Triple Negative Diagnosis

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Angel60
Angel60 Member Posts: 1
edited June 2014 in High Risk of Recurrence or Second Breast Cancer

I have a triple negative diagnosis, have had 5 chemo treatments to be followed by 6 weeks of radiation. I am concerned with the long term prognosis since there aren't any follow up meds (tamoxifen, herceptin, etc). Any advice from other triple negatives? Comments? Clinicals? Words of encouragement?

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited July 2007
    I'm triple negative too. Just had treatment # 4 of 6. Only two more to go!! My onc said that I do not need anything else after chemo. Thank God! I feel truly blessed in that respect. Although, I tested positive for the BRCA genes and my little sister had BC 10 years ago when she was 30 so....I'm going for a full hysterectomy after I'm done with all this BC stuff. After that though, I figure I'll be able to not worry about cancer so much anymore.
    Good luck to you!!
    Traci
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  • CalGal
    CalGal Member Posts: 469
    edited July 2007
    Hi Angel -

    From your post, I see that you're brand new here ... Welcome, although no one wants to join ...

    What type of chemo are you doing?

    I'm a triple neg, BRCA1 and NED for just over a year now! I was dx'd with recurr bc, mets to liver and unrelated kidney cancer in 12/05.

    Being a trip neg, I recommend that you do your own research (internet and 2nd and 3rd opinions). I did ... and made major modifications to the treatment that my (now former) HMO proposed (which was the standard that they propose for those who aren't trip neg and don't have mets).

    From my research, I think that carboplatin and the other "platinums" are a great chemo choice for us trip negs.

    I've also been seeing an integrative onc since March and have been taking supplements and changed my diet (which had been pretty healthy and low-fat but nothing extreme).

    You also might be interested in checking out www.tnbc.foundation.org a new website for trip negs.

    CalGal
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  • Indigoblue
    Indigoblue Member Posts: 274
    edited August 2007
    [ ]
    [{o}]
    ((*))

    Angel,
    Triple to the loo my darling, negative trips to a zoo.
    Understanding the cancer lingo is alien language, in which you will greatly benefit if able to master, but faith and trust in a doc you trust (obgyn?) will help, along with this site, research medical libraries and a top notch cancer nurse.

    I am also triple hormone receptor negative. Dx ll/05, surgery (partial mastectomy, lumpectomy-ish) l.7 cm left breast stellate undifferentiated tumor, Invasive Ductal Carcenoma, Grade 3, Stage Ib, almost II, as the size was questionable and 2.2 mm from chest wall; very aggressive and quick to invade, had sentinal node biopsy which was node negative, meaning no cancer in the lymph nodes...a good thing. Did have evidence of vascular invasion, meaning the cancer cells likely got into the bloodstream.

    Still wonder if I should have had bilateral mastectomy, or did the right thing regarding doctor choices, treatment plans, nutritional this and that, hospital choices, what did I do or not do to prevent breast cancer? Shock, ignorance, intimidation, fear of doctors; not trusting that little voice. Questions, disbelief, denial, and so many emotions cluttered the questions I should have asked; not to mention the little coward I discovered hiding in my head...me.

    Triple Negative Hormone Receptors; wow! What the heck; my mother had Inflammatory Cancer (3% of all b.c.) Trip Negs basically lack hormones, but tend to be more aggressive than hormone positive cancers. Everyone is different, no two cancers are alike or react in the same manner to treatments. Her-2 is another tumor marker, receptor, which is bad, but treatable with herceptin. Since we have no progesterone, estrogen or HER-2 receptors in our tumor cells, it eliminates using Tamoxofen, Herceptin, and some other treatments for hormone positive cancers. It is complicated information, and even the docs admit the confusing facts and unpredictable nature of trip neg.


    Genetic testing should be an option, or at least a consideration. The chemo treatments are few, but have made great strides in recent months.

    I had Adriamycin/Cytoxin x 4 with IV, and 12 weekly treatments of Paciltaxol (Taxanes). New studies are recommending Abraxane which doesn't require steroids, and has fewer side effects. The weekly Taxols have proven to be the most effective treatment, but new data is out if you visit Nexcare, NationalCancer Instiute, cancer.org, and a few other sites. Halloween will celebrate one year after my final Radiation treatment of which I had 32 daily treatments; required for partials, lumpectomies, and usually for "high risk" patients. There are new techniques for rads which look promising as well.

    Good luck; I keep losing the messages as I take too long.


    Indi

    p.m. me anytime, if I can help.

    After surgery I had a huge hematoma in my breast, infection, and a seroma (fluid) the size of an orange in the armpit. Had to postpone chemo until the infection subsided, and the surgeon was unable to drain the cantelope bloodfilled clotty hematoma. A dose of strong antibiotic helped, and the seroma disappeared.

    Went to four oncologists for 2nd opinions. Chose the one the surgeon recommended, which I regret because the other two were more experienced, and one of them works at a leading cancer hospital. Hey, I panic and wanted to get through this as soon as possible.
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  • Lovin_Life
    Lovin_Life Member Posts: 39
    edited August 2007
    Hello Angel
    This really depends on your other stats - stage? tumor grade? lymph node involvement?

    Do you have a copy of your pathology report? If not - get one. And have your slides retested at an independent facility to make sure you are triple negative.

    Your path report will note what percent estrogen receptors and progesterone receptors you have - that determines whether you are negative or positive for receptors. If it says zero then get them retested for sure!

    Are you BRAC1? or BRAC2?

    So sorry you have to deal with this and sorry to hear your sister had bc at such a young age. It is a such a distressful journey. But it does get emotionally calmer with time.
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  • pinklemonade
    pinklemonade Member Posts: 16
    edited August 2007

    I too am triple neg - I didn't realize until now the "high risk" nature of that diagnosis. Can someone fill me in? There is no other treatments is there is a recurance - is that right?

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  • playwriter
    playwriter Member Posts: 316
    edited September 2007

    pinklemonade, i'm tripneg, going thru rads right now. my once basically said, if i'm going to get it again, it'll be in the next 5 years. i need to exercise, at least 6 hours of walking a week, and eat tomatoes for the lycopene, and turmeric.

    i don't know about the no other tx if there is a recurrence.

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    Hey Pinklemonade, (That's all I drink now by the way..lol...crystal light pink lemonade! Water tastes like crap after chemo to me.)

    Welcome to my world about the not knowing thing. When I was told by my oncologist that I was negative this, negative that and negative that....I thought it was a good thing and he didn't tell me otherwise. I found out on this site that triple negative is rare.

    Google it. I was really, really scared after doing alot of internet searching but.....a bunch of girls on this site have calmed me way down. In fact, I just read a thread from a girl who is trip neg for 14 yrs.

    There is treatment for re-occurance. There is a thread devoted to triple negatives. Go in there. There are a lot...... of girls that are trip neg with recurrance and are currently in treatment and doing good.

    I was diagnosed in Feb/07 so, it's all still pretty new to me. If you want to Private Message me feel free. I'll help in anyway I can.

    Sincerely,

    Traci

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  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited September 2007

    I am triple neg. too.  I am three years out from treatment and my oncologist was thrilled at my last appointment.  She told me that with a triple neg tumor, I was at a much higher risk for recurrence of my cancer.  But because the cancer is so aggressive if it does not return in the first two years, the risk goes way down unlike some other cancers. Also, this type of cancer responds very well to chemotherapy.  The path I took was to have my lymph nodes removed first and we discovered one lymph node showed cancer cells.  Then we did three rounds of chemo and a PET scan noted the tumor had not reduced in size.  We changed my cocktail...and did 6 more rounds of chemo.  The next PET scan showed improvement, but did not shrink the tumor as much as we wanted.  The doctors felt pleased the tumor had decreased in size some though.  They follow me pretty close and I am delighted to say I passed the three year mark and am doing well!!!!

    Warmly,

    Sadie

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  • mogindler
    mogindler Member Posts: 3
    edited September 2007

    Hi everyone.  I'm new to this group, but not to the triple neg.  I was diagnosed in 02/06 with Stage I triple neg.  I had a lumpectomy, 8 rounds of dose dense chemo and 37 rads.  I finished tx at the end of 08/06.  Yesterday a new lomp in the same breast was dx as cancer.  Still waiting for final path report, but it's most likely the same cancer.  Very aggressive.  Had CT scan today and waiting for those results as well.  I'm hoping for local recurrence only.  Has anyone had a recurrence of truple neg?  Thanks!

    Mo

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited September 2007

    Hi Mo -

    I am sorry to hear that you have found another lump. I know you must be very anxious waiting for your path report and your CT report.

    If you scroll waaaaay down, you'll find a forum topic specific to Triple Negatives. Right now you posted in a forum topic called "At High Risk. . .". Currently the Board has things listed alphabetically, so it's not surprising that this would be the first one you would find. But you will get more responses from other triple neg. bc gals if you get on down there to the 'T's.Cool

    Lisa

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  • Godsgirl
    Godsgirl Member Posts: 23
    edited October 2007

    Hi everyone,

    How did we get so lucky? lol  I was diagnosed 10-31-05 with triple negative. I had 3 tumors in my R breast and nodes through out with cancer. I'm a 3c (found more tumors under my collar bone), grade 3 9/9. I've had a mastectomy, 3 regions of my nodes taken, protocol chemo over 4month period and 38 rads. My Doctors told me my prognosis isn't good. At my 1 1/2 mark my Dr's were soooo excited I knew they had expected the worst. I'm having my next PET CT scan in Nov.  On my 2 year mark I will have my genetic testing at UCLA (Dr. Olopade suggested genetic counseling). I feel better when I keep educating myself or feel I'm doing something, since there isn't much we can do. Sometimes I feel like a sitting duck. Does anyone know of someone who was diagnosed like me from the get go and is around at 5 yrs. to talk about it? Smile  Thanks to all of you for being here and sharing your stories.

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  • globaled
    globaled Member Posts: 1
    edited October 2007

    Hi everyone.  Here's my story:

    7/93 - my first breast cancer right breast - stage 1 no nodes er+ and pr+.  Treatment:  Lumpectomy,Radiation and Tamoxifen.

    7/95 - my second breast cancer left breast - stage 1 triple negative.  Treatment:  Lumpectomy, radiation and chemo - Adriamycin/cytoxin x4.

    7/96 - Single lung metastasis - left lung - no one told me the hormone receptor status.  Removed by surgery - no other treatment.

    I did start exercising vigorously.  I started on the treadmill right after chemo and worked up to Tae kwon do, weight training and kempo karate.  I feel like it saved my life.  I did this for 5 years.

     

    I was cancer free until 2006.

    11/2006 - endometrial cancer stage 1B.  Hystorectomy with ovary removal.

    8/2007 - my THIRD breast cancer - right breast stage 1 clear margins triple negative.

    This time I had a double mastectomy which I wish I had had in 1995 - then I wouldn't be going through this again.  It's hard for me not to feel depressed about this one - I was kind of blind-sided. 

    And here I am.  My oncologist wants to treat with taxotere alone.  I'm having a second opinion at Duke.   Right now I'm taking multi-suplements.

    I'm also going to start my exercise regimen again.   

    I have never been genetically tested (I will be soon).  There's breast cancer all over my family history.  But from where I'm sitting - I would not recommend any type of breast saving operation.  Do a double and be done with it (hopefully).

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited October 2007

    Dang Globaled...Sorry to hear your history.

    I am interested to hear what they tell you at Duke about treatment.

    I had 3 rounds of 5-FU, Doxyrubicin and Cytoxan and then, 3 rounds of Taxotere alone. I finished in August.

    I had a bi-mast before chemo.

    Please let us know what they tell you at Duke.

    Thanks and, good luck girl.

    Traci

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited October 2007

    Hey girls,

    I am a six year triple neg survivor.

    I was first dx'd in 2001. I beat it.

    I was re-diagnosed with a NEW primary- totally unrelated to my first one, in the other breast of ER+ lobular!

    I have posted the very latest research and treatment info on triple neg disease on my forum. It is a compilation of all the trials and studies that have been going on and will be presented at the December San Antonio Breast Cancer Symposium.

    You can see it HERE.

    I hope this helps you some.

    There really is HOPE for triple negs!!

    Love,

    g 

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  • GrandmaWolf
    GrandmaWolf Member Posts: 88
    edited October 2007

    No Surrender... we have things incommon.  Lucky us.  Of all diagnosed breast cancers, there is only a 5% chance of a 2nd Primary.  Lucky us.   Like yourself, my 2nd primary is a ILC, and like the first IDC a triple negative.  My first was 8 years ago, and I am SOOO appreciative this is a 2nd Primary and not a recurrence of the first!!!  If I may ask, what is your recommended treatment this time? Sucess to both of us on this second lap around the ol BC track.

    GrandmaWolf

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited October 2007

    Hi Gmawolf!

    Yes, we are the overachievers aren't we???

    Can't be satisfied with just ONE breast cancer.....

    I had triple neg idc the first time and did six months of cmf and rads

    This time I have ER/PR + Lobular and I have been in chemo for coming up on eight months.

    I started with Adriamycin, then I took Abraxane and now I am on Xeloda.

    I am HOPING to be done by the end of this month. Hope hope hope!!!!

    I had a bilateral mast with tissue expanders done in march and will still need rads because I had node invovlement.

    We are both going to beat this beast a second time! I know it!

    Love,

    g 

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  • GrandmaWolf
    GrandmaWolf Member Posts: 88
    edited October 2007

    NoSurrender...

    I think you have one up on the ILC uniqueness scale.  It was my understanding that once you are ER/PR - that even a second primary will be Neg.  That continues to be my nemisis.  Who ever hears of ILC neg?  That shoots all the information I have available.

    You are ER/EP +... and yet on Chemo...Hmmm

    Say what is your experience with that Abraxane?  I am facing TC in a week or so, and am thinking of bringing up the Abraxane with my ONc on 'thurs.   How are the side effects for you?  I read some places they are kinder, and other places, they are more harsh than paclitaxcil.

    Hope Hope Hope you are finished by the end of this month too...

    Grandma w

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited October 2007

    Hey GW,

    I got through the Abraxane. I did it weekly with no breaks. If I could do it over again I would have done it the normal way, three weeks on and one week off. Instead I had no break and it wore on me.

    My onc believes it is a superior drug to the other taxanes so it is worth looking into!

    I have only heard of about 2 other people with er/pr - lobular.  On the one hand the lobular is a slower growing cancer so that is good and on the other hand when you are done with tx you won't have to take AIs, so I think that is good too!

    Being a switch hitter from triple neg to ER+++ I HATE the idea of having to do AIS!!

    Good luck with your new treatment.

    Please let me know if I can help you in any way!!

    love,

    g 

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  • sharebear
    sharebear Member Posts: 332
    edited October 2007

    I've had it twice 12 years apart...so much for the 5 year cured rule. Both Invasive Ductal, both trip -. Lumpectomy the first time with 8 rounds of 5FU, rads. This time bi-lat, 4 dd AC and 12 wkly taxotere. I'm all through, about a month now. Just had my first set of scans. A slight scare yesterday, after bone scan they saw a spot on my pelvic area and took me immediately to radiology for a pelvic x-ray. Turned out to be nothing.....PHEW!!!!!

    Happy Halloween!

    Sharon

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited October 2007

    Sharon..glad it was nothing.

    I guess your experience kinda downplays the idea that after 8 years with triple neg, doctors consider the patient "cured". Back to the drawing board. And the truth is..."cured" in the Cancerworld is not usually used....

    My question is....why is this topic under "high risk of recurrence or second breast cancer"?

    My surgeon and onc told me this week that triple negs are not in a higher risk of either of those. Does somebody have info for me? Studies? RECENT studies?

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