First diagnosis-Received Lumpectomy or Masectomy |
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runawaybunny 
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Joined: Jul 25 2008 Location: United States Status: Offline Points: 59 |
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 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
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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. |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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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 Edited by Ronda - Nov 13 2008 at 10:08am |
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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
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Ronda
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Posted: Nov 13 2008 at 10:26am |
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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. Edited by Ronda - Nov 13 2008 at 11:05am |
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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
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runawaybunny
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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
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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. |
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Ronda
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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
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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
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billie
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Joined: Mar 30 2008 Location: United States Status: Offline Points: 345 |
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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
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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
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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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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 |
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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 |
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runawaybunny
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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
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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. |
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Ronda
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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/>
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. |
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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
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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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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 |
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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 |
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billie
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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
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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
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runawaybunny
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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
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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. |
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runawaybunny
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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
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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. |
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Ronda
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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
Edited by Ronda - Nov 23 2008 at 6:22am |
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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
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trip2
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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. |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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mainsailset
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Posted: Nov 16 2008 at 6:24pm |
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Ronda, I like your mind.
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nosurrender
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Joined: Mar 13 2008 Location: United States Status: Offline Points: 42 |
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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! |
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www.nosurrenderbreastcancerhelp.com
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trip2
Senior Member
Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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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. |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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mainsailset
Senior Member
Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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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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billie
Senior Member
Joined: Mar 30 2008 Location: United States Status: Offline Points: 345 |
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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
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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
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