Is Triple Negative a bad thing?

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pdaly
pdaly Member Posts: 28
Is Triple Negative a bad thing?

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  • pdaly
    pdaly Member Posts: 28
    edited January 2008

    My mom passed away from BC in August, she was HR positive. My sister was diagnosed in Oct, lumpectomy in Dec. Pathology report said she's triple negative. She is at stage 0 but had it in both breasts. Pathology also said it is aggressive.



    What type of treatments are out there for triple negative women?

  • twink
    twink Member Posts: 1,574
    edited January 2008

    Welcome pdaly.  I'm sorry to hear about your mom and now your sister.  This must be very scary for you.  Your sister is lucky to have caught the breast cancer early.  Most triple negative cancers are Grade 3 (aggressive) so that's not surprising.  Chemotherapy, surgery and radiation are the typical treatments for triple negative cancer.  There are no targeted therapies (like hormonal) available.  For later stage cancer they are starting to explore other options but I don't think they're widely available, especially for a very early stage diagnosis, such as your sister's. 

    Has anybody in your family been tested for the BRCA genetic mutation?

  • pdaly
    pdaly Member Posts: 28
    edited January 2008

    Yes, she did have genetic testing. That was also negative. She's very down right now and was hoping to pass along something positive to her.

  • BrendaK
    BrendaK Member Posts: 55
    edited January 2008

    Hi pdaly,

    I'm sorry to hear about your mom and sister.

    On June 29th, I was diagnosed with TNBC, had lump on July 11th and started chemo on July 30th, had 4 rounds of AC and 4 rounds of Taxol, and will be completing my 33 radiation treatments on Jan 11th.  It's all doable.  And yes this type of cancer is an aggressive one, but sounds like it was caught early. 

    Regardless of your age, you should be having yourself checked as well.  Like Twink suggested, you might want to have yourself tested for the BRCA genetic mutation. 

    Hugs and prayers for your family. 

    Brenda 

  • twink
    twink Member Posts: 1,574
    edited January 2008

    pdaly, here's something positive... triple negative cancer generally responds better to chemo than other breast cancers.  Here's hoping for a complete response (cancer gone) for your sister.  You should check out nosurrender's website which has much good information about this type of cancer and reasons to not feel so bleak.

    t

  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited January 2008

    Ladies,

    There is some data out there now that suggests that Adriamycin is not as effective as previously thought against triple negative BC.  If you are about to go, or are currently undergoing treatment, you should print out the relevant studies posted in BC.org and ask your doctor about what is right for you.   I do think we tend to "dumb down" medicine as much as possible by statements like "triple negative doesn't respond to chemo".  We learn more and more about BC and its treatments all the time.  I have scoured the internet for survival statistics whenever I get obsessive about all this, and I don't remember any statistics favoring other types of BC over this one.   Sometimes it is hard to figure out what's relevant and what's not, so you have to have a wise consultation with your oncologist to do what's best for you.

    Bobbie 

  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2008

    If your sister has stage 0 disease she would likely have lumpectomy with radiation or a mastectomy. The positive thing is she has very early disease and most likely will not progress after treatment. Although the diagnosis of cancer is never good, her stage is the most treatable. That said, no matter what the stage and especially if you have had a close family member suffer it is hard to be optimistic in the early days after diagnosis. Hopefully she will start to feel more positive as time goes on.

    Fists up!

    Mary-Anne

  • CookieOkie
    CookieOkie Member Posts: 74
    edited January 2008

    Friends:

    I have seen all possible doctors and have had every test. The latest was a PET scan and bone scan for the "spot" seen in my right lower lobe of lung and an echo.

    I meet with the oncologist tomorrow (Wed) to make decisions. I am so hopeful that the spot on the lung is nothing and all we have to deal with is the left breast. Now, I am 3-, 4.6 cm (which amazingly I still can't feel!), MRI shows no lymph nodes (but that was a couple weeks ago and nothings been done so far so who knows what they'd show now) and I'm scared shitless!

    Every doctor I spoke to changed my mind lumpectomy v. mastectomy. I really need some help. 2 ladies called me from Coolidge, AZ where we usually winter but we're stuck here in TX with no support from my daughter or her husband and the rest of our friends are in MI where we live. Boy, talk about being homeless.

    First, the surgeon, radiologist and oncologist all say a lumpectomy. My breasts are large.

     Several friends I have talked to, that have had mastectomies (don't know all their details) say go with a mastectomy. Their reasoning is, just get it out and over with. The tumor is large, and I'm triple negative. The one has reconstruction immediately but the other did not and after 7 years has decided not to have reconstruction. One says don't do reconstruction now, just heal and go through whatever and then decide a year down the road.

    Now, my husband and I were to go to AZ to be with friends for 3 months, until this. We'd still like to do that, but I don't know if that is possible. I want to continue having the Drs. here in Austin to overlook my case and call the shots regarding treatment. Is is possible to have a base in AZ for a couple months and get treatment there with TX overlooking everything? Is so, how do I do that?

    My feelings/fantacies are: Have a mastectomy without immediate reconstruction. (the surgeon said that having the reconstruction immediately could cause problems, infection, etc. that would hold up the therapy). Get started on whatever therapy and then go to AZ for a month or so. I will be on AC + taxol - whatever that means and radiation. I am sure the surgeon said radiation with or without a mastectomy.

    I just worry so that if I have a lumpectomy that it'll come right back considering everything.

    Any suggestions, etc. would be so helpful. I really don't care about my breasts, I just want to live.

    Also, can you swim while on treatment? Is a synthetic or real hair wig better? Shoot, my insurance will only pay $200 regardless but I'm going to get whatever one I want anyway no matter the cost.

    Thanks all

    Cookie

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    My surgeon also says for me to have a lumpectomy. Both the oncologist and radiation oncologist made it very clear and exactly in these words "there is no difference in survival rate." I'm going with what they say.



    I've found it very interesting reading this site of how many women have had mast instead. My surgeon was worried I would want one and was all set to talk me out of it. We are all different and have doctors who approach treatment differently. If there was one right way, there wouldn't be all these discussions.



    For me it's less about saving the breast than saving me from additional surgeries, and possible complications, for the reconstruction. My guess is you'd get back in the water quicker after the lumpectomy.



    Another difference is the kind of hospital you are going to - are you at UT? A woman I work with who was diagnosed a week before me is getting very different treatment - both in terms of what information they tell her as well as medical treatment. I'm going to a research hospital, she is going to a local one. Go to whereever the experts are if you can.



    csj

  • Raye99
    Raye99 Member Posts: 1,350
    edited January 2008

    Pdaly - I am so sorry to hear about your mom and sister. To answer your question: my onc said that being Triple Negative is no worse than being ER/PR+. I hold on to that when I worry about my trip neg status. I am grade 3, very aggressive, which the chemo responds better to. I had the typical AC/Taxol combo followed by radiation.

    Cookie - only you can make that decision. Weigh the options. The doctors do say that with mast or lumpectomy, the survival rates are the same; however, if you are worried about a recurrence, then you might want to consider mastectomy. It is a very tough decision to make - list your pros and cons and go with your gut. I had a mast myself, but was very small breasted with a large tumor; for me I didn't think twice and made my decision immediately(also had a prophylactic mast of the other breast as I am considered high risk), but that is me. I had AC/Taxol (adriamycin/cytoxan and Taxol every two weeks) and was able to work and pretty much carry on, so I'd think you'd be able to swim. You'll have your down days of course - a few days after tx, when you will not feel like doing much of anything. I would recommend a synthetic wig, much less maintainence involved and they look realistic.

    Raye

  • Shirlann
    Shirlann Member Posts: 3,302
    edited January 2008

    Hi, I had a lumpectomy 9 years ago and am a Triple Negative too. In Europe, 70% of the BC patients have lumpectomies and 30% have masts, in the US, the numbers are reversed, and no one knows why.



    I hope it is not because people feel that once the breast is removed you are completely safe, you are not. You do have a few percentage points advantage, but it is impossible to remove all the breast tissue. It runs up the front of your breast and swings around under your arm too. Dr. Susan Love in her book says in some cases she likes the lumpectomy better. If there is a recurrence she is not having to poke around in the chest wall and has tissue to work with.



    So I never argue with anyone who decides to have a mast, I just hope they know they can get a recurrence in the scar or the chest wall. If you do a mast, just do it for the right reasons.



    Gentle hugs, Shirlann

  • CookieOkie
    CookieOkie Member Posts: 74
    edited January 2008

    Shirlan

    Thanks for your info. I am triple negative, 4.6 cm, Left breast, MRI shows no lynph nodes, had to have bone and pet scan because there is a small spot. See the oncologist again tomorrow. Diagnosed on 12/14/07. Anxious to get something moving to start treatment. I have gone back and forth regarding lumpectomy v. mastectomy - I am saying mastectomy (this hour anyway), just because it is so aggressive being triple negative and the size. What is your take?

    Cookie

  • TINAMAE
    TINAMAE Member Posts: 106
    edited January 2008

    Cookie , I also had a large tumor 4.5 cm, i did 4 ac/4 taxol and after my 4th ac my tumor was gone, it started shrinking immediatly after the first ac, I than had a lumpectomy and now am finished with chemo and starting radiation, I am also large breasted,are you doing chemo before surgery ,that is how they know if the chemo is working or not by the tumor shrinking, I was able to work through my chemo also .I wish you the best

    Tina

  • pattypoo53
    pattypoo53 Member Posts: 46
    edited January 2008

    I am Patty, I am 54 years young. I was diagnosed on Dec. 15,2003. Stage IIA, Invasive Ductal Carcinoma(atypical medullary) 2.8 cm,,er, pr,her2 all negative,grade 3, no nodes involved out of 23, no vascular invasion. Four days later had a lumpectomy, with clear margins. Then in Jan. 04,started chemo 4XAC every three weeks, and then 4 X Taxol every three weeks, and then did 33 radiation treatments. So far all good reports. In December 2007 had a routine followup appt with my onc. I requested a breast mri, I have dense breasts, and a chest ct scan, both were normal. All bloodwork, mammo, tumor markers were normal. I am over four years out from triple negative, there is hope. Happy New Year to all, I don't post much but read daily. They are doing alot of research on this type of breast cancer.

    Hugs

    Patty

  • Shirlann
    Shirlann Member Posts: 3,302
    edited January 2008

    Well, Cookie, if you are kinda small or average breasted, I would say not a lot of difference looks wise whether you go for a mast or lumpectomy.  Probably a lot of tissue will be removed to get clear margins anyway.

    So I would do what you feel will keep you feeling you did the right thing.  And again, probably won't be a huge difference anyway.

    By law, you have to be offered the treatment to restore you to what you looked like before if you want it.  My daughter-in-law had only DCIS, but her breasts were small and the doc said a mast made sense, since she would have very little left anyway.

    So go with your best feeling.  Shirlann

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