so scared, it hurts

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defeatbc
defeatbc Member Posts: 53
edited June 2014 in Triple-Negative Breast Cancer
so scared, it hurts
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  • defeatbc
    defeatbc Member Posts: 53
    edited March 2008

    Hi everyone.  I don't really know how to start out my first post here, but let me give it a shot.

    I've just been diagnosed triple-negative, grade 3, and node sensitive.  I am 31 years old, married, and have a 22 month old child.

    It hurts so much for me to think that this is not going to let me see my son grow up.

    It's still a shock for me, and I would really appreciate hearing everyone's success stories.  Thanks

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

    Defeatbc (and great name by the way)

    I'm so sorry to have to welcome you to the breast cancer club. It pretty much sucks, and as a matter of fact, you'll find a thread on these very boards to that effect! That being said, I know you're in shock, and I know you're scared, but here's the good news, you can do this, you really can.

    I was 41, divorced with a 9 year old boy when I was dx, and that was in May 2005. Same as you, but I had a positive node (I'm not sure what you meant by node sensitive?) I am just 2 short months from my 3 year anniversary and still no evidence of disease (NED).

    The info out there on triple neg is mostly really scary, try to take it with a grain of salt. You are not a statistic. Have you made decisions about a treatment plan yet? Take things one step at a time, and avail yourself of the many wonderful resources on this site.

    You'll get through this, and you will be OK again.

    Best of luck to you

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  • defeatbc
    defeatbc Member Posts: 53
    edited March 2008

    Thank you, cmb35.

    I am so happy to hear from a survivor.  Congrats on your 3 years NED.  It gives me so much hope.

    I guess what I meant by "node sensitive" (I'm still kinda new at this, and don't have the terminology down) is that at least one sentinal node had cancer cells in it.   That was determined after my lumpectomy -- which unfortunately wasn't successfull.

    I'm due for a double mastectomy (cancer was only found in one breast, but I opted for "peace of mind", and I'm already fairly flat to begin wit).  And the rest of the nodes will be removed.

    I have not been given a formal diagnosis, but it was a real bummer to find out after the surgery that I was no longer stage 1.

    I think a lot about my son and my husband.  I know that there are many people who can relate. 

    I am now trying really hard to be positive, and to see that there is hope amonst all the awful statistics.

    The internet is too saturated with horror stories, and what I/we need now is to hear more from survivors -- such as you! 

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

    Sweetie,

    Let me tell you, I just found out I am positive for the BRCA2 gene (long story, there was an extensive history of breast cancer in my family, but we were not aware of it) and let me tell you, I wish I had known it upon dx as I would also have opted for the bilat mast. I completely agree with you as far as "peace of mind", it helps.

    I had a lumpectomy, then a re-excision (they did not get clear margins the first time) with a sentinel node biopsy. I had one positive node, so I then had a full node dissection.

    When I found out the cancer was in my nodes, I started shaking from head to toe. Literally could not stop shaking I was so terrified. Here's how I look at it now, if there hadn't been a few cancer cells in that node, then I might not have had chemo. And I think the chemo may be the reason I am still NED today. I won't kid you, chemo sucks, but it is doable. I promise you, you will survive it.

    I understand about thinking about your husband and son. Believe me, my son is 12 now, and when my friends talk about our kids "driving in 5 years" or "going to college" I can't help but think, "am I still going to be here to see it?" I don't think that ever goes completely away, but I can tell you that it does get better.

    Check out some of the survivor stories threads, you'll find lots of us out here. Be scared, you wouldn't be human if you weren't, but try to remember that there is lots of hope as well.

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  • zap
    zap Member Posts: 2,017
    edited March 2008

    Dear Defeat:

    I am not any where as young as you and my babies have babies themselves.  I just want you to know that very soon you will receive so much good news and hope as people find yur post.  You have so much to face, but you will be holding your son's baby one day.  There are so many treatments ready for you.

    Do try to stay away from the internet.  So much information is downright outdated and incorrect.  Stay with this board.  Do you have family near?

    Take care.  You are going to be fine.  It all will get better when you get your treatment plan in order.

    Susan 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    Hi Defeat,

    I was diagnosed at the age of 31, and my son was 15 months old at dx.  My son, by the way, is a special needs child (kind of important to my story).  

    I was terrified, in anguish, and convinced I wouldn't see my baby grow up. 

    I learned I had a larger than life tumor (between 7 and 10 cm), and required pre-op chemo.  After that, I'd do surgery and rads. 

    How the heck was I supposed to take care of my baby?!?!  My son went to therapy 3x's a week.  I was worried he wouldn't be able to go, and he'd lose out on all his progress. 

    Oh, the worry......

    My church jumped right into action, without my even asking for help.  They scheduled baby-sitting five days a week so I could rest, meals every day (since food made me ill, I couldn't cook), housecleaning, you name it.   My son was able to get to therapy, and I could rest and make myself feel better. 

    I, being the type who would normally refuse to be in a photo, would suddenly take pictures all the time with my son.  I wanted him to see his Mommy, because I was sure I'd be gone before he could remember me.  I would video ourselves, too. 

    After 7 months of chemo, a bilateral mastectomy, and 36 rads, I am cancer free, and am over 2.5 years past my diagnosis. 

    How is my son after Mommy's cancer?  Well....he is the BEST behaved child in a doctor's office, because for over a year, that is basically the only place he went besides therapy.  

    He remembers Mommy's "owwies," points out breast cancer ribbons, and is (blush) more than willing to poke at another woman's boobs because he sees doctors do it to me all the time. 

    He is well-rounded, and not affected by mommy being sick.  I was so worried this would hurt him in some way, but he has come out of this an amazing child. 


    Cancer is NOT a death sentence, despite what it feels like and is portrayed as on the movies! 

    Please PM me if you need to.  You will be ok.  Ask for help-I couldn't imagine doing this with my son if I didn't have the help I did. 

    Love and prayers, Deb

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2008

    Hi defeatbc,

    I hope you find the on going thread"Where are the tri-negs!" and see many long term survivor's and thriver's of TN bc.  You must remember you are a individual and your cancer is unique to your body.  No doctor can predict how you are going to respond too treatment.  If I believe everything the doctor's said I would not be writing you right now.  You can do this!  Please start reading about people who survived cancer and what they did, also on how to take care of your body during treatment.  I worked through the last 2 1/2 years of treatment.  You can have a life while you a being treated.  You will learn to take one day at a time.  Remember to let other around you help you with what ever you need no matter how big or small. This will be their therapy to help you some small way.  You will find many new friends and old ones that will come back into your life, to be your support group. Find a good cancer support group that you can talk openly within. (through American Cancer Society, or a local church or ask other's at your doctor appts)

    Big part of cancer is playing the overwhelming mind games.  You may want to read the book "50 essential thing to do if you have Cancer" by Greg Anderson.  I found this very helpful.  Plus these ladies on this website are the best.  Do not be afraid to ask any question..you will find most of us have been there and experienced the fear or confession of are treatment.

    Wishing you the best.

    Living in Hope

    Flalady

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    Defeat,

    Im sorry to hear that you have to deal with this.....Im not as young as you but too young have have bc (or at least I thought)....as someone here already said my babies have babies themselves....

    Im glad you found us here so that we can help you when you need....this is such a wonderful place for support and information....

    Hugs

    Jule

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  • defeatbc
    defeatbc Member Posts: 53
    edited March 2008

    Thank you all for lifting my spirits.

    I was literally in tears after reading your responses.   My husband came home and saw me completely wet in the face, and thought that I was going through another one of those sad momments.  But, I assured him with a smile that those were tears of hope, and immediately pointed out all the posts on this thread.

    I would be lying if I were to say I'm not terrified.  I still am shaking all over from this new diagnosis (cancer appearing in my lymph nodes, and triple-negative), and I'm always worrying that it might be in my other organs -- brain, lungs, brain, liver, etc.  It's really crazy how much worry comes about when you don't have any info to indicate whether it has spread any further. 

    I look forward to conversing more with you ladies.  You are all an inspiration!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    Hey defeat,

    You would not only be lying if you said you weren't terrified, you would be a robot.  You HAVE to go through the fear to get to the battle mode. 


    I may have missed if someone suggested it, but ask your doc for some anti-anxiety meds (like ativan), or an anti-depressant.  

    I was never "big" on taking meds until I got cancer.  From that moment, I decided there was no shame in helping myself feel more like myself.  I took ativan when needed (also a great drug when on chemo and nauseated).  I also took Lexapro (and a smattering of other anti-depressants the docs thought I'd like). 

    Hope is a very important component of cancer.  

    The more you hope, the more your child will react to the hope than the cancer. 

    PS-YOU WILL BE AROUND TO SEE YOUR BABY GROW.  HAVE FAITH. 

    Love and prayers, Deb

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited March 2008

    Speaking of faith..... here I am! We never realize how strong we are, until we face the unthinkable. You've found a great place for support, 24/7. You will make as many friends here as you can possibly count.

    Prayers for you in the process of learning the ropes. The hurry up & wait aspect is enough to drive you looney, if the diagnosis itself didn't do it already. Focus on all that is good in your life, because it is still good. Hug that baby with the love you've always used to hug with... cry as often as you want. Laugh as often as you want. (It's amazing that sometimes those emotions come on top of each other.)

    Gather up all of the support you can muster. Say yes to anyone willing to pitch in. Make a list of how others can help.

    Use your imagination to plan something fun. Stay busy. Ask for any kind of medication that sounds beneficial. Reach out here. Ask lots of questions.

    ****word of warning: this place is addictive. your husband will probably be glad about that at times & possibly frustrated at other times..... but you can count on "us." will look for you in the chat room too.

    My favorite 2 thoughts for this phase of your journey:

    "When you're going thru hell, keep going."  (Winston Churchill & a country song)

    "When there's absolutely nothing that's funny, laugh on credit."

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008
    Faith-love your comment about the addictive nature of this board, and how hubbies either love that or hate it!  SO TRUE!!!!!!   Laughing
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited March 2008

    defeatbc...just your name shows you've got the fighting spirit! As all the women have said..the first part of this journey (diagnosis, getting a plan, etc..) is the hardest. I had many a sleepless night until I started that first round of chemo. Then I knew I was doing all that I could.I honestly did not know I had such strength inside of me. I guess we store it up for when we really need it.

    I was diagnosed Sept 2005 and recently had scans to prove to myself that I'm OKAY! I'm a survivor. What will be, will be. I've learned along the way to take it day by day, moment by moment. There are many mysteries to this disease and we don't know why most women survive it and others have complications.

    Triple neg sounds scary but they say that if we get through the first 3-5 years without a recurrence, our risk of recurrence goes down dramatically. My dh and are counting the months til September when I'll celebrate 3 years out since diagnosis.

    I saw "black" when the surgeon said I'd need chemo (I had no node involvement but chemo is THE weapon for triple negs). But, I survived that, too. It wasn't easy but I did it. You will, too.

    Good luck and be well. Lots of wonderful women on these boards. And I, too, am one who has become addicted to them.Embarassed

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  • dunner1
    dunner1 Member Posts: 49
    edited March 2008

    Dear Defeatbc- I am so glad I stumbled across your thread because I hope I can give you that fight you need at this point in your journey!!! Although it sounds like you already have it!!!! I was the new mother of a beautiful 5 month old and WHAM... I got diagnosed with Stage 3 Triple Negative BC. I said oh no not me, I have a child to raise!!! I told myself that I needed to have a positive fighting attitude and needed to pray!!!!!!!!!!!!!! Faith is so important! I remember thinking I just want to see him walk in to his first day of Kindergarten. Well I am so happy to tell you that I just celebrated my five years out in Feb. and Luke loves school!!!!!!!! My son is my life and he is the most loved kid I know!!! A gift that BC gave me. I cherish everything about him. Then my husband got diagnosed with cancer a yr. ago and WHAM again! We keep on saying we are INVINCIBLE!!! So I will add you to my prayers and please know we are all here for you! Love- Dunner

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  • dhettish
    dhettish Member Posts: 501
    edited March 2008

    Hi defeatbc,

    I am a TN and just finished chemo. I was worried and felt like I had taken off my boxing gloves but was not sure if my cancer had taken off it's gloves.

    Good news is that as time goes by, TN's have less chance of recurrence. Once we get past the 3 year mark, our chances of recurrences really drop.

    I had a double mast and 8 rounds of chemo. My onc said I had a 25-30% chance of recurrence. This is how I look at it. When the weather man says we have a 30% chance of rain, we never get rain. So I am going to take that view with my cancer and live my life.

    Deb was right about an anti-anxiety drug. I got a RX for Xanax and it has helped a lot. I don't take it every day, just on those days when my mind begins racing and I can't get it to stop. Yoga helps as well to calm the mind and help the body.

    I use these boards to get support and read all the posts of women who are not only surviving but thriving and they give me hope. I come here when I am down, because these women understand me as others can't. There are boards where we just laugh at our troubles. And commisserate with the troubles of others. Some days I stay on this site for hours depending on my frame of mind and weather. Rainy days can be bummers.

    Hang in there. You can get through this and BC is not a death sentence. It is still scary, no doubt about that. But let it spur you to grab onto life and enjoy the ride. And you are about to be in the ride of your life. Reach out to others. Let them help you. Many enjoy helping me and I enjoy receiving their help. Today I know I don't have to go through this alone and I don't allow myself to feel alone.

    Debbie 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    Debbie-I love your weatherman view of our recurrence threat. 

    Ironic that the last movie I saw the day before starting tx. was "Weatherman" with Nicolas Cage.......

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  • Micheleh2
    Micheleh2 Member Posts: 2
    edited March 2008

    Hi defeatbc,

    I just finished chemo a few weeks ago and will start radiation next week. I, too, am scared about being a TN, but I can't control what will happen. All I can control is my attitude and my approach.

    In my heart, I don't believe that I will ever have to deal with this again. I believe that this is a nuisance; a period in my life that's been really tough, but it's not a death sentence for any of us. Each day that I'm here to have a normal life (or as normal as it can be during treatment), is reason to celebrate. And on the days that I find it hardest to find something to celebrate, I read other's successes and triumphs and borrow a little of their strength for the day.

    We're all here for you and we're all pulling together for one another!

    Best,

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  • defeatbc
    defeatbc Member Posts: 53
    edited April 2008

    I want to thank everyone again for the comfort and assurance.

    I just got back from having a bilateral mastectomy (Left side to remove the cancer and lymph nodes.  Right side for "peace of mind").

    The pathology report came out in my favor:

    -- no more lymph nodes affected (total lymph node with cancer = 1)

    -- clean margins

    -- the "peace of mind" breast removal was worth it as it had a pre-cancerous spot!

    I look the way I did as a 12 year old (minus the nipples) -- not too shabby!

    I can't honestly say I've nipped "fear" in the butt, but I am definitely confident in beating cancer!

    As you ladies have said, I intend to hold (and babysit!) my toddler's child in many years to come.

    Looking forward to chemo.

    Luv ya all! 

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  • joyh
    joyh Member Posts: 91
    edited April 2008

    Congratulations on the wonderful report.  I finished chemo  last week, and  you can do it!  I'M SO HAPPY FOR YOU.      

    Hugs, Joy H 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2008
    Oh defeat, you are in battle mode now!  I'm so proud of you, I've been thinking of you often.  

    Rest, and heal well.  

    Love and prayers, Deb
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  • ivanna
    ivanna Member Posts: 5
    edited April 2008

    Glad to hear of the good report!

    I was diagnosed at 36 with 3.5 cm tumor and 2 nodes positive triple negative. I can not believe it has been 5 years and 3 months since my diagnoses!

    I do not think it is possible not to be fearful, but that fear will decrease with time.

    I know it will be pretty hard to get rest with a little one running around, but try to take time for yourself so you can heal!

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  • RN2teach
    RN2teach Member Posts: 312
    edited April 2008

    Dear defeat,

    Just noticed your post today. I post regularly on "where are the tri-negs?" I hope you'll read the posts on that thread. I think you'll be encouraged further.

    Your path report sounds good and you've got the right attitude. Keep that fighting spirit! Us TN gals will be here to support you!

    Paula

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