Triple negative beyond 2 years- What was your treatment?

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited December 2007

    do you define your one year out or two years out from the date of diagnosis or the end of treatment??

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

    Hi Holly,

    I heard it defined both ways.  I know my oncologist was very excited when I made it to the three year mark after treatment.  So I usually say I am three years out from treatment and four years from diagnosis.  I figure I cover it all that way.

    How far are you out?

    Sadie

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited December 2007

    Hi Sadie, this question was really not for me, since I didn't have chemo, but I do have some residual problems with my ribs from rads. Not that bad, I am so glad to still be here, I don't say much.



    Here in California, we are all mostly in HMO's, so, we don't get any regular tests or exams. (Others, with better insurance, might get these tests).

    I had a mammo every 6 months for 3 years but back to one a year now. That's it.



    Hugs, Shirlann

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

    Hi Shirlann and All,

    It's amazing how different our follow up care is.  It makes it hard to know if the deciding factor is based on money or in our best interest. 

    My oncologist wants to do the scans and she can get my health insurance to approve them.  I do have good insurance.  Some women who come to see me have insurance provided by HMOs and they do not get the same follow up.  They don't even seem to have someone following them.

    Shirlann-I am so glad you are doing well and without chemo therapy!

    Warmly,

    Sadie

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  • michie0104
    michie0104 Member Posts: 5
    edited December 2007
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  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited December 2007

    Hi Michieo104 and All.

    In your post you mentioned that you always feel like you have something.  I remember feeling that way, but it lessened with time.  I think at the one year mark the body is still healing.  Nerve endings that were damaged in surgery or by chemo therapy heal at different rates and can cause some strange feelings. 

    I had follow ups with MRIs, PET scans, mammo grams and a new one called a BSGI.  I found they bought me some time without the worry or recurrence for a few months.  It was nice to have some break time from anxiety.

    Now, the anxiety is much less and not with me every day.  I have found it helpful to read the posts from women who have had a recurrence.  I think it helps me prepare for the possibility of a second journey.

    Thanks for sharing,

    Sadie

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited December 2007

    I had bilateral mastectomies. My treatment was 4 AC and 4 Taxotere. I am 5.5 years out with no recurrence.

    ------------------------------------------------------------------------------

    Where is the cureCry

    www.truefacesofbreastcancer.org

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

    Hi cin56,

    It is so wonderful to keep hearing of women who are beyond the 2-3 year window.  We can each celebrate as hopefully more and more women move beyond that line drawn in the race.  Cool

    Thank you for sharing.

    Warmly,

    Sadie

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  • arby
    arby Member Posts: 126
    edited December 2007

    Deb, I really appreciated your lengthy take on statistics.  I fully agree that they can be made to say asolutely anything to favor the drug companies or any doctor's theory on treatment.  So take them lightly and find your peace somewhere else.  cause their predictions are not final.  and a positive outlook, a gracious spirit and upward attitude will do much to support the immune system and the body's ability to grow new healthy cells.  I'm embracing this journey and that has also helped my blood pressure!!! thanks for all this info.  got me thinking that I have a few more questions to ask my doc about my diagnosis.  guess I should be doing that as I have only 8 booster RADS left to go.  the best to all of you. arby

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited December 2007

    Hi Sadie - I was diagnosed in January 07, surgery in Feb, finished chemo mid-June and completed rads on Laobr Day weekend....

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  • sahalie
    sahalie Member Posts: 2,147
    edited December 2007

    Hope1 and cin56,

    You both just made my day! 

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  • livlvlife
    livlvlife Member Posts: 1
    edited December 2007

    I will never get my mother on here, so hopefully I can use the info you give me and help her!  She is a very young 71 and my best friend; she is starting 2nd round of chemo....without going into all of it and all of our emotions (you and your families have all gone through it)  is there anything I can do or say to get her to want to fight this??? she was diagnosed in May and she said something like, well, i new something was going to happen, life has been so good lately"; this isn't like her and i am at a loss.

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

    Hi Livlvlife,

    I just wanted to say your Mom's comment is really normal. It doesn't mean she isn't fighting her cancer. My daughter had the same concern you have because I felt an urgency to do the things I had always wanted to do, but put off while I was in treatment. She was afraid I didn't have a positive outlook.

    I remember her saying she wanted me to fight this and I thought to myself, you don't think I am fighting. I am fighting with all I've got.

    When I thought about it from her perspective I think she just wanted me to be well. She didn't want her mom sick. She didn't want me to look at all the possible outcomes because it was way too scary for her to look at them. It helped me focus more on how frightening this journey is for the people that love you.

    I found it was a process for me to roller coaster down and then ride back up. I think as cancer patients we go through all of the grief stages of any loss. 

    Right now I would suspect she is tired, scared and not feeling well. From what you have said about your mom though, I would predict she will bounce back when the time is right for her. She has such a caring and wonderful daughter to fight this for!

    I hope you keep posting here.

    Warmly,

    Sadie

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited December 2007

    Sahalie, glad I could help make your day. Just wanted to add that I had a horrid pathology, with large tumor, positive nodes, multifocal spread and extensive angiolymphatic invasion. The invasion was so extensive that they couldn't get an exact measurement on the tumor and had to guess that it was between 3 and 5 centimeters. The cancer was in my lymph channels and in my blood stream. It had grown it's own set of blood vessels. I'm saying all of that to let you all know that there is so much hope, even with a bad pathology. Hang in there and never give up.

    ---------------------------------------------------------------------

    Where is the cure???

    www.truefacesofbreastcancer.org

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

    Cin56,

    I was just rereading some of the comments on this thread.  I think your journey tells women with triple negative breast cancer that there is always hope.  New medications are helping give us longer lives.  I am 4 years out from diagnosis.  I had one positive lymph node and was stage 2b.  I feel healthier now than I have in a long time and it is delightful!  Now I can work towards optimum health.

    I can focus on playing too!!!!

    Have a wonderful holiday! Laughing

    Sadie

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  • twink
    twink Member Posts: 1,574
    edited December 2007

    Cin56.  I could just hug you right now.  You've made my day, heck you've made my year!  My pathology and yours sound similar; 1/18/08 will be the 1st anniversary of my diagnosis. 

    I've visited your website in the past and found it very informative.  Thanks for the time and effort you put into helping others with this horrid disease.  

    Thank you thank you thank you!

    t

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited December 2007

    Wow, Twink, our pathologies really are similar. They also removed 17 of my nodes, 3 of which were positive. I was also 2b, grade 3, IDC. Congrats on your upcoming one year anniversary. I wish you one hundred and one more healthy ones.

    ------------------------------------------------------------

    Where is the cure???

    www.truefacesofbreastcancer.org

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  • suzy611
    suzy611 Member Posts: 7
    edited December 2007

    hi ladies i have a question regarding the bloodtest tumor markers you are getting every three months. what are the tests?

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  • Chelsea5900
    Chelsea5900 Member Posts: 1
    edited December 2007

    I very rarely visit the board anymore, but to answer the question - I will be 4 years out in March of 2008. I was Stage IIB, 1/13 nodes positive, 2.4 cm IDC, triple neg. I had lumpectomy, AC/Taxol and 33 rads. So far so good. :)

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  • twink
    twink Member Posts: 1,574
    edited December 2007

    Hugs Chelsea...so nice to hear this.  Congratulations and best wishes for your continuing health.

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

    Chelsea,

    Congratulations!  I am 4 years out too and doing well.  We had similar statics except my tumor was 3.5 c.

    Thank you for sharing.

    Warmly,

    Sadie  PS  Hi Twink!

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  • twink
    twink Member Posts: 1,574
    edited December 2007

    Hi Hi Sadie!  Hope your holidays were peaceful.

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  • joannnc
    joannnc Member Posts: 119
    edited December 2007

    I will be five years out in March.  Triple negative, 3.5 cent. tumor, 1/22 nodes.  I opted for dose dense chemo 4AC + 4 taxol, lumpectomy and 31 rads. 

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  • Teresa44
    Teresa44 Member Posts: 56
    edited December 2007

    I don't come to the boards as much any more in fact its been about 4 months since I last checked in .  I am so, so busy helping raise 3 grandkids.  At least God has given me the health and strength to do it.  It has been 3 years for me as of Sept. 16.  My tumor was 6.5cm and just came out of nowhere.  I had chemo in which my tumor completely disappeared but still decided to have a mast. I then had more chemo(taxol) and 25 radiation treatments.  They could only find 3 nodes and they all turned out negative.  Thank God for great Doctors, great medicine and lots and lots of prayer.  I feel great!!

    God Answers Prayers

    Teresa44

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

    Hi Joann and Teresa,

    Thank you both for sharing on this thread.  It is so encouraging to hear that many of us are going beyond the 2 year window.

     Sadie

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  • CookieOkie
    CookieOkie Member Posts: 74
    edited December 2007

    12/14/07 I was diagnosed with bc, left breast. Only path is from original biopsy done on 12/13. There are 2 spots, 1 is 2.68cm and the other 1.5cm with a 1.5 cm between them, surgeon thinks both may be connected somehow so is treating it is one, 4.6 cm which includes the 1.5 space. Surgeon said Stage 2 (radiologist says stage 2a), T2, NO, MO. Just got results that ER, PR and HER2 are all negative. Also had MRI which shows no nodes affected.

    Surgeon and radiologist say to have a lumpectomy. Originally, I thought to have a mastectomy. After talking to radiologist I am leaning toward the lumpectomy. Surgeon has been out of the country since before Christmas, she has not seen the 3- results yet. Bloom-Richardson grading is 7/9. I really have no idea of what a lot of this means.

    I live in MI but due to some unforseen circumstances my husband and I are in Austin, TX in our RV. Daughter and family live here. Husband and I were to leave for AZ to be with friends for 3 months before this was diagnosed.

    I see surgeon on 1/2/08, am due for surgery on 1/4/08 or 1/7/08. My heart fell when I read about the depressing news of the triple negative. I am 60 years old, no family history, except for a cousin on my dad's side. I truly don't know what to do, what to expect, are there really no drugs for the triple negative? Should a mastectomy be done in light of this information? I'd still like to go to AZ, is that possible and have treatments there, then come back to TX in April?

    I am so depressed and desperate, I don't know what to do. Any suggestions would be appreciated.

    Thanks

    c

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  • twink
    twink Member Posts: 1,574
    edited December 2007

    Cookie, I'll PM you.  Check your inbox.

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  • Taysia
    Taysia Member Posts: 6
    edited December 2007

    Sadie,



    I am also a triple-negative. I was interested in your post where you mentioned the standard treatment for triple-negatives was T and carboplatin. I've been reading about triple-negs on the internet and the they all say the prognosis is poor and makes me feel really worried. I just had a lumpectomy and I meet with my onc right after the New Year. I'm going to ask her about T and carboplatin for me, because the consensus seem to be that A/C doesn't help much.



    Curious, where did you go for your care in the Pacific NW? If you prefer, you can e-mail me at Taysiagrl8@aol.com.



    Thank you!

    All my best,

    Tay

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  • Taysia
    Taysia Member Posts: 6
    edited December 2007

    Sadie,



    I am also a triple-negative. I was interested in your post where you mentioned the standard treatment for triple-negatives was T and carboplatin. I've been reading about triple-negs on the internet and the they all say the prognosis is poor and makes me feel really worried. I just had a lumpectomy and I meet with my onc right after the New Year. I'm going to ask her about T and carboplatin for me, because the consensus seem to be that A/C doesn't help much.



    Curious, where did you go for your care in the Pacific NW? If you prefer, you can e-mail me at Taysiagrl8@aol.com.



    Thank you!

    All my best,

    Tay

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

    hmmm...I did AC followed by 12 weekly Taxol and I am over 2 years out since diagnosis. According to stats..it's the Taxol that is good (or taxotere) and the platins have come on the scene as well.

    The good news about triple negs is that if you get through the first 3 years with no recurrence, your risk of getting a recurrence goes drastically down as opposed to hormone positives whose risk of recurrence remains pretty steady all their lives, I believe. I'm not expert, though.

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