Newly diagnosed with Triple Neg..New to all this

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the5owens
the5owens Member Posts: 99
edited June 2014 in Triple-Negative Breast Cancer

Hi I thought it would be a great idea to start a new thread for those of us that have just recently been diagnosed with TN. I was diagnosed on 8/3/12. Just had a lumpectomy with snb. I start chemo in 3 weeks!! I am 38 years old with 3 kids at home!! Would love to hear from others!! So maybe we can navigate this journey together!!

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  • marywh
    marywh Member Posts: 2,280
    edited September 2012

    Welcome. I have been dealing with triple neg. for almost five years now off and on. Dont let the triple neg. part of it scare you too bad. Although I know its scary right now for you, You will learn to navigate in time. Triple neg. does have a good success rate with chemo. Just stay away from dark reports about this particular type, because they are out there. This is the only forum I go to. The support you get here is wonderful and can make the dark days much better. Any questions you have just post them and you will surely get many responses. Good luck and best wishes to you.

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    TN here and I was in panic mode for so long. End of July I finished all my treatments chemo/rad. In two weeks I have all the test done and the closer it gets the more freaked out I get. I just have to tell myself to breath. LoL Nothing I can do but pray and stay positive. NO other way to be :) Besides we are ALL different. Mary free of recurrences for five years? Prayers for us all :)

    Letting Go and Letting God is the Best Advise :)

    Karen

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  • marywh
    marywh Member Posts: 2,280
    edited September 2012

    No unfortunately not free of recurrences, but I thank God that Im still here and able to function pretty much the same as always. But as you read in this forum there are many women here that lead normal lives even after recurrances and many years of treatments. Just like other illnesses great strides are being made every day and treatments are getting better and better. Best wishes to you-Mary

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    Sorry :( But you are right, you are right about great strides being made. I took care of my mother with cancer and my treatments are proof of great strides from her to mine.

    Karen

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  • the5owens
    the5owens Member Posts: 99
    edited September 2012

    Thanks ladies for joining in. I am brand new to this disease and just getting started with treatments!! Prayers with you!!

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  • anamerty
    anamerty Member Posts: 195
    edited September 2012

    I too was dxed with triple negative. I had bilat mastectomy Aug 27th.My oncologist told me it was very common for Brca patients to get the triple negative .I have the brca1. I also had breast cancer jan/99 but it was er/pr positive (they didn't test the her2 then).My oncol says I won't need rads this time but most likely chemo, I have an appointment with a medical oncol on the 24th.I didn't need chemo the first time just rads, I don't know what to expect this time. I do know that my cancer was 1.8cm my 7 lymph nodes were clear and that I'm a grade 3.I think I'm probably a stage 1, because it was under 2 cm and clear nodes.I guess what really scares me the most is that I have read that reoccurrences for triple negs are really common and usually show up within 2 years.Maybe somebody here could calm me down{{please!!}}If this cancer was to reoccur after a double mastecomy is it true that it will show up in the liver bones brain lungs, but not likely in the remaining breast tissue?This is the crap I've read, and that if it was to reoccur anywhere it would be a stage 4..Please help me. I know I shouldn't read stuff but I have now I'm having panic attacks.

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  • the5owens
    the5owens Member Posts: 99
    edited September 2012

    Please don't panic...I'm so new to all this. This is my first bout with bc. I've heard the same thing but there are many who have had recorruence and fought and won. You should check out the thread calling all tns. Those ladies can answer any and all questions you have. Some are fighting recurrence right now and winning. Prayers to you my friend.

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    I agree, please don't panic and stay positive. EVERYONE is different in so many ways. I will go check out that thread. I am getting closer and closer to all my test after my first roller coaster ride since it began last August. Staying Positive. Prayers to everyoneCool

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  • gwendolynann
    gwendolynann Member Posts: 17
    edited September 2012

    Hello Ladies.  Thank you all so much for writing about you BC.  I am also a Triple Negative.  I am finished with my Chemo and Rads.  I am also nervous about it returning as it is a 30% chance.  Who on here has BC returned nd how did you know?  My left breast still has some pain from the Lumectomy done in Jan. 2012.  It's not pinfull all the time but when it is, its a deep pain.  Anyone else have that?  It freaks me out!  They say if I get through the next two years my chances of it reacurring go down drasticlly.  : )  Looking forward to hearing from all of you!

     All my Love, Gwendolyn 

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    Hi Gwendolyn Cool Nice to meet you.

    I was told 18% and when I mentioned it to my sister she responded; "That means you are 82% that you won't" My take is that doctors or any other medical profession or any one else can't tell you when it will happen again, they are guessing just like we are. I have been getting freaked out so I am trying desperately to keep my mind positive and BUSY!! Mine does the same thing. Mine actually filled out a lot during radiation and it hurt like heck. It has it pains and non pains. Always pray to God for the best. It's been a year since my lumpectomy. Praying for both of us to not see any more %%%%% of recurrence OR ANYONE ELSE.

    Prayers

    Karen

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  • Sjayne2u
    Sjayne2u Member Posts: 15
    edited September 2012

    Hello, I was just diagnosed with TN last month. It is a bit scary hearing you have cancer, not to mention a very aggressive type. I start chemo this week. It is nice to hear from others who have travled this journey.



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  • the5owens
    the5owens Member Posts: 99
    edited September 2012

    I too was diagnosed last month. I had lumpectomy first and am now going back on Monday to get my port put in then start chemo. Looks like we can navigate this journey together! You are in my prayers!!

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    the5owens, I did mine in reverse, they did lymphnodes tested/removed and port put in at the same time, chemo then the lumpectomy. Prayers you guys on the chemo Cool

    Karen

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  • the5owens
    the5owens Member Posts: 99
    edited September 2012

    Thanks Karen!!

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  • tonya2980
    tonya2980 Member Posts: 8
    edited September 2012

    I was diagnosed with tnbc at the age of 32 while 39 weeks pregnant. The diagnosis date was July 10th 2012. My daughter was born by c-section the next day, I also have a son who turns 11 this October. While in the hospital I under went different scans, had my port put in, and on July 19th began my chemo. I took 4 treatments of AC, which weren't as bad as I had imagined. I just finished 2 weeks ago and had more scans done and found my tumor shrank from 5cm to 2cm, so against the advice of my oncologist I went ahead and scheduled my double mastectomy to be done on the 27th of September. Then 3weeks after I will start a 12 week cycle of taxol followed by 5 weeks of radiation, & possibly a hysterectomy depending of genetic results for BRCA status. I'm curious as to why so many are only getting lumpectomies?? They didn't even give me that option due to my TN status. Also none of my scans have shown any spread, I won't know about my lymph nodes until after surgery. I'm praying to God that all this will be enough and my cancer will never return and that I'm making the right decisions for myself & my family. I also want to say how much I hate statistics.. I refuse to live my life based on some obligatory number that may not even apply to me. Cancer patients are people not numbers. I also only consider myself a cancer patient when i'm at the doctor the rest of the time I'm just me... Or well a very exhausted version of me who is now officially rockin the wigs... Cancer will always be ugly but I believe a strong fight against it can be beautiful. I have put everything in God's capable hands and I am trusting in His plan for my life... I will be praying for everyone who faces this awful disease and ask that you pray also for me and my children. Thank you for reading my story.. More to come after my surgery.. Crossing my fingers for zero lymph node involvement & to be disease free from then on.

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  • Luah
    Luah Member Posts: 1,541
    edited September 2012

    Tonya: What a lot you have been through! BC is crappy enough, but to have to deal with it during a pregnancy and new baby... well, I can't imagine how difficult that is. You sound like a very strong, determined young woman... I do hope the rest of your treatment goes without any hitch and you get on the other side of this, healthier than ever!

    As for surgery choice, I didn't know I had TN until my surgery pathology report came back. Even so, my surgeon - and others who specialize in TN - do not consider TN as a variable in surgical choice. Medical reasons for Mx have more to do with: size of tumour/breast (cosmetic outcome), the presence of DCIS or multi-quadrant disease, and contra-indication for rads. BMX is sometimes the preferred route for women who are BRCA+.  

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    Oh tonya BIG HUG & PRAYERS.....God Bless. I pray the same thing you do. Geeeze that is a lot to handle and baby too. You sound like you are a very strong person Cool Prayers for you, your babies(FAMILY). Every doctor is different and so is every person. I was so confused and in shock and denial that I just did what the doctor said. haha What do I know. I am an artsy fartsy person who loves creativity and imagination and HATES CANCER!!! I am understanding a whole lot more now and you know what I am very blessed that God gave me the team he did. If I were mentally/emotionally there at the time I would have refused anything past a lumpectomy but I am sure I would have gotten the best anyway. I am a weeny and a woosie!! I don't know what my future holds as far as TN but I PRAY ALL OF US GET PAST ALL OF THIS and move onward and forward to what God has planned for us.

    Pray you remain strong and tough!!

    For You and EVERYONE ELSE .... I have THIS POSTED EVERYWHERE I go through the house and read it OFTEN!!

    "The LIGHT of God surrounds me,

    The LOVE of God enfolds me,

    The POWER of God Protects me,

    The PRESENCE of God watches over me,

    Wherever I am, GOD is."

    Karen

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    Photobucket

    Tried to put a funny in here and it took me forever to figure it out and I do blogs all day. Hummmmm I seriously think I am losing it!! Well, some people would say I already have lost it.

    Thought this was a funny one wanted to share.

    Karen 

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    And of course it posted twice. LoL

    Prayers Everyone

    Karen 

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited September 2012

    Hi Ladies,

    I wanted to give you all inspiration today!  

    There is another member whose profile I just came across and she is a 1987 TNBC Survivor.  She mentioned something in a post which I think is so true. Sometimes those with the best outcomes go back to living life, and don't post on here, or they get busy and we don't know about their 10-15-20 year survival updates.  So keep that in mind as you read various threads on here, many TNBC survivors are indeed thriving!

    Also some very good news on the horizon for us - announced this morning:

    The University of Texas MD Anderson Cancer Center in Houston is spending $3 Billion to launch a massive effort against 8 particular types of cancer, and among one of those targeted by their research group is Triple Negative Breast Cancer. The team that is targeting TNBC is also jointly targeting a deadly form of Ovarian Cancer as well.  

    Here's the article so you can read more.    

    www.huffingtonpost.com/2012/09...

    May this bring hope and light to everyone's future and to targeted therapies for TNBC.

    Giving you all a big hug today - we will get through this together!


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  • ihadtnbc
    ihadtnbc Member Posts: 1
    edited September 2012

    Hi there in TX. I was diagnosed with breast cancer in 2007. At that time I was just told the cancer wasn't estrogen positive or caused by hormones.   Also before the diagnosis after having a sonogram I was told I had a fluid filled cyst. So in the beginning there was no worry until I went to have a surgeon aspirate the cyst and low and behold no fluid came out. He was on the phone to the hospital to set up biopsies the next day.  At the hospital I could tell it didn't look good, just the faces of the ones doing the biopsies. The tumor was 7.6cm which automatically put me at stage IV . The next step was a radical mastectomy. It had gone deep into muscle tissue so I have a deep crevise on my left side. Then of course it was chemo time.

    I write because I'm so glad there's something here about this type breast cancer. When I did searches online I  could not find anything in 2007 about triple negative breast cancer. So I didn't know there was a name for what I had.  No mater what nothing came up about non estrogen breast cancer.

    I hope with doctors learning more we'll in turn learn more.

    Also best wishes to you and hope this message finds you happy and above all healthy. Last but not least hope your children are doing great as well.

    God Bless, Lynn

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  • helen52
    helen52 Member Posts: 2
    edited September 2012

    hi i was dx in aug and have just been told its triple neg but havnt been offered any treatment i didnt even see oncologist i was told by breast care nurse but only when i asked.i chose to have a masectomy and am now glad i did i feel scared as everyone seems to be having treatment and i wonder if i was offered treatment would i have a better chance of it not coming back. i would be gratefull for your views on this .

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  • marywh
    marywh Member Posts: 2,280
    edited September 2012

    Genarally speaking, if you had a mastectomy and your margins were good, you may not get more treatment at this time. Depending on your staging, grade of cancer clear margins-they take all of that into consideration. Having gone through this for almost five years, the one thing I can tell you is to ask questions no matter how silly or insignificant they seem. Dont be intimidated-the oncs should answer your questions-thats part of their job.

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  • helen52
    helen52 Member Posts: 2
    edited September 2012

    thank you for your reply i will be going to see my oncologist so hopefully my questions will be answered .

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  • whaevah
    whaevah Member Posts: 354
    edited September 2012

    ihadtnbc welcome and thank you for sharing your story! Congratulations on being 5 years out! Wishing you a long happy life with NED

    hugs~

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  • kidsandlabs
    kidsandlabs Member Posts: 138
    edited September 2012

    Triple neg, started chemo today. This should be interesting.

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  • kidsandlabs
    kidsandlabs Member Posts: 138
    edited September 2012

    Triple neg, started chemo today. This should be interesting.

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  • the5owens
    the5owens Member Posts: 99
    edited September 2012

    I start chemo on Monday, October 1st!! Good luck to you kidsandlabs!!

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  • xxxxx
    xxxxx Member Posts: 67
    edited September 2012

    thefiveowens

    Hang in there, you are strong and chemo isn't forever. You will be well taken care of by the nurses and they give you all you need to get through it!! What is yours going to be?

    I'm  praying and try not to panic much. By the way they did give me something for my anxiety during my treatments CoolAs I remembered it wasn't on my part for asking Terri my nurse told me I was getting it!! hahahaha So I was a wreck at first and it eased up and I took it on and so will you!!

    Prayers for strength and NO WORRIES. Kick it's Butt Girl!!

    Karen

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