told me I had dense breast or fibrocystic so that always made me wonder about bc. I started getting mammograms at age 32 because my doctor thought it was important. One of my best friends also was diagnosed with Stage 0 TNBC last year. She had a bilateral mastectomy but did not receive any adjuvent treatment because of the stage 0. It's strange that both of us were TNBC. When I found out I was negative I thought that was good, until I met with the onc and she said the exact opposite, that it was the worst. Yuck! I'm new to this site and find the postings very helpful. It's given me lots of questions to ask my onc on the next visit. I'm currently on a TC (Taxotere and Cytoxin) chemo every 3 weeks for 4 treatments. I don't really understand the differences in the chemo drugs and why some are given different types. I guess its whatever the onc thinks will work best. 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 |
Posted By: ChrissieD
Date Posted: Aug 27 2009 at 10:55am
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Hi Donna,
I had BC last October, stage 1, 1.5cm tumor, no node involvement. I initially had a lumpectomy and then decided to have a bi-lateral with reconstruction after my treatments were done. I had my exchange surgery 9 weeks ago and will have my nipples done at the end of September.
I am feeling great, my hair is coming back in and I am looking forward to putting the past year behind me. I do have some lingering nueropathy now and again and was put into menopause from the treatments and am just trying to figure out how that all impacts my life (and my husbands :-)). All in all though I feel thankful to God to have been stage 1 and to be cured from this disease. I am looking forward to enjoying my life.
Great that you are 1/2 way to done with your treatments. That is great!! Hang in there. Hoping all has not been too difficult for you.
All the best to you,
Chrissie ------------- 39 from MA, Mom(8.5 and 6), Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
Posted By: 123Donna
Date Posted: Aug 27 2009 at 11:10am
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Chrissie: Thanks for replying. I've had myself worried sick about the prognosis for TNBC. It's good to hear from others that have gone through the treatment. Did your doctor talk about a PET scan? My onc said I'll get one after the treatment, then periodically to check for recurrence. The side effects from the chemo haven't been too bad. I had more the first treatment and they were milder after the second treatment. My only complaint is the neuropathy but its tolerable. I think the Neulasta shot was worse than the chemo, but I know its important and I'll have to have it after each treatment. 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 |
Posted By: Sunris
Date Posted: Aug 27 2009 at 1:58pm
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Hi 123Donna,
I will say that I go to M.D. Anderson ( because I live 30 miles from there) and that their standard of care typically seems to be Taxol x 12 , then FAC / FEC x 4.... My treatment plan was exactly that.... Taxol x 12, which ended up only being 9 due to neuropathy and the onc said she did not want to continue it in an attempt to prevent permanent damage. So we immediately proceeded to the FAC...While on the Taxol, I continued to work 45+ hrs a week. Yes, there were days I felt fatigued, but I also tried to keep the outlook of continued mobility / exercise etc. could help with that fatigue ? I never not one single time was nauseated nor did I ever vomit while on Taxol. We proceeded to FAC after the truncated regimen of Taxol. The FAC did make me nauseated, but never vomitted...not once. I did have to be off of work for at least 4 days after treatment ( Fri, Sat, Sun, Mon) due to feeling flat out yucky.....nauseated, fatigued, however I believe we all experience this feeling while on just about any type of chemo. It was very "do-able"........After 1 FAC treatment I had an ultrasound which showed very substantial shrinkage of my 3.9 cm tumor. It was now measuring 1.7cm, which made me know that the efficacy of the taxol was likely very good. I just had my surgery 2 days ago and will be awaiting my pathology report next week.. I wish you the best with your treatment, and am sending big hugzz.... -------------  Dawn Age 43 at DX DX 3-09 IDC 3.9cm TN-Stage2-Grade3 Taxolx9, FACx2, halted TX, Lump.8-25-09..rads x 8wks. |
Posted By: 123Donna
Date Posted: Aug 27 2009 at 2:21pm
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Dawn: Thanks for the information. I'm wishing you the best following your surgery and praying the your path report gives you good news. 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 |
Posted By: Dot L.
Date Posted: Aug 27 2009 at 2:57pm
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Hi Donna,
I was diagonosed also in June withTNBC. My treatment is T/C also
and I had my second treatment today. Got along fairly well except
for back pain from the neulasta. A second opinion from an Onc
seemed to confirm T/C is standard treatment for Stage 1. In fact,
my onc gave me the option not to have treatment. When I found
out from this web site how deadly this cancer can be I decided on
treatment. It does cut the risk of it returning.
Good luck to you.
Dot Lee
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Posted By: Autumn10182001
Date Posted: Aug 27 2009 at 3:08pm
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I apologize.. but what are the drugs represented here FAC / FEC x 4.... Please ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: 123Donna
Date Posted: Aug 27 2009 at 3:15pm
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Dot Lee, It's reassuring to find out we're on the same timeline with diag and treatment. It helps when you know others are going through the same thing as you are. I really like this website and found the TNBC very useful. I never heard about it until my diagnosis. I can't believe I'm saying this but looking forward to my 3rd treatment. Best wishes on your treatment. 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 |
Posted By: ChrissieD
Date Posted: Aug 27 2009 at 3:38pm
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Hi Donna,
My doc doesn't scan unless there are symptoms. I did have a bone scan in June because I developed pain on my tailbone just before my taxol treatments began (I did dose dense AC x 4 followed by Taxol x 4) and it had not resolved itself at my 3 month post chemo follow-up. He did order it right away. It was clear. Originally we talked about getting a MRI annually but since I went ahead with the bilateral I am not certain that would be of use.
Some docs do scans others do not unless symptomatic. Some days I am okay with no scans then other days I worry more. I am really trying to worry less and KNOW that I don't have any need for the scans. I can always find something to stress about - working on that too!
You sound like you are doing great! Good luck through your treatments.
Take Care,
Chrissie ------------- 39 from MA, Mom(8.5 and 6), Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
Posted By: spencer
Date Posted: Aug 27 2009 at 3:47pm
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Hi, I was diagnosed in Sept 08. Stage 1, 0 nodes Lumpectomy bilateral with reconstruction and full hyst. I am BRCA 1+. I had 4 treat. of A/C (adriamycin cytoxin) then 12 rounds of Taxol.I was very ill from the Ad/cy combo, thank goodness for the meds for nausea.The Taxol was a breeze compared to the other. I finished tx in May had the 2nd phase of recon. and doing well.All the scans have come back good.Getting ready soon for the tatooing.The neurapathy has went away.The neulasta shots did not bother me.Having hot flashes though. Good luck on the rest of your treat. ------------- Spencer 38 TNBC 1cm stage I grade II Dx Nov 08 BRCA 1 pos bil mast with reconst lymph node neg 4 treat A/C 12 Taxol tx done May 09 |
Posted By: HolliBeri
Date Posted: Aug 27 2009 at 5:04pm
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I have a very similar diagnosis and the same chemo as you. I did not do so well with the chemo. I was hospitalized within a few days after each treatment with neutropenic fever. But, I made it through. My last treatment was May 6th and I had double mastectomy on June 4th. Feeling pretty good now. Just seem to get tired easier than i used to. Hang in there - you will get through this!
You can read my blog if you want the nitty gritty: http://www.caringbridge.org/visit/hollisimpsongough
What Cancer CANNOT Do~ Author Unknown
Love & prayers~ Holli ------------- DX age 45:12/08 IDC & DCIS TNBC. 2/09:lumpectomy, 2 cm, grade 3, -nodes, stage IIa, BRCA- Chemo:Taxotere/Cytoxan x4.Double mastectomy 6/09. Zometa http://www.caringbridge.org/visit/hollisimpsongough |
Posted By: minniemouse
Date Posted: Aug 29 2009 at 2:27pm
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I am unusual (for TNBC) stage 1, grade 1. Also negative on both BRCA tests.
onc ordered 6 rnds taxotere/cytoxan, but after two treatments I started having pain taking deep breaths. Onc stopped it because of presumed rare lung reaction to tax and switched me to 2 treatments adriamycin/cytoxan. Man, the "Red Devil" adriam is evil!
The final round I had the worst nausea. No medicine worked. Couldn't even keep water down. Ugh.
But now I'm in radiation -- 2 1/2 weeks to go and so far no big deal. The hair is starting to show up. The eyebrows are back. Yay!
I'm like Chrissie, though. My onc said he may order a scan for me at end of year, but he doesn't usually unless I have symptoms. Makes sense to me most days -- I'd just as soon avoid the added radiation. But it makes me real nervous at times. How can I be sure, you know?
minnie ------------- dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg 2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads. |
Posted By: Donna Zukowski
Date Posted: Aug 30 2009 at 5:29am
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Hi Donna. I too am going to MD Anderson. I had 12 weekly Taxol and am so thankful I tolerated it ok; just flu side effects. Next I had FAC X 4. Nausea was a challenge and had my last dose Aug 6/09. Tried everything except emend and that was next but by this time I had only one dose of FAC to go so decided to just get through it. Surgery is booked for Sept 10. An U/S after the 2nd dose of FAC could not find the tumour. So possibly it was a combo of the Taxol and FAC. So I will have a lumpectomy and axilla node dissection as we know one node is affected. This was how I found the cancer as mamo a month before normal! I want to wish you all the best with your pathology this coming week as I know I will be anxiously awaiting mine soon. How is your recovery going post op?? I am wondering when I will be able to go back to work. I will also be doing 4-6 weeks of rads. Donna dx March 09/TNBC/1.7 cm/1 node for sure??/Taxol X 12/FAC X 4 |
Posted By: Donna Zukowski
Date Posted: Aug 30 2009 at 5:33am
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Actually it is Dawn, not Donna, who just had surgery at MD Anderson. Anyways the message is to everyone and anyone as we are all going through such similar journeys; just different stops along the way. Donna (stage 2a) |
Posted By: cg---
Date Posted: Aug 30 2009 at 7:28am
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Dear Donna Z. How wonderful that the tumor responded so well to the chemotherapy! The neoadjuvant chemotherapy is absolutely the standard of care that all triple negative breast cancer should have - especially since we do not have tamoxifen, and the others.
I am praying for a complete pathologic response!
Will you have your surgery there too?
You made the best decision of your life going to M.D. Anderson.
Love and best wishes,
Connie
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Posted By: Donna Zukowski
Date Posted: Aug 30 2009 at 8:29am
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Hi Connie. Thx so much for your reply. Yes I will have surgery at MD Anderson and will enter a clinical trial there testing the bone marrow while I am under anesthetic. This checks for "sleeping cancer cells" that may have lost their ki-67 and thus escape chemo. This happens in 30% of women; pretty close to what the reoccurrence rate is. Hence it is one more step in trying to figure out metasteses. If you are one of the 70% who do not have the cells it would be quite reassuring. Also if you are one of the 30% they recommend you be put on Zometa or a similar drug and I believe there will be clinical trials for women who are one of those 30% with sleeping cancer cells in their bone marrow. I was also told it is really good to be on any biophosphonate post treatment. At least it is something as research continues to try to figure this TNBC out. The week postop will be big for me as I wait for that pathology. I am sure so many on this blog site intimately know what I am talking about and have lived it already. Donna Z |
Posted By: Donna Zukowski
Date Posted: Aug 30 2009 at 8:33am
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Connie I believe you are on the clodronate?? Donna Z |
Posted By: cg---
Date Posted: Aug 30 2009 at 9:21am
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Yes, I am - I think you know who my oncologist is at Sunnybrook. She suggested it and anything else she wanted me to be on I would follow post chemotherapy because I know she is involved and follows all the TNBC studies, trials, new things on the horizon. I am just so thrilled for you and so proud of you for not accepting 'the status quo' and empowered yourself to get the care you needed and deserved.Clodronate (Clasteon) is very inexpensive at approximately $150 0 a month - I take 1600 mg a day - with absolutely no side effects.
There are some American women that pay $1,000 for a 3-month supply (always more expensive for them and drugs).
Whether you are a believer or not - I have remembered you in my prayers.
Love,
Connie
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Posted By: Donna Zukowski
Date Posted: Aug 30 2009 at 9:35am
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Connie The study I may possibly be a part of looks at zometa or clondronate (1600 mg per day) or ibandronate (50 mg per day). It is randomized which drug you get. I don't know if there is something else (other studies) other than biophosphonates for us TNBCs post treatment? Your onc was really on the ball; must have been watching the research. Yes I am a believer and thx so much for your prayers. Donna Z |
Posted By: cg---
Date Posted: Aug 30 2009 at 10:23am
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I am blessed and honored to have been taken on as a patient of Dr. Rebecca Dent from Sunnybrook (our Canadian equivalent to Dr. Lisa Carey). The woman is the complete package, highly intelligent, model good looks, delightful sense of humor, kind and compassionate.
She is just amazing and I am so fortunate. I travel far and I wait many hours - and she is worth every mile and every minute to be able to actually discuss triple negative breast cancer. I finally feel safe.
Denise (our dmwolf from the forum) is on the same trial that you may be entering - she is also taking the clodronate.
Donna, since you are right there - M.D. Anderson has studied turmeric before for breast cancer and I heard they may be doing some trials - please ask if there is currently anything in the works?
Love,
Connie
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Posted By: Donna Zukowski
Date Posted: Aug 30 2009 at 12:00pm
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I totally understand what you mean by "feeling safe". I will be transfering my care back to Canada after surgery. They are running the biophosphonate study in Canada as well. I will ask about the tumeric when I am down there for surgery. I am finding even this month off chemo while I wait for surgery I have worries about this TNBC growing. I know it will be what it will be but there is that vulnerability. Which will be there for a long time. Does it lessen with time? Donna Z |
Posted By: JuneLee
Date Posted: Aug 30 2009 at 5:17pm
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123Donna, Thanks for asking for other stage I experiences. I've read
the 3 pages posted so far and I think I'm the only one in which my
oncologist it was not necessary for me to have chemo or radiation even
though he knew I was TNBC. I had DCIS with two invasive components--
.2 and .7 cm.; had bilateral with no reconstruction. I do see the oncologist
regularly and had a PET at 3 years. I am now a little over 4 years with
NED. The more I read about TNBC, the more I think maybe I should have
had follow-up treatment. But, so far, so good. I am considered in good
health. JuneLee in NE FL
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Posted By: 123Donna
Date Posted: Sep 04 2009 at 6:29am
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Steve: I just wanted to let you know that I had the BRCA test done yesterday prior to my chemo. They're going to send it off to MYRIAD, but they warned me that my insurance company may not want to pay for it since I don't have any other family members with BC. I have one cousin only, but not with my mother, aunt, grandmas, etc. I guess it really depends on my insurance company and their policy to pay for this testing. I should know in a week or so if its covered. I'd like to know the results, but doubt that we could afford the entire cost out of pocket if the insurance company won't pay. 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 |
Posted By: SagePatientAdvocates
Date Posted: Sep 04 2009 at 8:40pm
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Hi Donna,
I understand about the insurance companies reluctance to pay... have you checked your dad's family history?..often the mutation can be 'hidden' there.. You might have your oncologist write a letter referencing the following study by Dr. Steve Narod's group that recommends BRCA testing for any early-onset (<50 years old) woman with TNBC, even absent a family history. BMC Cancer. 2009 Mar 19;9:86. Links The prevalence of BRCA1 mutations among young women with triple-negative breast cancer. Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, Desai D, Zandvakili I, Royer R, Li S, Narod SA. Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com BACKGROUND: Molecular screening for BRCA1 and BRCA2 mutations is now an established component of risk evaluation and management of familial breast cancer. Features of hereditary breast cancer include an early age-of-onset and over-representation of the 'triple-negative' phenotype (negative for estrogen-receptor, progesterone-receptor and HER2). The decision to offer genetic testing to a breast cancer patient is usually based on her family history, but in the absence of a family history of cancer, some women may qualify for testing based on the age-of-onset and/or the pathologic features of the breast cancer. METHODS: We studied 54 women who were diagnosed with high-grade, triple-negative invasive breast cancer at or before age 40. These women were selected for study because they had little or no family history of breast or ovarian cancer and they did not qualify for genetic testing using conventional family history criteria. BRCA1 screening was performed using a combination of fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication screening, the protein truncation test (PTT) and fluorescent multiplexed denaturing gradient gel electrophoresis (DGGE). All coding exons of BRCA1 were screened. The two large exons of BRCA2 were also screened using PTT. All mutations were confirmed with direct sequencing. RESULTS: Five deleterious BRCA1 mutations and one deleterious BRCA2 mutation were identified in the 54 patients with early-onset, triple-negative breast cancer (11%). CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer. ......... good luck to you and if you test I am sending prayers for a negative result 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: 123Donna
Date Posted: Sep 05 2009 at 5:28am
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Steve: Thanks, I'll share the letter with my onc if they refuse to cover the test. While there isn't any family history on my mom's side (she's 79), my aunt is 84 and my grandmother is 101. I do have a cousin on that side that had some type of early cancer when she was in her early 40's. All she told me was she had 9 radiation treatments and that was it. I should ask her what type of cancer she had. I'm also an only child. On my father's side, there isn't much history. My father had 2 brother's, but I'm the only grandchild. My grandmother on that side lived to 82, but my grandfather died when my dad was only 8 years old. I have no history from that line of the family. That may help with getting the test approved. I'll probably hear form Myriad later this week if they have questions about the insurance company paying for the test. Thanks for your help. 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 |
Posted By: unklezwifeonty
Date Posted: Sep 05 2009 at 10:26am
Autumn, I did not see any replies to your question and not sure if you figured this out yourself. AC is the same as the AC in the ACT, i.e. Adriamycin and Cytoxan. E is Epirubicin, another Anthracycline like Adriamycin. F is 5FU or Fluorouracil. Love, ------------- Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307). |
Autumn10182001 wrote: