TNBC & No Chemo??? |
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azmermaid853 
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Joined: Sep 19 2010 Location: Phoenix, AZ Status: Offline Points: 8 |
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 Topic: TNBC & No Chemo???Posted: Sep 19 2010 at 1:02am |
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I had a lumpectomy, negative nodes, 5 days of brachytherapy, triple negative, no chemo in
April 2009.
I had a recurrence in the same location this year and had a double mastectomy in July to erradicate this disease from my body. Again my surgeon has not recommended chemo, I saw the oncologists Friday and she says if my receptors are still triple negative, they won't recommend chemo. I picked up my results and I'm still triple negative and am wondering what am I missing, besides the chemo that could have possibly saved my breast from a recurrance???
From what I'm reading chemo is an accepted form of treatment and I'm highly concerned that it hasn't been recommended for me either time. I'm going to get other opinions, it's not that I want chemo, but I surely don't want to continue going through this. What am I missing, I'm somewhat, no seriously, totally confused???
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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: Sep 19 2010 at 12:10pm |
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Hello and welcome,
Please get a second opinion, especially from an onc that specializes in TNBC. What was the size of your original tumor? Even with Stage 1, chemo is the adjuvant therapy since there are no other drugs available to us. With TNBC, we are at a higher chance of local and distal recurrence. It can travel through the lymph nodes or vascular system. Even with clear nodes, we don't know if any cells got out through our vascular (blood) system so chemo is almost always recommended. Have you had the opportunity to read the brochure about TNBC? http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdf Keep us posted, but please get a second opinion. 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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LRM216
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Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
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Posted: Sep 19 2010 at 12:13pm |
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Quite honestly, I am concerned as well. Are you seeing an oncologist that is familiar with triple negative and the handling of same. I personally do not know of any other triple neg (and I have reached out to many since my diagnose with this sneaky beast) that has not had chemo. My nodule was 1.2 cms - no nodes, no vascular, etc. and my oncologist strongly recommended not only the chemo, but the strongest I could go. It was a nightmare, but after 6 months, I survived and am thankful for having done it. Of course, with triple neg being so sneaky and loves to come back, there is no guarantee that I wont progress. But for triple negs - chemo is the ONLY guns we have to use to fight this. I also did 6 weeks of rads. I am so very sorry that you had a recurrence, and like I said above, had you had chemo, there is no real guarantee it wouldn't have happened anyway, but at least you would have thrown something at it to hopefully stop it in its tracks. I also find it hard to comprehend that even after a recurrence she is not suggesting chemo for sure! First line chemos - and now there are the parp trials for triple negs that appears to be helping so many that have recurred or progressed.
I know this is not what you wanted to hear, but I would definitely seek out a second opinion as soon as possible with an oncologist that specializes in triple neg cancer.
I wish you only the best,
Linda
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
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unklez
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Joined: Sep 05 2009 Location: New Jersey Status: Offline Points: 1000 |
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Posted: Sep 19 2010 at 12:15pm |
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Dear Mermaid,
I echo Donna and Linda suggestions to get a second and third opinion please. |
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Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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azmermaid853
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Posted: Sep 20 2010 at 9:53pm |
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I am floored. I just got the follow-up call from the oncologists and no she is not recommending chemo but wants me to keep my follow-up appointment, I asked why and informed her that I will be getting a second opinion Thanks for your recommendation on seeking an oncologists that specialized in tnbc, I will certainly seek that when looking for her replacement. I will keep looking until I find someone that has a clue, thanks to each of you. I hope you are all doing well.
Liz
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jenifer419
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Joined: Sep 18 2010 Location: Long Beach, CA Status: Offline Points: 44 |
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Posted: Sep 20 2010 at 11:08pm |
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Azmermaid,
I am completely new to TNBC...just diagnosed this month. Will meet with my surgeon for the first time this Thursday to go over my treatment plan. I haven't started chemo yet. I'm assuming I will begin next week. I found out that I had IDC on Sept 3rd. But that was all I was told and also that I needed to get an MRI which I did on the 13th. All I had to research was IDC. I read about ER+, PR+, and HER2+, but I, for some reason, thought that was bad. When I met with my surgeon on the 14th, I started reading the pathology report. I was excited to see that I was negative on all of these. Boy, did I have NO clue! Then my doctor briefly explained it to me...but, I'm not sure where my head was because I still didn't get it really. She told me I needed to have chemotherapy before surgery and to me chemo was the last thing I wanted....but, she stressed to me that because I was triple negative I really didn't have any other choices other than chemo. Even after leaving her office, I still didn't know the extent of TNBC. Over the weekend it crossed my mind and I decided to google it....that's when I found this site and wow....I get it now. Now, I just can't wait to start chemo...thought I would never say or feel that way. I'm so thankful for finding this site and have already learned so much. With that said, I'm glad you are getting a second opinion. Hopefully you will be starting chemo soon...maybe we'll be going through it together.  Take care, Jen |
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DX IDC TNBC 9/10 age 38, Stage IIb, Grade 3, 4.8 cm, 0/4 nodes, Taxol x12, AC x4 completed 2/28/11, I-SPY2 trial, bilateral mastectomy w/ recon 3/24/11, cPR 4/6/11
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123Donna
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Posted: Sep 20 2010 at 11:52pm |
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Jenifer,
I found the anticipation of everything (diagnosis, biopsy, mastectomy, chemo, reconstruction) was the worst part. Waiting was so hard and nerve racking. Once I had surgery and started treatment, I felt like I was actively doing something to fight this disease. I hated the thought of chemo, but once I realized it's the only option for TNBC, I welcomed it knowing I was doing everything possible. Good luck with your appointment. Are you bringing someone with you that can lend an extra pair of ears? It's so overwhelming to take it all in that it's good to write questions down and have someone with you that can remember what was said. 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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azmermaid853
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Posted: Sep 21 2010 at 1:08am |
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Jen, I'm sorry that you have now joined the club, but now that you are here I wish you the best of luck. What type of surgery are you going to have, lumpectomy, mastectomy? If you will be having a mastectomy let me know, I have a couple of tips I will share with you.
I thought I was just being paranoid the first time around, now I see that I wasn't paranoid enough and should have sought additional treatments the first time around. I'm glad to see that your surgeon seems to be treating you aggresively.
The good news is that it seems the research on TNBC is well underway, let keep our fingers crossed that they come up with a cure soon.
Wishing you a speedy recovery,
Liz
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SagePatientAdvocates
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Posted: Sep 21 2010 at 1:52am |
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Dear Liz,
one thought if it is tough for you to travel-Mayo Clinic.. http://www.mayoclinic.org/arizona/ it is imperative that you get some more input from OTHER oncologists!!!!! good luck to you, 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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outnumbered
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Posted: Sep 21 2010 at 7:03am |
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Not to be a fly in the ointment here, but... I did not have chemo. Not by choice I might add. My tumor was under 5mm (.5cm) so they said too small. That was a non-tn savy onc. I too was like Jen and really did not get the full ramifications of being TN until I found this site some 8 months later. By the time I got my second opinion, from the renowned Dr Winer, he still felt no chemo was needed. I did get the feeling that the time frame at this point did have a lot to do with it. Anyway, this haunts me and I really think it keeps me from REALLY getting on with my life. When people ask me (as someone did last evening) how I am, I say "the doctors say I am cancer free, but I am still guarded and I will not feel really in the clear for another 3 years, at my 5 year mark." I am an active, card carrying member of the false alarm club.
So please get another opinion from a truly tn savy oncologist. If you have DCIS, stage 0, then perhaps the sencond opinion will agree, but if it is invasive AT ALL, I would really question the recommendation of no chemo.
Best wishes and keep us posted.
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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123Donna
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Posted: Sep 21 2010 at 7:27am |
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Liz,
Can you tell us what size the tumor was in your first diagnosis and the recurrence? 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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tailormade
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Posted: Sep 21 2010 at 8:50am |
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If by chemo you mean hormonal therapy, then it would make sense that your oncologist is not recommending that treatment. Someone mentioned dcis here. If that is what you had, then it would make sense to treat with a mastectomy only. Some oncologists might give hormonal therapy after a mastectomy for dcis that is hormone positive. In any case, I think it is always good to get a second opinion. Good luck.
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Kristine
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Posted: Sep 21 2010 at 10:44am |
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I was diagnosed stage 1, 5 nodes removed and were clear and I received chemo. I would suggest a 2nd opinion right away as well as this can move quickly. The only thing that others have that I have not had was radiation and that was only because of the location of the tumor and the great margins they got when the tumor was removed - I had a mastectomy.
As a lot of us know, it is best to attack this disease with your guns fully loaded.
Good luck and I am sure your second opinion will be a better one!
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41 yrs at diag, Diag 10/09, Stage1, Grade 3, 0/5 nodes, Mast & reconst, TCx4 comp 02/10, BRCA-, http://kristine-livingmylife.blogspot.com/
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azmermaid853
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Posted: Sep 21 2010 at 11:46am |
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Sara and Steve, I'm in Phoenix and we have a Mayo Clinic in Scottsdale which I am calling today. I had some invasive both times, not sure if they just didn't get all of it the first time around or if it returned, but both times it had a micro portion that was invasive. I'm not going to take this lying down, and am ready for the fight. So today I will be making calls and finding myself a tn savvy doctor.
Thank you all for your input, this really helps to vent it out with people that understand what I'm going through.
Love all,
Liz
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azmermaid853
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Posted: Sep 21 2010 at 11:50am |
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Donna here is the dx from the path reports. Liz
1st: Extensive in situ ductal carcinoma high-grade with comedo necrosis and 1-2 mm isolated foci of invasive ductal carcinoma grand II/III with biopsy changes.
2nd: In situ ductal carcinoma high grade with comedo necrosis and focal grade III/III microinvasive ductal carcinoma with healing biplsy site.
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tailormade
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Posted: Sep 21 2010 at 12:35pm |
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I am not sure whether the treatment for dcis is different if there is a microinvasion, especially if you have a mastectomy. However, chemotherapy is not given for pure dcis even if it is triple negative. I am sure your oncologist would have recommended hormonal therapy (tamoxifen) if your bc was hormone receptive.
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outnumbered
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Posted: Sep 21 2010 at 1:04pm |
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Hey Liz, sounds like what I had...
1.6cm DCIS
Multi Foci IDC largest 2mm. I have yet to nail them down as to what "MULTI" means...2, 5, 10???? If the largest is 2mm, then you add in all the "multi", what does that get me????
Please let me know what Mayo says... I had a mastecomy 6 weeks after my dx and I am more than two years out without a recurrance if that helps any. All I have had was surgery. (many of them)
Hugs and keep us posted....
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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Judior
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Posted: Sep 21 2010 at 10:12pm |
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Sara, I would stilll get another opinion!! It sounds like you stay on pins ans needles and another opinon could help!! Judy Jenifer, I am so sorry you are having to go through this at your age. You look so young and beautiful in your photo. I can tell you are a fighter so you "will win this battle". You have had wonderful advice from Steve and others so all I can say is Dito. Take care, Judy |
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6 mth call bk, Masecetemy,5.3 tumor,6 pos nods,ace/taxotere,33d rad,stage3 mase to skin
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jenifer419
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Posted: Sep 21 2010 at 11:57pm |
Hi Donna, I agree...it's all been tough. I have ups and downs with everything, but like you, I just want to feel like I'm actively doing something. I REALLY hated the thought of chemo...mainly for the thought of losing my hair, but also because of the side affects. But, I'm over that now and couldn't care less. I already bought a wig! Not sure if I'll wear it, but it's there just in case and it even looks like my hairstyle and color. I have a friend that has gone to every appointment with me so far. She'll be there to take notes for me. I think this appointment will be a lot of info and my treatment plan...so, notes will be a must. I got my results back from the PET scan and they came out clear. I was really worried about that one being that my tumor is now measuring 5.1cm. It seems like it came out of no where....I guess that just shows how aggressive TNBC really is. How is everything going with you??? Jen |
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DX IDC TNBC 9/10 age 38, Stage IIb, Grade 3, 4.8 cm, 0/4 nodes, Taxol x12, AC x4 completed 2/28/11, I-SPY2 trial, bilateral mastectomy w/ recon 3/24/11, cPR 4/6/11
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jenifer419
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Posted: Sep 22 2010 at 12:05am |
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Liz,
Yeah, I'm sorry any of us have had to join this club. It's not fun. I wish you the best of luck in your journey as well. My doctor wants me to go through chemo first and then I've decided that I want a bilateral mastectomy (to be extra safe) w/ reconstructive surgery. When is your appointment for a second opinion? Let me know how it goes. Hopefully, you get the answers you're looking for and the best care possible. Jen |
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DX IDC TNBC 9/10 age 38, Stage IIb, Grade 3, 4.8 cm, 0/4 nodes, Taxol x12, AC x4 completed 2/28/11, I-SPY2 trial, bilateral mastectomy w/ recon 3/24/11, cPR 4/6/11
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Truly, I don't see any reason for keeping an appointment to follow-up with someone that doesn't seem to think as I do. Unfortunately, she is well respected in this community.
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