Triple Negative- anything positive?

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  • Luah
    Luah Member Posts: 1,541
    edited March 2012

    Congrats Michele - big milestone! Thanks for posting. 

  • tibet
    tibet Member Posts: 545
    edited March 2012

    Does any know the risk of mets for tn after 3.5 years out?

  • MicheleS
    MicheleS Member Posts: 937
    edited March 2012

    my oncologist told me that I am at a much greater risk of dying in a car accident caused by my newly-driving 16 yr old than I am of getting mets.  :P

  • tibet
    tibet Member Posts: 545
    edited March 2012

    Michele S

    I remember you used to say you get scans every 2 months. Do you stil do it? I get PET CT once a year for the first 3 yrs. Now I am 3.5 yrs out and wonder if I should still do a PET CT when approaching 4th year in Sept. What do you think?

  • hcallaway
    hcallaway Member Posts: 1
    edited April 2012

    I will be three years out in May. I am going to yearly scans,and feel reasonably well. I still have tingling in toes from chemo. When can I relax a little about mets? I had a clean scan in dec 2011 but have to wait another year to get another one. I try to control my fear, but sometimes it just consumes me. My doctor says its post traumatic stress syndrome. any thoughts? what is the best thing to do to try to prevent a reoccurrance?

  • Clowngirl
    Clowngirl Member Posts: 43
    edited April 2012

    I was just diagnosed last week and I am triple negative. 2A  I am scared. I lost my sister to breast Cancer in 2001. I am 60. She was 59 at the time.

    Worried sick. Double mastectomy is planned along with chemo and radiation. What kind of chemo do they use for this? Is it effective?  

  • Clowngirl
    Clowngirl Member Posts: 43
    edited April 2012

    Kelly, I am in Southington. I've just been diagnosed with triple neg as well. I'm quite scared too.

  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited April 2012

    Clowngirl - triple negative is very responsive to chemo. Remember, most women who are triple negative survive their disease. 

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited April 2012

    Clowngirl, Check out the thread for "Calling All TNS", a thread for triple negative women. It is very active and there are several newcomers just this week. Lots of ladies who have been where you are.

    Chemo is very effective for triple negative (TN) There are a number of possibilities for chemo, depending on you cancer center and oncologist.

     Kristy (aka Huskerkkc)

  • Clowngirl
    Clowngirl Member Posts: 43
    edited April 2012

    Thank you. I can't eat. I can't sleep. I"m so worried. I will check out that thread. Thank you for your help. I wa terribly afraid that they didn't have anything to treat triple neg. 

  • nonijones333
    nonijones333 Member Posts: 120
    edited April 2012

    Clowngirl, just look at my post 26 year survivor, hope it helps I was also stage 2 triple negative as well. A 2 a diagnosis sounds pretty good to me...hope my post helps. BTW read threw the whole thing, not as bad as you think.

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited April 2012

    Clowngirl- I sent you a private message.  Just keep breathing..it will be okay. There is so much support here.  Contact me antime.

  • Clowngirl
    Clowngirl Member Posts: 43
    edited April 2012

    Thank you, Noni. I did read your profile and it brought me great comfort. I have a daughter and two grand daughters and must to genetic testing. So scared for them now. 

    You've given me some hope however on a day that I was losing home.

    And Kelley, Thank you for your support. I may be leaning a bit on you.

    Hugs. 

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited April 2012

    clowngirl- thats what I am here for..lean away!!

  • tracie23
    tracie23 Member Posts: 598
    edited April 2012

    Hi girls, I am BRCA 2+ and was diagnosed TN. I was so scared in the beginning my mother had survived breast cancer twice . She is BRCA 1+ and all the women in my family have been tested as well 2 have the gene but have never gotten cancer one of them is 69yrs old. We were told you can have the gene but it does not mean you will get cancer. I have a 10 yr old daughter and I have chose not to worry about it until we have to worry about it. They said until she is 18 and decides on her own we couldn't have her tested. I also found out that if your BRCA 1 your children will be BRCA 1... sooo I found out the BRCA 2 comes from my dad's side.

    I wanted to add that we just recently found out from old records my mother was TN on her last diagnoses in 1987... back than they did not know much about all the ER PR HER2 NU stuff... she had her breast removed both times and she never had chemo or rads she has never had a problem since. NED all the way... When I found out I had cancer I had a BMX just to be safe I did decide to to chemo and a year after the BMX I had an ooph just to be safe. Everything the Dr. has told me is that TN responds well to chemo. My oncologist will not do unnecessary scans he said he will only do them if we think there is something really wrong. The radiation is not good for us. Getting through chemo is tough and there were times I thought I wouldn't be able to do it....but today 14 months later I feel pretty good, I work out , I have hair and I have really nice boobsLaughing The only thing left is nipples and at this time I really don't care about them. 

    I am here for whoever wants to talk.

    Tracie

  • Clowngirl
    Clowngirl Member Posts: 43
    edited April 2012

    I got my double mastectomy date today. May 10th at Yale. We decided on no reconstruction at this time and I'm at peace with that. 

    Scared. Anxious. Just want it done.

  • tracie23
    tracie23 Member Posts: 598
    edited April 2012
    Clowngirl, I was so happy not to do recon right away... it gave my body time to heal and when I did get the TE it was so easy. You are going to do great Laughing 
  • Clowngirl
    Clowngirl Member Posts: 43
    edited April 2012

    Thank you, Tracie.  How are you doing now?

  • tracie23
    tracie23 Member Posts: 598
    edited April 2012

    I am doing awesome.... except for the chemo brain LOL... I was a really good multi tasker and now I can't find my way out of the bathroom.

    When do you have your surgery? When you find out what kind chemo you are having I can enlighten you on that Laughing My chemo was AC than Taxotere. They were both pure hell but I made it out of the chemo haze (sorta)

    I had BMX 1st than Chemo and no rads... I have a strong background for cancer and I am BRCA 2+ so I decided to remove  both. I didn't want to go through all the issues of leaving a breast on and going through it again. is your tumor large? I don't want to sound negative or scare you but from my experience with my family only taking one breast off it came back to the other. I have read through a lot of these threads and I have seen a lot of women who only did one breast or lumpectomy  it seems to come back ... not always but sometimes. You have to look really think about what you want and ask a lot of questions.

  • Clowngirl
    Clowngirl Member Posts: 43
    edited April 2012

    Hi, Tracie

    I'm glad you are doing so well. My surgery is May 10th. I am doing the double mastectomy. I don't want to go through this again. My tumor is 3.4 cm   but my path says that this may not be the main site but another may be lurking in the same breast. That scares me. I will come back here when it's chemo time to get some education on what it's all about. I also just made appointments with Genetics. My sister passed in 2001 from this disease. She was not very proactive with her health and ignored her breasts until it was too late. I thought I'd take this down time to write my book but with brain fog I'm thinking that might not be possible. {{sigh}} Thank you for being here to encourage us newbies. 

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited April 2012

    Clowngirl- just jot things down as you go and then piece that book together later on..especially because there are many days when the best way to get through this cancer crap is with some humor..and hey..you already have lots of wigs!! I think I may want to borrow one of those..I love the purple !

  • Clowngirl
    Clowngirl Member Posts: 43
    edited April 2012

    Kelly, I think maybe I should just stay "in clown" for the duration! Haha! I can see me sitting in the chemo lounge in full clown listening to some tunes. {{sigh}}   I have to find the humor in this somehow.

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited April 2012

    clowngirl- we will help you find the humor and the strength to get through this

  • Clowngirl
    Clowngirl Member Posts: 43
    edited May 2012

    I'm reading too much and it's scaring me. Need some more positive imput today. Tell me that there is chemo for me. Anything. Surgery is now one week away. And then more hurry up and wait. Going out to pick up my prescription for prozac. I hope it helps.  Just beginning this journey. Does it get better? Will the dread and worry lesson?

  • tracie23
    tracie23 Member Posts: 598
    edited May 2012

    Oh the prozac will help. And yes there is Chemo for you... You are going to be fine, and when it is all over and you are done chemo , surgery etc... you will begin to feel normal again. Today I feel great I have hair , boobs and I have lost the weight I put on. The BMX is life changing but I felt great once they were off.... Please don't scare yourself and you should stop reading... Once you have the surgery take it one day at a time. Ask questions and just stay calm. I took atavan during the day (still do sometimes) and ambian at night you take and do what ever you need to  to get through this. I am sending you my # if you need me call me day or night and I mean it. You are not alone.

    Hugs

    Tracie

  • CharB22
    CharB22 Member Posts: 310
    edited May 2012

    Clowngirl - yes, there is chemo for you. And, my MO told me that chemo works great for TN. I just finished my chemo last week and had a clean mammogram/ultrasound on Mon. When I was diagnosed in December, I never thought April would get here. And it did. Yes, it was a rough few months. But it is doable. You WILL get through it. Take whatever meds you need...they are your friend. I take Xanax on "bad" days (which are getting fewer and fewer) and Lexapro every night. I don't worry as much - although last night was a "bad" night but I think it's because I meet with my RO tomorrow and get my tattoos, so I'm getting nervous. On the plus side, you should already have a ton of wigs (clown wigs, that is)!

  • Clowngirl
    Clowngirl Member Posts: 43
    edited May 2012

    Thank you CharB22 and Tracie.   I have had an upset tummy every since I was diagnosed. I can't eat without feeling nauseous. I do have some pills for this but it's not doing much. The ativan seems to calm it down a bit but I have to double up the dose. Any suggestions? Has anyone had chronic upset stomach?

  • joannnc
    joannnc Member Posts: 119
    edited May 2012

    I had a similar diagnosis and I am here nine years later.  Hugs,

  • mb1024
    mb1024 Member Posts: 49
    edited May 2012

    I've been feeling the same way, Clown Girl.  It has been getting better, and it helps to eat a little bit every few hours.  I got my port in today.  My arm is a little sore but, otherwise, I feel fine.  The anesthesia was great. I had some cool dreams and I'm still feeling relaxed.  I start chemo on Wednesday, and I'm not looking forward to it, but I'll get through it, and so will you.

  • tracie23
    tracie23 Member Posts: 598
    edited May 2012

    sally, I was really nice talking with you yesterday. Anytime you need me please call me.

    mb1024 I am sending you a private message.

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