First diagnosis-Received Lumpectomy or Masectomy
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Topic: First diagnosis-Received Lumpectomy or Masectomy
Posted By: billie
Subject: First diagnosis-Received Lumpectomy or Masectomy
Date Posted: Nov 11 2008 at 6:14am
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Hi Ladies,
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 ------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Replies:
Posted By: Ronda
Date Posted: Nov 11 2008 at 6:34am
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Hi Billie,
We TNBC gals really have only one shot to get it right. Doctor's who think it's o.k. to keep us in treatment until we finally die are out of touch. Women who do the doubles are out from under TNBC in three years (some say five, but either way) Women who do lumpectomies are never free of doubt.....ever! It will hang over your for life and for quite a few of us TNBC's it will come back again and the second one is worse than the first, and is often deadly.
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: bcslayer
Date Posted: Nov 11 2008 at 8:27am
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It is a personal choice! Not every woman is early stage when dx, no two are alike I think all of us know that. Not every woman can have reconstruction when they have a masectomy and many still have to have radiation regardless of weather they choose masec or lump(like myself). To claim that a woman who has a lumpectomy is never free, and it will hang over me for life, thats nuts! Why do some have to be right and others wrong, its our choice. Woman come here because they are scared and looking for suport, I am very disapointed. ------------- dx 1/10/08 age 37 stage 3 IDC postive nodes Gr.3 tumor 2.5 auxillary 5 cm 6 rounds of TAC 6/08 lumpectomy with lymph node removal and clear margins 35 rounds of rads and 7 dose 9/9/08 finished |
Posted By: kmartin
Date Posted: Nov 11 2008 at 9:49am
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Dear bcslayer,
I hear, and feel your pain. I, too, chose to have a lumpectomy in March but it was framed with the explanation of "there is no difference" in mastectomy v. lumpectomy outcomes. The study that has ingnited this discussion is a very large one, so the results can be taken more seriously than small studies.
Here is the link:
http://www.breastcancer.org/risk/new_research/20080908b.jsp - http://www.breastcancer.org/risk/new_research/20080908b.jsp
As I stated on the thread "one year after" I have come to the conclusion that my initial response (similar to yours) was based on my fear that perhaps I should consider more surgery...a thought that had not entered my mind until after reading this study. Since the discussion began, I have seen my med. onc. who supports this path, based on this study.
I think this has been a difficult but important discussion.
Kathy ------------- Round 1 - 2/8/08 IDC, Stage 2, Grade 3, TN (R) Lumpectomy, ax nd 3/11/08, 4/33 positive TAC x 4, AC x 1; RT x 33 genetic tests - |
Posted By: Nancy Bell
Date Posted: Nov 11 2008 at 10:21am
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bcslayer, I think this study is important but I agree with you that women come here for support and the words to relay the message need to be in a manner that does not express hopelessness. Ronda, Please be careful. Is it in the study that women who chose lumpectomy will never be cancer free? These women need to make an informed decision but not be scared into it. ------------- dx 8/17/2007 IDC Grade 3 Stage2 lumpectomy 9/19/2007 1.2cm w/extension into multiple intramammary lymph nodes SNL 0/1 Ki-67 81% Dose Dense AC/T completed 2/21/08 37 rads completed 5/02/08 |
Posted By: CarynRose
Date Posted: Nov 11 2008 at 1:03pm
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Informed consent is the key, but this is such new territory that I cast my vote for being overly aggressive. I think it would have changed my outcome.
I don't think there is enough information out there for the general medical community and for that reason, anyone dx'd with tnbc should RUN to someone with expertise.
My suggestion steps:
Biopsy -- pathology
If TNBC, then do BRCA test immediately.
If positive, then mastectomy/lymph dissection.
Chemo
Rads
tests, tumor markers, scans on a more regular basis than with hormone positive folks.
JMHO ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Nov 11 2008 at 2:41pm
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I have to go with CarynRose with this one, I think being aggressive and informed is the key. We may frighten a few people in the medical field or irritate our doctors cuz they are not up to the latest TNBC study or irritate the nurses with our pesty little phone calls but we have got to fight with all that we know and can learn. It is our lives we are talking about here. The heck with them and their feelings. Of course every woman can make her own choice but what would make it better is if she would be given the correct information to begin with instead of out of date information. Triple negative is a relatively new term and they are just really on the brink of some chemo for us and hopefully soon setting up some guidelines to go by, meanwhile we are thrown in with the rest of the bc crowd. I was told the first time lumpectomy, ok didn't know anything different, this was in 12/02 so that is what I did. Then 4 yrs later it came back on the other side, doc says lets do another lumpectomy. Well I had had alot of surgeries and decided after thinking and researching that I had had enough, so got a bilateral mastectomy. Now I read in the study everyone is talking about that a bilat mast won't even really help me cuz I'm in that teenier group who is "older". Ok I want my boobs back, right.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. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sibu
Date Posted: Nov 11 2008 at 4:48pm
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Okay, if this one study is what we're discussing, I suggest we all read it again without our "me" goggles, for what it actually says. "Contralateral prophylactic mastectomy improves survival only for younger women with early-stage, hormone receptor-negative disease, analysis of a large government database suggests." If I'm getting this right: 1. ALL of the women in this study had a mastectomy. This is not "proof" that mastectomies are better than lumpectomies for triple negatives. "All patients had unilateral cancer treated with mastectomy. Patients who had contralateral prophylactic mastectomy served as cases, and the remaining patients served as controls." 2. For younger, tn, early stage patients, they do better if they take the other (unaffected) breast, too. Is that a correct translation of "contralateral prophylactic mastectomy? 3. Therefore, what this study does not say is: ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: sibu
Date Posted: Nov 11 2008 at 4:50pm
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Sorry, hit return too soon! a) Anything about "older" or stage iii triplenegs b) Lumpectomy versus mastectomy c) chemo or radiation Am I understanding this right? ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: krisa
Date Posted: Nov 11 2008 at 5:52pm
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that's my understanding-although, basically, I don't what the heck it is telling us.  nor how to interpret the study and results. |
Posted By: sibu
Date Posted: Nov 11 2008 at 6:13pm
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So... if you're young and stage i or ii If Leftie tried to kill you, take her out with a vengeance, and have no mercy on her twin sister Rightie, either. ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: Ronda
Date Posted: Nov 11 2008 at 6:42pm
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Hi,
What I got out of it was that young, early stage ER neg woman get benefit from it.
Many suspect there is a genetic component with other ER negatives besides BRCA's, which stands to reason because it's presenting in young women. These genetic types of bc have added protection with doubles. I think most would agree it's valuable information even if they don't act on it.
I almost think the BRCA testing confuses the issue IF IT"S ALL YOUNG ER NEG THAT COULD BENEFIT, a negative BRCA result leaves them believing there is no benefit, when actually it means they perhaps don't need an oopherectomy. Get me?
The point is they should be told. As I said on my "FIX THIS" thread, we need to ask ourselves "Is it any of our business?" and if the answer is "No" then we provide support on this site. If the answer is "Yes" then we need to ask "Are we really doing enough regarding awareness?" We are causing awareness just by these posts, but it feels like we could be doing more. It's sad to see even today some gals are just not being given the information to make informed decisions, this is a tragedy...but is it any of our business?
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: Nancy
Date Posted: Nov 11 2008 at 6:47pm
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Ronda and all,
Go to the top of the page...under "about us". and read the mission of the TNBC Foundation. It says it all.
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: kirby
Date Posted: Nov 11 2008 at 7:27pm
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It is the lack of tolerance that bothers me with this thread. Turning this into black and white. For a sisterhood, this is not coming across as supportive but more a vigilanty. Breast cancer patients are blamed enough for their cancer we do not need to further that by blaming us for our choices. Or in some cases, not our choice. The information has been posted, why does it need to be hashed and rehashed as a topic of right and wrong.
What is known about this study? How many people were involved in it? What was the time frame? On top of all that information...it is still open to interpretation as stated above.
Those in favor of mastecomy's as the only way I commend you for your strength of opinion but please do allow that others may not share or CHOOSE that as their path. This going on and on has made it feel uncomfortable and intolerant if we do not share your passionate mindset.
If it is the knowledge and information to newbies that is truly of importance in this cause having tolerance will go further than fear and zealotry.
Chemo is proven to further the outcome of TN's but some are unable to tolerate it or have CHOSEN alternative pathways yet that is not being attacked. In fact some postings are welcoming the different information being given.
It would be nice that this site be a place of peace and acceptance and INFORMATION for those in need.
As a [what is considered] long survivor I do like to give encouragement and hope and tell what the possiblities can be...not what we cannot do. I am not sugar coating nor diminishing anyone else's experience. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: sibu
Date Posted: Nov 12 2008 at 4:43am
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Hi Kirby, Well said. And you make me laugh thinking back, between my 4 'real' sisters, as well as my college sorority with 80 'sisters,' all this interaction is about par for the course! Love them just the same. XOXO Donna ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: Jessie
Date Posted: Nov 12 2008 at 6:27am
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I suspect the study is likely not applicable to older women because it's based on a 5 or 10 yr survival. Women > 60 already have a lower rate of 5 or 10 yr survival because of many factors other than the BC. They may not be good candidates for the study for purely practical statistical reasons and just too many variables.
Both Pam and I have heart issues that are at least as big a factor as the BC in our surviving 5-10 years. Whether we had lumpectomy or mastectomy is just one of several issues that impact our survival at this point ---- so sorry Pam.
 Does this sound logical to explain the comment about older women?
Personally I chose to have a dbl mastectomy even tho my surgeon said there was no difference, because I thought I could withstand the surgery better in my sixties than anytime later. Age was a major factor in my mind and I simplistically felt I'd be avoiding additional surgery later. My decision if I were in my 30s might have been very different.
Hugs to all who've had to make this horrible decision.
Jessie ------------- IDC,Stage I,Grade 3,dx 4/06 dbl mast 5/06, systemic MRSA post surgery septic shock, heart attack triple bypass 1/07 no chemo due to infections and heart issues so far NED! |
Posted By: Ronda
Date Posted: Nov 12 2008 at 6:49am
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Good Morning,
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.
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: runawaybunny
Date Posted: Nov 12 2008 at 7:29am
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Weighing in on this...
I had the lumpectomy & radiation 21 years ago. They didn't test the tumor because it was so small, 3mm. How many studies go out 20+ years? But breast cancer came back this year in the same breast and if my surgeon had said there's a chance it could come back, I may have opted for a mastectomy in 1987. This time, I opted to remove both and endure the most aggressive chemo they would give me.
I remember Nancy Reagan had a mastectomy right after my lumpectomy and I freaked out wondering if I should have done the same. My radiologist was upset because he said the medical community is no longer in the busines of mutilating women and he wished Nancy Reagan had had a lumpectomy. I remember her reason being she didn't want to go to a daily radiation treatment for six weeks.
21 years ago, most of the data looked at 5-10 year survival. So, why wouldn't a doctor recommend a lumpectomy over a disfiguring surgery? Doctors make recommendations based on data, their bias and your input. We all ask our doctors what course of treatment will ensure our survival. In 1987, I was told that 5-10 years out lumpectomy and mastectomy patients had similiar survival rates.
If you keep your breast, you need to be vigilant. I had my annual tests and hopefully found it early enough the second time. We are a sisterhood united by our diagnosis. I am grateful all of you are here. There's just too darn many of us and my anger is directed, at this disease, how it affects our lives and families.
Hugs to all,
Catherine ------------- Left breast, DX 4/87 DCIS,18 neg nodes, lumpectomy,radiation, Stage 0 Left breast,DX 6/08 TNBC, 6mm grade 3, Stage 1, bilateral mastectomy w/recon, AC X 4, Taxol X 4,BRCA-neg. |
Posted By: billie
Date Posted: Nov 12 2008 at 7:37am
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Hi Kirby and all,
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 ------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Posted By: Ronda
Date Posted: Nov 12 2008 at 8:23am
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Thank you runaway bunny, This is the input I was hoping for. This notion that mastectomy is disfiguring and lumpectomy isn't is a farce. The radiation women go through can cause severe disfigurement, lymphodema, heart damage, thyroid damage and other long term side effects and make it extremely difficult to do reconstruction should they later opt for the mastectomy. They throw radiation around like it is the lesser of the two evils, and I don't agree at all. Women who are node positive have to go this route anyway, but the node negative women have a rare opportunity to get through this efficiently. The results of recontructions are pretty darn good these days, and because reconst. is require by law, insurance has to pay for it. This was not the case in years past, so this choice did leave women disfigured, times have changed and for young early stage ER negs they can avoid what runaway bunny and several other women here are going through.
When you ride this ride you are given a choice, do you want your arm broken or your leg broken, there are no easy choices, but for young, early stage TNBC's and other ER negative gals, the path is getting clearer.
Well said billie.
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: sibu
Date Posted: Nov 12 2008 at 9:20am
Posted By: sibu
Date Posted: Nov 12 2008 at 9:28am
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Oops, sorry, it happened to me, too--don't edit in Word. Sorry, folks!
------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: mainsailset
Date Posted: Nov 12 2008 at 10:01am
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Donna - beyond excellent points. I find that in my insatiable desire to solve the mystery of tn bc I often combine study results, manipulate the #'s or just don't get it. This is terribly dangerous and yet the pressure to self advocate and to learn all that is out there keeps me doggedly trying to cram for this test for my life.
Anger and frustration are bound to arrive in the comments, this is one place where the community encourages honesty as well as support and often I see the anger give way to positive determination once the conversations start answering questions. I'm ok with anger and frustration and fear, but I am also in awe of the strength in which it is answered here. It's a process and there are days this place is the only place I can feel utterly safe venting. Thanks all!
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Posted By: bcslayer
Date Posted: Nov 12 2008 at 11:18am
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Well I am tired of feeling like I have to defend myself, and the treatment that I have choosen. To say that I am angry because I am learning that my doctors did not give me the proper or recent info on my breast cancer is also insulting to myself and my physicians who have taken very good care of me. I have tried to state more then once that we must remember that each case is different and treatment is different because of that. When I was dx I did not go home and decide what surgery I would have. I went and cried knowing that I had no time to decide weither or not I wanted to save my breasts, I had to start chemo to save my life. So I lived for six months worrying that I still had cancer in me while I did chemo. I trusted in my doctor and did the hardest chemo they could give me to save my life and the slight chance in the end that it would save my breasts. I had second opinions from two others surgeon also. My tumor shrunk 75% in my breast and because of that I choose to have a lumpectomy, of course with no greater risk between the two. I do not regret my decision I made and beleive I made the right one. My scans last week were NED almost a year out from dx. I do not want to hear one more thing about how I or any other woman will live with fear for the reast of her life, or that I am angry because I realize I was not given the proper info. I am upset and angry for feeling like I have to defend myself and my decision. I also think that their are many others on this board who feel the same way but would never say so knowing the reaction they will receive. For people to just make hurtful and inaccurate statement and then simply apologize and edit shows me they truly are not thinking about all their sisters when they are spouting off at the mouth as I am now. I feel no sisterhood here, I am done with this. I also spoke with my doctor yesterday who not only is up to date on all the lastest treatment for bc here and other countries, has it ever occured to anyone that it is our country that is behind in research? SHE was very disturbed to say the least and had assured me I have done everything possible. ------------- dx 1/10/08 age 37 stage 3 IDC postive nodes Gr.3 tumor 2.5 auxillary 5 cm 6 rounds of TAC 6/08 lumpectomy with lymph node removal and clear margins 35 rounds of rads and 7 dose 9/9/08 finished |
Posted By: Ronda
Date Posted: Nov 12 2008 at 2:58pm
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All,
Those Virgo gals catch everthing! Thanks Donna!
O.k. here goes,
The stats I gave about me were to illustrate how much irrelevant information was given to me while I was making my treatment decisons (beings that I am a BRCA who has very litle family history) and to show how cancer treatment is blanketed over everyone to save a few. It's done with chemo, it's done with rads., masts, lumpect. and it's done with BRCA's too. I know each person has different stats, but all treatments are blanket treatment with outcomes that are predicted with statistics.
I might be confused, but lets keep going for a bit longer.
This study speaks to young ER neg. (most likely genetic) and doesn't speak specifically to triple negatives but we fall into it that catagory. For arguments sake I'm going to say TN's, in my questions below. My onc has said over and over that there are more TN gene mutations out there, one indication of this, is the high number of TN brca negatives in Nigeria with familial history. They know they haven't found them all. So why do we treat NON BRCA TN's like it's not genetic?? Shouldn't we be using the same blanket treatments these genetic cancers use much like we blanket women with chemo and other treatments...to save a few more?? Plus this will pick up the undected BRCA's in the midst,because many aren't being tested either. Get me?
I found this statement in one of the many studies that are out there on TNBC, it speaks to the perhaps genetic nature of TN.
Lately, some studies have reported that the phenotypical and molecular features of BRCA1-associated breast cancers are sporadically shared by TN breast cancers [ http://www.biomedcentral.com/1471-2407/8/307#B29 - 29 - http://www.biomedcentral.com/1471-2407/8/307#B31 - 31 ]. These findings suggest that the defect in the DNA-repair pathways characteristic of BRCA1-related cancers may also occur in TN breast cancers and this molecular defect may be more specifically targeted [ http://www.biomedcentral.com/1471-2407/8/307#B32 - 32 - http://www.biomedcentral.com/1471-2407/8/307#B34 - 34 ]. On the basis of previous data, further studies are needed to define breast cancer subtypes in greater detail and to develop and assess specifically targeted therapies.
Here is another study that is also suggesting the same thing regarding prophylactic mastectomies in high risk bc.
http://www.sciencedaily.com/releases/2008/05/080504194309.htm - http://www.sciencedaily.com/releases/2008/05/080504194309.htm
This study talks about young women with cancer and why it is more aggressive.
http://www.imaginis.com/breasthealth/news/news8.23.08.asp - http://www.imaginis.com/breasthealth/news/news8.23.08.asp
While they are developing "targeted therapies", wouldn't it be prudent to do what we know works with the BRCA's??
So let's ask ourselves these questions, I've answered them, but correct my if I'm wrong.
Can we agree there are more undetected gene mutations out there than are covered by the current BRCA 1 and 2 tests. Yes
Does it stand to reason that many genetic cancers show up in TN women ? Yes
Are all TN women being gene tested? Definately not.
Does having a negative BRCA test mean you don't have genetic cancer. No Are woman with a known BRCA gene being educated about the benefits of Proph Mastectomies and the added protection they offer. Yes
Are women who are TN being treated by their docs as though their cancer is genetic. Some are, some aren't, This is where we could make a difference.
Should a TN woman who is being treated as if her cancer is genetic still have the BRCA test? Yes if there is a strong family history, a postive result will give you more information for other preventative steps you can take, and help your family to prevent cancer in their future.
See where I'm going? The study regarding contralateral masts. are mirroring other information out there already. It's benefiting the young, probably genetic, cancers.
If there is a population of docs that concur with this hypothesis (and it looks like there is starting to be) then women with TN who choose lumpectomies can be given the same higher monitoring standards the BRCA's do and will have the proph. mast discussed as well.
I am sorry if I offended anyone and yes I am very disturbed about this disease and would like to see a protocol that doctor's can reference to guide TN's through treatment. If it means they use a BRCA protocol until they figure out every single gene mutation that causes each and every sub-type, then it would be more aggressive than treating it like "the other BC's". Any new cancer or recurrance of TNBC is dangerous and when it shows up after being beat back once, it's tougher the next go round.
Ronda
I edited some of my previous posts on this thread to help clarify this.
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: mainsailset
Date Posted: Nov 13 2008 at 4:31am
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Well I'm sitting across from my 67 year old sister who just had a billateral mascectomy 2 days ago after a recurrence in the same breast. She decided to go all out even though she was not TN. She has asked me to pose the question: The word SURVIVAL is perhaps a strawman that needs to be tossed out of the discussion of lumpectomy vs mascectomy.
Because....once we are in the system, no matter which choice, we are then monitored regularly. Someone who has a recurrence, but is able to successully have surgery to survive past 5 years is that person experience equivalent to a person who survives past 5 years without any recurrence?
I apologize upfront for the following, but it does occur to me that what may be manageable for the medical profession as well as billable, is not the same as how my sister views survival....she would prefer to define survive as 5 years plus without a recurrence.
Just sayin
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Posted By: sibu
Date Posted: Nov 13 2008 at 5:11am
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Mainsailset, very best to your sister. We'll consider her part of the "Tau Nu" sorority, even if she doesn't have the tn distinction. And, yes, shouldn't they be focusing on recurrence-free rather than just survival?! Ronda, I agree with most of your "yes" and "no" questions. I see the value of focusing on identifying gene mutations and coming up with more and more chemo to combat bc. However, If I were the queen of bc research, I'd also ask the tougher questions of what's causing the genes to mutate in the first place. Even if it's hereditary, it seems it didn't hit our grandmothers as young and strong as it's hitting us! I'd start with analyzing the food supply, water supply, lack of human connection and community in the U.S. in particular (I've read tn is most prevalent in the U.S.), the issues of broken spirit/depression that you alluded to in another post but no one ever seems to want to talk about...there is something bigger going on here. I wonder if our molecular structures react and evolve to adapt to these macro changes; rather than being the cause, could they be the sypmtoms? ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: trip2
Date Posted: Nov 13 2008 at 5:25am
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"They divided the samples by the women's age and found that more than 350 sets of genes that were active only in the breast cancer tissue samples from women under age 45. Interestingly, the researchers also noted that in the samples from women over age 65, these sets of genes were not active. "
"The breast tumors that arose in younger women shared a common biology, and this discovery was truly remarkable," Blackwell said in the Duke news release. "The genes that regulate things like immune function, oxygen supply and mutations that we know are related to breast cancer, such as BRCA1 [breast cancer gene 1], were preferentially expressed in the tumors taken from younger women, but when we compared younger women's tumors to older women's tumors, we found those same gene sets were not expressed in the 'older' tumors." The above is an excerpt from the Imaginis article and I know I have chemo brain but isn't it saying that women under 45 have 350 sets of genes that are only active in younger women and that also included known mutations such as brca 1 when explaining why younger women have a more aggressive cancer.
If that is the case why is it we have so many women here over 45? And I am certainly over 45 and have a brca1 mutation? I know these things can't be set in stone at this point and they are looking at averages but I'm not understanding why those over 45 who are TN and possibly brca1 with that known mutation do not count? If you take this article to heart then one would be lead to believe anyone over 45 is good to go. Is the age group 45 to 65 some sort of grey area and what does that mean??
Just a question I have.
I have to agree with Ronda that some kind of protocol needs to be set up for the women following us who are diagnosed with this disease. I am wondering since they have only begun studies in recent years if they have enough information to set up a guideline. I do not like it that we are just covered with the same blanket treatments as all BC and have the same figures thrown at us. This does not help us one bit.
Absolutely no one is telling anyone else that they did the wrong surgery or the wrong chemo or should have done rads, that is ridiculous. What we are trying to do is figure out how we can help those who are following us. This is one nasty disease and it is so frustrating to see what this does to women and it just has to stop!! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ronda
Date Posted: Nov 13 2008 at 5:39am
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Thank you Mainsailset,
That's my point exactly. The doctors are not seeing the forest through the tree's, they think sucess is a 5 to 10 year survival rate, but for many women, especially high risk women, it's a revolving door on a nightmare.
Gosh Donna, You really want to go down the rabbit hole, doncha???
In my humble opinion I think we've created a perfect storm for cancer and a boat load of other diseases. With the population that is extremely deficient in Vitamin D which leads to damaged gene and cell expression amongst a host of other things (had to get it in there somewhere), an environment that is more toxic than ever, and science saving people with genetic defects that actually weaken the gene pool (I don't want to appear ungratefeul, thank you scientists for saving me.) Wellah, lots of cancer. The cancer rate amongst our pets is the canary in coal mine, and all the fertilizers and pesticides we dump on or own lawns are killing them and us too. If you go into any Hope Depot to find gardening books, they are all written by companies like Ortho, and the give you step by step directions on how to poison your food. When we microwave in plastic we activate phyto-estrogens, which are also found in other plastics and pesticides, we overload our body with mutated, jet fuel estrogens which are fueling the epidemic of ER positve BC's. I can really go on and on about this, but for the sake of preserving this threads topic, won't (lets start a new thread!!).
Once the horse is out of the barn with our type of BC, we need to be really aggressive with treatment, because round two with Triple negative is a BI%CH!
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: trip2
Date Posted: Nov 13 2008 at 5:48am
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Hi Mainsailset,
From what I was told when I was diagnosed the second time is that I have to start my 5 yr count all over again. So those 4 1/2 yrs I had under my belt are a moot point. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ronda
Date Posted: Nov 13 2008 at 5:49am
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Hi Pam,
Well, if we cover all TN's with the BRCA blanket, I think we will cover everyone. The older TN's with undiscovered BRCA or BRCA positives, the younger TN's with BRCA unknown, negative and positive. Because of the study you mentioned above, The older TN's who are BRCA negative may or may not benefit from this approach, we really don't know. But if they too are blanketed with the BRCA protocol regarding breast cancer, they will be more protected than being treated like "the other" BC's.
What do you think??
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: sibu
Date Posted: Nov 13 2008 at 6:03am
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Ronda, you know one of the things I've always liked about my onc. is that, even before the official BRCA+ results, he seemed to have drawn this conclusion on his own. He looked at my family history, my age, tn status, and recommended the aggressive tx as well as hysterectomy when done. Surely he sees so many cases that, even if they have not identified every gene, he came to the same conclusion you have. ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: Ronda
Date Posted: Nov 13 2008 at 6:15am
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Hi Donna,
Exactly, That is where the confusion is, why wait for the BRCA results...don't need 'em.....if you're TN, be aggressive! Alot of docs are doing this now, but alot aren't. I think if women are coming to this site for information, this approach makes the most sense, and can save the most lives, don't you???
Ronda ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: sharon in Mich
Date Posted: Nov 13 2008 at 6:31am
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Hi all--I've been away from the board a while. I don't want to touch the mastectomy vs lumpectomy question. I think whatever decision any one of us makes is the right one for her AS LONG AS she has all the information available to make that decision. A disturbing thing I see in this thread and the other that led to it is how many of us seem to start this battle with only a surgeon. My biggest piece of advice is don't do anything, other than a biopsy, without consulting an oncologist--or 2 or 3. While there are lots of well-informed surgeons out there, many of them just don't have the most recent info on available chemos and various dose regimens, in particular the option of neo-adjuvant. It's not for everyone, I know, but it at least shows if the chemo regimen is working. If it's not, others can be tried.
My best friend was diagnosed with this thing just a year and half after me. Her surgeon recommended mastectomy and sent her off to a plastic surgeon consult without even mentioning the need for an oncology consult. Well needless to say, after a bit of yelling on my part, that surgeon was history and she ended up with a great surgeon, oncologist, rads team. She's doing well two years out now. Anyway , my 2 cents is information, information, information, before decision. Sharon |
Posted By: trip2
Date Posted: Nov 13 2008 at 6:35am
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Donna,
In a comment you made earlier regarding how our grandmothers didn't die at a young age with mutations I have to differ. I know I got my mutation from my mother who died at 46 from ovca and my grandmother (her mother) died very young, yes I'm blank of course, but mother was only 2 weeks old when she died of breast cancer.
Ok I am assuming me and my daughters have this mutation thru my mother/grandmother/their whole side since they are deceased I cannot be 100% but it's pretty obvious to me. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Nov 13 2008 at 6:43am
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Sharon I so agree with you.
So many of us do start with the surgeon and in my case he doesn't even send me on to a Oncologist until I have healed from whatever surgery we had decided on so you make a good point. Get your pathology and see an Onc then go from there.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sibu
Date Posted: Nov 13 2008 at 6:43am
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Point well taken, Pam. I'm generalizing again. Many of us lost mothers, aunts, grandmas at a very young age. And to your earlier point--I'm guessing they divided it out by the magic age of 45, mostly due to the availability of those data. It may be what they wanted to study was pre- vs. post-menopausal, but those data are not always available. And, you, as usual, are just ahead of your time, and the shining exception to every rule out there. :) ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: trip2
Date Posted: Nov 13 2008 at 6:55am
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Oh Donna, you are funny That's me the shining exception, gee thanks, I think.
 Hey wait a minute, I don't want to lead the parade!Generalizing as you say has to be done. How else could anyone do it? I just get testy sometimes on the age thing as it just seems the over 50 is always left out but I understand why. All of this information we are bringing to this forum is from so many smart women and it is fabulous, I get confused sometimes and try to sort these things out. Think the hardest part is memory, if I could remember what an article said that would help alot.
 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Nov 13 2008 at 7:09am
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I think the 'youngness' is getting younger as the generations go on and that is because of so many environmental factors. In my grandmother's time, 56 was young to die of breast cancer, but in subsequent generations, we've had a 42 year old and a 39 year old.
When you think of the hormone that is put into our poultry and dairy, it's no wonder that girls are getting their periods at age 8 and that the entire process starts earlier.
I'm still just post chemo and still rambling, so those are just my two cents before I head back into my stupor.
Love,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: krisa
Date Posted: Nov 13 2008 at 7:10am
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What should the protocol be when we discover a lump in our breast? You can get online and are told that you have time to make decisions, but do we. Finding a lump in my breast was a new experience for me, so I called my Doctor and made an appointment. Had to wait a few days to get in. She said, "yes, you have a lump" and made appointments for a diagnostic mammogram and ultra sound. the radiologist said, "yes, you have a suspicious mass" so she arranged for a biopsy. Had to wait days to get in for the biopsy. I had an appointment with my doctor a few days after the biopsy so she could tell me I had breast cancer. She made an appointment with the breast surgeon. Saw the breast surgeon and was given my choices for surgery. hindsight-did not know what type of bc, so made decisions without sufficient information-but, I didn't realize that till much, much later , just that it was aggressive-grade 3. Saw the oncologists after my surgery (medical and radiologist). So, from the time I discovered the lump to starting chemo was 2 months. I can't tell anyone what steps to take -each case is different-but would suggest getting in touch with an oncologist as soon as you know you have breast cancer, find out what type bc and ask both the surgeon and oncologist what they know about your particular type of bc. |
Posted By: runawaybunny
Date Posted: Nov 13 2008 at 7:56am
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Even after being 21 years out and getting it again, I am starting the clock over. Last time I was 36, this time I'm 57. So, I've been a young BC patient and now I'm an older TNBC patient. Whatever your age when diagnosed, the strongest risk factor of all is having had breast cancer once. Even with a bilateral mastectomy, the risk does not go down to zero. It's still 1-2%.
We don't know enough about the disease and the role our individual genes play in its course. I had no hereditary risk factors and I'm BRCA-.
Whatever your course of treatment, it still pays to be vigilant for the rest of your life.
I would love to meet anyone who is 20+ years out.
Hugs,
Catherine ------------- Left breast, DX 4/87 DCIS,18 neg nodes, lumpectomy,radiation, Stage 0 Left breast,DX 6/08 TNBC, 6mm grade 3, Stage 1, bilateral mastectomy w/recon, AC X 4, Taxol X 4,BRCA-neg. |
Posted By: Ronda
Date Posted: Nov 13 2008 at 10:02am
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Hi All,
Regarding the grandmohter's dying thing. I have a friend who is 40 years out from a very agressive type of bc (TN?.... who knows, but she was in her thirties and it was genetic), her family was part of the study that determined you could inherit bc from your father's side (we've come along way baby). She had 2 paternal aunts, both young with bc, that were taken by horse and carriage to a hospital when they found their bc. Their mastectomies included stipping them of their skin from neck to waist (thank god things are changing) both wore long sleeves and high neck shirts for the rest of their lives and lived to be 100 years old. My friends family history is now being study for longevity, and maybe thats the key. If we gear treament towards longevity and not just 10 years we can make a difference with TNBC.
Ronda ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: Ronda
Date Posted: Nov 13 2008 at 10:26am
Check this out....by the way most of this stuff can be found under our tips and resources page....found by our one and only self appointed researcher Trip2 who I like to call Pam.
Radiotherapy has contralateral breast cancer risk only in certain women
MedWire News: Modern radiotherapy techniques for treating a primary breast cancer do not appear to increase a woman’s risk for developing a contralateral tumor, research shows. However, young patients and those with a family history of the disease appear to be more sensitive to the carcinogenic effects, acting to increase contralateral breast cancer risk. “This finding should be taken into account when advising breast radiation with tangential fields to young patients with breast cancer,” Flora van Leeuwen (the Netherlands Cancer Institute, Amsterdam) and colleagues comment in the Journal of Clinical Oncology. Women with breast cancer have a three- to four-fold increased risk for developing a new primary cancer in the contralateral breast, compared with the risk for a first primary cancer among other women. This excess risk can be largely explained by genetic predisposition and/or hormonal risk factors, although treatment-related causes may also play a role. A study in 1992 estimated that 11% of all contralateral breast cancers in women who undergo radiotherapy before age 45 years could be attributed to radiation. However, the radiotherapy techniques evaluated in their study are no longer routinely used and more relevant data is needed. For the current study, the researchers followed-up 7221 breast cancer survivors for a second contralateral tumor, focusing on the effects of radiation dose, chemotherapy, and family history of breast cancer. After a median follow-up of 13.8 years, 503 contralateral breast cancers were observed, resulting in a significantly increased standardized incidence ratio of 2.91 compared with the general female population. Multivariate cox model analysis revealed that radiotherapy did not significantly increase the risk for a contralateral breast cancer in the entire sample (hazard ratio =1.15). In patients who underwent radiotherapy before aged 35 years, the HR for contralateral breast cancer was a significant 1.78, whereas for patients irradiated at age 45 years or older the risk decreased to a non-significant HR of 1.09. Patients with three or more relatives with breast cancer experienced a 2.4-fold increased risk for contralateral breast cancer compared with patients with no affected relatives. Treatment with adjuvant chemotherapy was associated with a nonsignificantly decreased risk for contralateral breast cancer in the first 5 years of follow-up, but did not reduce risk in subsequent years “Further evaluation is needed of the increased risk of contralateral breast cancer from tangential breast fields overall and in BRCA1/2 mutation carriers in particular,” van Leeuwen and colleagues conclude. ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: runawaybunny
Date Posted: Nov 13 2008 at 11:11am
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Rhonda,
Am I reading this correctly? This study is referring to BC developing in the breast that did not receive radiation therapy. Contralateral refers to the "other breast".
Anything on radiated breasts developing BC down the road?
Catherine ------------- Left breast, DX 4/87 DCIS,18 neg nodes, lumpectomy,radiation, Stage 0 Left breast,DX 6/08 TNBC, 6mm grade 3, Stage 1, bilateral mastectomy w/recon, AC X 4, Taxol X 4,BRCA-neg. |
Posted By: Ronda
Date Posted: Nov 13 2008 at 11:21am
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Hi Runawaybunny,
Yes, that is what this is saying. Information on genetic breast cancer can be found at www.facingourrisk.org .
The site speaks to BRCA positives, but more and more they are saying young BC's are fitting into the high risk (genetic)catagory. And as far as new cancers on the breast that had the original cancer, I think that is high anyway for high risk, but I don't know what rads do to it.
Ronda ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: billie
Date Posted: Nov 13 2008 at 1:22pm
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Good morning bcslayer,
As I mentioned at the beginning of this topic,hopefully we are not going to be angry with each other,there is no reason for that.We are all here with a common interest,and of course we all are very aware as to what that is.My anger(as one of the long time survivors clearly stated) is directed at this damn breast cancer and how it attacks a perfectly health body ,and how it turns families lives up side down .At This time this is a discussion and I am so in hopes that we can continue to do this.
There is something that I am having a problem understanding and that is how in the world that you feel that you have to defend the decision that you and your dr.s have made to keep your breasts.You have made your decision and all of us that are a part of this foundation support you in that choice and we will be here to celebrate your one year out celebration and if you will allow us to be, hopefully there are going to be many many more years to celebrate,,..Please,all of you ladies out there that feel that we are attacking you and your decision to keep your breast never ever go there in your minds because that is certainly not our intentions.As you stated,each case is different for each individual and it happens in your case that you are one of the lucky ones that had the means and knowledge and the time to do research,to be able to gather the most recent information that your oncologist were receiving,and to come to your own decision.You really was one of the fortunate ones,yes I said fortunate ones,no one feels fortunate when they are given the diagnosis of breast cancer,but in my way of thinking of this ,you was fortunate because you had time(scared out of your mind time),but you had time to process this information and to make your own decision about keeping your breast.The chemo that you was being given was working in srinking your tumor,you had time to say to yourself ,if this works in shrinking this tumor it is going to be my decision that I want to keep my breast.You weighed it out and made your decision,and then you stuck to your decision.You had time.Please do not ever regret your decision that you have made.
In most instances, women are not receiving that time to process.They are told to go home and make a choice.Lumpectomy verses masectomy.They are being told,ok you have a really full breast so a lumpectomy would work fine for you.I know ,because I was there when this was told to my sister.Oh, and that the outcome will probably be the same.Lumpectomy or masectomy.Also, some have access to the internet,and if they go home and work diligently,they may be able to find their own answers as to what their choice might be,but I can assure you that that is not what is happening.In the first place,it takes you a bit of time to just process the words breast cancer.Actually you get stuck on those 2 words.Then there is another set back when the oncologist or surgeon says to you that you are going to have to have poisen put into your body along with 30 something therapys of radiation if you think that you might want to continue to live. And the only other alternative is to loose one or both of your body parts.Oh you will still have to do the poisen in the body,but the good news is that you will not have to do 30 something therapys of radiation...Of course we know that these are only decisions to be made in the event that you are NOT brca 1 or 2.Then of course you are soon to be facing more surgeries if you still have your female body parts if you are later tested and it turns out that you have the braca gene.
Ladies,all that we are asking in this discussion is that these oncologist and surgeons at least give us all of the information out there that we so well deserve,and then maybe we can decide for ourselves as to what our decision would be so that we too could feel that we got it right the first time.Please, Give all ladies all the information that they so well deserve.Yes,we are the ones that ask for their opinions because probably over half of us are so ignorant in regards to breast cancer and never in a million years thinking that that could possibly happen to me.We are asking for possibly a prodical for all surgeons at the initial diagnoses of triple negative to Stop long enough to give us all counseling. Counseling to be informed of all available tests before all procedures are decided on. Information as to why we feel that we should or should not keep the breast or breasts in question.There are tests like the brca gene(being advertised on tv now so it should hasen the results faster,)if this test was done prior to surgery,it would most certainly be a big deciding factor as to what your decision would or would not be.Tests like the chemosensitivity testing to determine what chemo probably would work best for you and in some instantsis even if you should or should not have to have chemo,Has to be set up and arranged prior to surgery.The surgeon to explain totally the sentinol node procedure,of course WHO would not want this done ,to try to keep from getting lymphdema in the arm .And of course all information that is known at this time of triple negative and what the 3 negatives on the pathology report means,so many of the surgeons do not even take the time to try to explain triple negative to you,quite simply ,because they do not have time.I would like to say that my sister was fortunate in that her surgeon was trying to explain trip. neg. to us,but he was doing this in such a hurry ,because he had patients waiting,that we could not really grasp what he was trying to explain to us.But we do remember him usuing the words triple negative,we could not get past the words Breast Cancer.. It is in no way an easy decision to make to have a part of your body removed.But there is nothing about Breast Cancer that is an easy decision to make,but I have to say this.On this foundation,for so so many ,a far bigger decision is whether or not to do chemo,and whether or not you want to put that poisen into my body.When I said to my sister ,I do not want you to have to put that poisen into your body.Her words to me ,I will never for the rest of my life forget ,I have no choice if I want to live,and I want to live.
Oh,when you get to the oncologist he whips out that paper showing us the staitistics about this subtype and what is likely to happen in the event that you choose not to do the chemo.Stage 4.He explains the aggressiveness of this subtype,but he is quick to say that this subtype responds very well to chemo.And that if you are one of the lucky ones that this beast does not decide to return in the same breast or even the oppoisite breast for x # of years you may be home free.But even though we are told that this one is very aggressive,nothing is ever mentioned as to the fact that you may be able increase your quality of life,simply by maybe not having to take a second chemo if you choose to have the one breast or both breast removed,because of a recurrence or a new tumor in the opposite breast.. The chemotherapy that you will have to again endure in the event that you did not choose to have the removal of the breast or breasts is probably going to kill you before the breast cancer does,Because quite frankly my dear,we at this time have no other way to treat this subtype.Only poisen to pump into your body which is probably going to destroy many organs in the body and kill you before the tumor does,but we surely have to remember this, the tumor itself responds well to chemo.
Oh,if it metasitises,it will usually mestasitise in the bones,brains,lungs,or liver.You are then in stage 4.
You know,if it was I, I think that I could even accept the stage 4 diagnosis,even though no one wants to ever have to go there,if it was a prodical that we be given all of this information prior to any type of surgery.
Ronda has apologised over and over again.Maybe she did not get it right the first time,but I can assure you that I feel strongly that she will get it right now.Perhaps the reason's we have all been so emotional is because women we all love so dearly are having to endure much more that any human should have to and it is tearing at our hearts.This discussion and a plea for counseling before decisions being made is coming from our hearts and not because we want to stir things up.We want counseling for our sisters that are coming behind us.So so, many of them.Some of our beautiful ladies do not have the luxury of waiting for change,but yet they are fighting with every last breath that they have so that all following behind them be given all of the facts and resources that are available without having to fight and struggle to get them.If my sister,being 67,and knowing NOW how truly aggressive this subtype is would have been told right up front that if she had made a decision to give up her 2 breasts in return for possibly better odds of survival while having a better quality of life by not having to endure chemo a second time that would probably kill her,what do you bcslayer think that she would have chosen if she would have had the chance to have been counseled
I have to be quite honest here ladies.I think so much in the same way that CarynRose thinks.I do not like statistics.Their has got to be some reason that so many women of all ages and all nationalities,and without even haveing the brca gene that are now being diagnosed with triple negative. It is no longer just the young ones and women of color and those with the brca gene.To me this is what is dangerous to continue caterogerizing all of these women when nothing any longer is true to what once was thought to be..My sister certainly does not fit the profile along with a large amount of others...And yet there are no studies being done for women of this age group.Why are studies not being done on these 49 and up women?The only difference that I can see is that the older women maybe do not choose to have reconstructive surgery after the removal of the breast.If the dr's out there are really not to sure how to treat this subtype how in the heck are they so sure that all of their once gathered statistics are still the same.It is my personal opinion that this subtype is too widespread and I truly believe that all previous statistics should be thrown out and gathered again.And by all means that all tests that are offered for one be offered for all.
Lots of Huggggsssss to all of you beatiful ladies. Billie ------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Posted By: sibu
Date Posted: Nov 13 2008 at 4:25pm
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Hi Catherine, Even after double mast., TAC and rads, they told me my risk of recurrence is still 40%, not the 1%-2% you quoted. Maybe because of node involvement? They also told me that "if the chemo works," we TNs have the same % of recurrence on down the road (after 5 years), as the general population, or 17%. I am curious--is there any way for you to know if your first dx was also triple negative? There MUST be more 20+ year survivors out there, who don't know they were TN 20 years ago, before testing was available. Then again, some of these studies being quoted seem to suggest that this gene mutation is ballooning with the younger generation. Besos, Donna ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: runawaybunny
Date Posted: Nov 13 2008 at 5:50pm
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Hi Donna,
My initial tumor was tiny, 3mm, the size of your pupil. It was not tested in 1987. Were they doing receptor testing back then? It was also before they gave everyone Tamoxifen. It may have been TN, but I have no way of knowing. Also, all 18 removed nodes were clean.
This year, I think my surgeon was referring to any miniscule breast tissue left after the surgery when she mentioned 1-2%. All the breast tissue removed during the mastectomies was clean. It seems that the biopsy removed all of the TNBC before they did the mastectomies. This time the tumor was 6 mm. The nodes on that side were aleady gone.
Both times the tumors were caught when they were small. The first time, I felt a bump which was incapsulating the smaller cancer. I was 35, turning 36, and my mother told me I was overreacting to a cyst. I still called my doctor because my gut said I should.
This time, a mammogram found microcalcifications. Which, the radiologist was unable to locate during the stereotactic biopsy. She actually suggested I come back in 6 months and repeat the procedure. I refused and asked for a surgical biopsy instead. I'm glad I did. Otherwise, it would still be percolating in my left breast.
Catherine
------------- Left breast, DX 4/87 DCIS,18 neg nodes, lumpectomy,radiation, Stage 0 Left breast,DX 6/08 TNBC, 6mm grade 3, Stage 1, bilateral mastectomy w/recon, AC X 4, Taxol X 4,BRCA-neg. |
Posted By: Ronda
Date Posted: Nov 13 2008 at 6:39pm
Predicting a Local Recurrence After Breast-Conserving Therapy by Gene ExpressionPosted 12/19/2006
< =1.2 ="http://as.medscape.com/js.ng/transid%3D1226637273948&site%3D1&pos%3D121&artid%3D548277&ssp%3D7&affiliate%3D1" =text/>
Information from Industry http://as.webmd.com/event.ng/Type=click&FlightID=27879&AdID=62913&TargetID=7849&Values=205&Redirect=http://www.medscape.com/infosite/gemzar/article-4?src=0_0_ad_rct - How many chances will you have to treat her metastatic breast cancer? http://as.webmd.com/event.ng/Type=click&FlightID=27879&AdID=62913&TargetID=7849&Values=205&Redirect=http://www.medscape.com/infosite/gemzar/article-4?src=0_0_ad_rct - Learn why your first chance of response is often an important consideration. Abstract and IntroductionAbstractIntroduction: To tailor local treatment in breast cancer patients there is a need for predicting ipsilateral recurrences after breast-conserving therapy. After adequate treatment (excision with free margins and radiotherapy), young age and incompletely excised extensive intraductal component are predictors for local recurrence, but many local recurrences can still not be predicted. Here we have used gene expression profiling by microarray analysis to identify gene expression profiles that can help to predict local recurrence in individual patients. IntroductionBreast-conserving therapy (BCT) is a well-established treatment modality for early (stages I and II) breast cancer. The treatment consists of complete surgical excision of the tumor followed by whole breast irradiation. In multiple randomized trials comparing BCT with mastectomy, their equality in overall survival has been shown.[1-7] A large population-based Danish series showed that in different age categories (less than 35 years, 35 to 39 years, 40 to 44 years and 45 to 49 years) of young patients, survival was not negatively influenced by BCT.[8] However, local recurrence rates were significantly higher after BCT than after mastectomy in all series. The standard treatment for a local recurrence is a salvage mastectomy, which negates the original cosmetic intentions of BCT. More importantly, a recent meta-analysis by the Early Breast Cancer Trialists' Collaborative Group showed a negative impact of a local recurrence on survival.[9] They concluded: 'Differences in local treatment that substantially affect local recurrence rates would, in the hypothetical absence of any other causes of death, avoid about one breast cancer death over the next 15 years for every four local recurrences avoided, and should reduce 15-year overall mortality.' Identifying patients at high risk for local recurrence in advance and individualizing treatment in these patients (for example, a higher radiotherapy dose ('boost') or a primary mastectomy) is desirable. Several risk factors for local recurrence have been recognized.[10-17] Margin status, young age, an incompletely excised extensive intraductal component and inadequate radiotherapy dose (boost) have been identified as important risk factors for local recurrence.[18] Adjuvant systemic treatment (chemotherapy or hormonal therapy) is known to reduce the risk of a local recurrence.[12,14,16] Previous studies have shown the ability to predict distant-metastasis-free and overall survival in breast cancer with the use of microarray analysis.[19-25] Mechanisms of recurrence in the breast are not necessarily the same as mechanisms involved in distant metastasis. Theoretically, radioresistance of the tumor cells would be an important factor in local recurrence after BCT but not necessarily in distant metastasis. Previous analyses of gene expressions patterns in a series of 295 early-stage breast cancer patients have identified gene expression signatures that powerfully predict the risk of distant metastasis and mortality.[22,23,26,27] In the present study we used a supervised approach to search for gene expression signatures that predict the risk of local recurrence after BCT in a series of 161 early-stage breast cancer patients. ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: sibu
Date Posted: Nov 13 2008 at 6:42pm
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Hi Catherine, Well, if we could find a way to quantify and market our INTUITION, we'd be richer than the pharmaceutical companies! Lord knows how many women would have followed their mother's or doctor's advice in that situation...good for you! You're right--as I understand, they just started testing for the third "negative" in the last 10 years. Were you 'double negative' the first time? What was your chemo? Did you do rads? I guess it just made me wonder whether this was considered a recurrence of your original cancer, or a whole new one. Still a bit hazy on that whole subject. Big hugs, Donna ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: billie
Date Posted: Nov 13 2008 at 8:48pm
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Hi Catherine,
I am missing something here.Did the tumor come back a second time in the same breast that you had the lumpectomy and radiation on.
Or did it come back on the opposite side?
By the way Catherine,so sorry that you are having to go through this a second time.As was mentioned , I think that we are all beginning to realize that once diagnosed with breast cancer you are going to have remember to never let your guard down for the remainder of your days.
Lots and lots of huggggssss Billie ------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Posted By: runawaybunny
Date Posted: Nov 14 2008 at 3:23am
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Hi All, 1987 DCIS was on the left side.
2008 TNBC was also on the left side.
Because of radiation therapy to the left breast in 1987, the only option in 2008 for the left breast was mastectomy. I asked them to remove the right breast as well.
There was no receptor testing on the 3mm tumor in 1987 so I don't know what kind it was.
TNBC discovered in 2008 is considered another primary even though it's in the same breast. Essentially, starting the process over.
My onc ordered chemotherapy because I'm TNBC in an effort to hopefully prevent a metastisis. My fingers are crossed.
Catherine ------------- Left breast, DX 4/87 DCIS,18 neg nodes, lumpectomy,radiation, Stage 0 Left breast,DX 6/08 TNBC, 6mm grade 3, Stage 1, bilateral mastectomy w/recon, AC X 4, Taxol X 4,BRCA-neg. |
Posted By: runawaybunny
Date Posted: Nov 14 2008 at 3:39am
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Hi Donna,
Maybe I didn't listen to my mother because I'm just contrary. She'll definitely testify to that.
Seriously, in any situation, it helps to listen to our inner voice. It's easy to hear what we want to hear, but my gut whispered, "Check it out and be certain." and I don't want to wait around wondering what if?
Hugs back at ya!
Catherine ------------- Left breast, DX 4/87 DCIS,18 neg nodes, lumpectomy,radiation, Stage 0 Left breast,DX 6/08 TNBC, 6mm grade 3, Stage 1, bilateral mastectomy w/recon, AC X 4, Taxol X 4,BRCA-neg. |
Posted By: Ronda
Date Posted: Nov 14 2008 at 7:01am
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Hi Gals,
The way these docs go about doing things is they give everyone the same treatment and then study it. Then they see why some worked and why some didn't, divide them up throw something different at it and then study that. Well, the studies are starting to come back on the breast conserving treatments and it works for some and isn't too good for others.
High risk bc has a higher rate of recurrence especially in the breast conserving treatment group. Recurrence is tougher to treat in TN's and studies are showing recurrence is more common in "Young" ER neg" "BRCA's" (genetic, us) with breast conserving treatment and when that happens there life is at greater risk and a mastectomy usually comes with it too.
There is also evidence that the radiation contributes to contralateral new cancers, but genetic bc does that also.
With the statistics being worse for TN in these last few decades, could it be that we are the group that does not benefit from these breast conserving treatments. Doesn't it stand to reason that if we have a defective gene that it is not a good idea to radiate our tissue and if radition is neccessary that the breast tissue be removed to prevent future cancers?.
When we look at studies that say "Young women with BC" "Er negative women with BC", and "BRCA positive women with bc" those all include many of us TNBC. I believe we are the group of women who get the most benefit from the proph mast. and that it's the studies that are confusing things. If you look into all of these different catagories of studies, it's finally becoming clearer....they overlap and they are meanginful for us. When you look at some of the recent newbie posts, many docs are seeing the writing on the wall, and not waiting for the BRCA test to be aggressive.
ER positive cancers are an epidemic most likely caused by enviromental issues. I believe we all may have the good old fashioned genetic bc, that is best treated by removing the boobs, but if lumpectomy is your treatment of choice, your doctor needs to know your pathology and show you the correct stats. and monitor you carefully.
After being on this site for a year and a half and seeing the different posts and reading the studies and watching women fall into deeper levels of treatment with recurrance and mets, it occured to me that we think we're talking apples and oranges, but when you look closer these different catagories of high risk bc. all are fitting under the TN umbrella (some fit into other bc catogories, but TN is our issue). It's all apples. I believe this thread has really helped define that the differences are closer to the same than we think.
I think the BRCA (genetic bc) blanket of information is more relevant to TN's than "the other" bc's and should be considered when deciding treatment plans and adpoted by this site for guidance. Again I deeply apologize that I've offended anyone. If this site's purpose is to provide leadership in saving lives then it needs to start thinking about how best to do this. I believe this path is better than "the other" bc. stats. and I know with all my heart it could have saved lives had it been used at the time of their first dx. and not by "checking into things" when recurrence appeared.
I'm not queen of this forest, but I care deeply for all of you (even the gals who are really really mad at me) and want to see the protocol change for TN.
Hugs to you all, but especially to our mets. recurrence gals,
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: trip2
Date Posted: Nov 14 2008 at 7:21am
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Ronda you just may be onto something. There does seem to be alot of similarities. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: mainsailset
Date Posted: Nov 16 2008 at 6:24pm
| Ronda, I like your mind. |
Posted By: nosurrender
Date Posted: Nov 16 2008 at 7:16pm
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Well, I will add mine... I was first diagnosed in '01 and at first I said I wanted a bilat but my BS talked me out of it. He told me that the survival rate is the same with a lumpectomy and rads as a mast. i went through 6 years of scares, biopsies, mris, pets, you name it. I knew I had something back again but I couldn't get the BS to do an excisional. He said it would only cause more scaring and that would make future mammos hard to read. I went a year fighting him for a biopsy. I didn't know then that he couldn't do the biopsy because he had stopped taking my insurance. In that time I grew a 2.5 cm tumor with 4 positive nodes and extra nodal extension. I only discovered this because I got a radiologist to do a core biopsy... this was after I could not only feel the lump but see it. It was right under my nipple. SO the core biopsy was seventeen samples taken through the nipple. The twist? I had been TN for all that time and THIS tumor was lobular and ER+! I got a new BS, got a bilateral with Expanders and then did nine months of chemo and then rads. I always wonder what would have happened if I had gotten the bilat back in '01. But I believe in looking forward and learning from my mistakes.. and it was my mistake. I should have fought harder. But I didn't know that then, I sure know it now! ------------- www.nosurrenderbreastcancerhelp.com |
Posted By: trip2
Date Posted: Nov 17 2008 at 4:54am
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Oh my word, I cannot believe the BS's staff or someone didn't tell you they were no longer taking your insurance and your BS let you continue on fighting him for a biopsy. That is horrible! They should have their license revoked! You are right, we have to look forward and share our stories and information so that the newly diagnosed can make a more informed decision. Thanks for sharing. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: mainsailset
Date Posted: Nov 18 2008 at 2:21pm
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That is horrific!
My favorite line to doctors now is simply, "you have a responsibility to write orders for a biopsy on this. I cannot accept anything less."
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Posted By: billie
Date Posted: Nov 22 2008 at 6:23am
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Hi Ladies,
I have a question.This would be for those that are between chemo and radiation?
If you have completed your lumpectomy and are doing your chemotherapy and You have not started radiation.How hard would you think that it would be to convince the onc.'s and your surgeon that you would prefer at this point to have a bilateral masectomy.
What steps do you think that a person would have to take to get this done?
I also have a second question?And I am in no way saying that my sister would do this,quite frankly because she is having , and facing ,at this time other surgeries,so I would never suggest this to her .(These surgeries are not due to chemo or radiation,they are from her back problems that started in 1999.)
The second question is this.If a patient has completed her lumpectomy,completed her chemotherapy,completed her radiation.How hard would you think that it would be,Only if she did not want reconstruction,to go to her dr.s and request a bilateral masectomy as an added precaution for recurrence.And do you think that most insurance companies would pay for this?
Lots of hugggssss ladies Billie
------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Posted By: krisa
Date Posted: Nov 22 2008 at 7:49am
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I had thought about having a mastectomy after completing chemo and had gone to the planning session for radiation, but, I wasn't ready to lose my breast and so, completed radiation. I could have gone back to my breast surgeon and requested a mastectomy and my insurance would have paid for it...and probably if I requested to have both removed. Knowing what I know now, I would have had a mastectomy in the beginning, however, for me, I needed to go through all the treatments that I had, to now make a decision like that. In other words, if cancer showed up in my other breast-i would mentally feel up to having a mastectomy. It is a huge decision to make. If it showed up again in my same breast with cancer, I would not have a choice. |
Posted By: kirby
Date Posted: Nov 23 2008 at 12:09am
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Billie,
I am sorry someone would have to "convince" their dr.s of their choices. It should be our choice, if it is something we feel strongly about. We should be able to be in charge of our bodies. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |