New here and looking for positive support - triple negative

loving_life
loving_life Member Posts: 1
edited March 2014 in Breast Cancer #1
Hi, i debated a long time about coming here after i was told this place existed. too scared to read about anything at all regarding my disease. Denial i suppose... I even forbid my husband from doing any kind of research because i just couldn't handle knowing anything. Even my doctor was only allowed to tell me only what i had to know to make decisions. Just saying breast cancer was impossible for me. I was diagnosed with triple negative breast cancer on March 29th, 2010. I was in the recover room with husband who had just had minor surgery on his arm and was waiting for the news from my biopsy. I was sure it was just another cyst and no worries. I broke down for two days and was a basket case. Then the long roller coaster ride began. Zanex was my frient. I had a 5cmm lump and scared to death. I began chemo the second day after visiting with my oncologist. I was in such a state, i demanded we begin now regardless of all the tests that were needed before you normally begin. I had an ekg and then started chemo straight away with it going straight into my veins. Then i got a port later on. I had a lumpechtomy after that and had the port removed, and then radiation for 6 weeks. Even while writing this down, i'm shaking. I stayed very positive for husband and my daughter along with the grandchildren. I was only 48 and this was a nightmare i didn't share with anyone. I worked everyday, went to chemo at lunch and then back to work. I went to radiation treatments at lunch as well. the day after surgery, i was working from home. I kept up the positive face and never let on how horrible and alone i felt. Even when i went to have my hair cut off (it was down to my waist) i made it a family affair and we laughed and joked as we tried on different wigs. I cried alone later though. I never let anyone see me without a hat or my wig. the tumor reduced in half after the second chemo treatment, it was unable to be detected manually after the 4th and disappeared entirely by then. After surgery, no cells were found and nothing in the lymph nodes was ever found either. Bone scans were negative, CT scans were negative and the gene test was negative. According to my surgeon and oncologist i'm being silly looking for signs and worrying. I have had the best pathology possible and my chances of recurrance are too low to measure. I am in the lowested percentil possible and the surgeon (top of her field) has never in her 30 years pratice seen anyone with this kind of pathology have a recurrence. It's not helping me not to worry. I still have panic attacks and suffer quietly away from anyone so i dont worry them.

So i have come here to see if i can find others like me so i won't feel so alone. I am still clear of cancer a year later but still, i am so scared. I have a pain in my side that is constent and has been there even years before i was diagnosed with breast cancer. GI doctor said it was an irratated small intestine. It comes and goes but lately it has been constant. I'm too scared to do any kind of research about it and my oncologist isn't concerned. still i keep thinking its pancreatic cancer or liver cancer or intestine cancer...see where my mind goes all the time?

Comments

  • CR1954
    CR1954 Member Posts: 1,390 Member
    Welcome...
    Welcome to the board. I'm sorry for your dx, but glad that you found us. I'm sure that others will be welcoming you, as well.

    The ups, the downs, the fear, are all part of a cancer diagnosis. That is where the wonderful ladies (and men) on this board, can be of immense help. They will always support and comfort. Also answer your questions.

    The "what ifs" are a constant part of my life also. As is Xanax. I don't think it's all that uncommon to worry some, to be vigilant for anything different. I think it's all part of the deal.
    But as time passes, you will be able to push many of those thoughts to the back, and your outlook will improve.
    Until then and even after, come here and visit or rant or ask. The site is open 24/7 and there are nothing but loving and caring people here.

    Hugs,
    CR
  • dyaneb123
    dyaneb123 Member Posts: 950
    Hey Loving-Life
    Welcome to

    Hey Loving-Life
    Welcome to the boards. What you will find here are a lot of ladies who know exactly how you feel. I'm 2 years clear from my BC, but everytime I hear of someone else's recurrance, I feel all the fear and uncertainty again and want to make my ONC. do a whole battery of tests to make sure all is well. I think that is normal for us as we better than anyone know that early DX is the difference between life and death often. Don't beat yourself up, but also don't be afraid to understand your disease. It sounds like you have a very positive prognosis.
    Dee
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    Welcome...
    ...the women and men here are the best companions you'll find for this journey.

    I'll bet just about all of us here relate to fearing that every little ache and pain we feel is cancer returning. I have a little cramp in my side -- do I have ovarian cancer? My leg aches after walking -- could this be bone mets? According to my oncologist, the women here, and everything I've read -- that's completely normal.

    I think it's important to 1) try to find a balance between being vigilant about your health and not overreacting, and 2) give yourself some time, and be gentle with yourself. If something concerns you, definitely get it checked out with your doctor, even get a 2nd opinion if you feel that your doctor isn't taking it seriously. But also keep in mind that you've only been out of treatment for a short time -- and it also sounds like you spent most of your treatment putting on a "brave face" and not really dealing with all the stress and emotions.

    No one tells you how difficult the period AFTER treatment ends is -- when you don't have all the appointments and treatments and tests to focus on anymore. It took me a good year after completing treatment to really start feeling normal and balanced again.

    Hope that helps,

    Traci
  • linpsu
    linpsu Member Posts: 747
    TNBC
    I too have triple negative and am scared silly about what lies ahead. I have completed all my treatments - surgery, chemo (A/C, Taxol), radiation, which was completed in November. I was Stage 3C and everything I have read about TNBC does not sound too encouraging since this was already a recurrence of cancer that I had 2 years ago. My mind just races day and night about my future. You are fortunate that you had no spread to lymph nodes; I had one positive node based on the pathology from my surgery that was not picked up on the PET scan done at the conclusion of chemo but prior to surgery. So that is what has me really scared. I am terrified that stray cells got loose before the radiation started. I was upset that the timing of all of my procedures was postponed due to vacations by my breast surgeon - the time from DX to the start of chemo was almost a month; from the time of the end of chemo to surgery was another month; start of radiation was over a month. It sounds like you really jumped on everything that you needed to do as soon as you could, which is really great. In hindsight, I should have switched surgeons. But anyway, it sounds like your prognosis is great. I know it's easy for me to say to just not dwell on it, but I know very well how difficult that is in reality.
    Hugs,
    Linda
  • TraciInLA said:

    Welcome...
    ...the women and men here are the best companions you'll find for this journey.

    I'll bet just about all of us here relate to fearing that every little ache and pain we feel is cancer returning. I have a little cramp in my side -- do I have ovarian cancer? My leg aches after walking -- could this be bone mets? According to my oncologist, the women here, and everything I've read -- that's completely normal.

    I think it's important to 1) try to find a balance between being vigilant about your health and not overreacting, and 2) give yourself some time, and be gentle with yourself. If something concerns you, definitely get it checked out with your doctor, even get a 2nd opinion if you feel that your doctor isn't taking it seriously. But also keep in mind that you've only been out of treatment for a short time -- and it also sounds like you spent most of your treatment putting on a "brave face" and not really dealing with all the stress and emotions.

    No one tells you how difficult the period AFTER treatment ends is -- when you don't have all the appointments and treatments and tests to focus on anymore. It took me a good year after completing treatment to really start feeling normal and balanced again.

    Hope that helps,

    Traci

    I am triple negative as well...
    it's been almost a year since my diagnosis.

    Wow, that sounds almost like a confession. It's no sin to be anxious. Just as Traci said, oh yeah, I found you here too, Traci (motions two fingers towards eyes and then points in the general direction of that end of the valley) There isn't some new ache or pain that makes me wonder...if.

    I know for me, I had aches before BC and some of what I am experiencing now is what menopause should be with or without that extra bonus of BC.

    My life was a whirlwind of tests, mastectomy, chemo, and radiation. I worked too and maintained a stiff upper lip, but I realized pretty early on that in order for me to heal I also owed others the opportunity to serve me. This was a HUGE step for me.

    This pink sorority is not one I would have pledged, but Hell, I'm here and it's time for a wicked toga party. Dare I suggest a panty raid on the prostate board?
  • 24242
    24242 Member Posts: 1,398
    Sorry It Happened to YOU
    I can tell you after surviving your kind of cancer for the past 13 or 14 years and have struggled many with that same pain in my side that eventually eased with a lot of time and learning to live in spite of the fears.
    Unlike doctors thoughts I have a grandmother that survived just less than 10 years so that reality stuck with me and not easy to let go. I have learned to live with Quality to my life by making sure the pains are looked at for if one doesn't look one might not find ways that can actually help if diseases left behind. I don't believe in suffering and do what I can to try and help ease the pain. I was told long ago if you do not exceed the recommended daily doses of advil or other over the counter meds one should not have problems. It is only when people start taking more that it becomes hard on our organs and side affects come through. Pain management has been quite a journey for me but one I recomend since I am doing things now that was thought I would never be able to do and that includes working.
    Tara
    stage 3, triple negative with 11 out of 21 positive nodes
    chemo radiation and double mastectomy one at a time
  • aysemari
    aysemari Member Posts: 1,596 Member
    Fear in a bottle....
    That's what I thought when I read your post. Why are you hiding your fear? You are entitled to it.

    Talking about it, even writing about it will help ease your fears. And coming to this board and writing
    about it AND be understood, does wonders for your fears.

    We are all very different in the way we handle our fears. I was your total opposite, I needed to know
    and understand everything. I wanted some control back after the floor had just been pulled from
    underneath me. And I was very open with my diagnosis, I admit sometimes I wish wasn't but if this
    isn't a true test for character, I don't know WHAT is. I think I will start getting anxious when I am
    no longer in treatment, when no one is monitoring me regularly. But I am sure it will also be nice
    not to have all those appointments and I will get over it.

    That said, I don't think you can be careful enough and I know if I had a pain or ache I would have
    it checked. Because I know who I am up against.

    It is an art really to balance life and the fear but it has be done, beautifully by many brave women
    on this board. This is why I am glad that you came here, you can unload some of that fear and
    find inspiration.

    Long story short, a warm welcome and I hope to see many more post from you!!!

    Hugs,
    Ayse
  • EllenaMaria
    EllenaMaria Member Posts: 69
    aysemari said:

    Fear in a bottle....
    That's what I thought when I read your post. Why are you hiding your fear? You are entitled to it.

    Talking about it, even writing about it will help ease your fears. And coming to this board and writing
    about it AND be understood, does wonders for your fears.

    We are all very different in the way we handle our fears. I was your total opposite, I needed to know
    and understand everything. I wanted some control back after the floor had just been pulled from
    underneath me. And I was very open with my diagnosis, I admit sometimes I wish wasn't but if this
    isn't a true test for character, I don't know WHAT is. I think I will start getting anxious when I am
    no longer in treatment, when no one is monitoring me regularly. But I am sure it will also be nice
    not to have all those appointments and I will get over it.

    That said, I don't think you can be careful enough and I know if I had a pain or ache I would have
    it checked. Because I know who I am up against.

    It is an art really to balance life and the fear but it has be done, beautifully by many brave women
    on this board. This is why I am glad that you came here, you can unload some of that fear and
    find inspiration.

    Long story short, a warm welcome and I hope to see many more post from you!!!

    Hugs,
    Ayse

    Loving Life- Welcome!
    It is soooooo important that you use this forum as a place to go. Your fears are real, you are real. Cry as much as you need to. Facing the beast is where you will gain your strength. I decided the day I got my diagnosis that I REFUSE to let this own me. It may kill me but it will never own me. I have felt like no one really understands what I am going through, no matter how hard they try, except those who are walking in the same shoes. I go to the store and wonder how many people in line have cancer. I wonder how many kids my daughter goes to school with, wearing those stupid bracelets, actually have a mom with cancer. Not only do I feel alone, my daughter does. You really need to share with someone. Coming here is going to really help you a lot. Do not hold back, ask whatever you need to. Even if it is to vent, vent. You are not alone, you really aren't.
  • fauxma
    fauxma Member Posts: 3,577 Member

    Loving Life- Welcome!
    It is soooooo important that you use this forum as a place to go. Your fears are real, you are real. Cry as much as you need to. Facing the beast is where you will gain your strength. I decided the day I got my diagnosis that I REFUSE to let this own me. It may kill me but it will never own me. I have felt like no one really understands what I am going through, no matter how hard they try, except those who are walking in the same shoes. I go to the store and wonder how many people in line have cancer. I wonder how many kids my daughter goes to school with, wearing those stupid bracelets, actually have a mom with cancer. Not only do I feel alone, my daughter does. You really need to share with someone. Coming here is going to really help you a lot. Do not hold back, ask whatever you need to. Even if it is to vent, vent. You are not alone, you really aren't.

    For now I will just say
    For now I will just say welcome and you are in my prayers.
    Stef
  • sweetvickid
    sweetvickid Member Posts: 459 Member
    Well it's about time
    Well it's about time you came and talked to us!. We totally understand how you feel. Most of us can say been there done that, got the stupid pink shirt too. I have to admit you gave me a chuckle. I have a colonscopy scheduled by my pc Dr. that is just routine for my age.The next day after she scheduled it for Feb I started freaking out thinking what if I have colon cancer! After what we have been thru it is just normal that our brains scream CANCER!!! over every little ache or pain.

    We also understand the brave front we put on for the family and public in general. Ya don't have to do that here. On this board you can voice your fears, vent, rant and rave! Here you are among sisters on the same journey. We are hear to listen to each other, offer encouragment and comfort one another.
  • pinkkari09
    pinkkari09 Member Posts: 877
    Welcome loving_life, I'm so
    Welcome loving_life, I'm so glad you found us! I share your same fears and I too am triple negative. DX with TN Stage 3C BC on 8-18-09, 15 rounds of chemo, 7 hour operation with three surgeons (Both ovaries, Both breasts, Immediate reconstruction) 6 days in the hospital then 25 rounds of radiation, my cancer went through all nodes and into my chest wall and neck. Cat scans, MRI's, Bone scans, PT scans and on and on and on. I have a PT scan this Thursday and my head is all messed up in the "what ifs" I had a dream last night that the scan lit up like a Christmas tree, I think these are all very normal fears, fears we can only share here. I'm so totally with you on all you have said, we tend to put on the tough face and keep on keepin' on for our family, kids, friends, co-workers or the like because we are "Warriors". This battle we battle is a tough one and we need each other in order to get through it, you come here and vent all you like and I'm sure you will get all the support you need. Welcome to the board you never wanted to join but will be so glad you did.
    Big Big ((Hugz)),
    Kari
  • jnl
    jnl Member Posts: 3,869 Member
    dyaneb123 said:

    Hey Loving-Life
    Welcome to

    Hey Loving-Life
    Welcome to the boards. What you will find here are a lot of ladies who know exactly how you feel. I'm 2 years clear from my BC, but everytime I hear of someone else's recurrance, I feel all the fear and uncertainty again and want to make my ONC. do a whole battery of tests to make sure all is well. I think that is normal for us as we better than anyone know that early DX is the difference between life and death often. Don't beat yourself up, but also don't be afraid to understand your disease. It sounds like you have a very positive prognosis.
    Dee

    Welcome! You have found the
    Welcome! You have found the best site full of sisters in pink that will encourage you, support you and listen to you.

    I am sorry you had to find us because of bc.


    Sending prayers and hugs,

    Leeza
  • ladyg
    ladyg Member Posts: 1,577
    Welcome loving_life
    You have come to the right place. You will get all the support you need. We are all here for each other.

    Hugs,
    Georgia