do all tnbc get chemo?

guitarGrl

do all tnbc get chemo?

twink

Hi guitarGrl,

Sorry you're joining us here.  I think you'll have to wait for the pathology report to say for certain what the best course of treatment is.  The tumor's small, so that's good. The pathology report will tell you other characteristics and considerations that should be factored into your decision regarding chemo... nodes, being one element, cancer grade is another as well as the extent of angiolymphatic invasion.  I assume that if it's a very early stage diagnosis with no nodes you may be able to pass on the chemo but I don't know for certain.  Good luck with your surgery.

CalGal

Hi guitarGirl -

My orig dx was in 9/04.  I had invasive on one side (2 cm) and DCIS on the other.  I was thrilled to have bi-lat lumpectomies instead of a mast ...  I was an "older" newlywed wanting kids ... so I let the SNB be the deciding factor re:  chemo ...  (figuring that my tumor was really borderline and for .2 cm wasn't sure that chemo was really needed).  My SNB was clear, so I did rad'tn instead.  At that time, I vividly recall that for tumors over 2 cm, chemo was rec'd ... It's been 4 yrs, so that rec'dtn has likely changed ... 

Although I did not take the genetic test until after my recurr & mets dx (of course I did chemo then), if you have any of the BRCA risk factors, you might want to consider meeting with a genetics counselor and taking the test if warranted .... Knowing what I know now about being BRCA positive & about trip neg tumors, I likely would have chosen different treatment ...  You might also want to consider a 2nd opinion ... 

Best to you,

CalGal 

guitarGrl

I've asked about getting the BRCA test - waiting to hear if my HMO will pay for it. My oncologist said that if it were positive, she'd say remove the ovaries too. Since I'm post-menopausal, it's not like I'm using them for anything.



It's not that I *want* chemo, it just seems that everyone in the tnbc group has had it. If I can wait three/four years to start all the better!



I guess that's been my concern. Since there seems to be a lot of mets with this kind of cancer, why do the chemo now if it's going to spread anyway? This sounds dumb after I type it, but it's not the kind of question you can't read about in the literature. And I've already read way more than is good for my mental health.



Hope you had your kids in the interim CalGal - good luck with the new round.

twink

It's not going to 'spread anyway'.  I strongly believe you need to hit it with the big guns at the outset.  Waiting for a recurrence and hedging your bets is not the way to go, in my opinion.

Hugs.

guitarGrl

Right - that's why I asked the question to begin with. There is so much to consider.

CaNatalie

GuitarGrl,

I don't think having tnbc means it is going to spread for sure. I do however think it is all the more reason to be extra aggressive in treatment and getting more than just one doctor's opinion. I am only four months out from diagnosis so I am still learning a lot. However, one of the things I have learned, is that no one wants to live with regret regarding their choices. In my humble opinion, I say kick this cancers butt with all available arsenals now! With that said, I acknowledge what a personal choice treatment options can be and know you will find all the support here with whatever decision you make.

Wishing you strength and encouragement during this hard time,

Natalie

LisaSDCA

Hi guitargirl,

Your oncologist is being perfectly straight with you - you "don't necessarily have to have chemo." No one is going to tie you down and stick an IV into you. It will ultimately be your decision. Your oncologist can only give you guidance. We here at bc.org can only give you our opinions based on our experiences and our knowledge and then support you in whatever decision you make.

Do you know the histologic grade of your tumor? This is sometimes called the Bloom-Richardson score and indicates, in general, the level of activity and aggressiveness of the malignancy. It is rated on a scale of 1-3, with many triple negs being 3's.

I had a loved one with a tiny, receptor negative, 6mm. tumor. All 14 lymph nodes were negative. She was not advised to have chemo, but had a lumpectomy and 5 weeks of rads just for 'insurance'. She was told to go home and live her life - live to be 88. Her cancer metastasized to her brain, her bone and her liver within nine months.

So, yes - sometimes these cancers spread. Sometimes women are Stage IV on diagnosis and are ER+PR+HER2+. I have a dear friend who is a 20+year receptor negative survivor. She had a mastectomy. That's it. Hers didn't metastasize - she was lucky. It's a crapshoot.

My goal is to keep myself free of this disease for as long as I possibly can. If that is for the length of a normal lifespan, well, AMEN! If my aggressive chemotherapy that currently has me NED (no evidence of disease) keeps me that way another 3 or 5 years, that's three to five years that clinical trials will be bringing in results on drugs that are only now being discovered and that may mean that Stage IV no lomger = terminal.

Like Natalie, I believe you have only one chance to hit it. I don't have the five years of Tamoxifen to continue suppressing it, no AI to let it know I'm keeping an eye on things. So I wanted to deliver a knockout punch and no more discussion!    Thus I chose chemo.  YMMV.

Lisa

guitarGrl

Actually Lisa - it's sort of the opposite of what you said - my oncologist is saying that I don't necessarily have to have the chemo & I was concerned. Of course no decisions will be made until after the surgery anyway. It's been such a long wait to get the surgery, it gives me too much time to think.



Is "sdca" San Diego?

LisaSDCA

It's always good to be thinking ahead, IMHO.

Yes, I am in San Diego. Where are you?

Lisa

guitarGrl

La Jolla

LisaSDCA

Cool!

I sent you a PM (private message)

Lisa

2curvy

Dear GuitarGrl:  I too am triple negative with a 1.2cc tumor.  Had mastectomy (didn't want radiation so chose that over lumpectomy) and then 4 rounds of chemo.  My onc said to consider chemo only because I was a grade 3, which is aggressive.  Anyway, the chemo I had wasn't bad at all and I sailed through it.  Its been six months since the last treatment and I'm doing well. 

The ONE thing I wish I had done differently was get a second opinion from an oncologist.  I had a second opinion from a breast surgeon, but that was really unnecessary.  Get a second opinion if possible!  Good luck and best wishes,

Colleen

guitarGrl

For those of you who have gotten a second opinion - how does that affect your relationship with your first oncologist? Especially if you are in an HMO & the doctors you can go to are limited?

twink

I'm not in an HMO, chose to go to PPO a few years back (phew).  Despite that, when I said I'd like another opinion, my first oncologist made all the arrangements for me.  He was very accommodating and appeared to be quite accustomed to the approach, to the point where I ended up seeing the second opinion oncologist (1 hour away) for another 4 chemo treatments and visiting the first oncologist's office (local) for the day after treatment Neulasta shot.  In such a life altering situation I think it's perfectly reasonable to want more than one opinion and most of these professionals are very aware of that.

t

slanderson

I agree with "hit it with all you have at the outset", because the problem with Trip Neg BC is that althought we know what is "NOT" driving it, we don't know what "IS" driving it.  and since we dont know what is driving it, chemo sounds  best option, much better than hoping for the best.

Shannon

ravdeb

I left my first onc when she refused to give me the chemo combo that 3 other oncologists recommended.

My opinion is that all triple negs need to have chemo. This is based on my readings and nothing else. A new study just came out that small tumors that many oncs said needed NO chemo, are in fact aggressive enough to spread without the chemo.

Because with triple negs we have nothing else besides chemo and rads to work with, I think all triple negs should get chemo.

And more than that..there are certain chemos they are finding to be working best on triple negs. One is the Taxane family...meet Taxotere Taxane and Taxol Taxane and the Platin Family...Carbo and Cisto.

  

IMO...hit it hard at the beginning and hope that you pass the first 3 years with no recurrence. Triple negs are known for recurring within the first 3 years and then the risk drops.

Another thing...having clear lymph nodes does not guarantee you will not get a recurrence, unfortunately...especially with triple negs.

Good luck and be well.

Sadie-Rose

I totally agree with Ravdeb's perspective on this.  I couldn't have said it better.

Sadie

suzy611

when i first saw my onc. after surg.and with my triple neg status he said he treats triple neg, as node positive.had 4ac & 4 taxol dose dense.the choice is yours.i was 1.5 cm. no nodes involved grade 3.hit triple neg. with all you can get .had mammosite rad. i finished 5/07.i can't tell you how glad i am that i chose this course,you will be to once the treatments are over.

guitarGrl

thanks guys - you've all pretty much confirmed what I've been thinking. One more week till surgery, and then I'll know for sure!

NarberthMom

I had exactly the same diagnosis (and experience) as Suzy. My onc (a bigwig) also treats triple neg as node positive and believes strongly it hitting it with the strongest chemo possible.

LaurieL

I agree with RavDeb and the other ladies as well.  My onc said no matter what, since your triple negative you don't have a choice whether or not to do chemo, you're doing it. 

Good luck with your decision!
~Laurie

sueps

Hello Everyone xxx

I found this thread to be extremely interesting, I am trip neg...and my onc here in the UK is giving me epirubicin and CMF....I know taxol is given to node positive...what I didnt know was that trip neg is treated as node positive...shall I ask my onc why he is not giving me taxol....OR is CMF similar....I am really worried now xxx

Laurita60091

Excellent summary, Ravdeb!  I really appreciate this being laid out simply and concisely.  I have been rummaging around this site because I have a certain unease with my tx (FEC with the C in this case being cytophosphamide, not carboplatin or cysplatin).  I am going to put some pressure on my onc to justify this treatment choice because my gut feeling is I'd be better off with an additional weapon in the arsenal. 

Thanks

Laura

ravdeb

I was diagnosed in 2005 and my insurance, at the time, would not cover Taxol for node negatives...they didn't care I was triple neg. I had letters written by two oncologists pleading to cover me for Taxol. They refused.

My dh then called the drug companies we were referred to by a wonderful bc nurse. The Medisone drug company was enraged that I was not to be covered and they personally donated the Taxol to me, delivering it to the hospital weekly (I did 12 weekly). I then learned later that I was the pioneer in starting Taxol for triple negs no matter what their node status was, at the hospital where the onc had refused to give me Taxol.This is because my surgeon was at that hospital and couldn't believe the tumor board had turned me down for Taxol so he made a ruckus over there.

We must be our own advocates!

suzy611

guitar grl,hope your surg went well and your back soon.

myrenewal

GuitarGrl - I am also triple negative.  I finished chemo a year ago.  The first oncologist I saw didn't immediately decide my protocol, he wanted to research and determine what would be best for me - this was prior to carboplatin getting all the good buzz it is getting now for triple negatives.  My second opinion oncologist was warm and fuzzy, and recommended just adriamycin, cytoxin and taxol - 8 infusions.  I wanted the warm and fuzzy oncologist.

We let the first oncologist know that we were going to have treatment with someone else.  The first oncologist felt so strongly about the protocol he developed for me that he called my husband to discuss it with him.  As my husband put it - I just wasn't ready to hear the statistics, etc., about triple negatives and the first oncologist shook me up, so I went fleeing to warm and fuzzy.  Long story short - I ended up with the first oncologist - had 4 dose dense adriamycin - cytoxin, and then 16 weekly infusions of Taxol with four Carboplatins added - one each month.  Total 20 infusions over six months. 

I don't regret for one moment my decision to have the more difficult protocol - as many of the other women stated, we wanted to hit it hard while I was at my healthiest. 

It also does prove that most oncologists are professionals, and they understand the desire and need to seek other opinions - in no way did my oncologist ever indicate any resentment over me originally deciding to go with someone else. 

sueps

Sue ... its is really good to read your experience, I have or am about to have my last epirubicin a/c .... and then my onc wants me to have CMF ...but I have been reading so much about trip neg being treated as node pos regardless ...and lots getting taxol.... I really need to tell or ask my onc about this before they start on the CMF ....I am in the uk I wonder if they will change my tx

Thanks for this thread.

xxx

guitarGrl

Suzy - the surgery went well - 0 nodes, and I was home in less than three hours after they started. A little sore - mostly where the SNB needle went in, and VERY swollen. Ice is my friend. I was also able to go out to lunch yesterday with the other San Diego area (+) women who post on this site. Good meeting people in person.



Sue - I'll be interested to see what my oncologist recommends. The whole second opinion this is built into the place where I'm having my treatment - they go out and get the second option for you from outside experts. From what LisaSDCA tells me the treatment of choice seems to be TC now - it's also what my oncologist said she'd recommend if I did need it.



Though I was so anxious about the surgery, I'm way more relaxed about waiting to see the oncologist on the 24th.



Susan

(what is it, all of us with this name get to be triple negative?)

myrenewal

Hi GuitarGrl - I have to  laugh - although I met you Sunday, I missed that your name was Susan!  I am glad you are continuing to do well.

When you refer to TC - is that Taxol/Carboplatin?

guitarGrl

ok - I'm not sure that's what TC means, but I think it does. The doctor said the words quite fast, and all I really remember was that one started with T and one with C ...



Yeah, I'm useless sometimes!