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Introducing myself

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blackbutterfly View Drop Down
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    Posted: Jun 13 2009 at 12:47am
Hello, everyone! I have been registered on this site before, but I have been absent and had to register again.  Anyway, I have had 6 doses of Taxol and lost most of my hair, so I shaved it on off.  This bald thing is kinda cute on me.......Smile   I just wanted to say hello to you all and thank the founders of this site for bringing together many different women fighting the same horrible disease.  It's really good to know that I am not alone in this fight......God bless you all!!

Edited by blackbutterfly - Jun 13 2009 at 12:49am
Terri
dx 4/10/09 @ age 36 with IDC, Stage IIB, Grade 3 6cm,0 LN, sched for 12 weeks Taxol, 4 rounds of AC, then surgery, 6 wks radiation
BRCA 1/2 -
Recurrent metastatic BC to the lungs diag Nov 12
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LEB618 View Drop Down
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Greetings,
 
I just joined this discussion forum today. My bc diagnosis (Nov 2006 at age of 43) was triple negative and at the time I didn't know all the implications of that dx. What I have read about it more recently gives me mixed feelings.
 
So, TNBC is generally more aggressive with a lower 5-yr survival rate and higher recurrence rate compared to ER+/PR+ BC, but since TNBC tends to respond BETTER to chemo than ER+/PR+ BC, we should be reassured by that?  And although there are no additional follow-up treatments after the routine surgery/chemo/radiation (unlike the anti-hormone tx for the others), a low fat diet and consistent exercise, along with stress reduction are some of the things we can do to assist in our prevention of recurrence. Do I have this all right?
 
I found my tumor myself four months after a mammogram that was supposedly normal. I had two surgeries, first a lumpectomy with sentinal node biopsy followed three weeks later with an axillary dissection to remove 10 more nodes. I had a total of 2 out of 13 nodes positive. I then had the standard routine of chemo and radiation and finished all that in June 2007. I can't believe it has been two years. With the exception of persistent weakness in my right arm and occasional fatigue, I am doing GREAT.
 
However, like some of the others have mentioned on this discussion forum, I too have the occasional anxieties about my health. Before all this, CANCER would never have been the first thing in my mind every time I had a random ache or pain. And now it seems to be at the front of my mind all too often.
 
It is nice to find a place to read about others with the same type of dx and treatment. I belong to a few different local bc support groups, but most of the women I interact with in these groups are ER/PR positive. I don't think I have met anyone yet who has had the same type of dx as mine. So I am glad to find this forum and look forward to reading more about others' stories.
 
Oh, one more thing... I do have MRIs in addition to mammograms, alternating every six months and I see my oncologist every six months and have blood work to test for cancer markers at those appointments. I think this frequent screening is essential and it helps with my sanity, anyway.
 
Live Strong,
Lisa
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luvingwhatis View Drop Down
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Hi,
I too am new!  As I understand from my medical oncologist with MD Anderson, TNBC is more aggressive and was told if it recurs, it will recur within a 3 year time frame.  However, it is a cancer that responds very well to chemotherapy.  The upside is that if the cancer does not come back, the longer one stays healthy, the risk of relapse decreases every year for it to not come back.  On the other hand, positive hormone cancers always have the risk to relapse because hormones are always in the body.
 
I also understand that nutrition/excercise/stress reduction/good lifestyle habits assist in prevention of recurrence as well.
 
The frequent screening will be essential until a few years have passed without recurrence.
 
Prayers to all!
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2009 at 1:30pm
Hi Lisa,
 
Yes for the first 3 yrs or so our risk of recurrence is higher then it drops some levels a bit then drops farther down but never are we out of the war zone.
 
And yes unfortunately at this point there is nothing for us other than check-ups, vigilance, continuing our research so that we can stay on top of what is going on in the world of Triple Neg Breast Cancer.
 
It really is good to read that you are doing so well.  Going thru treatments and all that it endures is not easy.
 
I would also like to suggest you check out http://www.facingourrisk.org and read about familial cancer.  Do you have any family members on either side who have had cancer?
 
So many Triple Neg woman do have the brca 1 mutation.  You might consider seeing a Certified Genetic Counselor.
 
Best wishes and hope to hear more from you.
Stage 2 2003
Stage 1 2007
BRCA 1+
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2009 at 1:35pm
Hi Terri, welcome to our forum.Smile
 
So will you only be getting Taxol for your chemotherapy treatment?
Radiation?
 
Yes losing our hair is very tough.  Once we do get it shaved off after it begins to come out it does really help but we being the women we are it is a very hard thing to go thru.
 
I love your attitude and yes we are all very grateful for the Foundation giving us this forum so that we could come together.
 
Hope to hear more from you and how you are doing.


Edited by trip2 - Jun 14 2009 at 1:36pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2009 at 1:40pm
Welcome Luvingwhatis, yes the first three years are the highest risk for recurrence, then it drops some to five, levels a bit then drops some more.
 
Many women do respond very well to chemotherapy.
Yes we could also have another diagnosis along the way and it could be hormone positive, that is also true.
 
Screening, vigilance, know your body, research, find out what is going on with triple neg bc.  At this point there have been changes, the medical/research field is looking at this so there will be even more changes and hopefully good news down the road.
 
I hope to learn more about your story at some point.  Nice to meet you.
Stage 2 2003
Stage 1 2007
BRCA 1+
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LEB618 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LEB618 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2009 at 3:02pm
Hi Pam,
 
Thanks for your comments.
 
In response to your questions about family history, I have no immediate family history of cancer. Two female cousins on my Dad's side had breast cancer. I don't know what their hormone status was. Both are still living, so I could find out.
 
I did have the genetic tests done and I am negative for both BRCA 1 and BRCA 2 mutations.
 
I will check out the web site your recommended.
 
Thanks again,
Lisa
 
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2009 at 3:32pm
Lisa, congratulations for being negative to the mutations, that is wonderful and good for you!
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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