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First diagnosis-Received Lumpectomy or Masectomy

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Hi Ronda,

My dear, I feel your passion on this. However, you MUST be more careful in interpreting the data!!!!

 

What we have here is:

 

Apples=Numbers quoted to you by your onc. regarding chemo/rads/mast.
Oranges=Recent study re: young er- single vs. double mast.
Pineapples=BRCA testing
Bananas=Anything regarding lumpectomy vs. mastectomy for different groups

Statistics and studies can be powerful tools, and they also have the potential to be powerfully misleading if we are not careful with them. It seems there are many different "facts" being thrown around based on different studies and even personal experience pieced together, and I am very uncomfortable with some of the conclusions being drawn and presented as fact.


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 going through rads or masts. will be cancer free, they can add another 17% to that if they do chemo. These may have been stats for your particular stage/grade/age, etc. I don not believe these are overall bc stats? At least, I have heard completely different rates.   So I said "Basically 56% didn't need chemo", the answer was "yes".  Again, you don't really know what you're quoting. It may be, for example, that 56% of all bc is receptor positive and found at stage i and therefore a mast. would do the trick; it could be that 56% of patients are under XX age and have yy type of bc; it could be as you say, an average of all bc. We dont' really know. Unless we can analyze where these data came from, we must use extreme caution in interpreting and repeating them. 

 So when 100 women receive chemo, it's to save 17 women, 56% of them will be canceer free.....EXCEPT FOR THOSE WHO HAVE GENETIC CANCER PLEASE QUOTE STUDIES RELATING TO THIS; IT IS RELEVANT., THEY FALL INTO A DIFFERENT GROUP AND MANY DOCTORS ARE NOT CHECKING TO SEE IF THEIR PATIENTS FALL INTO THAT CATAGORY ....BUT NOW IF IT"S BEEN DETERMINED THAT ALL YOUNG EARLY STAGE ER NEGs BENEFIT..... THINGS JUST GOT A WHOLE LOT EASIER. You don't know how many of the doctors checked into their patients' categories or not. It may be a significant factor or not. I did not see where this study says anything about BRCA, so, yes, they are saying it's as easy as age + negative receptor=better to do double than single. No more, no less, nothing about BRCA status.  

     I think that is where this study comes in.  If there is another genetic component at work here, then the YOUNG ER negs that are  BRCA unknown or BRCA neg. fall into this group ALONG WITH BRCA positves, 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 to treat 100% to save 17% woman  then the question is how many women young ER neg. early stage women can be saved with the double mast.? Apples and oranges.  This will include a much of the untested BRCA unknowns also because most get it when they are young too. What do you mean by this?

dr
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2008 at 9:28am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2008 at 10:01am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote bcslayer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2008 at 11:18am

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2008 at 2:58pm
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 [29-31]. 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 [32-34]. 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.
 
This study talks about young women with cancer and why it is more aggressive.
 
 
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.
 


Edited by Ronda - Nov 13 2008 at 5:08am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 4:31am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 5:11am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 5:25am
"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!!


Edited by trip2 - Nov 13 2008 at 5:33am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 5:39am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 5:48am
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 5:49am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 6:03am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 6:15am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon in Mich Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 6:31am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 6:35am
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 6:43am
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.Thumbs%20Up
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 6:43am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 6:55am

Oh Donna, you are funny

That's me the shining exception, gee thanks, I think.Confused   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.Wacko
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 7:09am
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,
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Orig dx 6/03 - St.2a, IDC
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Lepto mets 10/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2008 at 7:10am
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.

 





Edited by krisa - Nov 13 2008 at 7:11am
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