One Year after

    I have decided that I would like to post this even though it throws me out there for some harsh criticisom.As I have said many many times that my sisters first choice would have been to have the breast removed with no reconstruction ,but while we were just trying to gather information ,we were advised by an oncologist to stick with the lumpectomy.Heck we were so green that we did not even know that there was an oncologist to do chemo and an oncologist to do the radiation. 

   But the more research that I was able to do ,proved to me real fast that our surgeons's and oncologists are not GOD(even though some think that they are)and they are searching for answers as well as we are in this very very aggressive sub type of Breast Cancer.And I will say to you ladies that if my sisters breast cancer should return,I am going to be highly pissed for the simple fact is that if the breast had been removed ,as she wanted in the first place, it would certainly cut her chances for this beast  to return.It seemed that every time we thought that we were being given our best options and that we were doing the right thing ,it would soon be found out by us that we had the right to have chosen and gone with our first instints but because these were professional people we thought that we were in good hands that surly to God knew exactally what was right for us to do..Wrong!!!!!

     So now I would like to talk with you ladies that feel as if we are saying to you that the choice that you made to go with a lumpectomy was a bad decision and that all of us will now have to live every day just waiting on the beast to return.As far as I can tell there is no one on this foundation that is in any way pointing fingers,we are trying to learn.And if we can figure out just one thing that will perhaps keep our new members from going down the wrong journey that we took then I am upset for you.

   I would like for you ladies to go to the top of this foundation and read again why the close friends of Nancy Block-Zenna wanted to start this foundation.This is what their words read,It  is our mission and our goal to ignite interest in triple negative amoung researchers,physicians,educators,and scientists,to identify the cause and discover new and EFFECTIVE treatment options.It is our inspiration that all of you join us to find a better treatment options and eventually a cure.They did not ask us if we believed that chemo was the best choice of treatment for triple negative.They started this foundation in honor of their dear friend trying to find answers for this deadly breast cancer.

    If you are feeling that this foundation will loose its way and not be here to greet all new members and to be a place to come to be an inspiration to each other you are so so wrong.These women have worked too hard to all of a sudden not be here for everyone just because they chose the lumpectomy over the masectomy.The first thing that we all realize is this.We are all different.It may or may not come back .But how long do you think that it took for the scientist to realize that old fashioned chemo was the best choice of treatment for triple negs. The biggest problem that I had with this foundation is that when I joined there was so many wonderful ,different ,informative things to learn and discuss with these ladies that I wished so much that I had been given all of the information prior to my sisters diagnosis. I wanted every new member to also be given this information at the time of there diagnosis. And guess what .That is happening now on this foundation ,if we are able to get to them right after thir biopsy descovery.So many of the ladies find this foundation immediatly after their diagnosis.This foundation has grown in leaps and bounds just since I have become a member at the start of this year. And for us to have to worry about stepping on someones toes is just ludicrous. WE are trying with everything that is inside of us to help   the decisions for our newly diagnosed sister's to be able to get it right the first time.

      There are new members joining everyday.Is it going to get to where there are going to be so many members that every time that I choose to us the word pissed that I have to worry that I may be offending someone out there and get reppremended for saying that?.Because ladies ,I am pissed.I am pissed that this Breast Cancer has been out there for over 20 some odd years and it is just now that they are trying to discover exactally how to treat or deal with it.I am pissed that any of you have to put that god awful poisen that was invented years and years ago in your body because that happens to be  all of the amunition that they have to fight this horrible beast. I am not going to apologise to you ladies out there,because to be honest,no one at any time said to you that because you chose to have a lumpectomy that it was the wrong choice to make.Our options are put out there,but to be quite honest,our information is only the top of the iceberg.They do not even bother to tell you all of the side effects that the poisen being put into the body can leave you with.They leave the choice up to us ,and I suppect that they do not explain everything to us because that is how they live with themselves.They can say that it was our decision to make and we chose that one.I'll just bet also that if it was their mother,sister,or wife that got this deadly subtype that the removal of the breast would be their only option.This sub type of breast cancer is russion roulette.No one and I repeat ,no one really knows if it is going to return,but if my sister had been given the right choices at the right time to give her a better % that it would not for a fact return then we would have taken it without any question.So if you ladies are going to get upset with any one,let your anger be directed towards the medical professionals  that are out there every day gambling with our bodies and how much we can endure before we succumb to the hidious treatment that we have to endure just to try to LIVE. And for this I will not apologise to anyone for.I want my sister to live and I want every woman diagnosed after her to live. And somehow we have got to go down that pathway and not leave any brick unturned.The answer just may be under the one brick that we chose to not turn over because someone wanted to be able to step on that one.This foundation is not going to change. All of us out here are going to be right there for any lady that finds us,to help her to get through this journey that we nor her chose to take.But thank goodness our sisters were here to take our hands and to help to guide us as best they can and now we are ready to take the hands of our next sister and PAY IT FORWARD.Lots of Huggggssss    Billie

Your ONC is wrong, you will get relieve by talking to us, knowing what to expect and knowing what clinical trials you can join, knowing you are not alone, we will fight this evel together, we will feel pain and despair together, we will get educated together and WE WILL ASK QUESTION AND DEMAND ANSWERS AND GO TO SYMPOSIUMS TO DEMAND CURE!!!!!!!!!!!!!!

 

 

I went for my f/u Thursday and was told, almost the exact wording of the study "It is prudent for a young woman - (under 50, I'm 48) - to consider bilateral mastectomy." I gave him a highlighted copy of the study, and he felt he would not have changed the order of the procedures I had...and that the bilateral mastectomy is more of a long-term decision than a short-term one. His argument for mastectomy included the emotional stress of false positive scans and ensuing biopsies. I will see the "go to" guy in Baltimore this winter.

 

K  

I was presented with statistics that put a lumpectomy no more risky than a mastectomy for my case.  I was ready to accept a mast but don't feel any regret doing the lumpectomy at this point.  I was 55 yrs old at diagnosis, and officially was menopausal in Dec 07 at end of treatment (ie, no periods for 12 months).  No other cancer in my family.

I feel that if I have a recurrence I will be PLENTY p--d off but won't regret having the lumpectomy vs. mastectomy... it's not a matter of vanity or self-image... I simply think my onc MD and surgeon gave me the facts as they knew them here in Minneapolis and I made the best decision for me...

that said, I do believe there is HUGE room for improvement in how we are being treated from the moment that cancer is diagnosed.   This site does a wonderful service to all of us out there...   so it's 20 months of survivorship for me and I am doing everything I can to stay healthy ie, more Vitamin D, Fish Oil tablets every day, working on my BMI, etc...    Dixie

   What treatment women get is up to them, I just want the doctors to get their stats right.  TN is high risk BC and needs to be dicussed that way.  Too many docs are discussing treatment before pathology reports are even back....not good.  If you're TN, you need someone who understands that it's serious and guides you accordingly.

 

Keep fightin' the good fight!

 

Ronda