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2013 Sister Warriors

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  • new2bc
    new2bc Member Posts: 253
    edited February 2013
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    PositiveThnking,

    I am sorry that you had to join this club. Good luck on your surgery on Monday. I was just wondering how you were diagnosed since the MRI did not show anything. Did the mamogram show the tumor? My understanding was the MRI would be more accurate than the mamogram. I have heard that ILC does not show up in some cases. My mamogram showed only calcifications but the MRI showed the cancer. Try to get some rest this weekend before your surgery.

  • kjiberty
    kjiberty Member Posts: 687
    edited February 2013
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    NewBC:  I wonder why he did not recommend the Onc. test for you.  I was stage 1a, grade 3, no node involvement.  My score was 28.  I was 56 (a year ago) and still considered young enough to have the test.  I would question your MO on this.  The RO does not decide on chemo, only radiation.  My RO told me I would NOT need chemo and the Onc. test deemed I did. I had TC x 4.  I have no regrets about any "what if's".  Check again with the MO.  I, too was ER+, PR+ and HER-.

    Momof5:  You may have only gotten 13 days approved because if you are having surgery, that's what the BS put on the form...you only need 2 weeks.  That's what mine said.  However, it can be extended.  I had to go through the same crap.  Don't get too worked up about it. I was able to go back to work 2 weeks later, slowly, but surely

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2013
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    Hi kjiberty your hair looks great. We have similar dx. I meet with BS/Oncologist this week I need to ask about the ocotype test. Thanks for the heads up. I don't want to rush into rads & missed a course of attack.

    My MRI showed possible new t that full breast rads should destroy. So I want to be sure I'm not missing a step.

    Learning to live for each day & not get ahead of myself. Breathe Control issues- this roller coaster has no steering or brakes ugh eeee hands up weee! I'll enjoy today! My choice :))

  • lemon68
    lemon68 Member Posts: 301
    edited February 2013
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    I am having some high anxiety today and yesterday regarding my ILC. Pathology also showed DCIS and LCIS.. I am to meet with BS on Thursday to discuss my next step that he feels is rads. I am going to insist upon a MRI, I need to know what is in the left side and if there is more lurking in right. I think if I have anything at all in left I am going to just fall apart! I am scared if I do rads I will do damage, it will come back and my recon choices will be slimmer. Do I just let them take them both now? Do I just get rid of the right? I just dont know what to do.. I want another 44 yrs and I am not sure I can stand this overwhelming stress the rest of my life waiting for it to return. How are you all making your choices? I went and read a thread on this site that asked your age at DX, I was shocked at how many gave their age at first DX and then at 2nd..  many at 2nd were Stage 4! How the hell does that happen if we are watched so closely??? I dont get it. I thought we would be monitored like hawks moving forward past treatment?? Why then do so many on 2nd DX have stage 4 and many with mets?? Yep, I am freaking out tonight. I try to be calm or I guess I act like I am fine all the time but I am not fine.

    I wish you were all here with me right now so we could rant and rave and scream and cry until we laughed. No one understands unless they are going through it. I just dont know what is the right thing to do, just want to be here one day to see my grandchildren and be with my hub. I dont want to hold all my cards as I am not sure how I am playing is the right way to play. damn it!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2013
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    Oh (((lemon68)) rant rave cry laugh. It's ok to let it all out we are here with you. We all are fighting this dx that feels like our bodies have betrayed us. But we fight with the best info we have asking the best questions to our team. Our bodies, our c are all unique. But our desire to live & kick this is STRONG!

    Prepare your list of questions for Thu ask for the MRI then make your balance sheet. Only you determine what is right for you. But do enjoy life - best revenge is to live life fearlessly. Yes there will be moments but do not let c take away your joy.

    Write a book for those grand kids & love story for your hub. Make it your special fight on project capture moments in pics ... Breathe LOL goodnight mr moon zzz

  • LuvSnow
    LuvSnow Member Posts: 138
    edited February 2013
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    kjiberty - did you have a bilateral mastectomy as well? And only two weeks off? I know for a fact that my BS put down a little over 6 weeks. I am hoping Paula was right and they only approve it a week at a time...or maybe they are waiting on additional documentation.



    All I know is that I don't think 2 weeks is enough time to fully recuperate from a BMX w/TE (and neither does my BS). Someone without breasts must have come up with that rule ;)

  • TMM60
    TMM60 Member Posts: 121
    edited February 2013
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    Hi new2bc- I agree with kjiberty (whose new hair is lovely!). It sounds like you didn't get enough information from your MO about the Oncotype test and why he feels its not indicated for you. Ask him to show you the stats that he ran and explain them to you. (I was a flustered at my MO appointment when she started talking about the possibility of chemo that when she showed me the statistics, I had to ask her to re-explain them to me 3 times, she was happy to do so.)Then ask him what factors he considered in making that recommendation for you. Just give his office a buzz and ask to talk to his nurse- or- if you've got a Nurse Care Navigator- reach out to him/her.

  • TMM60
    TMM60 Member Posts: 121
    edited February 2013
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    lemon68- I wish I was there with you tonight so we could have that crying, ranting and laughing session! Know that I am sending you many virtual hugs and positive vibes!

  • new2bc
    new2bc Member Posts: 253
    edited February 2013
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    lemon68,

    I was first diagnosed with ILC in my left breast after biopsy. After I researched ILC, I read that it is sneaky, does not show well in mamograms and it is bilateral. My decision was easy for me. I decided to go through double mastectomy. I did not want to rely on frequent mamograms, MRIs and wait for the results. My mamogram showed calcifications and I could not feel any lumps. My MRI showed another possible area besides the original biopsy area. After the surgery, they found 2 additional cancers (4mm) that did not show up in MRI. My dense breasts did not help either as far showing abnormalities in future mamograms. After my surgery, the pathology report showed IDC instead of ILC. The lab that did the testing for the biopsy did not do an additional test to distinguish between ILC and IDC. So I was misdiagnosed. But I am glad I did mastectomy especially in the left breast because there were 4 cancerous areas.

    As far as stage 4 recurrence, the way I understood my oncologist last week is as follows:

    Every time we feel pain in other body parts, we need to see if it responds to pain medication and rest. If it does not go away after a few weeks, we need to report it to the doctors. Then they do further testing such as a PET scan. My oncologist told me at that point if it showed up in the PET scan, it is automatically stage 4. I guess PET scan does not show very small cancers. I know it is very scary. This is the way I understood it. If anyone else has more info, please correct me. 

    I guess the way i try to calm myself is that anytime accidents could happen and there is no guarantee in life. You can leave your house and be hit by a car and die. I hope that you will be able to make the right decisions for you.  

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited February 2013
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    PositiveThnking

    You have come to the best place I to am er/pr- and her2+ grade 3 stage 2b tumor 3cm . I am scheduled for BMX Feb. 7. W/ tissue extenders. I don't know when chemo will start due to they want the final report which I won't have until the BMX. I understand totally. You can add me to your friends list if you like. I would love someone to talk to from time to time.{{{ hugs}}}
  • lalady1
    lalady1 Member Posts: 530
    edited February 2013
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    Hello Sister Warriors! Thank you Renee for this forum. I just got home from the hospital from left MX with an expander. Both lumpectomies in August and November 2012 showed both IDC and DCIS. In December I had a PET and bone scan, which was a scary, but encourage all to consider for peace of mind - mine were both negative. Then had a wire assisted biopsy on 1/11/13 to make sure rt breast was cancer-free, which it is (but dense tissue was hard to read). Hoping to avoid chemo, and stick with rads and hormone therapy. My first lumpectomy was 3 cm, the second was 3.5cm.

    I live in Los Angleles and work full time, never thought I would get/want a boob job, but here I am. Reconstruction sounds great, but the mx surgery wiped me out. I have family in VA, WV and AZ. Hear me roar ya'll!

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited February 2013
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    Oh lemon68, I wish I was there last night for you!  I've felt the same as you.  It is a lot to understand, make decisions.  Please do have a conversation with your surgeon to go over his (her?) reasoning on the course of treatment for you.  You should understand fully and be comfortable with the reasoning.  Ask for % of recurrence, if you are a candidate for other tests (to decide, confirm course of action), and have a sense of what their plan is to monitor you on down the road.

    Surgery is only part of the treatment, remember.  I tend to psych myself out a bit too when I read others dx, when someone shows up with BC in the other breast, recurrence, and quite frankly, so many are opting for BMX. It can make you wonder "Am I doing enough?"  I've got dense breasts too.  I'm 45, with kids 12, 10, and 8--I am not ready to check out any time soon.  But I had that kind of conversation w/my surgeon (as suggested above), and had some time to digest what he was saying, and I came to feel confident in the way we are proceeding, for me.  

    Also, I think I have come to accept that cancer is part of my life. Even if I was removing both breasts, I'd still need to be monitoring for it to show up elsewhere.  That's our reality.  Work with your dr. to identify the path for you to reduce to the lowest % for breast cancer showing up again.  That's what you can do.  Look at complementary efforts, from nutrition, to exercise, to visualization techniques and so on--that you can also do to get some control back.  We can go on with our lives; we can manage this.  I truly believe this.  We just have to work at it.  I'm going to clear the cancer from my body and work to keep it out.  End of story.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited February 2013
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    I came across this on a thread about oncotyping scores and deciding whether to get chemo, and thought it would be helpful for all of us to understand (and why my surgeon was not recommending a bmx for me but is focused on reducing chances of it showing elsewhere in my body):

    Jun 23, 2012 10:51 AM LtotheK wrote:

    For clarification purposes, especially to the newbies (I was once one, too)--

    Regarding the comment: "If it recurs God forbid, I would have a double mastectomy and chemo if they then felt that was the best course."

    There are two kinds of recurrence.  Local, which would be treated well by the above, and distant, otherwise known as mets.  Mets are deadly.  As my doctor put it when I asked why we couldn't treat should this come back as a distant recurrence, "Because it is terminal at that stage." This is why the treatments are still so aggressive. Science just hasn't figured out who exactly will get those stinky mets.

    In my case, the grade 3 and LVI on initial biopsy (none on final biopsy) combined with my stupidly young age (39) at diagnosis pushed me to chemo even with a score of 12.  I know it probably wasn't necessary, but I couldn't be completely assured of that.

    Two years out, I don't regret anything I did.  I'm doing fantastically, nothing has really changed other than a calmer state of mind and a larger lust for life.  I am in menopause, we won't know until I come off Tamox if it is truly permanent.  That was devastating at first, but I also understand menopause is thought to be a huge factor in keeping young women cancer-free.

    I just wanted to clarify, not to contradict, but rather to clarify for folks like myself who didn't really understand the nuances at time of diagnosis and treatment choices.  It all happens so fast.

  • lemon68
    lemon68 Member Posts: 301
    edited February 2013
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    GROUP HUG to you all for posting as I was truly falling apart last night. One thing is certain I do get some peace from coming here and learn some much from my reading and all of you.

    Renee- Here we are tomorrow is 1 month since DX for us both. We certainly have come a long way.. and its far from over. I am only a yr younger, my boys are 19 and 13, both of us Ohio girls wish you were a bit closer,  you have talked me off the ledge a few times, hope I will do the same for you one day. I have a long list of questions for my BS. I need to know I am doing all I can do live a full life. Do you have a date of surgery yet?

    new2bc- the Stage 4 facts scare the crap out of me, you have explained it well. The truth is scary. I keep on digging into more info then wishing I hadnt read what I did. I will not stop educating myself just wish I was a bit tougher. I do not feel sorry for myself when I read all the others in much worse shape than myself, no one deserves any of this. How far out are you on your surgery? Did you end up doing rads after?

    TMM60- I do feel the hugs and vibes, I know its you and the others on this thread and the kindess warms my heart. I have cried alot but the tears for the kindess are joyful tears. WE are all lucky to have each other.

  • TMM60
    TMM60 Member Posts: 121
    edited February 2013
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    lemon68- I know you will be there for all of us when we have the trying moments that will come. I am so happy to have found all of my Sister Warriors. I'm glad this morning dawns brighter for you today. Perhaps someday we can write a book like "Eat, Pray, Love" about the trying emotional days that follow our first diagosis and call it "Rant, Cry, Laugh" Wink

  • Cynthia56
    Cynthia56 Member Posts: 12
    edited February 2013
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    BIG, TIGHT HUGS TO YOU ALL! 

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited February 2013
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    I went crazy today and decided to make a new me and cut my hair off. Getting the BMX Thursday so I needed a warrior haircut!!! What have I done? Hope you all can see my avatar.

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited February 2013
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    It keeps turning me around

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited February 2013
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    Kimberly~I love the haircut!

    I buzzed mine the night before 2nd AC. Now, 2 weeks after AC #3, I still have all the stubble. I'm not sorry I buzzed it though. It was thinning, and getting dry, and lifeless from the chemo, so a fresh start was in order.



    Blessings

    Paula

  • lemon68
    lemon68 Member Posts: 301
    edited February 2013
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    Kimberly, You did it and it looks great!! Its actually really cute, but I dont want to call a warrior cute, but you are :)

    You are going to do great on Thursday, and you are going to be just fine.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited February 2013
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    Good for you Kimberly!  

    Cynthia, I first read you message to read "BIG TITS HUGS TO YOU ALL!" Laughing

    Lemon68--my surgery date is Mon. Feb. 25.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2013
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    Kimbery196-looks good! Easy no mess no fuss do! Go warrior princess go!

    My dad's good friend took his razor to my curly locks..a sweet gift of luv....freeing&empowering :))

    Prayers & hugs for your upcoming surgery and for all February Warriors...

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited February 2013
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    Well during chemo if it starts coming out I'm buzzing it all off. My youngest gets the honors!i need to figure out how to turn my pic it shows right in my profile but in post it turns at one point it was upside down.>

  • luvmygoats
    luvmygoats Member Posts: 2,484
    edited February 2013
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    Kimberly - I lurk on this site, but your avatar is fine and oriented right to me. And has been OK on your previous posts.

  • lalady1
    lalady1 Member Posts: 530
    edited February 2013
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    Hi Kimberly -  avatar is cool. I had my mx and tissue expander on 1/30/13, came home yesterday with one drain. Won't know timing for rads or chemo until path comes back on Monday. Plastics dr told me chemo was "safer" on the skin, lol on the hair. Wishing you the best recovery. Make sure you have some help when you get home.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited February 2013
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    If I have to do chemo, I'm getting a Hit Girl wig (purple wig, like my avatar).

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited February 2013
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    Reneein,

    That the color everyone says I should highlight it with purple!



    Another note I had someone tell my daughter after 5 years of being with them they couldn't understand why we was all upset about me and why am I going nuts off and on crying for no reason and mad at the world the next hell she only has BC. Oh did I meant ion he lived here rent free for two years and spent every holiday and most of the days the other 3 years here. He was treated as a son. I supported him for 2 years!!! Come on now bailed out when things were going to change and he had to do something!

    Give me an some feed back please am I nuts or do I and the family have a reason to act strange and upset????

  • momtotenkids
    momtotenkids Member Posts: 37
    edited February 2013
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    Love your hair Kimberly! it looks very cute and yea you and your family have every right to be upset right now. And I wish we could say we just had BC like it was a damn cold! I have spoken the words out loud two times now and it is hard. So yea we are all crying and acting upset. Lots of mood swings right now. And it is OK! 

    Kjiberty-saw you were from Peoria. I was born and raised there and all my family still live in the area. I have been in Texas for about 28 years but like I said my family is still there. Most are in the Pleasant valley area off Farmington road and out toward Hanna city and even Farmington. 

    I go for my first OD appointment tomorrow. A Little nervous so I hopefully can get some sleep tonight. 

    Prayers to all!

  • momtotenkids
    momtotenkids Member Posts: 37
    edited February 2013
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    Met my OD this morning and got to see the final pathology report. I am grade 3 not grade 2 but still stage 1A and still ER+(80%)/PR(90)+ HER2- . She sent off the oncotype test and the genetic testing to see if I have the marker. Also drew hormone levels. I am also scheduled for a ct for some abdominal pain I have been having. I am so scared they are going to find cancer somewhere else! I know there is a corrulation between breast and ovarian cancer and my pain is below my right rib down to where I imagine my right ovary is. The good news is that the pain does come and go, it is not painful when she pushed on it and I have not lost any weight. Hoping it is just a cyst. 

    Question to everyone-how did you decide on what oncologist to see? Did your doctor refer you? I live in the DFW metroplex so there is many to choose from. I am wondering why did my Doctor send me to this Dr? Also how did you feel when you went to your OD for the first time? When you walked in to the office? Did the whole staff make you feel important? How about the DR? Did you feel like this was just a job to them? I liked my Doctor. She answered my questions before I even asked them but her office staff was very impersonal and I just didn't feel important. I don't know how to expain it any better. I guess I want feel like I matter and I am not just a patient so was wondering how you all felt.

  • lemon68
    lemon68 Member Posts: 301
    edited February 2013
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    Hi Momtotenkids- Stage 1A is what we all hope for!! That is really good news, I am hoping I will also be the same when I go on Thursday. Grade 3, dont worry I was told the stage is more important then the grade. Your ER PR is high, me too..also a very good thing very treatable and HER2- is the icing on the cake. Its a good report, made me smile when I read it.

    I have 2 ovarian cysts on the left side. I had a uterus ablation 14 months ago, no more periods for me, best thing I ever did but the cysts do act up. I can almost push on them when they are bothering me but they are tiny and do no harm, hoping the same for you.

    I dont get to pick my oncologist. Once I see BS this week they send me over, I will go to a Cancer Center where they treat all types of cancer, it is a beautiful facility about 20 minutes from here. I looked it up and there are multiple oncos each specailizing in different types. I will also be assigned a radiation onco, remind me are you doing rads? I am sorry I dont remember where you are in your journey your signature doesnt have it.

    I think you had better like the DR and it sounds like you do. I also think you should feel specail and important because you are, this is your life they are dealing/saving. If you choose to get a 2nd opinion you might find what makes you feel comfortable elsewhere or they might have just been having a off day. My understanding is most places they are angels to the patients. I have a friend that had anal cancer and she still stops by (she is cured!!!) to see the girls at the office, she loves them.

    Your news is good, smile tonight.