Triple positive with no nodes, mastectomy what treatment ?

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trigeek
trigeek Member Posts: 916

Hi Gals,

I am posting for one of my friends, Here is what we know

Triple positive
Bilateral Mastectomy
No node involvement
2 tumors 1.5 cm and .9 cm
Clear margins
Age 45

If this was your prognosis what was your treatment plan ? They are waiting on FSH( to firm the result I guess and oncotype)

Thanks in advance !!

Comments

  • lisasayers
    lisasayers Member Posts: 850
    edited November 2008

    Wow, she sounds very similar to me and I'm actually waiting for my oncolgist's recommendation...since he said I'm "rare".  I had my bilateral on October 24 and we knew that I was ER/PR + then but the FISH was inconclusive from the biopsy.  So after surgery we found that I was also HER2+.  My tumor was only 6mm and my nodes are clear.  I'm 44.  Mine is IDC and was only in the left, but I had the bilateral because of strong family history (my 38 year old sister was diagnosed two weeks prior to me; maternal gradmother and paternal aunt). 

     Anyway, when I met with the oncologist he said he was thining 4 cycles of TC (three weeks apart).  But was unsure of the herceptin, as there are no studies for people like me...no nodes, small tumor, ER/PR+.  He was going to meet with other doctors and then I'm meeting with him next week. 

     I've been reading like crazy and there aren't a lot of studies for people like us.

    Please keep me posted on your friend....would love to find out what they tell her! 

    Feel free to PM me!

    Lisa

  • Mocity
    Mocity Member Posts: 451
    edited November 2008

    I am triple positive, had bi-lateral mastectomy for DCIS in left breast.  When pathology came back I had a small (.4cm) tumor of IDC but nodes clear.  I am now taking Taxol/Herceptin for 12 weeks and then Herceptin for remaining part of year.  I am 37 years old.  I am guessing because of her age and triple positive chemo and herceptin will be in order.

  • Jenniferz
    Jenniferz Member Posts: 541
    edited November 2008

    Two years ago, I was diagnosed with DCIS and IDC on the left side.  I had a mastectomy with clear nodes and margins. My tumors were 0.2mm, and 0.3mm, with the IDC 95% still contained in the duct.  My surgeon and onc both said that I was very early, and the onc. said that I didn't need anything other than an AI.   I am triple postive also.  When I asked about Herceptin, he told me that that was given only to stages III & IV. That was two years ago. Now it seems that Herceptin and chemo are given even to some of the very early breast tumors. I did ask another onc., and she said the same thing....basically that my treatment was aggressive enough. 

    I'm just hoping I didn't fall through the crack somewhere, and that these doctors are correct.  I will say that I am older than you, and that could have had some bearing.  Not sure.

    Jennifer

  • azsunn
    azsunn Member Posts: 201
    edited November 2008

    I'm 45, 44 at diagnosis.  IDC and DCIS in right breast 1.9 cm tumor.  Grade 3, ER/PR+ and HER2 + by FISH test, no node involvement. I did not do the Oncotype DX test as my Dr.'s both felt that chemo was not negotiable.

    I had Taxol and Carboplatin (six treatments at 3wk. intervals) and Herceptin concurrently.  I am getting the Herceptin weekly.  I also began Tamoxifen after I finished chemo.

    I hope all goes well for your friend. 

  • moonchild64
    moonchild64 Member Posts: 49
    edited November 2008

    I am 44, 43 at dx in May.  Other than having a lumpectomy rather than mastectomy, the details of my dx are similar.  Tumor was 1.6cm, clear margins, no nodes, triple +.  I had 4 TC(Cytoxan)H, and will be on Herceptin for one year,  33 rads, Tamoxifen for five years.  

    Because 40s are considered young for bc, I think the protocol now is to be as aggressive as possible right out of the gate to hopefully avoid recurrence.  I was in agreement. 

     Met a woman in radiation yesterday who was dx in 2004 and HER2+.  She went through chemo and radiation but she did not get Herceptin as it was in clinical trials for early stage.  She is now back due to recurrence to bones.   She is going to ask to be put on Herceptin.

    Tell your friend to stay strong!!!  We are here if you/she needs us!

  • SecretCancer
    SecretCancer Member Posts: 34
    edited November 2008

    I am also triple positive.  My tumor was small (.7 mm) and my nodes were clear.  I was diagnosed at age 42.  My oncologist is from the University of Pennsylvania and is very well known in the breast cancer world.  My treatment plan was 4 TC (taxotere, cytoxin) plus herceptin, and then herceptin only every three weeks for a total of one year.  According to my Doc....if you're HER2 positive, you're getting herceptin -- no matter how small your tumor is.  Keep in mind that the "personality" of the tumor is even more important than the size.  There are some people have huge tumors that are slow growers and pose no real threat.  There are other people like me with very small but very aggressive tumors (get this...Oncotype score 65!). Tumors like that need to be treated accordingly.  My guess is that your friend should be receiving 6 treaments ( of taxotere/carboplatin or taxotere/cytoxin) because the tumor sizes, and definitely herceptin for a year.

    Kim

  • Mocity
    Mocity Member Posts: 451
    edited November 2008

    Kim1965, I sent you a couple of PM's.... did you get them?

  • Caya
    Caya Member Posts: 971
    edited December 2008

    Wow - this diagnosis is almost identical to mine

    Triple positive, right Mast., no nodes,, 2 tumors - 1.7 cm. and 1.0 cm.,Clear margins, age 48 at dx. (Oct. 2006) I also had FISH to confirm the Her2+, as IHC was inconclusive. I had FEC x 3, then Taxotere x 3, followed by Herceptin every 3 weeks for a year.  I had my last Herceptin May 2008..  The FEC-T chemo regime is commonly used in Canada and other commonwealth countries.  I am now on Tamox. I told my onc. to hit me with the hardest treatment possible, and he agreed.  My onc. gave me a "well over 90% cure rate".

    No family history at all for me, but I did the genetic testing and am negative for BRCA1 & 2.

    Triple + are a small subset of BC.

    I wish your friend all the best.

  • mattscot
    mattscot Member Posts: 69
    edited November 2008

    Hi 

    I have similar issues on the inconsistent issues on HER2 testing as Lisa... did they do the oncontype on you?  they are now testing HER2 status.  My onco test came back with a HER- after the FISH was 2.3 positive..

    Anyway my doctor has offered Taxotere, Cytoxin + Herceptin every 3 weeks for 4 doses

  • LibraGirl
    LibraGirl Member Posts: 160
    edited November 2008

    Hi Trigeek

    Your friend is lucky to have you helping her along on this unwanted journey.  Best to both of you.

    I'm triple positive too (Er+90%, PR+80%, Her2+++).  I was Her2+ with both IHC and FISH (6.5 highly amplified).  I had lumpectomy, reexcision, 4AC (A = Andriamyacin or Doxyrubicin + C = Cytoxin or Cyclophosphomide), then Herceptin, which I will be on for a year.  I just had a bilat mastectomy due to my margins being clear of IDC, but not DCIS.  Decided to have prophylactic on other side due the fact mammograms failed to find the cancer likely due to breast density.  Left mastectomy had clear margins and right was completely clear, so no rads for me (Yay!).  I will be starting Tamoxifen in December.  

    I wanted to be as agressive as possible too, but wonder if I got the right chemo.  It seems the use of anthracyclines (Andriamyacin) is on the way out, due to the fact that other drugs now seem proven to give as good or better outcomes with less harmful side effects. At the time of diagnosis, I just accepted my oncs plan without doing the research (this was before I had really begun to come to this site) and only became more proactive once chemo was underway.  Thankfully my mugascans have been excellent so far.  I also wonder why I didn't get a taxene; I had assumed these were given more for stage 2 but I see that several of you had taxotare or a taxol. I am trying just to let this concern go, for it is water under the bridge now.My onc is head of the tumor board here, so I have to trust that it is a good plan and remind myself that I am doing everything I can to kick bc in the butt.

    Has anyone come across any research specific to triple+?  I would love the links to any info you have found.

    Postive vibes to you all.

  • nicole0714
    nicole0714 Member Posts: 48
    edited November 2008

    so is chemo aleays a must when you are triple positive?

  • nicole0714
    nicole0714 Member Posts: 48
    edited November 2008

    jennifer,

    did you have chemo??

  • trigeek
    trigeek Member Posts: 916
    edited December 2008

    Thanks soo much gals for sharing the wealth of info.

    My friend started her happy(NOT) hour cocktails today since she had the oncotype done and it came out unfavorable - 35.

    AC every other week

    12X taxol with herceptin.

     Then herceptin for 1 year.

    Guess the doc is hitting her with all guns I wanted to research to see whether she could swerve the cardio toxicity of the red devil but everything I read pointed that she would benefit from it.

     She has started her journey.. send her good luck vibes !

  • amask
    amask Member Posts: 6
    edited December 2008

    I had high grade DCIS with a tiny (3 cells!) of IDC found post mastectomy. I then went back for a lymph node dissection, and all 18 were clear.   I was 40, and considered cured- no nee cfor chemo.  Herceptin wasn't an option at the time.  One year ago at 50 I suddenly had a lump near my mastectomy site.  It turned out to be the same darn cancer, and worse still, a CT showed lung and bone mets "too numerous to count".  I am fortunate that a winter of chem brought me to a point of stable disease.  I have been on Herceptin only and an AI since May.  My advise is treat it agressively as soon as you know you have a HER2+ tumor, regardless of how "early" the detection.

  • Jenniferz
    Jenniferz Member Posts: 541
    edited December 2008

    NIcole,

    Sorry about the delay in answering, I just saw this post again.

    No, I didn't have chemo.  The first onc. that I had said that the se's were not worth the risk, and that it wasn't going to change the survival outcome that much.  My onc. that I am going to now has said the same thing. Then, she said that she probably wouldn' have done Femara. Told her I wasn't stopping. See how quickly things change? The biggest thing I see with you ladies is that I am post menopasal, and you are not.  I think age is factored in here in some way as well.  The younger you are, the more aggressive your treatments seem to be.  But that's my opinion.

    So no chemo, no Herceptin.  Hopefully "they" are right when it comes to me, and I will survive long enough to drive my children crazy!

    Happy Holidays to all of you!

    Jennifer

  • shelloz1
    shelloz1 Member Posts: 405
    edited December 2008

    Hi,

     I am also HER2+++, ER/PR Neg, grade 3, 1.6cm tumor on right side, no nodes and had a lumpectomy.  My course of treatment was 4 AC (every 3 weeks) followed by 6 Taxol, 36 rounds of radation  and 1 year of Herceptin (every 3 weeks).  I was 48 when I started treatment, and they gave me full guns because they said that my cancer was very aggressive.

  • trigeek
    trigeek Member Posts: 916
    edited December 2008

    Thanks everyone for all your input my friend has started her treatment 2 weeks ago. Oncotype score came 35 so chemo was a no brainer ( another diagnostic BAG-1 also was not favorable and warranted chemo)

    Her treatment:
    Every other week AC X 4
    Then every 3 weeks taxol and herceptin.X 4
    Then herceptin for 1 year.

    She is overseas so the protocol sounded a bit different than that in the US ( at least to me)

    Thanks again for sharing your experiences !

  • ToniSkane
    ToniSkane Member Posts: 6
    edited March 2010

    Hi... I havent had surgery yet. My surgery date is April 23, 2010. I opted for the mastectomy on my right side to minimize chances of it returning. I am triple positive as well. 2.1-2.3 CM mass right in the front of my right side. I had the MRI and it showed clean left and clean lymph nodes. I was told 8 rounds of chemo ( 4 months) and 1 year of herceptin and 5 years of tamoxifin after surgery. I opted for the mastectomy to also cut out the radiation. They told me its early and I just didnt get why I had to have chemo... thats the only part of all this that I am really struggling with. I have hair thats almost to my butt! :(

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