Triple negative; Please help!!!

chilibbq
chilibbq Member Posts: 30
edited March 2014 in Breast Cancer #1
My girl friend (I will call her Connie) (49 yrs) was diagnosed with breast cancer a couple of months ago. She just had a double mastectomy and 24 lymph nodes removed ubder her left arm. Her recovery from the surgery has been good considering it has only been 2 weeks. Her spirits have been good as well. She has understood she would need to go through chemo & radiation and ultimately reconstruction. She seemed to accept this. Today she met with the doctor that will be treating her for chemo. At that time she was told she had triple negative. I do not know how the doctor explained it or how Connie percieved the conversation, but now her spirit and hopes seem to have been dashed. She talks as if she was told she is dying. One of our mutual friends called me after talking to Connie and asked me how long she had to live.
When she called me today she would not tell me what triple negative was. She told me to look it up, she did not want to discuss it. Her phone has been off since. While doing research, I found this site with valuable information. The stories are hopeful. As Connie's strongest supporter and caregiver, how do I handle this? I am lost! My hope is to find survivors who have had the same experience to communicate with her. Thank you to anyone who can help me.
God Bless,
Ken
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Comments

  • Jeanne D
    Jeanne D Member Posts: 1,867
    Hi Ken
    I am very sorry about your girlfriend's diagnosis. But, she can and will survive bc. You two probably need to schedule another appointment with her oncologist to go over her treatment plan and condition again. Good luck to you! I am not a doctor, and, won't attempt to offer a diagnosis. But, we will be here to support and encourage both of you.

    ♥Love, Jeanne♥
  • chilibbq
    chilibbq Member Posts: 30
    Jeanne D said:

    Hi Ken
    I am very sorry about your girlfriend's diagnosis. But, she can and will survive bc. You two probably need to schedule another appointment with her oncologist to go over her treatment plan and condition again. Good luck to you! I am not a doctor, and, won't attempt to offer a diagnosis. But, we will be here to support and encourage both of you.

    ♥Love, Jeanne♥

    Hi Jeanne
    Thanks for your encouraging words and suggestions. I have gone to some of her appointments with her, but I was working today and her mother went with her instead. Unfortunately, her mother is very negative and does not help Connie's mood. I wish I could have been there for her today. I do have more knowledge today than I had yesterday. Every day I learn more. I need to give her time to sleep on this news and supply her with this web site. I hope she will be active here. It seems to be helping so many people. Thank you again. Ken
  • Kylez
    Kylez Member Posts: 3,761 Member
    Hi Ken. It is so sweet of
    Hi Ken. It is so sweet of you to post on here to help your girlfriend. I want to welcome you to the site. I am not triple negative, so, I really can't answer anything about it to help you. But, there are several on here, and, maybe they can help you out. Welcome again!

    ♥ Kylez ♥
  • susie09
    susie09 Member Posts: 2,930
    Kylez said:

    Hi Ken. It is so sweet of
    Hi Ken. It is so sweet of you to post on here to help your girlfriend. I want to welcome you to the site. I am not triple negative, so, I really can't answer anything about it to help you. But, there are several on here, and, maybe they can help you out. Welcome again!

    ♥ Kylez ♥

    Hey Ken and Welcome. Sorry
    Hey Ken and Welcome. Sorry about your g/f's diagnosis, but, you have found a great site of fellow bc survivors. Wishing you good luck!
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    susie09 said:

    Hey Ken and Welcome. Sorry
    Hey Ken and Welcome. Sorry about your g/f's diagnosis, but, you have found a great site of fellow bc survivors. Wishing you good luck!

    Just want to say welcome
    Just want to say welcome Ken. I am not triple negative, but, I want to wish both you and your g/f good luck. Stay strong!

    Hugs, Diane ♥
  • Aortus
    Aortus Member Posts: 967
    Far less bad than it sounds at first
    Hi Ken!

    My beloved Moopy was dxed with "triple negative" BC last November. Like you and Connie, we had a rough time once it sunk in what the term means. But knowing what the term does NOT mean. It does NOT mean a death sentence. Were I not typing this on my iPod, I'd find the link myself, but I advise you to search for the thread where Mimi (who is another "tri-negative") and I collaborated on am informal tri-negative tutorial.

    Bottom line: there are plenty of tri-negative ladies out there dancing with NED (No Evidence of Disease) - some of them for years now. Moopy is going to be one of them. Mimi is going to be one too. There is no reason why Connie can't be one as well, and plenty of good reasons why she can, She already has a loving and supportive husband!

    May God bless Connie and you, and please stay in touch!

    Best,
    Joe
  • Alexis F
    Alexis F Member Posts: 3,598
    Aortus said:

    Far less bad than it sounds at first
    Hi Ken!

    My beloved Moopy was dxed with "triple negative" BC last November. Like you and Connie, we had a rough time once it sunk in what the term means. But knowing what the term does NOT mean. It does NOT mean a death sentence. Were I not typing this on my iPod, I'd find the link myself, but I advise you to search for the thread where Mimi (who is another "tri-negative") and I collaborated on am informal tri-negative tutorial.

    Bottom line: there are plenty of tri-negative ladies out there dancing with NED (No Evidence of Disease) - some of them for years now. Moopy is going to be one of them. Mimi is going to be one too. There is no reason why Connie can't be one as well, and plenty of good reasons why she can, She already has a loving and supportive husband!

    May God bless Connie and you, and please stay in touch!

    Best,
    Joe

    Hi! Welcome Ken and Connie!
    Hi! Welcome Ken and Connie! I wanted to let you know that besides posting here, there are a couple of other threads that you might take a look at on here. They are the Caregivers and the Emotional Support threads. Some post on several as they all have great info and support.

    Lex
  • m_azingrace
    m_azingrace Member Posts: 399
    Alexis F said:

    Hi! Welcome Ken and Connie!
    Hi! Welcome Ken and Connie! I wanted to let you know that besides posting here, there are a couple of other threads that you might take a look at on here. They are the Caregivers and the Emotional Support threads. Some post on several as they all have great info and support.

    Lex

    Hello Ken, and welcome.
    Hello Ken, and welcome. First, I want to commend you for your caring and proactive response to Connie's diagnosis. Second, please encourage her to visit these boards as well. Here she will meet many women in varying stages of recovery from this terrible disease. And she will receive encoragement and support from everyone. My diagnosis is new, tomorrow I see the oncologist to plan my treatment. I know it's not going to be fun, but since I've been coming here, I'm not nearly as afraid or depressed as I was before. Fortunately, you are on her support team, and she will not be alone here. God Bless you.
  • Kylez
    Kylez Member Posts: 3,761 Member

    Hello Ken, and welcome.
    Hello Ken, and welcome. First, I want to commend you for your caring and proactive response to Connie's diagnosis. Second, please encourage her to visit these boards as well. Here she will meet many women in varying stages of recovery from this terrible disease. And she will receive encoragement and support from everyone. My diagnosis is new, tomorrow I see the oncologist to plan my treatment. I know it's not going to be fun, but since I've been coming here, I'm not nearly as afraid or depressed as I was before. Fortunately, you are on her support team, and she will not be alone here. God Bless you.

    Ken, I think there is a
    Ken, I think there is a thread on here about triple negative by Mimi. I can find it for you if you want. Just let me know. Joe mentioned it in his posting.
  • chilibbq
    chilibbq Member Posts: 30
    Aortus said:

    Far less bad than it sounds at first
    Hi Ken!

    My beloved Moopy was dxed with "triple negative" BC last November. Like you and Connie, we had a rough time once it sunk in what the term means. But knowing what the term does NOT mean. It does NOT mean a death sentence. Were I not typing this on my iPod, I'd find the link myself, but I advise you to search for the thread where Mimi (who is another "tri-negative") and I collaborated on am informal tri-negative tutorial.

    Bottom line: there are plenty of tri-negative ladies out there dancing with NED (No Evidence of Disease) - some of them for years now. Moopy is going to be one of them. Mimi is going to be one too. There is no reason why Connie can't be one as well, and plenty of good reasons why she can, She already has a loving and supportive husband!

    May God bless Connie and you, and please stay in touch!

    Best,
    Joe

    Thank you everyone!
    I am overwhelmed by the responses I have recieved from so many people.
    Joe, I am so glad you responded. Much of what I read last night was about you, your beloved Moopy and Mimi as well. Late last night after posting I did get a call from Connie. We talked and cried until wee hours of the morning. I emailed her the link of the posting you made explaining triple negative (I also read it to her) I think it helped her quite a bit. As a matter of fact, she was on this site this morning. We talked about the network of support she would need during this process; expanding it from the current friends, family and church to local support group and this web site for starters. Right now, especially yesterday, it has been overwhelming for us.
    I placed Mimi and Joe on my friends list in hopes that if we need one-on-one, someone would be there. However, after these responses, it looks like there is much support. Lex suggestted I look at threads for caregivers and emotional support. Thank you, it is one of the things I have been looking for. I have been doing research and reading; finging out what to say and what to do. More importantly I have found out what not to say and what not to do. But I have much to learn, this is a great place!!
    Connie and I have known each other for 8 years, when she glows, I smile. When she laughs (and snorts) I am happy. When she hurts,I am crushed. She is the love of my life! I have always been the "fix it guy", this I cannot fix so I need to think in a different mind set.
    Than you and God Bless each and everyone of you.
    My prayers are with all of you.
    Ken
  • chilibbq
    chilibbq Member Posts: 30
    Aortus said:

    Far less bad than it sounds at first
    Hi Ken!

    My beloved Moopy was dxed with "triple negative" BC last November. Like you and Connie, we had a rough time once it sunk in what the term means. But knowing what the term does NOT mean. It does NOT mean a death sentence. Were I not typing this on my iPod, I'd find the link myself, but I advise you to search for the thread where Mimi (who is another "tri-negative") and I collaborated on am informal tri-negative tutorial.

    Bottom line: there are plenty of tri-negative ladies out there dancing with NED (No Evidence of Disease) - some of them for years now. Moopy is going to be one of them. Mimi is going to be one too. There is no reason why Connie can't be one as well, and plenty of good reasons why she can, She already has a loving and supportive husband!

    May God bless Connie and you, and please stay in touch!

    Best,
    Joe

    Thank you everyone!
    Somehow my response was posted 3 times. I could not find out how to delete it, just revise it. Please ignore tis post. Thanks. Ken
  • chilibbq
    chilibbq Member Posts: 30
    Aortus said:

    Far less bad than it sounds at first
    Hi Ken!

    My beloved Moopy was dxed with "triple negative" BC last November. Like you and Connie, we had a rough time once it sunk in what the term means. But knowing what the term does NOT mean. It does NOT mean a death sentence. Were I not typing this on my iPod, I'd find the link myself, but I advise you to search for the thread where Mimi (who is another "tri-negative") and I collaborated on am informal tri-negative tutorial.

    Bottom line: there are plenty of tri-negative ladies out there dancing with NED (No Evidence of Disease) - some of them for years now. Moopy is going to be one of them. Mimi is going to be one too. There is no reason why Connie can't be one as well, and plenty of good reasons why she can, She already has a loving and supportive husband!

    May God bless Connie and you, and please stay in touch!

    Best,
    Joe

    Thank you everyone!
    Monday is her first chemo treatment. She asked if I will take her. I know it is different for everyone, but is there a ballpark figure when she will have her worst days? I need to prepare to take off work. After the first few times I am sure we will figure out how she will react. Thanks. Ken
  • jnl
    jnl Member Posts: 3,869 Member
    chilibbq said:

    Thank you everyone!
    Monday is her first chemo treatment. She asked if I will take her. I know it is different for everyone, but is there a ballpark figure when she will have her worst days? I need to prepare to take off work. After the first few times I am sure we will figure out how she will react. Thanks. Ken

    Hi Ken. What chemo is she
    Hi Ken. What chemo is she having? If you know, I am sure someone can help you out. I didn't have chemo, so, I really can't offer much help there. And, maybe everyone reacts differently. Good luck with her chemo. Take good care of her. Post often.

    Hugs, Leeza

    don't worry about the 3 postings, we do it all of the time. lol
  • whichwitch
    whichwitch Member Posts: 42
    Best advice I can give -
    Best advice I can give - will she allow you to go to appointments with her? She will not feel so along. You become one with her, because you both do it together. I know it will be hard on you, work and family. A day doesn't go by that I don't thank God that I can do this with my sister. It really helps. Give her space to digest this and she will come around. you have all my prayers and thoughts and hugs. Sending angels to watch over both of you.
  • Alexis F
    Alexis F Member Posts: 3,598
    chilibbq said:

    Thank you everyone!
    I am overwhelmed by the responses I have recieved from so many people.
    Joe, I am so glad you responded. Much of what I read last night was about you, your beloved Moopy and Mimi as well. Late last night after posting I did get a call from Connie. We talked and cried until wee hours of the morning. I emailed her the link of the posting you made explaining triple negative (I also read it to her) I think it helped her quite a bit. As a matter of fact, she was on this site this morning. We talked about the network of support she would need during this process; expanding it from the current friends, family and church to local support group and this web site for starters. Right now, especially yesterday, it has been overwhelming for us.
    I placed Mimi and Joe on my friends list in hopes that if we need one-on-one, someone would be there. However, after these responses, it looks like there is much support. Lex suggestted I look at threads for caregivers and emotional support. Thank you, it is one of the things I have been looking for. I have been doing research and reading; finging out what to say and what to do. More importantly I have found out what not to say and what not to do. But I have much to learn, this is a great place!!
    Connie and I have known each other for 8 years, when she glows, I smile. When she laughs (and snorts) I am happy. When she hurts,I am crushed. She is the love of my life! I have always been the "fix it guy", this I cannot fix so I need to think in a different mind set.
    Than you and God Bless each and everyone of you.
    My prayers are with all of you.
    Ken

    You are welcome Ken! I just
    You are welcome Ken! I just hope that both you and Connie can find support and encouragement here from us.

    Please keep posting and keep us updated!


    Hugs ♥Lex♥
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    chilibbq said:

    Thank you everyone!
    Monday is her first chemo treatment. She asked if I will take her. I know it is different for everyone, but is there a ballpark figure when she will have her worst days? I need to prepare to take off work. After the first few times I am sure we will figure out how she will react. Thanks. Ken

    Hi Ken and Connie and
    Hi Ken and Connie and Welcome! I wish you good luck with your first chemo on Monday. Keep us updated on how you both are doing.

    Hugs!
  • Kylez
    Kylez Member Posts: 3,761 Member

    Best advice I can give -
    Best advice I can give - will she allow you to go to appointments with her? She will not feel so along. You become one with her, because you both do it together. I know it will be hard on you, work and family. A day doesn't go by that I don't thank God that I can do this with my sister. It really helps. Give her space to digest this and she will come around. you have all my prayers and thoughts and hugs. Sending angels to watch over both of you.

    Whichwitch, you are such a
    Whichwitch, you are such a special sister. Sending angels to watch over you and your sister too!
  • Lakegirl
    Lakegirl Member Posts: 15
    triple negative
    I was dx with TN breast cancer 2.5 months ago. I am also 49 years old. I have had surgery and had my first chemo treatment yesterday. I have to have four A/C & four Taxol. I was scared to death of the first chemo treatment but I have come through it so far. Last night was pretty rough but I feel better today.

    I am not letting the "TN" discourage me. I have read of many survivers and intend to be one myself.

    Let me know how you and Connie are doing.
  • mimivac
    mimivac Member Posts: 2,143
    Hello Ken
    I'm sorry I didn't see this post before. I'm glad, however, that Joe and others have given you such good support and resources. Triple negative breast cancer can be discouraging to hear about at first. Oncologists don't like it because it means they can't give you endocrine therapy like Tamoxifen after your other treatments. They want to take advantage of all avenues of cancer therapy and triple negative precludes hormonal medications, so some may see this as a negative. BUT, it's a fact that the odds are still very much on your side with early stage breast cancer, no matter the hormone-receptor status. It's an absolute myth that triple negative breast cancer has a poor prognosis. You will see this on the web, so don't go there and don't let Connie go there either. It just means that the tumor is not fueled by estrogen, progesterone, and does not over-express the HER/neu gene. It does usually mean that it's an aggressive tumor, but chemo works best on aggressive tumors. In fact, chemo is very effective for triple negative breast cancer.

    Believe me, Ken, I understand the terror associated with this. But Connie will get used to the diagnosis and soon the dreaded words, "triple negative" will not give her nightmares. I've had surgery, chemo, radiation, and am now doing an preventative infusion called Zometa. Make sure to ask the oncologist what other forms of protection he/she would recommend after the core therapies are over. There are other things you can do (including exercise and diet) that have a significant impact. Connie is going to be OK. Tell her we would welcome her with open arms if she decides to join our board. Good luck, Ken. You're a good boyfriend.

    Mimi
  • susie09
    susie09 Member Posts: 2,930
    mimivac said:

    Hello Ken
    I'm sorry I didn't see this post before. I'm glad, however, that Joe and others have given you such good support and resources. Triple negative breast cancer can be discouraging to hear about at first. Oncologists don't like it because it means they can't give you endocrine therapy like Tamoxifen after your other treatments. They want to take advantage of all avenues of cancer therapy and triple negative precludes hormonal medications, so some may see this as a negative. BUT, it's a fact that the odds are still very much on your side with early stage breast cancer, no matter the hormone-receptor status. It's an absolute myth that triple negative breast cancer has a poor prognosis. You will see this on the web, so don't go there and don't let Connie go there either. It just means that the tumor is not fueled by estrogen, progesterone, and does not over-express the HER/neu gene. It does usually mean that it's an aggressive tumor, but chemo works best on aggressive tumors. In fact, chemo is very effective for triple negative breast cancer.

    Believe me, Ken, I understand the terror associated with this. But Connie will get used to the diagnosis and soon the dreaded words, "triple negative" will not give her nightmares. I've had surgery, chemo, radiation, and am now doing an preventative infusion called Zometa. Make sure to ask the oncologist what other forms of protection he/she would recommend after the core therapies are over. There are other things you can do (including exercise and diet) that have a significant impact. Connie is going to be OK. Tell her we would welcome her with open arms if she decides to join our board. Good luck, Ken. You're a good boyfriend.

    Mimi

    Just want to welcome you and
    Just want to welcome you and to wish you good luck.

    Keep posting and let us know how Connie is doing.


    ♠♣ Susie ♠♣