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JoyM View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JoyM Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2007 at 5:42am
Wink  Ok, all - I came to this site because I saw the link on another site... I am a 7yr survivor.  I was only 25, newly married, and just out of my first trimester of pregnancy. 

I am a triple-neg, and BRCA 1 & 2 negative.  At the time, back in 2000, my treatment was lumpectomy, then 6 cocktails of Adriamycin/Cytoxan - and then to follow with radiation.   I was invasive infiltrating ductal carcinoma w/medullary characteristics, stage 2A, tumor 1.5cm +1 lymph node involved. 

To me, there is tons of info out there - granted, like all have said not many of "us" out there, cuz there's more of the "other normal" breast cancers.  BUT, if you have doubts about your treatment - get more & more opinions!  I saw 5 dr's before settling with mine!  the first 2 recommended aborting my baby, and having mastectomy, & putting me in a clinical trial!

The 3rd, said he thought that was quite harsh - but he was willing to look into getting further information. 

And the oncologist & surgeon I chose, they had a whole flood of information!  They were from a NCI-designated hospital, and they were wonderful!  I haven't had any recurrence, no worries, and yes, I've made all my appointments!

My daughter is in 1st grade this year, and she is healthy & in the accelerated program!  My point is, cancer doesn't have to be a death sentence - get a specialist, get lots of opinions, and go to a Dr you can talk to - instead of being talked at...!
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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: Nov 07 2007 at 6:24am
Hi Joy and welcome to you, so glad you decided to join up with us.Smile
 
It's so good to hear you are doing well and 7 yrs, wow, that is wonderful, congratulations. 
 
Good for you for being persistent with finding a Onc you were comfortable with and obviously things went well.
 
That is such good advice, thanks for sharing
Stage 2 2003
Stage 1 2007
BRCA 1+
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Arlene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Arlene Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2007 at 1:09pm
So glad to hear about someone who has survived so long without occurance. You are also young!!!
I had the other kind 6 years ago and found out this year I was tn. My doctor is and surgeon are tops in the DC area but still I felt as if I was a part of such a small community.  I am half way thru my treatment (chemo) and will undergo radiation soon.  Hard to do twice but gee I want to live.
Arlene
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sofia Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2007 at 3:31pm
hi marie, i am new to this site. i am hormone neg too. i decided to forgo chemo, i had seven weeks of radiation.  i had radiation in 2005. all is going well.  but i would be happy if they would offer some kind of meds that we could take once we are done with treatment. did you go trough chemo? it sounded like you did not.  how are things going for you? hope to hear from you,  take care,  sofiaSmile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2007 at 4:32am
Hi Sofia, it's so nice to have you join us. Smile
 
That's wonderful you are two years out and doing well, thanks for sharing,


Edited by trip2 - Nov 12 2007 at 4:33am
Stage 2 2003
Stage 1 2007
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shellieh51 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2007 at 1:35pm
Joy,
Welcome and thanks for the great success story.  My daughters are 24 and 26 so close to your dx age - your are an inspiration.
 
Take care.
dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -
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Mary B View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mary B Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2007 at 6:02pm
Hello -
 
I just found this site googling triple negative breast cancer late on a Sunday night.  I'm glad there's a group lobbying for more research in this.  I was diagnosed with Ductile Carcinoma In Situ and infiltrating Ductile Carcinoma, triple negative, clear lymph nodes in 2001.  The infiltrating part was a lot of little bits, that when conceptually put together would have made a fairly small tumor.   I had breast conserving surgery and radiation, but no chemo (due to small size)  One oncologist thought that the gains from chemo wouldn't offset the possible side effect, another thought that the cancer would come back distantly and aggressively.  I listened to the first.   I'm 5.5 years out of treatment and so far so good.
 
Early on I was in a support group with ER, PR positive women, all doing tamoxifen or ...other adjuvant therapies after chemo.  They were having side effects, and would discuss and complain about them and I'd just sit and think - well, there's nothing I can take to help this.    I went to the National Breast Cancer Coalition conference the first year after my treatment and asked about triple negative research and there wasn't much going on.  I'd ask my oncologist after big breast cancer conferences (San Antonio) if there was anything new and she'd say "Not really."    
 
So it's just nice to know that there's a group for us.  Thank you.
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Mary B View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mary B Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2007 at 6:32pm
Flasparr -
 
I see you were diagnosed on 9/11/07.   I was diagnosed on 9/11/01.  That was something - the towers falling down at about the same time I was taking a phone call at work from the radiologist with results.  The towers put things in perspective.  I'd think - its so much worse there.
 
Hope all goes well with you and your learning and living with grace. 
Go well.
 
Mary B.
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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2007 at 7:37pm
Mary, welcome.  Someone similar to me ! I was dx Feb. 2001. I always listened to these women taking hormonal treatment and such and was so glad not to have all the side effects yet at the same time wanted to scream "what about me, where is my protection". When and how did you learn the cancer you had now had a name "triple negative". 
 
Kirby
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Indi View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Indi Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2007 at 7:44pm
StarStarStarStarStar
I am so overjoyed to know there are a few sites focused on this somewhat "rare" form of breast cancer.  
 
The unknown variables and jumbled facts have yet to unlock the mytery door to a cure or even clue to understanding the peculiar nature of triple negative hormone receptor cancers.
Reading the current research about the ongoing studies, the more confusing it seems
Is it really a "breast" cancer?  Are there receptors which have somehow lost the ability to receive signals from other hormones and proteins?  Is there a mutating cell formation induced by the polutants, plastics, and environmental issues; global warming, nuclear waste, greenhouse gas, chemical spills, pesticides, petrolium use, tephlon, radiation exposure, childhood diseases and even the side effects of the medicines used to prevent them?
 
The questions and connections to these rare diseases are endless. I am amazed  by all the science, research and medical conquests; I am also somewhat disappointed, as one of the "little nobody rare forms of cancer", because sometimes I think poison leads to more poison, while our main objective should be to care for our little blue and green planet; earth.
 
I have trip neg Invasive Ductal Carcenoma Grade 3 with vascular blood invasion present, and  found the actual 1.2 cm lump that grew to 1.7 cm in less than two weeks; nasty, long, 2.2 mm from the chestwall; clear sentinal nodes; took 4.  Had some surgical hematoma and seroma infections.  Endured Adriamycin/Cytoxin x 4, 12 weekly Taxol treatments and was allergic to it; had to take mega steroids; still don't know why I was  not given docetaxol; would have likely not caused all the physical neuropathy and problems I have now.  The radiation made the joint, muscle and anemia worse about four months after rads ended. 
This all began on Thanksgiving, two years ago when I finally found the lump
 
I knew it was there, but dense breast tissue prevented mammograms and ultrasounds from locating it.  The pain was intense for many years; later was told the tumor was wrapped up in a bundle of nerves, another reason as to why it wasn't detected.What infuriates me is the fact that I was treated like a crazy hyprochondriac, fibrocystic breasts, who was being a big baby.
 
That is a little part of the story, it's long, boring and extremely annoying when I think about any of it.  Still think I am in denial after all this; but
I am living.  I am breathing. I love my life, and husband, family, friends...
my dogs and cats.
 
Life is good, but cancer, no matter what form it takes, it a cruel horrifying monster, a dragon, a terror. 
Thanks for being here, and I hope you are all well.  I hope you enjoy the Thanksgiving holiday, as I shall.  I have much to be thankful for regarding this experience.
 
Smile
Indi
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Mary B View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mary B Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2007 at 2:40am
Kirby -
 
I got the pathology results in 2001 and knew it was er pr negative and her2nu (sp?) ...negative.. At that time I don't think there was much good research about what that meant.  At least I was at Mass General Hospital in Boston and did research in their library at the time and didn't come up with much and the Doctors didn't say all that much except there had been recent research to comfirm it didn't help to take Tamoxifin.    I think my oncologist or a nurse practitioner this year said..."oh, and since you are triple negative...blah blah..."  I think the research reports this year sparked that.
 
By the way, I forgot to say I'm 56, diagnosed when I was 50.
 
Mary B 
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lisab View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2007 at 5:09am
Dear MaryB, I too am triple negative, 57 years old, originally diagnosed in 2004 and now mets to the chest wall in 2007.  It's my understanding this year's breast cancer symposium in San Antonio in December will focus on triple negative breast cancer.  That is a good thing; I am anxious to hear what they have to offer. 
 
I was on a teleconference one evening and talked with a young woman who is being treated at one of the big hospitals in the East - either Sloan-Kettering or Dana Farber.  She is also triple negative.  We talked about the fact that there doesn't seem to be anything treatment-wise for us and that all I ever hear about is treatment for women who are not triple negative.  Anyway, she told me her oncologist told her there is so much on the horizon for triple negative BC and not to feel left out.  I was very encouraged by this. 
 
Also, I was on a breastcancer.org conference and a doctor from Sloan-Kettering talked about breast cancer and how there is never a "last" drug.  He said there are so many things available to us and we should never give up.  I also was very encouraged by this. 
 
I want to add a note here that I read in a previous issue of CURE Magazine.  When I read it, it summed up exactly how I've been feeling about triple negative BC for a long time.  If you get a chance, read the article in its entirety - there is hope for us.  Here's an excerpt from the article:
 
From CURExtra online:
 
When Cindy Coleman went for a biopsy after feeling a lump during a self breast exam in 2002, she went straight to the computer to learn as much as she could before her next doctor's appointment.  When the doctor told her that her cancer was negative for both estrogen receptors and the overexpression of the HER2 gene, she already undersand what it meant - the targeted agents that had been publicized in the news did nothing for her cancer. 
 
"I can tell you that every time I heard of or read of an announcement of some new medication that was promising for women with breast cancer, only to read or hear further that it was for women whose cancer is hormone driven, my heart would sink and break into a million pieces," says Coleman. 
 
This definitely caught my attention and I continued reading the entire article.  I hope you get a chance to do so as well.  I think triple negative BC is getting alot of press just recently and I am very hopeful.  So is my oncologist.  I hope this helps a little. 
 
Love and hugs,
 
Lisa B.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote becky walden Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2007 at 6:19pm
Star dear fellow superwomen.
 
i am also so glad to have found this website. god work is never done!!
i am 40 year diagnosed in august of 2004 with TNBC. Three years out. i am also a registed nurse. i am sorry to hear about so many rude and need a new job of oncolgist. luckily mine was great, funny, and knowledgable. i too am SCARIED with this dx. i had no family hx or risk factors. but oh well . cancer has no rules.  cancer marker are a great indicator. the number is determined by each person marker after chemo and before.as a example mine was11 during chemo and after it has remained around6-7. if possible always get a port it is so much better for you veins . i had a lumpectomy 2b  3cm mass with 1 postive node.  4AC 4 taxol with 33 radiation treatment. the chemo was every 2 weeks . i understand most patient are now every 3 weeks. alot of you are wondering about your hair coming out. i know my head was tender like a having several bruising. it began falling out the next day. a question i have about is the nipple area on post radiation site i still have edema around the nipple and very tender to touch.  again i am so happy i found this  site i have 1 daughter and great hubby. matter of fact today is our 19th year of marriage.  HANG IN THERE PUT ON YOUR BOXING GLOVES AND KICK CANCER BUTT! WITH CHRIST ALL THINGS ARE POSSIBLE . MAY GOD BLESS YOU ALL.
blessed becky
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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: Nov 21 2007 at 2:30pm

Hello Becky and welcome.Smile

 
Congratulations on your anniversary!

 

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Stage 1 2007
BRCA 1+
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Arnica View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Arnica Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2007 at 5:21am
I live in a remote rural area where there are no support groups for BC or C patients in general.  It is 2.5 hours to my onc office.  My naturopathic physician lives in a different city 3.5 hours from me.  I live alone. I support myself.  I'm working with the post-rad fatigue.  
 
I'm trying to move into a new part of my life - post treament and aggressive followup while trying to re-establish some sort of normalcy and well being.  In order to do that I am trying to build a network of support and information. I hoped this forum would be part of that.  
 
Yesterday I posted a mesage that included the fact that I hadn't had chemo.  There were two responses telling me I made a bad decision, and encouraging me to change my mind.  This upset me (evidenced by my replies to the resonses.)  I was upset because I was told I was wrong, without any appreciation for the facts or reasons I made that decision, or the agony I went through to make it, or the numbers I based it on, or counseling I had from doctors and others.  I was upset because I was told I should change my mind now, which is not possible.  I was upset because my onc told me the most important thing was for me to be comfortable with my decision either way, and I know I never would have been comfortable with it either way. And I was upset because I was told a horror story of what surely lay in store for me for not having chemo.
 
I need a safe place to discuss my situation and learn from other women who are facing the same things I am and understand how I feel and who know more than I do.  I am very disappointed to feel so rejected here by a lack of appreciation for the fact that we are all different.  I would like to know if there are parameters that I've gone beyond. Surely, this is a time in our lives when we should be allowed and encouraged to speak honestly without being rejected or confronted or ostracized.
 
 


Edited by Arnica - Nov 25 2007 at 5:43am
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2007 at 9:01am
Dear Arnica,
 
I am Lori's Mom. I am not the one dx with cancer.
 
Lori did not want to have chemo. I did not want her to go through this terrible regimen. One of her older sisters did not want her to take the chemo. I saw what our grandson went through after being dx with leukemia.
 
You and only you can and should make the decision as to your treatment. I cannot begin to imagine what Lori would have experienced if not for her loving and supportive family. Chemo is not a "walk in the park". I can say that and I have not been the one whose body has had to endure the horrible side effects. You are going this all alone.
 
Lori has said that if the cancer returns...she will never have chemo again! I hope that she never has to make that decision ever again.
 
Please know that I and all the women on this board are here to support you, no matter what your decision. Some have been down the road more than once, and some, just like you,  have been alone through the entire process. 
 
You are not alone dear Arnica. Every person is different...every person's body reacts differently to the treatments they are given. You do have a safe place to discuss your feelings and your situation. You and only you can take the infomation you receive and make the decisions that are right for you. Lori couldn't even process the information when she was dx. She still has a difficult time thinking about what the future will bring.
 
We all live day to day and none of us ever know what the future may bring. Please continue to post. You will not be alone anymore.
 
Love and many hugs,Hug
Nancy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2007 at 9:54am
Arnica,
 
I'm so sorry that you have become upset. 
 
Of course you took alot of time and gathered information to decide how to handle your situation and you decided to do what was best for you as it should be.
 
There are not any guidelines here, we are all different and have different situations and beliefs but our commonality is triple neg bc.  Some feel one way and others feel another.
 
I have read that once we have made a decision we should move forward and be satisfied that we made the best decision at the time and don't look back.
 
No one knows what the future will hold for any of us.  Of course you can speak openly, we all learn from each other and I hope you will stay with us, we'd love to have you here,
 
Hugs,
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Arnica View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Arnica Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2007 at 6:47pm
Thank you, Nancy and trip, for those responses. I am almost in tears, getting your acceptance and support, and knowing I can stay here, that it is a safe place.  I am sure that I over-reacted. Well - who knows about that anymore, right? But I have been online long enough to know better than to just react and post or send something without taking some time to get over my first emotional response. I do know that everyone here is facing huge challenges, and I know there are times when we are sad, or discouraged, or fearful, or angry, and there is no need for me to direct any of those feelings toward any of you. Thank you for being so understanding.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2007 at 8:11pm

Arnica,  it is hard getting to that place of peace sometimes. Especially with cancer. We all have had difficult decisions to make and trusting ourselves with that ability with the knowledge we have or had isn't easy in an ever changing world of technology.

One of my mantra's when I am feeling low is the "15 minute rule" someone told me before I began treatment. That is to allow yourself 15 minutes every day if needed to fully feel sorry for yourself. This has worked wonders for me. Better spirits will come.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Indi Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2007 at 10:01pm

Arnica,

Please don't feel bad about the choices you make.  This experience is the most personal and difficult imaginable.   The only people who underand this crises and panic brought on by the emotional turmoil in chosing the "right treatment" are generally other cancer victims.
 
Good grief, there are so many opinions and daily news is always reporting on some controversial drug for breast cancer.  I am still wondering if  I made the right choices.  Just finding reliable information or a physician you are able to trust is confusing and difficult.
 
Trusting your inner voice, and hopefully having  faith in your doctors, and having guidance through the support of others who have gone through what we are going through now, helped me.  Your heart will ring true.
We need site like this tp help guide us through a dark and frightening world of breast cancer terminology, medicine, new treatments, old treatments, and what is specifically targeted to your individual case.
 
I think you're great.
 
Indi
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