21 year Triple negative Survivor

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rumoret
rumoret Member Posts: 685
edited June 2014 in Triple-Negative Breast Cancer
21 year Triple negative Survivor
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  • rumoret
    rumoret Member Posts: 685
    edited December 2007

    I was reading another message board Susan G. Komen, when I came across this response. I wanted to share it on this board, I took off her last name....even though she had everything posted over there. Just thought her words were  GREAT!

    Love Always,

    Terry 

    "Dear Karen,

    I'm afraid I don't know much about lobular and how it differs from IDC, which I had. However, I did have an aggressive cancer (triple negative), stage III, with 22 positive lymph nodes. I was treated fairly aggressively, with weekly chemo for one year and radiation, and I've been cancer-free for 21 years. We are not statistics--we are individuals, and women beat this disease every day. I'll be keeping you in my thoughts and wishing you the very best.

    Rena"

    _____________________________


    21-year survivor
    BRCA2-positive
    Dx 1986 IDC ER/PR negative 22 positive lymph nodes
    CMFVP chemo weekly for one year, 7 weeks radiation
    October 2007: New chassis and spark plugs!

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  • twink
    twink Member Posts: 1,574
    edited December 2007

    I remember her.  When I was diagnosed I found the Komen board first.  Her history and words were so very encouraging to me at the time.  She really helped me keep what I was reading on the WWW in perspective.  Thanks for posting Rena's info here too.  Us triple negs can use encouraging stories.

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited December 2007

    How she found an oncologist to do weekly chemo 20 years ago is beyond me. Do you know where she received her treatment? 

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited December 2007

    Oh yes, they were doing chemo then.  I worked at the church with a lady that had her chemo in 1980.  Said she would rather die than do it again.  Then they came up with the new anti-nausea meds.  They had chemo then, but who knows what kind?

    Hugs, Shirl

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  • cmb35
    cmb35 Member Posts: 1,106
    edited January 2008

    Love it! Thanks for posting!

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  • snowyday
    snowyday Member Posts: 1,478
    edited January 2008

    Hi Shirlann:  Thanks for posting Rena's post it's really encouraging for all of us. But as the above posts said how did she manage that 21 years ago and what treatment did she get.  I'd love to know.  I've never checked the Koman board but I will now. And a big fat hug to you. Pearl49

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  • snowyday
    snowyday Member Posts: 1,478
    edited January 2008

    Oh boy Rumoret posted this: big fat hug to you, really and thank you and Shirlann ditto.Pearl49

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  • caitlin1025
    caitlin1025 Member Posts: 8
    edited January 2008

    Great survivor story. Bring more on!

    I was diagnosed with triple neg bc in June of 2004. Tumor was aggressive and large - - 4.9cm. Drs. and I decided on neoadjuvent therapy to shrink the tumor. Had AC & Taxatere. When they opened me up after chemo - - I opted for a double - - they found no cancer at all!!! I had a complete pathological response (CPR) to the chemo. There was no cancer in the breast or nodes. The unsettling part is that I don't know how many nodes had cancer in them before the chemo. Who cares, I guess, since the cancer was gone after the surgery?

    Is it really true that the 3 yr. mark of being cancer free for triple neg bc a good indicator of overall survivorship?

    Caitlin1025

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  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited January 2008

    Hi, Caitlin1025.



    Congratulations on tour cPR! This is the best news you can get and yes, it is true that the first three years from diagnosis to five are the most crucial for us triple negative but then the stats that I have checked don't differentiate between tumors who have had cPR versus partial response after neoadjuvant. What is encouraging from our forums is to find out that even if someone hasn't had cPR, they are doing fine and are close or beyond the crucial 5-year mark so that should give you even more confidence that you will be fine. Best, Christina

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  • caitlin1025
    caitlin1025 Member Posts: 8
    edited January 2008

    Thanks, Christina, for the encouraging note. What forums are you talking about - - this one we are in? I've never gotten involved in a community like this to share my story so bear with me!

    What gets me through the day and makes me not as scared is when the surgeon shared with me the news about my cPR report after my double mastectomy. My tumor was large and my guess is that I had positive nodes; the fact that the chemo WORKED - - and works for all of us triple negatives - - is so huge. I have also heard, like you, that having a partial response after neoadjuvant is encouraging as well.

    Did you have neoadjuvant treatment? Although at times, I was wondering why I was doing chemo first and touching my cancer everyday to see if it was responding, I am so grateful that I know for sure that my chemo "cocktail" worked.

    Hope you are living strong!

    Caitlin1025

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  • CaNatalie
    CaNatalie Member Posts: 70
    edited January 2008

    Hello everyone. What a positive thread on such a great topic right when I needed it!

    Caitlin- I was reading what you wrote about your tumor size and assuming you had some positive nodes. My tumor measured 2cm at dx but right before my nodes were biopsied they were measuring it at 4cm and my nodes came back negative. So, maybe you had negative nodes too. Just a thought. I am also doing neo adjuvant chemo. My last one is the on the 29th of this month....I can't wait to be done!

    Christina-I swear you're my accidental guardian angel...as your post always touch on what seems to be concerning me most and offer reassuring information. You have perfect timing. Thank you!

    Take care,

    Natalie

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  • celia088
    celia088 Member Posts: 2,570
    edited January 2008

    YAYYYY!!!!! Rumoret, thank you so much for posting this frrom the Koman board!!!!

    Hey Zaro.....hope you are reading this!!!!!!!!!!! 

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  • ARKIEMAMA
    ARKIEMAMA Member Posts: 9
    edited January 2008

    hey celia,

           wondered where you were and how you were same ol,same oh here it'll be three years in july for me onc still wants to see me every 3 months y i don't know unless he's expecting something oh well,nice to see you're ok

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  • celia088
    celia088 Member Posts: 2,570
    edited January 2008

    Hey Arkiemama!!!

    Hi!!! It is great to see you. It has been a long time since we have chatted.  I sent you a PM here so go to your "home" section on the boards to get it. 

    Lots of hugs,

    celia 

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  • caitlin1025
    caitlin1025 Member Posts: 8
    edited January 2008

    Thanks for your note, Natalie.

    I am sure you are anxious to be done with your last chemo treatment on 1/29! It appears as though your drs. went ahead and biopsied your nodes before you began your 1st chemo? So you actually know that your nodes are clear? Upon my diagnosis, I had some suspicious looking lymph nodes on utrasound. They could have been cancerous or just infected - - or non-cancerous. Regardless, after surgery, the nodes were cancer free. Praise God for that!

    I did all of my treatments at Northwesten Memorial Hospital in Chicago. I am now in an early detection program for ovarian cancer. Even though I was triple neg, I want to have my ovaries removed. I don't want to get another female cancer.

    Does anybody else feel that way? Has anybody else had their ovaries removed even though their bc wasn't fueled by estrogen?

    Caitlin

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  • CaNatalie
    CaNatalie Member Posts: 70
    edited January 2008

    Hi Catilin- You are right. I had my nodes biopsied before I started my chemo. I think your story is great and very encouraging. I am glad your nodes were cancer free.

    I also talked to my doctor about having my ovaries removed. She said it would be something to discuss after I finish all my surgeries and treatment. Are you BRCA positive?

    Natalie

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  • caitlin1025
    caitlin1025 Member Posts: 8
    edited January 2008

    Hi Natalie,

    No, I don't carry the BRCA 1 or 2 gene. Do you?

    Just curious - - did your Dr.'s recommend neoadjuvant therapy for you or was that something you wanted? Was it because they wanted to try and shrink the tumor? As I recall, your tumor didn't seem that big - - 2cm??? My Drs did neoadjuvant so I would have the option to have a lumpectomy. I decided to have a double after all. Peace of mind more than anything. What surgery option have you decided on?

    I'm not sure what benefits I'll receive from having my ovaries removed since I am triple neg and I don't carry the genes; again, for me it is piece of mind about getting another female cancer. How about you?

    Thanks for chatting with me!

    Caitlin

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  • Helen1
    Helen1 Member Posts: 209
    edited January 2008

    Arkiemama!!

    I ran across your name and was so glad to see it. How have you been.  I miss our late night /early moring chats.

    I don't get in to chat very often any more,  I can't sit in my computer chair very long.  I am still hanging in and on. I just recently posted an up date in the metastatic thread xeloda has stopped working and not good news on the latest scans.  I will pm you my email address.  I would love to hear from you.  Take care

    Helen

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited January 2008

    it's so good to hear from everyone...i have missed my daily connection that was so important during chemo and rads...celebrated the 1 year anniversary of dx by getting another place to put an earring...a tiny diamond stud in my tragus (that funny little blip part of cartilage inside your ear)...i think of it as my victory prize!

    hugs to all....

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  • CaNatalie
    CaNatalie Member Posts: 70
    edited January 2008

    Hi Caitlin,

    I am BRCA1 and BRCA2 negative also. So I understand what you mean about still worrying about having ovaries removed. Peace of mind is so important.

    The doctors recommended neoadjuvant chemo to monitor my response to chemo and make sure we chose an effective regimen. I was a candidate for the lumpectomy, but in March will be going with the bilateral mastectomy.

    I also sent you a private message (pm).

    Take care,

    Natalie

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  • caitlin1025
    caitlin1025 Member Posts: 8
    edited January 2008

    Natalie,

    Sorry! I don't know what you mean when you wrote I sent you a private message. Where do I get it???

    Caitlin

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  • CaNatalie
    CaNatalie Member Posts: 70
    edited January 2008

    Hi Caitlin-

    To get your private messages you have to log in. Then in the upper left corner area click on "my home". Then the left side will display your private message section and any messages you may have in your inbox. Let me know if you have any problems.

    Natalie

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