diagnosed with stage 1, grade 3, triple negative bc ( out of the blue!! )last month. i am going to turn 35 in a few days.

size of lump after ultrasound/mri was 1.2 cm, nodes clear.

2 lines of treatment suggested:

1> chemo first, 4 dd fec, 4 taxol

     then surgery

    then  checking for pcr

2> since lump small and localised, get surgery done first

      then chemo, 4 dd fec, 4 taxol

      radiation

opted for the second one, since most doctors were suggesting that.( lump was 1.2 cm, margins clear, sentinal nodes and other lymph nodes clear)

can you shed some more light on these 2 different line of treatments and benefits of one over another. which one is more commonly followed and why.

thanks!

some doctors say, for triple negative, whatever stage be it, 4 dose dense fec followed by 4 three weekly taxol and then radiation is the standard norm worldwide. and some say, that it should be TAC, three weekly intervals, 6 times.

 

After surgery and the final path report came out, my tumor ended being multi focal 2.5cm at about 1.2 and 1.3 a piece, growing side by side.  When I had my biopsy and ultrasound they told me it was 6mm, and they sucked out half during the biopsy.

 

The MRI I had prior to surgery showed the 2nd spot; however, since I decided on simple mastectomy they did not investigate it further.

 

I had 4 cycles of AC DD, and 12 weekly taxol as the standard on the national clinical trial.

 

thanks for the reponse!!!

yes, it will be 4 DD AC followed by 4 DD taxol.

i clarified my query regarding AC and FEC. It seems FEC and AC are the same and cause same side effects. So you can take either-or.

And when the lump is small, its again either-or, when it comes to taking chemo first-then surgery/ lumpectomy first-then chemo. The former helps to predict your recurrence or not etc better, looking at how your tumor responded. But it also allows the tumor to grow, just in case it didnt respond well to the first and second chemo rounds.

Really looking forward to targeted therapies in the future. We end up killing all the healthy multiplying cells from head to toe, in the process of finishing off a few cancer cells... But cant help.

One last question.. for all the ladies who had adjuvant chemo, when did you start your chemo, as in how many weeks post surgery?

I do not believe that FEC and AC are the same.

Here is a chart from Komen regarding different chemotherapy drugs. MD Anderson Cancer Center (MDACC) is one institution that seems to prefer FEC/T to AC/T. It is my understanding that the C (Cytoxan) in each regimen is the same but MDACC prefers to use Addrucil and Ellence than Adriamycin.

Good luck with your treatment.

warmly,

Steve

http://ww5.komen.org/BreastCancer/TheChemotherapyDrugs.html" rel="nofollow - http://ww5.komen.org/BreastCancer/TheChemotherapyDrugs.html

I had a lumpectomy, followed by a re-excision 2 weeks later to achieve a greater margin.  I had adjuvant chemotherapy beginning 4 weeks after the second surgery, which was what my oncologist preferred.  Wish you the best!

Charlene

I had Taxotere and Cytoxan, which some consider "light."  I finished in Aug. 2010.  My life is back to normal at this point.  I did not get a second opinion at the time.  From what I have learned since, the chemo choice was probably influenced by my stage, size of tumor, grade and my age.

Charlene

Have begun dose dense paclitaxel. Coping with fatigue and throbbing pain now. And then radiations will follow.

Am midway but feel as if I have been in this mess since ages.

My tumor was pretty strange.

The core biopsy said triple negative -pure.

But after lumpectomy the pathology report says, Its 85 percent triple negative with 15 percent hormone positive cells too. At the same time it showed medullary features. So they named it Atypical Medullary carcinoma. At the same time its also Invasive in nature. And it was a moving lump, which made doctors initially think that its not malignant but benign. A doctor pointed out that my Ki-67 was 40 percent, which means very aggresive but in the Pet Scan the Max-Suv was only 2.0, which means not that aggressive.  BrCa1 comes negative and Brca2 has a mutation of unknown significance ( no known family history though apart from a very distant relative getting ovarian cancer at young age) 

I have this feeling that it is genetic, since i got a TnBC at 35. If not brca1, if not brca2, then may be some other gene which they have not found yet. Or maybe my brca2 mutation  does have some significance. 

I wonder what will happen from June onwards, when my treatment will be over, and I live with a fear of getting it back and worse, to live with a fear of metastasis.

I am happy to have an online forum like this to discuss and vent out my fears on and off. All your replies have been very valuable.

Good wishes.

BanR, age 35

stage1, IDC, 0/3 nodes, No LVI, Clear margins, Grade 3, TNBC. 

I am sorry you are having a tough time with your treatment. My daughter, who was diagnosed at age 36, and many others here, also had a tough time. Fortunately she is now 9+ years out from her treatment and is NED (No Evidence of Disease). 

At some point you will be done with your chemo and should have a bit of a break before you start your radiation therapy. That might be a good time for you to review your diagnosis and treatment plan by getting a second opinion. 

Depending on where you live, I might be able to make some suggestions regarding that IF you would like to talk. I am a volunteer patient advocate and I am sending you my contact information. And I am not a medical professional and will not give you medical advice. 

Good luck to you..

warmly,

Steve

I am sorry you are having such a difficult time with treatments.  Also, sorry you are having so many inconclusive questions about your particular situation.

 

I am glad you were able to follow thru with the AC, although the last treatment was in an altered state.  Please keep fighting to get through the paclitaxel treatments.  It is difficult and painful, but in the final analysis it is in your favor.

 

As Steve said, you will get a break between the chemo and radiation.  This will give you some time to feel better for a while.

 

I saw a lady opt out of her last paclitaxel treatment last week because she was tired of being tired.  I hope her decision doesn't come back to haunt her. 

 

Stay in touch so that your hugh SUPPORT GROUP here can cheer you on.

 

Love and God Bless,

Lillie

Congrats on finishing the AC part of your chemo treatment.  Hope the taxol side effects are much more manageable for you.

You talked about your BRCA testing results - Brca2 has a mutation of unknown significance.  Are the genetic counselors recommending any risk reducing procedures?

and that was the right decision for me but curious as to what the protocols are for MD Anderson.

 

Best Wishes !!  Christina

 

 

What i want to know is  in a case, where the tumor doesnt respond to chemo drug combination1, then they switch over to chemo drug 2..doesnt this delay allow the tumor some extra time to move from one stage to another?  what if it doesnt respond completely to drug 2 also and patient ends up with incomplete PCR. if tumor doesnt respond well to chemo then does current medical science have any other therapy for tnbc? i dont think so. 

does surgery first, allow some survival benefit by itself?

p.s. Steve could you provide some insight too

I talked with my oncologist regarding my BRCA2 mutation of unknown significance.

I happened to read somewhere that Triple negative BC and Ovarian cancer has a link

He said he doesnt recommend ovary removal for me.

Your questions about the efficacy of MD Anderson's protocol are important and should be asked of your oncologist at MDACC.

It is my belief that whatever protocol they suggest for you does NOT have to be done at MDACC unless it includes a 'proprietary' clinical trial offered only at MDACC.

If you tell your MDACC oncologist that you would like to have the same protocol they are recommending but have it at your local oncologist I believe that should be feasible and MDACC and your local oncologist can work as a partnership regarding your treatment. The problem comes in when the local oncologist decides to ignore MDACC's recommendations, which I have seen happen.

Also, very recently, I have seen MDACC tell new patients that if they are not going to have treatment at MDACC there is a six month wait to see an oncologist. I personally am extremely disappointed with this policy and hope it is changed back to their original policy of seeing new patients, whether or not they are going to have treatment there. 

By making it more difficult for a patient to be seen, patients will go elsewhere and when it comes time for radiation therapy the patients will probably have their XRT locally when, in my opinion, they could benefit from MDACC's world class facility. This new policy is unfortunate in my opinion both for the patient and MDACC. 

Dear BanR,

I think you should ask your questions to your oncologist and if not satisfied with the response seek another opinion. There are other excellent Breast Medical Oncologists in Houston. One of them is 

Dr. Rimawi at Baylor. I have found him to be a thorough, very bright, caring physician.

https://www.bcm.edu/research/centers/breast/index.cfm?pmid=10752

Regarding ovarian cancer it is essential, in my view, that you speak to a knowledgeable Certified Genetic Counselor about whether they can get more information on your VUS to see if it is deleterious or not. Myriad Genetics has many of the reports on VUS's and they have not made it available. I am part of a volunteer effort to 'free the date.' 

http://sharingclinicalreports.org/" rel="nofollow - http://sharingclinicalreports.org/

Also, some gyn/oncologists I have spoken to recommend 'risk-reducing' gynecologic surgery if there is a profound family history of ovarian cancer, especially early-onset disease even if the woman tests BRCA- negative.

I am not recommending that any woman do anything medically. I am not a doctor. Just want to call to your attention that a profound family history of ovarian cancer is considered by many to be important. 

At MDACC, I would try to meet with Dr. Karen Lu

http://www.mdanderson.org/education-and-research/departments-programs-and-labs/programs-centers-institutes/clinical-cancer-genetics/index.html" rel="nofollow - http://www.mdanderson.org/education-and-research/departments-programs-and-labs/programs-centers-institutes/clinical-cancer-genetics/index.html

warmly,

Steve

p.s. for both of you, I may be in Houston with a patient on February 3 and I will be with a patient on February 20. would be happy to see both/either of you if you are around. You have my contact info; would be great to say hello in person.

 

I just got a second opinion from MD Anderson 3 days ago regarding my treatment. I already had a mastectomy on January 8th through Methodist. The chemo regime that MDA have recommended for me is as follows -

12 cycles of  Taxol weekly with Carboplatin every 3 weeks

Followed by 4 cycles of FAC every 3 weeks

I will probably be having radiation as well but not have not seen the Radiation oncologist yet at MDA.  The chemo cycle that Methodist was recommending was 4 cycles AC following by 4 cycles of Taxol (every three weeks). We decided to go with MDA as the carboplatin is showing to be effective for Triple Negative. Hope this helps with the current protocol that MDA is recommending. Take care.

Was diagnosed with Stage 2, 4cm and 1micromet/7  

Thanks for all the info Steve! Would be great to meet you but unfortunately I am not in US now. 

There is a query which popped up my mind.

I am Her +2 ( borderline) as per IHC after surgery. They did a FISH and it came back Her negative.

What does it mean? Does it mean few of my tumor cells were Her positive which will go untreated? My ACs are over and 2 of my taxols are over too, with 2 left. 

Is there anyone who knows if there is much difference in efficacy between the two protocols?

It's a bit of a worry too since we are starting 61 days after the lumpectomy and I see another post about a study showing that delay is a risk factor.

On the good side she had a full body PET plus CT scan and it was fine

Mostly hear about AC and Taxol regimen but at times I do hear of TC too for aged patients who cannot tolerate Anthracyclines. All the best for whatever regimen you choose. At the end of the day, there is no fixed protocol. Had that been the case the whole world would be following it. Every medical centre follows its own. But yes for TNBC, AC/FEC and Taxol most commonly used.

Stage 2 that means its more that 2cm yet no nodes are affected, thats nice!

 

I am so sorry you and your wife are having so much stress about starting treatment late.  I am just an ordinary person who is a TNBC survivor of 7 years.  My oncologists, almost without exception treats TNBC patients with ACT.   In most cases he uses the dose dense treatments.  He believes the anthracycline is a very important component in the treatment regime for triple negatives.  I volunteer at his clinic so I get to meet a lot of cancer patients.  The her-2 and hormone girls do get a bit different regimes. 

I'm not telling you what to do, but if she were my wife I would stress the ACT.   I feel very passionate about this.

 

God Bless,

Lillie

 

 

None of us know the magic answer as to which chemo regimes our specific tumor will respond to.  From my experience I had T/C in 2009.  I was Stage 1, no nodes, clear margins, all scans clear.  Apparently some cells must have escaped the original tumor and went to another regional node (not the sentinel nodes that were clear) as 13 months after treatment I was dx with a recurrence to an internal mammary node.  This time I did Carboplatin/Gemzar/Iniparib and achieved remission.  What I don't know and probably will never know is if I had A/C, T the first time, would I have had a recurrence?  Maybe my tumor wasn't responsive to taxanes?  I also have a TNBC friend who was dx about the same time as me with Stage 2a that got T/C and has not recurred.  It's all a crap shoot.  I personally like the idea of adding Carboplatin to Taxol, then A/C and maybe we'll see that more in the future?  They are still trying to figure out TNBC and what's best for us.  Lillie gave you some great advice.  We only get one chance to attack this beast the first time.  TNBC is aggressive and in my opinion you throw everything at it and hope it doesn't come back.  Wishing you both the best as your wife makes her decision.  

Donna

Got a little worried after reading that you had such a good prognosis, stage 1, clear margins, nodes clear ..yet..it came back :(

the good part it, it didnot spread to any other organ and settled in another mammary node.

To think of it, my diagnosis is similar as yours. Stage 1, grade3, 1.4 cm, 0 nodes, ki 67- 40%. This is such a beast..

Did they mention anything about Lymphovascular Invasion in your pathology report. I was reading somewhere that although LVI doesnt affect the treatment plan but its a prognosis indicator.

also , tnbc is not a single disease rather a family of 6 to 7 kinds of tumors and unfortunately they have not been able to differentiate them clearly. Once they do that, then they will start thinking of  different kinds of treatments!

It's hard to read the crystal ball. She hasn't had BRCA testing but is over 65 and has no history of breast cancer in the family, though her brother had lung cancer. One other thing is the path report said it was IDC with medullary features and met all the requirements for medullary cancer except that it was not completely circumscribed. I don't know if that makes a difference.

Medullary cancer is a kind of TNBC and it has the best prognosis. Its very slow growing, maybe thats why it didn't reach the lymph nodes inspite of being stage 2a. If its pure medullary, then its a good sign!! Also tnbc is not that aggressive for women over 50, but is very harsh and aggressive for younger women.

But then did they write pure medullary in her report or something like atypical medullary carcinoma?

best wishes

Given your wife's medical condition and age I can understand all your onc's concerns.  I'm glad she's agreeing to do chemo.  Yes, medullary features have shown to have a better prognosis.  Keep us posted on how she's doing.  

BanR,

No, my pathology report showed no LVI.  I thought I had a great prognosis too with all 5 sentinel nodes being clear, upper outer tumor with great margins, etc.  When I was dx I didn't know anything about TNBC or that cells can escape through the blood stream or to other lymph nodes instead of just the sentinel nodes.  I had the false feeling that all tumors drained to the sentinel node first.  Most do, but not all as in my case.  Yes, I'm hoping we caught it before it went further.  Only time will tell.

Donna

Thanks.

My first onc liked to scan her TNBC patients once a year for the first 3 years.  It was a routine PET scan 13 months after finishing chemo.  No symptoms, I was feeling great, getting my life back together, working out at the gym with a trainer, all blood work normal, tumor markers normal, no lumps or pain, then the PET scan showed an area light up.  Hopefully we caught it early enough for the treatment to be effective.  Most oncs don't believe in routine scans or that it will make any difference in catching it early.  I'm just thankful mine did and pushed me to have the test.  

Donna

Even i m doing 4 dd ac and 4 dd taxol. Except for a hiccup, the 4th and last ac's dose had to be reduced by 10 percent and had to get delayed by 6 days, because my counts refused to come up even after the neulasta shot and i had to get injections again, which my onc says cannot be done repeatedly..hence the deviation. But he says since it was the last ac, hopefully it shouldnt affect the outcome... but who knows.

Couldnt post since sometime..i hope all of you are doing good! 

I hope I can cope with it and with a wonderful community like this, am sure I can always find support

Thanks to you all again!!