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2013 Sister Warriors

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  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Hi momof5inva. I was wondering that myself.  I guess that's a question for our BS, and maybe someone on the board can answer that question.  I have read that some people who had the option to choose lumpectomy but went with a mastecomy did find additional cancer in the breast, so I am thinking the answer to your question is probably yes. Since you are opting to remove both breasts, your key to finding out if cancer is spreading is the lymph node check at surgery (if I am understanding this process correctly).  

    It's a lot to wrap our heads around, isn't it?  I know this is very recent for you, but one thing you can do with concern and upset responses is to turn them into was ways that people can help.  With five kids, you're going to need a support system to get through this, so channeling concern into action can be a positive way to deal with reaction.  I've got kids that have to get to and from activities, so I'm already figuring that piece out. And, I've asked some friends to set up a help coordination site for me at http://www.lotsahelpinghands.com/

  • Cuetang
    Cuetang Member Posts: 173
    edited January 2013
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    Joining the thread here ladies after some lurking around the boards. I was diagnosed on Jan. 11 after a core biopsy with both IDC and DCIS on the left breast. Had an MRI as well that showed a suspicious spot also near the original tumor. The MRI also shows what might be fibroadenomas on the right side (does the news just not end?). First breast surgeon says I can go for either a lumpectomy or a MX, but seems to discourage a BMX. She also gave me an option of doing a biopsy on the right side or not, but really thinks its a benign fibroadenoma.



    The past two weeks has been a horrible roller coaster of emotions, lack of sleep. I'm meeting with a second surgeon this week then will decide on the plan. I'm not even sure when I see an oncologist at this point?



    Sorry for the ramble...

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Hi Cuetang. Usually I love roller coaster rides, but not this one.  Glad you're getting a 2nd opinion.  I haven't dealt with oncologist yet--I think because surgery will determine whether I need chemo.  But, I'm going to ask about who/what might options are for oncologists next.  If you get a lump., you automatically get radiation. 

  • Cuetang
    Cuetang Member Posts: 173
    edited January 2013
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    Thanks ReneeinOH for starting this thread. It might not be an easy road ahead of us, but we will kick the big C in the rear end! :)

  • Janipani
    Janipani Member Posts: 5
    edited January 2013
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    Add me to your Warrier 2013 list.  Just had the axcillary lymph node dissection (ALND) on 1/7/13, and none of those were cancer, however 3 of the 6 sentinal nodes showed cancer.  Can't start chemo till the drain is pulled.  Anyone know how long it usually takes after ALND before chemo can start?  I'm understading it will be 6 months, but not sure what flavor chemo yet.

    JLO

  • slv58
    slv58 Member Posts: 486
    edited January 2013
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    Our community is growing, together we are strong! I just want to share with others something that had a profound effect on me. When I had my biopsy I was really overwhelmed with fear and payed on the table with tears running down my face. I think it not knowing what the outcome would be, the possible pain and the reality of what was happening made me realize that I needed to find some way to relax and get a better frame of mind-this is going to be a long journey. I'll try and shorten this, I started looking into 'guided meditation' and just purchased 'Bernie Siegel preparing for chemotherapy, surgery and other treatments' and just listened to it up until the end of the chemo as that is my first form of treatment. I was totally shocked at my reaction! Again tears started falling,but they were different-as if someone really got what I've been feeling/fearing and yet the realization that I am in control and am ALLOWED to heal. Sorry if this is long, I'm just hoping maybe someone else can benefit. I will try and listen to this daily and when in treatment. It can't hurt.

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Hi Momof5inva,

    When I had my sit down with my surgeon after my lumpectomy, we asked if he could be sure there wasnt more ILC lurking in the breast, he said no, the only way to know for sure is with a masc. He said after they go through tissue in 40% of woman they do find more. Not so easy to hear when I just had a lumpectomy but I guess that is what the radiation is for. Path reports shows LCIS and DCIS were among my lurkers, hard to sleep at night wondering if I have more ILC in there. My area was very small and totally undetectable, microcalcifications were the clue something was under there.

    At this time I am also 44 w/Stage 1 Grade 2 but unlike those on the this thread I am ILC. I have a node biopsy this Thursday hoping my stage doesnt change. I have spent countless hours looking at the alternative to the lumpectomy. I have only decided if I have to do this again they will both be removed, I want to live with some peace. I know that surreal moment, I was a wreck until about a week ago not sure why but I think I accepted it. Now I am not going to say I am not having my moments but I am ready to fight with all I have. I am sorry you are here and I wont say it gets better I will say coming here and learning is enpowering me. I read Renne's posts and she was DX same day as me and she was so strong in my eyes by her posts, it helped me to pick myself up and fight.

    Take care and let us know how you are doing.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited January 2013
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    Welcome momof5inva.

    So sorry that you received a DX of BC, but you will find lots of good info & courageous sisters.

    Waiting is the hardest part of this journey... seems like path results come in puzzle pieces 1 at a time until your BC team have all the pieces some from biopsy, screenings, tests, & surgery.

    Take a deep breath try to relax & be good to yourself. ((hugs)) You will be fine & we are here 4 each other! A band of warrior sisters!

  • LuvSnow
    LuvSnow Member Posts: 138
    edited February 2013
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    Hi ladies! So many new names, I am so bad with names.


    I guess all the info does come in pieces. I just want to know more. I will feel better when surgery is over. Fortunately (or unfortunately), due to my own personal history, plus family history, I have educated myself enough to have a basic understanding of the types of cancers, procedures, etc.



    I was not shocked in the least when I got my results, and it took me all of two seconds to tell my breast surgeon that I wanted a BMX (though a BMW convertible sounds better ). I feel comfortable with that decision. I don't feel good leaving them. And I won't miss them....had 5 kids, nursed them all, they did their jobs...poor gals are just not what they used to be either :)



    I am not angry or freaking out right now....which I think is bothering some of my family. I am a little sad, more for my family. I know I am still processing this, and it is surreal. I don't think about the "what ifs". It would make me nuts. I can only worry about what I can control. It sucks, ya, but, what can ya do.



    I am telling you ladies, for me telling people is the worst!!! They act all sad and seem really uncomfortable if i joke or try to look on the bright side. And is it just me, but people seem more fixated on the surgery itself, and not the cancer. Not that the surgery is not major, but the cancer scares me a heck of a lot more than the surgery!


    My hubby is good about not talking cancer stuff unless we are talking medical crap....or what size foobs should I get :) My 10 year old asked me if I was going to be double diva (guess he saw commercials for that show!!!). He has my warped sense of humor.



    LEMON68 - another 68 baby, yay!!! Thank you for that info. I know I have read posts that said that they found more "stuff" after mastectomy, but could not find stats. Will you be needing chemo? I am wondering what my path will be. I think I have accepted this, it's just weird to hear myself say "I have cancer".



    Anyway, it is nice to have these boards...I can ramble on and on and you ladies "get it".

  • OhhKay
    OhhKay Member Posts: 1
    edited January 2013
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    Hello Sister Warriors,

    I am 39 (40th birthday next week!) and I got my core biopsy results last Thursday - mixed type tumor IDC & ILC, Grade 2, Stage 1 (1.5cm). My BS said mixed type is usually treated like IDC. Still waiting on hormone receptor status and will have MRI this Thursday. While lumpectomy is on the table as of now, I am leaning toward BMX for so many reasons but still gathering info and perspective. 

    I am so glad to have found this community. Lemon68, I liked your comment that coming here and learning is empowering. There is strength in numbers. And solace in sisterhood. Glad to meet you all.  :)

    -K

    Dx 1/17/2013, Mixed Type IDC/ILC, 1.5cm, Stage 1, Grade 2

  • momtotenkids
    momtotenkids Member Posts: 37
    edited January 2013
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    Hi all guess I am joining the club too. I was diagnosed on Jan 7th with IDC grade 2. I had a lumpectomy and nodes removed on Jan 14th. Got results back on Friday 18th and pathologists wants more clean edges so back to surgery today at 4:30 they did say I was at stage 1. After that I have an appointment with the oncologist but the surgeon is recommending radation. I had a routine mammogram done the week after Thanksgiving and out lives were turned upside down very quickly after that. I am coping with the help of xanax. Not needing it all the time but once in awhile the anxiety gets me. I am 52 years old and still have 7 kids at home. I home school most of them and hoping to be able to continue to do so. I know they say i need to stay positve but boy is it hard! My goal is to beat this and get back to my every day routine including my karate lessons as soon as possible. It is nice to meet all of you but sure wish we were coming together for a more fun reason like the new millionaire club! LOL! 

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Hi OhhKay ,Sorry your here. Happy 40th early for next week Kay! I am wondering how common it is to have both ILC and IDC, seems it may be fairly common. I had ILC but also LCIS and DCIS, I guess our bodies just like making things, damn boob is running my life! I had a lumpectomy and as the days pass I am freaking out about the left side, seems neglected and I am scared it is there too and they just didnt find it yet. I wasnt even considering a BMX but if its in both then they need to go, I dont want to them to go but the anxiety may prove more than I can handle. I am scared if I do the radiation I will damage the tissue and if it returns not have as many options. I have yet to learn enough about all that but I am working on it.

    Momof5inva You are so right, to say 'I have cancer' is tough, I feel like I cant get the words out or I almost cant catch my breath. It just sucks. I feel so bad for my kids and parents. I just keep acting like its all fine around the kid and my parents. I know it is breaking my parents hearts. Chemo has not been brought up to me unless my nodes are bad, surgery is Thursday (nervous) I had no invasion of lymphatic system on my path reports so I am thinking only good thoughts. Until they have info from the sentinol node biopsy I am at a standstill.

    momtotenkids- Ten kids, with 7 at home, amazing!! That is great. I hope your surgery went well today. I was given the xanax also I have not been taking it but when I do it does help, makes me too sleepy. I have my strong moments and my moments I feel like a little child and just fall apart. Its life alterning physically and mentally. Looks like I am on the radiation track also if all goes well with nodes. As I said earlier just want to know what kind of damage it causes if I have to do this again one day, I sure hope not but I feel like I will be looking over my shoulder for the rest of my life.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Hello and welcome to our new sisters.  We all have some overwhelming things to think about.  Here's the thing.  We take our time.  Get the information we need to understand what is going on.  Have the conversations we need to have with our drs. and others. Give ourselves time and opportunity to make our decisions.  We don't have to have this figured out today, and while it can give us peace of mind to have a course of action/sense of where we are going with our cancers, most of us need this time.  We need to be comfortable with our decisions.  Sometimes when things get too difficult, I just remind myself I need to just get through this day (and if really difficult, this hour).

    I got the genetic test results today--negative, so now my chances are back down to 12% for (future) BC in the healthy breast. If I remove the healthy breast, then my chances go down to single digits. If I keep healthy breast (just mastectomy on left side), then I have to do MRIs every year. If I get both removed, no annual MRIs, but annual check ups. This is what the 1st surgeon says. I plan to see the second surgeon (still haven't picked one!) and see what he says. 1st surgeon said she wants the BART test run on me, but given that I was negative for the others, I'll probably be negative on this result as well.

    And, I could put lumpectomy back on the table, provided I get my "areas of concern" biopsied to make sure they are not cancerous.  But, I just can't see putting myself through that, and even if all those areas are B9, I would worry, so a mastecomy makes sense to me. Can't shake the feeling that I am being hasty by making a decision w/out specific evidence that at least one of those areas are cancerous. 

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited January 2013
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    I was dx 12/19/12 with IDC grade 3 stage 2 I am er- pr- her2+ . Tumor is just under 3cm. Scheduled for bi lateral mastectomy feb7 with reconstruction. It will start with tissue expanders. I am scared beyond scared. Totally exhausted. I am from southern Ohio. Married 3 grown children two grandchildren. I will be 48 on the 1st of feb. wondering and waiting driving me nuts.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Wow Kimberly, it is a lot to deal with.  I haven't gotten this, but took momof5inva's suggestion and ordered this CD: http://www.amazon.com/Getting-Ready-Bernie-Siegel-M-D/dp/1401903983  It may be a resource, or a least a distraction?  Another way to approach what's going on?

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited January 2013
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    Does everyone else feel like they have lost total control? I just want to feel like I have some control. BC sure has changed everything.

  • Mermaidia
    Mermaidia Member Posts: 12
    edited January 2013
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    I received my diagnosis on 12/28/12...

    my treatment plan is chemo first followed by surgery.  Haven't decided which surgery option I'll choose, it will partly depend on the results of genitic test....

    Lori

  • Speedy4
    Speedy4 Member Posts: 44
    edited January 2013
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    I was diagnosed 12/7/12 and am still waiting for test results to help decide surgery. I hope to get that info today as I had an MRI guided biopsy on Thursday last week. I have twin boys who are 8 and I want to be around for them for a very very long time! I am so thankful for this discussion group and the amazing women who have unfortunately been forced to be a part of it.

  • Cuetang
    Cuetang Member Posts: 173
    edited January 2013
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    Fellow BC sisters, hang in there.  In the next few weeks, I'm sure we will all feel a bit more grounded when we work our way through decisions, surgeries, and treatment plans. 

    Kimberly 1965 -- I'm with you.  I feel that BC has stripped all control that I have with my life right now and I absolutely hate it with a passion.  I'm trying to claw my way out of this hole, and the ladies on these boards have been great in offering words of encouragement and honest opinions of things that can happen next.  I'm confident that we will feel more grounded once things start moving forward.

    Mermaidia/Speedy4 -- good luck with the results of your tests!  I'm waiting for my genetic test right now.  Another puzzle piece to wait for.  I hate waiting. 

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited January 2013
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    Renee~I just started chemo in December, so I consider myself a 2013 Warrior, as this is the year I kick BC to the curb?



    I live in Reynoldsburg Ohio, and am being treated at the Stephanie Spielman Comprehensive Breast Center...Wonderful place!



    I see you are in my area. Do you mind saying where you're being treated?



    I got my 3rd AC on Friday. I go every 3 weeks, then 12 weekly taxol.



    Blessings

    Paula

  • Speedy4
    Speedy4 Member Posts: 44
    edited January 2013
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    Cuetang~my genetic testing took over a month! Hope you get your results sooner!

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Paula, I live in Westerville.  I haven't decided where I'm going to be treated--was diagnosed at St. Ann's and have been to OSU (SSCBC).  You are most definitely a 2013 Sister Warrior!

    Kimberly, I do feel that way, but am trying to get some control back.  I've seen the phrase "lost my mortality virginity" a few places, and I think that is a little of what is going on for us.  We all know we all are going to die some day. However, we've just been given a situation that changes that abstract thought into something very, very real. Just because this has happened to us does not mean that our dreams and hopes for ourselves and our future are dashed.  But, we've got to work at it. 

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited January 2013
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    We decided to hold off on genetic testing for now. Money will be real tight so after I'm able to work I'm going to get it done so my kids will know if they should be tested. My family has a long history of bc but I'm the first in my generation. My emotions are crazy. I have other health issues but this one grabbed ahold and I'm looking for a way to break free. I do not like this alien controlling me. Hang tight girls this rides gonna be a wild one but we can over come! Each one of us one at a time but together!

  • Janipani
    Janipani Member Posts: 5
    edited January 2013
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    Hey momtotenkids Looks like you're my "C" sista - we both had surgery on the 7th.  Loved your kick butt attitude.  I used to be a triathlete, and now it's all I can do to get out of the tub not using my right arm with the hangy down drain thing-a-ma-jig...now that makes me laugh.

    I to have some uncontrolled crying (anxiety) and occasionaly use an Atavan which helps me keep those crying spells to a minimum, if I ever remember to use them.

    Does anyone have any idea how long it takes to heal the drain hole before they'll do chemo?  I'm hoping to start sometime in February assuming no problem pulling the drain on 1/31 if not before.

    Janice

  • melissa119
    melissa119 Member Posts: 127
    edited January 2013
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    Hello ladies.



    Just reading through some threads and came across this one. Figured I'd give you guys all some words of advice and hope since it looks like you have pretty much all just started this journey. I was Dx feb 2012 after first mammo, diagnostic mammo, ultrasound and core biopsy. I was shocked to say the least. I was only 36 with two kids, 9 and 6. Well I never thought I'd get thru but here we are almost a full year later and I have been thru all the Dx and scans and axillary biopsy, had a BMX in may with tissue expanders placed, started chemo in June and finished chemo in nov. I never thought I would be at the other side but it does happen and is doable. I still have to have my implant surgery but am done with active treatment. I am triple negative so I don't take hormones meds either. You can get thru this and no matter how bad you think it is going to be whether it be the surgery or treatment it is most likely not ever as bad as you are thinking. Really. I took care of my two kids all summer while on chemo and neither of them to this day still know anything about what was going on other than I had surgery when my mom moved in to help. Anyway. If anyone needs to ask any questions of someone who's been thru it and who was where u all are at this time last yr please ask away.

    Have a great night and take it one day at a time. The waiting for everything to get going is the hardest part

    Melissa

  • momtotenkids
    momtotenkids Member Posts: 37
    edited January 2013
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    Looks like we got a great group of ladies here. I was telling my family aboout you all they all couldn't believe that I found a group like this. Support is what we all need right now and I think getting it from each other will be wonderful. I am trying to be brave and strong for my family so I keep a lot of fear hidden. Having a place to discuss everything openly without upsetting my family is what I need. Just knowing that I am not the only one going through this is comforting all though I wish none of us were having to deal with this. 

    I hjad my second surgery yesterday. Everything went well. I was in recovery for less than an hour. I go back to see the surgeon on Monday. I am debating on getting the genetic testing done. My grandmother and my mom both had bc and found out that my dads sister and one of her daughters had it too. My oldest daughter is wondering if she should get it done or wait and see. So many questions right now! 

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited January 2013
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    Momtotenkids I wanted to say if you get the genetic test and show you have one of the genes your family can use your test to look for the gene in them. That way they know which one to look for and it's cheaper on them. We just choose to wait for money reasons. But I an going to get it done so its cheaper on my family testing for it

  • momtotenkids
    momtotenkids Member Posts: 37
    edited January 2013
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    Kimberly1965, my doctor has recommended I get it done but I have not checked to see if my insurance will cover it. If not then I probably won't get it done. Money is tight for us and the hospital bills are starting to trickle in now. I would like to know for my oldest daughter's sake. She is 30 and has implants. I also have two sisters that need to know although one said she would rather not have the information. There is just to much information rattling around my head and it is hard to get it all organized. I finally started a diary/journal to help keep up with some of the info. I guess my next step is to call the insurance company.

  • pacools
    pacools Member Posts: 35
    edited January 2013
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    Hello ladies, I was DX on 1/10 and am scheduled for a lumpectory on 2/5 with a sentinel node biopsy at the same time.  I had my stain results back within 2 days of the core biopsy to confirm the cancer in the tumor. It seems a long time to wait for results from a 12/31 surgery lemon68.  ReneeinOh brings up a good point we all get to the same decision point sometime. Radiation is a given not sure if we have to pause for chemo until we know the results of the sentinel nodes. I am remaining positive but this does seem like forever before my surgery.  My best wishes no prayers to all of us in this crummy club.

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Thank you Pacools.. yes it all sucks, the waiting is so wrong. I have my SNB tomorrow and I am so nervous today, emotionally not so good. I just want my normal nice life back. Your right the node info is such an important piece of the puzzle without that info we cant move forward.

    Good luck to you on 2/5, I know we will all be here for you.