First diagnosis-Received Lumpectomy or Masectomy

    I am starting this thread because I personally cannot stand to read all of the terrible things being written on this foundation.Do you ladies not know that everytime that a person googles Triple Negative Breast Cancer that this foundation is like a beacon for all of the ladies out there searching for information that are literally scared out of their mind.

   And this is going to be where each of us can come to express our opinions.No we are not going to get angry,name names,or point fingers at each other .We are going to give our opinions as to why we are so angry about the possibility that we have been guided in the wrong direction by our (sometimes beloved)oncologist.

   I have tried to express this many times.All the oncologist out there are learning about triple negative every day just as we are.They do not (and I repeat this)they do not know all of the answers to this awful breast cancer.

   So why is it so diffucult to stop the argueing and join in trying to find answers.

   Once more I will tell this.My sister before diagnosis had made the comment that she would prefer to have the breast removed,but because we were green at this we were at dr.s mercy.So while we tried to seek what was best for her,a radiation oncologist told her that all she needed was a lumpectomy and a little radiation.(COME TO FIND OUT ,HE HAD NOT EVEN BOTHERED TO READ ALL OF HER PATH REPORT.)So all of you know the rest.Lumpectomy,chemo and radiation.

   So my sister is out there just like all of you that are getting so upset about this discussion.

    But this is what I personally would like to say to all of you.It does not matter now that we were maybe given the wrong path to take.What is important now is that we get the word out to all of the new ones coming behind us.And if this is proven to be true then my sister and all of you out there can maybe have the right to go back and have a double masectomy and the insurance will have to pick up the tab.My sister is 67 and I will tell all of you that I do not believe that her body can go through poisen again.I know that a double masectomy is a horriendous surery to have to endure ,but I do believe that any of us given the choice would rather endure that than to have the cancer reaacure in the same breast or even the opposite one.

   Remember how upset everyone got when the little celebraty was telling every one that she was cured by the removal of her breast.Well ladies I am here to tell you that if we can prove that for this perticular breast cancer that a double masectomy is our first line of defence to be true then perhaps we should all stand up together to tell all of the dr.s out there that our bodies cannot take the poisen the second time and if there is any slim chance that we could lessen our chances of having to do endure the poisen a second time then ladies ,why would we not go for that.

   We are trying to fight for our right and all ladies behind us,to possibly make the right decision the first time.And for us all of you and my sister to have the right to maybe correct false information that may have been given to us.And I would like for this decision if we can get it proven to be for all women and not just the braca.It should be the choice of all women to make this decision.

    I am still reading on this foundation where there are members that are still having a problem with our trying to find out what is best for all of us. I have to get ready to go to get a flu shot.So ladies ,this is your time to voice your opinion without anger and without pointing any fingers and without naming any names.

   Let's have a civalised discussion.Let's all one by one voice our opinion.I have voiced my opinion why I am for this study to be conducted from this foundation.Now let's hear from all of you.For or against. 

    LOt's of Hugggssss to all of you.    Billie

 

I don't think at this point there is a right or wrong, everyone is just trying to figure out what is best and we have so little to go on right now.  Even though I have had a bilat mast I still feel like the other shoe is going to drop so that didn't change my mind anyway as far as worrying about cancer spreading.

 

Go to the top of the page...under "about us". and read the mission of the TNBC Foundation. It says it all.

 

Nancy

 

     I was thinking about chemo last night and when I was told the statistics (not the right statistics because turns out I'm a BRCA positve, who would have never known had it not been for this site) the doc said 56% of women with my tumor type size etc. going through rads or masts. will be cancer free, they can add another 17% to that if they do chemo.  So I said "Basically 56% didn't need chemo", the answer was "yes".  So for example when 100 women receive chemo, it's to save 17 women, 56% of them will be cancer free.....EXCEPT FOR THOSE WHO HAVE GENETIC CANCER, THEY FALL INTO A DIFFERENT GROUP.

 

     I think that is where this study comes in.  If there is another genetic component at work here, then ALL YOUNG ER negs including  BRCA unknowns and BRCA neg. could fall into this group ALONG WITH BRCA positves (this ofcourse includes us triple negatives too), it may be a better filter to get to the higher risk patients and then add the BRCA test to those with family history or  insurance that will cover it.

 

    If currently the standard or treatment with chemo is for example to treat 100% to save 17% woman, then the question is how many women young ER neg. early stage women can be educated and possibley saved by the double mast?? This will include a much of the untested BRCA unknowns also because most get it when they are young too.

 

    Admittedly I've jumped over the deep end on this, but I think this is a missing filter that could make things more simple and could really save a few lives.

 

Ronda

 

Nancy Bell,  Thank you,  I edited that phrase, what I meant to convey was the anxiety women can't get out from under, not the disease itself. 

None of us are cured until we die from something else, that's just how BC works, but we can get more peace of mind if we're given the correct information from the start, so we can maximize the benefit of treatment.

 

P.S.  Keep up the input, I really think this is a valuable discussion.

 

    

         

 

      

     I really hope that I can get through this without offending anyone,but again,because believe me that is not my intentions.But I for one do not know how you have come to the decision that any of us have a lack of tolerance,or any of us see this as a black or white discussion or that any of us are doing this in a vigilanty form of any manner.WE are not saying to you that the choice that you made is not right for you.How can you possibly believe that?When there is a first diagnoses ,you are told to go home and make a decision.Lumpectomy or masectomy.All that we are saying is this.All dr's should be made to follow a prodacal at the time of discovering triple negative.Simply said ,that every test that is available out there in his discovery of triple negative be given to this new patient and in a hurried manner.We are certainly not saying that anyone should be looked at any differently  ,just because they are surviving and they happen to chose a lumpectomy.We are all aware that this Breast cancer is a crap shooot. 

     I am so very sad today,because so many of our beautiful ladies are having to once again look death up close and personal in its ugly face.The struggles that they have had to endure ,I would think, very much gives them the right to cry out to these dr.s ,oncologists,scientist,to please try to get it right the first time.They are fighting for their lives trying to hang on just in case something is discovered to help them ,but they are also fighting diligently  to help the triple negatives following along behind them and that the right choice be given to them the first time.They are trying to get the message out that this subtype is a killer and that because there is no known way to treat it other than the poisen called chemo,and until there comes a time that there is another way to treat it ,then there should be a protocol that all dr.s immediatly have to ask to have a gene test done.Supposedly only for younger women.They say that they have narrowed it down to young women and women of color,and of course the brca gene.But I have to say to all of you.Why are so many late 40's ,50,s,and 60 yo women all of a sudden being given this diagnoses.So much is unknown about this subtype that you would certainly think that every dr. out there would want to be more agressive with this diagnosis than any other subtype.They are now advertising on tv now about the brca gene test.Surely now it should not take a month to get results.

   There is a terrible sadness in my dear dear friends voice.When this foundation was started she was right there welcoming with open arms so many of these ladies.And now so many stage 4's at one time are having to fight even harder for their lives,just trying to hang on long enough for a discovery  for trip. neg. And guess what ladies,my dear friends already damaged heart is slowly breaking into pieces.And yes what she meant when she said that she was waiting on the other shoe to drop,of course she meant that she would probably get trip. neg. a 3rd time and her already ravashied body from chemo. would not be able to fight a 3rd time.

    If there had been a protocol that all trip. negs., (until we have found a better way to treat them other than poisen put into their bodies)be immediatly gene tested then her decision would have at the first time been entirely different.There would not have possibly been a 2nd time then my dear friend could maybe endure the likes of the poisen again in the event that it should return again.One day she will tell all of you new members how 2 rounds of chemo has left her body.It is a daily struggle for her to just to live one day at a time.She does not speak much about this ,because she is thankful for the gift of life.But ladies what a hell of a tradeoff.

     Kirby ,we are all so proud that you have made it as far as you have without many problems,and yes we all believe in our sisterhood,and yes we are always going to be there reaching out our hands out to whomever needs them,but I again would like for you to go to the top of this forum,and again I would like for you to read why a group of friends wanted to start this foundation for their beloved friend.It was started ,yes to be a becon for all triple negatives to realize that they are not alone,but it was also started because these friends wanted to try to find answers and if there was something that could have been done differently for their friend.And I commend them for this.We were not all brought together to be silent.We were all brought together to help in what ever way we could to get out here and help to inform the newbies, and god help us there are plenty of them daily ,know from the beginning of discovering us that they too have a voice. and that they too have the right to tell these dr.s oncologist what they expect them to do for them.Because this foundation is groing by leaps and bounds,we are now being able to reach the newbies shortly after they are given the report that they are triple negative.And that it is their right to demand that every possible test out there that can maybe help them to beat this beast be at their disposal,and that they not have to be at the mercy of an oncologist that doesn't give a hill of beans as to how many times that the once beautiful healthy lady has to have poisen put into her body because as of right now ,that is the only defence that triple negatives have.My heart cries every day,that my sister was not given all of the facts.If the breast had been removed that certainly would have lessened the chances of the return in that perticular part of the body.

     So Kirby, it is not my intentions to upset anyone,but to try to find anwers for this dreaded breast cancer was the beginning of this foundation and its cause,not to let sleeping dogs lie simply because some one out there may take offence ,thinking that possibly there was something that they could have done differently.I do not believe that.We have women on here that are causcious about every choice that they make in their life and yet they are brought down by a diagnosis of breast cancer, and I am speaking of all breast cancers.So to all of you women out there that think that there is something that you have done to cause this.You are so so wrong.We are all trying to find answers and that is why we are putting things into catagories,but to believe that it is something that you have done to cause this is ludricous.Never Never believe this.

    So my dear friend Ronda,I do not have any answers at this time to help you to conduct this survey,but I give you a vote to continue on and I am sure that you will find a way to figure this out as to what we have to do.I would have liked it had all of the women on this foundation to have agreed with what your reasons were.But I guess that is not to be.CarlynRose has passed the torch to you and that is good enough for me.

        Lots of Hugggggssss to all of you beautiful couragious women who every day makes my heart skip a beat to have been given the privoiledge to become a small part in your lives.We have all been brought together here to be a voice for all of the ones who have fought and lost their battle,and the ones that are every day fighting this battle. We have to try to fight for the ones that are in this limbo now.We are not stupid, are we ladies?We all are very aware of how long it may take for these scientist to come up with something to get approved upon.And I do not know about the rest of you, but I am not willing to just sit here and wait while so many of you right now are being given this diagnosis and not being all of the facts. Yep, we are being given the statistics yes,but all of the facts no.As CarynRose says,I refuse to be a stastic,and yet she is going to be in the event that someone does not take up her cause.Tell us all of the facts and what is available for us in ways of helping to prolong our lives in the event that this agressive breast cancer should indeed reaacure or metasitize, and then let us still make our choices as to what we think would be best for ourselves..Lets at least come up with a prodical for all dr.s out there to read before they make any decisions as to the treatment for their triple negative ,newly diagnosed patients.You ladies say that we are all given the choice of lumpectomy are masectomy which is so true.But we are not being given all of the facts along with this choice.We are only being told that we have to choose one or the other.God some Dr.s can not even bring themselves to say the words triple negative.We all have a right to the way that we think and feel ,and some we are not going to change no matter how we lay it on the table,but as our dear 17 something survivor flutist said to us.This Breast Cancer ,you have to hit it with every bit of arsonal there is.Because when and if it hits again it hits with a vengance and it is up to us to try to take every precaucion there is out there the first time.For those who have not had the privaledge of talking with her.She just this year ,after fighting this for about 17 years, has made a dicision to have reconstruction for her new breast.I wish she would come back and visit us and she probaly will at some time,but right now I see her and her husband trying to get a little normalcy out of what years they have left.And this is what we hope for all of you and not just a chosen few.Love you ladies and lots and lots of hugs.   Billie