Fill Out Your Profile to share more about you. Learn more...

2013 Sister Warriors

Options
14647484951

Comments

  • Monis
    Monis Member Posts: 309
    edited January 2014
    Options

    Thanks for the welcome Renee!  I may not post very often but I absorb tons of information here and add my two cents worth whenever I feel I have something to contribute. 

  • LoriS22
    LoriS22 Member Posts: 2
    edited January 2014
    Options

    Hi ladies,

    I'm back on line. My port was installed yesterday. I cried just as they wheeled me into surgery as the realization of having cancer overwelms me at different "milestones". Today I removed the band aids and looked at my new life. Scares me but the idea is to survive right? Doctors need to shrink my tumor before they do surgery because they need to get clean margins and I have breast implants so they don't have a lot of room.  I still may loose the whole breast even if they can shrink the tumor. PET scan shows one lymph node lite up. Jan 8th I will have the lymph node dye test and node(a) removal. Then chemo should start the following week. I still don't have the Her2 results back, lab had to rerun it! So still waiting to find out if I'm 3neg yet!

  • Cuetang
    Cuetang Member Posts: 173
    edited January 2014
    Options

    lori-- hang in there sister!  This BC road is like an awful emotional roller coaster that you can't get off of (I generally hate roller coasters anyways).  You've already taken the first step, you'll know how strong you really are (yes, plus the battle scars)....deep breaths. (Huuuuuugs).  On a side note, I think a number of folks (myself included) got a FISH test, where they test further to see the HER2 results because the first test was inconclusive...it shouldn't take too long for the lab to get that back.

    Monis---adding my welcome as well!

  • GwennyMD
    GwennyMD Member Posts: 68
    edited January 2014
    Options

    Happy New Year Fellow Warriors

    I have not been on the boards much during the past few weeks but I try to check in. 

    For all of you new warriors, remember that this is a war that we are winning every day.  There will be some good days and some really bad days, but you can get thru it.  Your faith, family, friends and this large BCO community will be there for you.

    For all of you who are at or near the end of your battle, I pray that 2104 will be a happy and healthy year for all.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited January 2014
    Options

    Joined: Aug 2013Posts: 359

    Post a reply

    Jan 10, 2014 09:47pm ndgrrl wrote:

    Hi Everyone. been awhile since I last posted. Been busy trying to get unemployment which is taking what seems forever and my old job is fighting it, saying I voluntarily quit( they eliminated my job) and that I was not available to work( I was on a dr ordered medical leave) grrrr

    I decided to get a 2nd opinion and saw a new Oncologist- I really like him- very young but took time to answer all my questions and kept assuring me I would be fine and patting my knee, I mentioned to him my older sister died in 1999 from stomach cancer and how I had a cousin age 45 - a niece age 33 - me age 44 and my older sister age 60 all diagnosed in 8 months time. 

    He said please try to get your sisters records. He said new studies are showing a genetic link between some breast cancers some stomach cancers.

     I was not sure how to go about doing it but with the help of my niece and my sisters husband signing for it I was able to get a copy of her pathology report showing what type of stomach cancer she had. I mailed to my oncologist. He must have looked at it right away as his nurse was trying to get ahold of me. Hubby relayed the message so I stopped at the cancer center as I happened to be at the rehab center and the oncologist had a short chat with me-- He said do not worry- I don't want you to worry- but you need to be genetically tested ( I had been BRACA 1 and BRACA 2 tested and was negative)  he said you need to be genetically tested for E-cadherin.  He said my sister had the type of stomach cancer that is also associated with lobular cancer- My cancer is ductal but he still wants me tested and if I am positive I will be tested for stomach cancer regularly.

    Been feeling rather bummed since I read my sisters pathology reports from way back when she was only 41 and relived what she went through before she passed in 44 and now to find I may be genetically linked to get the same things is really hard to swallow. :(

    I still am a bit in shock over all this news and it really scares me- I am trying to get my genetic testing scheduled- he said its not an emergency but get it done in a month or two.. Then patted my knee said you will be fine- do not worry now.. 

    I really hoped 2014 would be better.. 

  • L2girl
    L2girl Member Posts: 58
    edited January 2014
    Options

    hi, ndgrrl, glad to see you back. It's been awhile.

    Sorry to hear about all you have been going through, what with your unemployment and now this business about the genetic testing, and your sister and everything. Sorry you are feeling so bummed. I wish I had something more to contribute, but all I can do for now is send you a great big ((((((HUG)))))). Let us know when you get your testing done.

    Hang in there.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2014
    Options

    ndgrrl, hang in there. 

  • jeni72
    jeni72 Member Posts: 15
    edited January 2014
    Options

    hi ladies, was wondering if any of you can actually see your te ? My one side that is still giving me pain , I can see exactly where it is. I amthinking when I get my exchange they might have to rework that side. I am only at 350 ccs and have a way to go. Ps will only fill 100 to 150 ccs a month. 

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited January 2014
    Options

    ndgirl - I am not a lawyer but there is an employment section on this site and BC is covered by the American's with Disabilities Act.  One of the many frightening things about BC is that is is linked to so many other types of cancer.  It will be another couple months before I find out the results of my full bc genetic tests.  I too am BRCA neg. but there are others out there.  Sometimes I think I want to know and other times I don't.  

    Jeni - I don't know if I can see my TE but I can feel it with my fingers.  I can tell you exactly where they are.  

  • jeni72
    jeni72 Member Posts: 15
    edited January 2014
    Options

    is anyone feeling side effects from the tamoxifen? Nauseous and tired?

  • ndgrrl
    ndgrrl Member Posts: 645
    edited January 2014
    Options

    H Jeni- when I first started Tamoxifen I was very nauseous, that went away after a couple weeks. The tiredness took longer to go away. But part of that for me was not being able to sleep well at night because of night sweats. Effexor helped on that.


  • Cuetang
    Cuetang Member Posts: 173
    edited January 2014
    Options

    jeni72-- when I first started tamoxifen I was pretty tired. I have a thyroid issue, so I wasn't ever sure if I could pin that tiredness to tamoxifen or whether my thyroid meds were off or not.  Like Ndgrrl, it did go away..

    Ndgrrl-- 2014 WILL be better for us!  Hugs!

  • jeni72
    jeni72 Member Posts: 15
    edited January 2014
    Options

    thanks so much girls...

  • ndgrrl
    ndgrrl Member Posts: 645
    edited January 2014
    Options

    Cue- TY for the hugs-- Hugs back at ya :) I do hope hope hope 2014 will be better--I just have to get the genetic testing out of the way and hope that is good. Had to cancel the appointment because of the flu and could not get back in for 3 weeks- UFFFF- the waiting!! 

  • Cuetang
    Cuetang Member Posts: 173
    edited March 2014
    Options

    I had to scroll a page or two to find this thread!  Hope everyone is doing well!! Happy

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited March 2014
    Options

    I'm doing fine, living my new normal.  May get my ovaries removed (since I'm doing ovary suppression; onc gave the green light), but haven't made steps in that direction yet.

    How is everyone else doing?  

  • Cuetang
    Cuetang Member Posts: 173
    edited March 2014
    Options

    Renee--is ovarian suppression still giving you the hot flash side effects?  For me, I noticed once I started OS, my weight shot up like crazy (I'm not eating as healthy, but I didn't change any of my dietary habits).  I'm not really having hot flashes yet.

    I too am trying to live the new normal, but took another genetic test (Ambry's BrestNext) and did end up with a mutation (sucks); so I get to now get monitored for a whole host of other potential cancers as well (lucky me).  I guess instinct had me going for that bilateral mastectomy after all.  I am looking forward to a happier, healthier 2014, but check in frequently to see how everyone else is doing.   

  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2014
    Options

    Hi y'all

    Living the new normal and just finished 18 mo check ups.  Funny how you go in confident, but as the wait begins the suspense sets in...grr.  

    MRI was clear, but the AI which I thought was a gulp nonevent...was a surprise.  Cholesterol is high and significant bone loss in hips&spine.  How can a little pill eat up bones?  Ugh, exercise diet doing such a good job, but that darn pill is sneaky! So next week will have 1st infusion of Zometa...every 6 mos.  Discussed tamoxifen 1st and then switch to AI, but MOnwas adamant AI was the way to go.  Praying I have bones left in 5-10 yrs...

    Cuetang - pray recon went well ...healing and recovering speedy and minimal pain.

    Hope everyone's 4th of July weekend is full of celebration!  Family! Love!

  • ndgrrl
    ndgrrl Member Posts: 645
    edited July 2014
    Options


    Hi, I saw my surgeon last week and he will not do anything about the complex cyst I have that is located right next to where the cancer was. It was there before surgery but he didn't do anything then so didn't think he would this time either. New Oncologist wanted it removed so I guess I will see what he says when I see him in Sept. 

    The surgeon also did not recommend I remove my ovaries ( I am 45) he says excess fat causes more of a chance of reoccurrence then the ovaries do as fat produces more estrogen then the ovaries. This seemed a little far fetched to me, but has anyone else heard of this? 

  • keepthefaith
    keepthefaith Member Posts: 856
    edited July 2014
    Options

    ndgrrl, not sure about what produces most estrogen, but that is interesting. I have had my ovaries removed 9 yrs ago...cysts and fibroids on my uterus, so everything is gone and I am glad. My MO also mentioned the adrenal gland producing estrogen, so I guess there is no way we aren't going to produce some amount of estrogen. I thought by not taking HRT and getting rid of ovaries, it would keep BC at bay, but here I am. Good luck with your future treatments.

  • Survivorrobyn72
    Survivorrobyn72 Member Posts: 1
    edited July 2014
    Options

    Hi Everyone :-) I'm a 2013 Survivor!!!! Diagnosed with IDC stage 3 on 3/26/13 and had my last surgery on 6/25/14 just about 3 weeks ago. I've had chemo, radiation, and 3 surgeries.  I wish I would have become a member sooner. I have been in such a daze this past year and a half. Excited to get to know everyone!!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2014
    Options

    Survivorrobyn - Welcome 2013 Survivor!  Whew, what a year...you did it and we are glad you have found us.  Congrats on last surgery and speedy healing...and breathe.  Slowly our new normal becomes normal...cute dogies :) 

  • cakes
    cakes Member Posts: 89
    edited July 2014
    Options

    Survivorrobyn~ You are in good company on this sight. There are so many places to glean information and  to add your experiences to help your fellow sisters. Welcome welcome.

    Have a great weekend Sister Warriors!

    ((((BIG HUGS))))

  • pacools
    pacools Member Posts: 35
    edited July 2014
    Options

    I haven't been on this site in many months.  I am 18 months post surgery and continuing on my long-term maintenance plan taking my arimidex. I know many are afraid of the side effects but they are manageable most days. It gives me peace of mind that I am doing all I can to prevent a reoccurence. I feel very blessed and life is good but it didn't always feel that way when I was in the heat of the battle.  All my warrior sisters were there for support.  Thank you Renee was taking charge.

  • Cuetang
    Cuetang Member Posts: 173
    edited July 2014
    Options

    ndgrrl-- I think the ovaries/estrogen also help with other factors, such as heart health.  Have you tried asking about ovarian suppression?  I *think in Renee's case, they have her on ovarian suppression with the idea of never having a period again to go into menopause naturally (since I think she's around the same age as you).  Hopefully she can add some insight on that instead of me trying to recall the information from my bad memory.

    Hiya SurviviorRobyn!  hurray for wrapping up surgery and welcome!

    pacools--  it's been a long past year + for all of us.  So glad that we have all tackled this wretched BC beast.  We all have our battle scars, but so glad we all are there for each other during the highs and the lows. 

    Cheers everyone!

  • Txsurvivor13
    Txsurvivor13 Member Posts: 12
    edited July 2014
    Options

    SurvivorRobyn I am the same boat as you. I really wish I would have been more involved in this website through this journey. I have just gotten on here in the last couple of weeks. So much information. I joined last year but didn't utilize it. I am currently getting ready for my 2nd PET scan on Tuesday and then I have my 2nd surgery for reconstruction scheduled for September 3rd.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited August 2014
    Options

    Hey Luvmycanadian - welcome and glad you found us...wish we all didn't come together because of BC ugh.

    Come join us in get me through treatment ...Any Texas Hill Country BC Warriors...it's a big state and we  cover lots of miles:)

    We do meet ups and have fun!  A great resource too! 

    Best Wishes for your PET scan Tuesday and upcoming reconstruction surgery!

    Will be in your pocket {{{squeeze}}}

    Cindy

  • Txsurvivor13
    Txsurvivor13 Member Posts: 12
    edited August 2014
    Options

    Cindy,

    Thank you so much!! I will check that one out for sure.

    Hugs!

    Marisa

     


     

  • GwennyMD
    GwennyMD Member Posts: 68
    edited August 2014
    Options

    Have not been here in a long while.  Trying to live the new normal.  

    Last week was one year since my last chemo infusion.  I have been taking Femara since last Sept.  I have not noticed any side effects so far.  I am having the most trouble with the Boniva that I started taking in April.  MO said that I was osteopenic and that Femara would weaken bones further. The side effects of Boniva are pain in bones and joints.  I have doubled Vitamin D and calcium intake.  I hope to finish reconstruction and have port removed this year so I can do more exercise and start weight lifting.  BS said that I could reverse the osteopenia.  I hope so. After wearing wigs for 13 months I got rid of them in May.  Such a relief.  Most people say that the short hair makes me look younger. This is great news for a 57 year old.

    I hope everyone is doing well.  

    HUGS

  • Cuetang
    Cuetang Member Posts: 173
    edited January 2016
    Options

    Hello 2013 Warrior Sisters and Happy New Year! This morning as I sit on my metro train to work, I think back that 3 years ago this month I found this website and joined together with a group of ladies who I've never met but extended a virtual shoulder for me to lean on, offered understanding, comfort, and a sympathetic ear to me as I worked through the shock of just hearing the words "you have cancer".

    Cancer wasn't in my life plan, my plan was to start a family and live to where I was complaining about joint pains from running around with grandkids and be the cute old and gray couple that is taking a causal stroll around the neighborhood during the day.

    As 2016 begins, I still walk around with the scars from this ordeal, fears of what ifs and doubts of whether that cough is really just a cold or not and so forth. But what I know is that I appreciate having the opportunity to celebrate each passing birthday and being able to focus on other things in life both good and bad.

    What I can say 3 years later us that life is good. It is only made possible because of you all here. Thank you all and I hope you all are out there kicking ass.

    XOXO