Newly diagnosed triple negative most current treatments.
I'm a 31year old mother of a 2 and a half year old baby girl and am happily married to a supportive husband. On April 26th 2012 I was diagnosed with TN IDC. I want to do everything I can to beat this! My oncologist is recomending surgery and then chemo, but I have been reading that it might be more beneficial to have the chemo before and after surgery (Neoadjuvant) for triple negative. I had brought this up in my initial first visit and he told me that was usually only done to shrink the tumor if it was very large, which mine is about 2 cm. He also doesn't seem to be worried about the rapid growth of it.
My cancer did not start as a lump. instead it was a pain in my chest, and while I was looking for the cause of the pain I noticed an indention of the bottom of my breast. My husband did a thorough breast exam and could not find any lumps. We had read on Google that it could still be a sign so I scheduled an appt. with my OBGYN. By the time I had that appt. about a week later my husband had found a small (pea sized) lump in the same breast but up toward my armpit. We actually had to point it out to the doctor doing the exam it was so small. She didn't seem concerned but scheduled the mammogram anyway. By the time I had my mammogram it had gotten even bigger and the indention had gone away. They suggested a biopsy due to the irregular shape. By the time the biopsy was done it was roughly the size of a jelly bean (by feeling the outside) and easy to find.
All this in about a month...After the biopsy It feels even bigger (about the size of a quarter) the oncologist didn't even feel it and just chalked it up to swelling from the biopsy done a week ago. Both the surgeon and the oncologist seem unphased by the rapid growth and have made comments that lead me to believe that they think that it has been there all along and I just hadn't noticed. Are they being too relaxed, or am I being too parranoid?
Comments
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You're not being paranoid. TN lumps seem to come out of nowhere. I found mine and had a mamo and aspiration biopsy the next day, and was told it was positive and 1.5 cm. A week later the MRI said it was 2 cm. The Dr. said that was just because the MRI is more exact than the mamo. Meanwhile, I could almost feel it growing, and it was hurting. They chalked it up to being sore from the aspiration. Two weeks later, I had a lumpectomy, and the path report said it was 2.2 cm, pushing me from 2A to 2B. I also had an affected node. I don't believe it was that size all along. I know it was growing.
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I too feel that TNBC does come out of nowhere and has rapid growth. Woke up one morning and felt it. Never did before! Mine went from 2.5cm in june to 4.5cm in august + 2 more lumps near it! Some doctors will want to do chemo first on TN because they can monitor if the chemo is working on the cancer. That's why my doctor wanted me to do chemo first because I had told him that I wanted a mastectomy anyways. Go with your gut feeling. If you think you should get a 2nd opinion, do so. I completely understand your worries and wanting to hit that BC with all you can. I have a little boy that was 4 when all this BC crap started. Hugs.
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While you await more member responses, you may want to check out the main breastcancer.org site which has a very informative section on Triple Negative Breast Cancer.We hope this helps.The Mods
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CJ - I too am triple negative. My Oncologist felt strongly about chemo PRIOR to surgery. The main reason was it gave him a good guage to see if the chemo regimine was working on my tumor. It gave him a chance to change chemo if my tumor wasn't shrinking. I ended up with a complete response to the chemo. The pathology report from my BMX (which was my choice) showed no residual cancer cells. My tumor was larger than yours though. And I know of others on this board that are TN and had surgery first. Maybe you should get a second opinion just so you can be comfortable with the proposed treatment plan. Don't be worried about hurting anyone's feelings. You are your own advocate.
Good luck to you and please don't hesitate to ask me any questions you may have along the way. You can do this . . . one day at a time!
Take care,
Kathy
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I had chemo first, and there are a few really good things about that.
First - you can really have time to decide what kind of surgery you wish to choose. No rush.
Second - you know whether the chemo is affecting the cancer. The goal is a complete pathological response. For me, it was a huge mental boost when, after just three weeks of treatment, there was measurable shrinkage.
Third - from what I understand, surgery first or second yields about the same long term prognosis... but I'm told that surgery second is just starting to show a better long term result. The hypothesis, as I understand it, is that the chemo is treating potential micromets asap rather than waiting several weeks after surgery.
Second opinions are GOOD.
I was in a clinical trial. They took a sample of the tumor, sent it for analysis, assigned me to a sub-class... and then an experimental drug was added to my chemo regimen by random assignment. The standard in the clinical trial is surgery second... and they did extra imaging (MRIs) in order to track the response of the tumor to the chemo. I was in http://ispy2.org/.... My end result was a complete pathological response.
I bring this up because it might be something you'd be interested in.
Good luck - this is the super hard time...
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Bikerlee - I think you meant you had chemo first, not surgery first as you said in your first sentence, right? Just want to make sure that CJalbinson doesn't get too confusted. Thanks in advance for your clarification.
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Through joyful tears and a concerned heart, THANK You for sharing as an African-American woman recently diagnosis with TNBC the news is depression and a bit dibilatating. I am blessed never the less being a veteran and having a PCP who insist on annual mamograms it was caught very early real small had a lumpectomy on the 23rd of April and have just been told by the surgeon that the lymph-node biospy was negative and so was the margin. I am now preparing to due chemo but have been instructed by my Oncologist that I must now have a cardiograph and a bone scan because of the TNBC it seems like a never ending birage against the psyche so again thanks for the info
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Yoyoma - Just take it one day at a time. If you have any chemo questions as you get ready, please don't hesitate to ask. I'm so glad it was caught early. Now just keep going and get rid of this for good!
Take care,
Kathy
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Thank you all for your replies and sharing your experiences. It sounds like I am on the right track with asking my doctor to consider doing chemo first. Does anyone remember what drugs they used for your treatments and what the cycle were like? Currently I am scheduled for 3 months of bi-weekly rounds of AC followed by Paclitaxel starting 3 weeks after surgery which would not be until the end of May or early June with my current surgeon. That seems like a very long time so I am looking for a surgeon that can get me in quicker if I don't get chemo first.
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I did 4 AC dose dense (every 2 weeks) and 12 weekly Taxol.
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Hi there,
Well, I am 65 and was diagnosed Feb 14,2012, Biopsy and the March 19 Mastectomy, now I started Chem on April 26,2012. I am TNIDC, I had rapid growth, between the two visits, My mammy was 2 cm, when they did the biopsy, my surgeon desided to take the whole growth. More tissue to test, better results. Yup, mastectomy and left breast is gone, 3 lymph nodes, negative, but the negative receptors.
So I was told no drugs to target receptors because i didnt have them. A waste, my HER2, 2+, which is just a tease amount, so that gave me a chance to get in a trail for the use of non-conventional drugs. I would be either 1a or 1b, it turned that i am in 1b, which means i give data but no drugs. But i get extra exames and updates.
Of course not the same as drugs, but I am willing to do anything to extend my life. The chemo is not as bad as i remember hearing it to be, the side affects a been tolerable.
I am going in for a blood count and test to see were I am at. May 3,
I hope you get the best which ever way you wish to go.
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Oh darn I forgot to say that when they did my mastectomy the lump was 4cm and I am 2B.and my surgeon said he got it all. Now I worry about the reoccurrance......keep smiling
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I am doing AC every 3 weeks and Taxol 12 weeks, the different?
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I did 4 AC treatements every other week and then 4 Taxol treatments every other week. I was done in 16 weeks.
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I am doing 4 dense dose A/C and 12 weekly Taxol (neoadjuvant)
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I did taxotere, adriamycin, and cytoxan every 3 weeks together for six cycles, neoadjuvant.
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I am a nine-year survivor of TN. I strongly urge you to have chemo first for all the reasons already given here. The chemo will stop the growth of cancer immediately and start to eliminate the cancer in your body. It is important that this is done ASAP. I was diagnosed on 3/17/03 and 9 days later had my first session of chemo. I had four AC and then four taxol. I had a lumpectomy and 22 nodes removed on 8/8/03 with one node microscopically positive. If you have surgery first you need a few weeks to recover from surgery before chemo is started and in my opinion with TN chemo should be done first and ASAP. Love and Hugs, JoAnn
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Joannnc - Glad to read your post. You give us all hope!
Thanks for making my day,
Kathy
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My new surgeon comfirmed what I had originaly thought and you all have helped reinforce. She said she wished we could have already had me on chemo, and it is definately growing quickly. Hopefully the new oncologist will agree as well, I see her this Tuesday, the surgeon is ready to go on Wednesday at the drop of a hat.
Thank you all again.
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Thanks Joann for the positive news. I agree with neoadjuvent tx. I joined a clinical trial and had Taxol, Cisplatin and exp drug for 12 wks, #11 tommorrow. I'll have surgery next month and then finish up with A/C and radiation. I'm still considering a BMX. I believe it's aggresseive so so should I be. So far the tumor can not be palpated so I'm hoping for a complete response, fingers crossed!! I too support the fact that chemo first is measurable rather than after surgery hoping it's doing what it should. No guarantees either way but some reassurance is hopeful.... Nance
PS has anyone been offfered/taken Epirubicin rarther than Adriamycin?????
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I had two cycles of my six cycles of TAC with epirubicin rather than adriamycin due to the shortage. Actually, the tumor shrank the most during the epirubicin cycles (based on just clinical exams, though, not scans.) I had residual disease after chemo, though - 2 positive nodes and 2 cm tumor - but the tumor softened considerably and we thought had shrunk to almost nothing. It was measured as 2.5 cm by mammogram and 2 cm by MRI prior to chemo.
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I was diagnosed in Feb 2012 with triple negative. Tumor under 2cm, but Grade 3 & one node positive. The aggressiveness has always scared me. At first, I wanted surgery RIGHT AWAY. But we chose a clinical trial at Emory in Atlanta with an oncologist whom we love and trust (she was the 2nd one we met with).
I've been on Sorafenib in pill form for 8 weeks (will continue throughout the 24-wks trial), have had 2 rounds of Cisplatin infusions (2 more to go), then will have 4 rounds of Taxol. Surgery in September.
It seemed important to us to know whether the chemo was working or not, for now and later, in case of recurrence. Our oncologist said from the get-go that we would change course if need be. I also liked the idea of treating my whole body right away, in case it spread faster than I could recover from surgery. Before Cisplatin I had a 2nd PET scan that showed decreased metabolic activity and size, just from the 4 wks on Sorafenib. This gave me courage.
CjNieto - I, too, have a great husband. And a 6 and 7-year-old. We are lucky - lots of support and great distractions. It really is an enormous curve ball, though - I wish you and others here the best of luck.
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I envy you your treatment, Nicole. We have a similar diagnosis. When first found, my tumor was 1.5 cm with 1 positive node, but by the time I had surgery one month later, after all the tests and scans, it had grown to 2.2 cm, still only 1 node. When I asked my oncologist how can we know if the chemo is working, since I already had surgery, she said, "if it doesn't come back, then it worked." Very Russian roulette, in my opinion. At the time, my head was spinning, and I just wanted THAT THING out of me.
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I was diagnosed 10/31/11 TNBC invasive lobular, 4 cm large tumor and lypmh node involvement. Did 4 rounds dose dense "red devil" and then weekly 12 Taxol. Oncologist was positive throughout as there was less and less to palpate. Surgery May 14, 2012 -- bilat mastectomy (R breast prophylactic - showed no cancer) left modified and 12 lymph nodes.
Surgical oncologist called yesterday w/ less than positive pathology report -- 10 of 12 lymph nodes still show cancer; tumor has shrunk to 2.6 cm but still shows cancer.
I meet w oncologist June 4 to find out if I will do radiation first and then more chemo, or if more chemo before radiation is in my future. Has anyone had similar experience? Did you do radiation first before addl. chemo???
Needless to say I'm sad chemo didn't wipe out all the cancer and pretty scared...
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Hi. I'm sorry you have to go through this. I see you live in Clermont; I live in Ocala. I went to Moffitt in Tampa and consider it the best decision regarding my diagnosis that I could've ever made. I was diagnosed last year at age 34 and I know how hard it is to go through Triple Negative at a young age. Like you, my tumor was fast growing. Incredibly fast. The original radiologist thought it was "probably benign" and told me to come back in 6 months. By the time I was able to get the lump removed 3 weeks later, it had almost doubled in size. Ten days before I discovered it, I had done a breast self exam and it was not palpable and by time I had surgery, I could visibly see it pressing against my skin when I looked in the mirror. Some forms of breast cancer grow so quickly that it's terrifying. My doctors said with the rate of growth, if I'd listened to the original radiologist and put it off for 6 months, I probably would've had to seek treatment for symptoms of metastatic breast cancer before the 6 months were up. I don't say that to scare you, but I'm now a big supporter of being your own advocate. At Moffitt, my doctors were concerned by the rapid growth. My Ki-67 was 76% and they were concerned about that combined with my young age and the Triple Negative status. I had 4 rounds of Cytoxan and Taxotere. I'm so glad you've got strong support in your husband; mine has been incredible, too and I know how lucky I am. I'm sorry you have to join us, but I'm glad you found us. Good luck to you!
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I wanted to add that if I'd been diagnosed without an excisional biopsy, I would've wanted to do neo-adjuvant chemo to see if the tumor was responding and to get started on systemic treatment ASAP. You're definitely doing the right thing by asking questions.
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Yes, it's a definite plus to see it the tumor is responding. I wish I could have had the chemo first but my needle biopsy came back non-diagnostic so I had to have an excisional biopsy. Just curious - for those that chose to have BMX, what factored into your decision? I am supposed to start radiation next month but am thinking I may be better off with a BMX. Thanks
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Cla,
I had less than a complete response to chemo also - I did more chemo after radiation in a clinical trial but they have now changed the protocol of the trial. Now you have to have the chemo first in the clinical trial (it is from Sarah Cannon center and uses Halaven, or eribulin). There are several clinical trials out there for this situation.
Hang in there, I know how scary it is. They told me I had a 50% chance of recurrence. I am now almost at the 1.5 year mark past diagnosis with no signs of recurrence. I just had a check up with the oncologist a couple weeks ago and they did tumor marker blood tests at that time.
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Hello,
Doctors have varying opinions.... My doctor advised on removing the tumor immediately before it had a chance to grow or spread, so I had a lumpectomy on May 17. Starting chemo on Tuesday, A/C every 2 weeks 4x plus a white cell booster the day following the treatment. Then Taxol weekly for 12 weeks followed by radiation for 32 days. Scared out of my mind, but as prepared as one can be. Wigs, caps, lip balm, smoothie fixings, etc.... We are so fortunate to have treatment, technologies and studies that our mothers didn't have, but it is still sooooo scary. Will be reaching out to those of you who can help guide me through this, and will be there to help my fellow sisters as I gain more knowledge. Glad to have places like this to connect with gals who get it.... -
Forgot to add that the worst part of the lumpectomy was the pain in my armpit from the node removal!!! Still have to shave veeeery carefully :-)
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