TRIPLE POSITIVE GROUP

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited September 2015

    just was at a Gilda event with an MDAnderson oncologist gynecologist who talked about this very subject. The possibility of endometrial cancer can occur and if you regain your period any time after or during tamoxafin therapy, go to a gynecologist that specialize in cancer. Bleeding can be an early sign, and at anytime in your body, you can have two different types of cancer. Just be your own advocate she said. She also said that at any time your cancer can change, it is not a definite, but you must always be on top of any changes in your body. Cancer is always changing.

  • Gretagirl
    Gretagirl Member Posts: 182
    edited September 2015

    Jerseygirl927 my daughter went to MD and those words echo still "pat attention to your body and any changes." Good advice!

  • runningcello
    runningcello Member Posts: 110
    edited September 2015

    My consultation with an OBGYN is tomorrow :) let's hope the irregular bleeding was nothing!!!!

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2015

    runningcello -- Good luck! I'll be visiting my OB-GYN soon, too. I will ask about an ooph then.

  • runningcello
    runningcello Member Posts: 110
    edited September 2015

    I experienced some sadness last night.. I hate the feeling that I'm only 25 & the rest of my life I'll have to think about my cancer coming back & if I'll live to be older. It just sucks. I know it's a horrible disease at any age.. But it's like, I wanted to truly live without the fear of dying for the majority of my life. Diagnoses at 50 or 60 means I could have lived my life without the fear of dying or fear of leaving my future kids motherless. It's a heavy burden to be in remission because what does that mean anyways.

  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    Runningcello I know how you feel it's a terrible thing I hate when I think about trips and growing old seeingmy children graduating and not knowing if I will be around for it all I wish this happened in 30 years at least I would have a had a somewhat full life and seen my children become adults it's so hard and scary I must say I'm in a better place but I also take xanax as needed and a very low dose of effexor :(

  • runningcello
    runningcello Member Posts: 110
    edited September 2015

    stephmoen I pray we both never have any recurrences. I am grateful for my belief in God because I believe no matter what comes of this life, I pray that what's awaiting me will make up for the suffering & bring complete joy to my soul.


    I stray away from medications because I don't want to develop a dependence to anything but I do think they're extremely helpful .. Especially during those low points :/:(

  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    yes I also have a strong belief and relationship with God definitely helps me through..the effwxor was prescribed to me after I cried every night looking at my children it has helped so much but with time I hope to get off it I've never been the type to take medications xanax is being used from my anxiety with surgery coming up Monday can't wait to get it over with and move on! Enjoy the new married life Runningcello you deserve it! Hope you had a great honeymoon somewhere

  • Kthielen
    Kthielen Member Posts: 194
    edited September 2015

    running cello,

    I totally understand how you feel and want you to know you are not alone. I was diagnosed at 38 years old, I have 3 kids and it's hard to think of my mortality on a daily basis. I try to be positive and think optimistically, I have faith in God and pray regularly as well. I am truly grateful for all the wonderful women on this site who truly know and understand what we(breast cancer survivors) are going through! This is the biggest emotional roller coaster anyone will go through and we will have good and bad days. Stay strong!!

    Kathy

  • moni731
    moni731 Member Posts: 293
    edited September 2015

    Hi all, I am so sad that I see so many young people with this. At least I am 54 now, and will be joining the stage IV group with both Mets to liver and a new tumor in opposite breast. Four years and seven months post original diagnosis.

  • runningcello
    runningcello Member Posts: 110
    edited September 2015

    thank you all for the support.. I pray you all have long healthy lives.. I hate this stupid illness. It's dumb. Ugh


    And stephmoen, I certainly enjoyed my honeymoon & have now began graduate school :)

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited September 2015

    runningcello, we had 3 new members at our breast cancer group, the youngest was 30 and Dx was triple negative, she is single and wants kids bit they are scheduling total hysterectomy because she has the bracca 1 gene that is positive. No children for her, and the MD Anderson oncologist gynecologist saw no options. It was very heart breaking, but she was optimistic that at least she will adopt if she gets the opportunity to live long enough. She has already had chemo for the breast cancer and waiting for hysterectomy shortly. We pray that we can all accept what God has chosen for us to go through while we are here on this earth. Make memories while you can, while we all can. Life is not a given, but a gift for a short time.

  • Suladog
    Suladog Member Posts: 952
    edited September 2015

    Running,

    I know your feeling as when I was diagnosed I was in my 30's trying to get pregnant. I was given a poor prognosis as I was triple negative. I never expected to be around now that's for sure. That was 25 yrs ago. I know it sounds like a cliche but it does get better. I can't say I never thought about it for most of my life after diagnosis but the more time passed the more it was in the rear view mirror. I thought about it ALL the time right after chemo ended and I felt the same way you do....why do I have to deal with this now! At this age!!! But, as time passed it didn't consume me as much and I continued with my life. I had another cancer in my other breast last year and I have to say having this happen when one is older doesn't make it any easier. It's always freak out time. However, titles like this, support like this never existed back in 1990 because... Duh no internet so we were all on our own , plus because of not having sites like this it was very difficult at the time to find other young women dealing with the same thing. Everybody I met was someone the age I am now or older and so even though I made a lot of friends during that time we had different concerns and different lives. Anyway it's great we have a place like this to vent. Take care

  • lago
    lago Member Posts: 17,186
    edited September 2015

    Runningcello sounds like it's time for me to post my speeches:


    seat belt speech:

    You don't assume you will get into a car accident every time you get in your car. You do put on your seat belt and drive carefully. Same with breast cancer. Eat right, maintain a healthy weight, exercise, and take your hormone therapy (if prescribed). No reason to think you are going to get mets until you actually have a symptom.

    shit happens speech:

    Some people win the lottery and become millionaires too but do you really think that's going to happen to you? Shit happens. Sometimes good shit, sometimes bad shit, but most of the time shit doesn't happen. Don't assume shit is going to happen to you.

    What If speech
    Remember the word "if" is in the middle of the word "life" for a reason. As long as you have life you will always have "what ifs". It's your MO's job to worry about those cancer "What Ifs"

  • Gretagirl
    Gretagirl Member Posts: 182
    edited September 2015

    Suladog and Lagos well stated! I keep telling myself that I do not want to spend the rest of my life worrying about cancer!

    Runningcello and Stephmoen understand y'all's feelings. My youngest at 25 was Dx with adenocarcinoma on her vaginal wall. That was one year ago she was dx in August of last year. She too has been on a rollercoaster! She was in the middle of planning her wedding which was in December. She and her fiancéeknew she would probably never be able to have children. They were married in Decmber and her chances of children are slim to none. She has to return to MD every three months for check up and she too has fears like y'all. But as a little more time goes by with good reports she relaxes a little more and tries her best not to let cancer define her and not control her. So as time goes by hopefully you will feel better as well

  • runningcello
    runningcello Member Posts: 110
    edited September 2015

    Thank you all for your reminders.. I hope with time it just gets easier.. I had my papsmear and transvaginal ultrasound today and everything looked good so thankfully the weird period was nothing to be worried about.


    I'm glad for this forum to vent when needed. I may take a hiatus for a short while just to try to not have my thoughts of cancer consume me.

  • KateB79
    KateB79 Member Posts: 747
    edited September 2015

    Lago and Suladog, thanks for that. :)

  • lago
    lago Member Posts: 17,186
    edited September 2015

    Your welcome Kate

    Thanks Gretagirl

    and runningcello it does get easier with time. But it does take time.

  • Suladog
    Suladog Member Posts: 952
    edited September 2015

    What Lago said!!!!

  • debiann
    debiann Member Posts: 1,200
    edited September 2015
    moni, so sorry to hear about the stage IV dx. Did you do herceptin the first round and tolerate it well? I see many on the stage IV reaching NED with long term herceptin, and of course there is now Perjeta too. Keep us updated on what your treatment plan will be. Prayers for you.
  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited September 2015

    thanks lago, I think we all can use those speeches from time to time. We all fear death, and cancer can get us there faster, but reminders help to keep things in perspective. I tend to be negative, because I am a realistic person, keep me positive if you can and remind us always.

  • moni731
    moni731 Member Posts: 293
    edited September 2015

    Debbiann- Thanks. Yes, I did some Herceptin, 12, but was allergic to it and my NO thought the risks were too much. Now on 4 years later, she wants to try again. She is bringing my immunologist on for help and Kadcyla.. Just waiting for the receptors report. She's pretty sure it will be triple + . Got the port placed today, along with both. Biopsies . Not a. Happy camper tonight.

  • Jumpship
    Jumpship Member Posts: 305
    edited September 2015

    Someone asked today why I'm taking Tamixifen if I had a double m and I don't know. No breasts no need for estrogen blockers. Can someone help me understand this please

  • debiann
    debiann Member Posts: 1,200
    edited September 2015

    First, even with an mx, there is still some breast tissue left, they can't get every single cell.

    Second, if there were any stray cancer cells in you lymph nodes or other organs that have gone unnoticed, you want to rob them of there fuel -estrogen- so they cannot grow.

  • Soccrmom13
    Soccrmom13 Member Posts: 13
    edited September 2015

    I was diagnosed with triple positive Breast cancer at the beginning of 2013. I went through Lumpectomy, Chemo, Radiation, and Herceptin. I am very greatful therewas a lot to throw at it. I was able to retire from a mega corp on April 1st and was on my first retirement trip.

    Unfortunately I slipped and fell in the shower and broke my Tibia. I had surgery and am no weight bearing for 12 weeks. I. am so frustrated and scared. We are logistically figuring out how to get me home as I am up in Washingt and I live in Southern California. I am on Arimidex and I hope this drug did not lead to the fracture. I am working on telling myself I fought cancer I can fight this.



  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited September 2015

    remember your body will continue to make estrogen from your fat cells and other glands in your body. So if you're tumours are estrogen based then you. Need the estrogen killers. Of course we still will make estrogen, even without excess body fat. I sometimes think it's a no win regardless.

  • alice12
    alice12 Member Posts: 55
    edited September 2015

    anyone does 4 cycle of TCH instead of 6 cycle?

    I wonder if 4 is sufficient enough for stage 1, node negative.

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited September 2015

    My OB actually told me not to get Mirena because Mirena can cause bleeding. He said he never wanted to worry if the bleeding was from the iud or something else and then have to subject myself to unecessary biopsies.

    He also did a pap. Which came back with "atrophic changes" atrophy...I cried.

  • Gretagirl
    Gretagirl Member Posts: 182
    edited September 2015

    Alice12 I wonder the same thing and can not seem to find an answer so if you please share!

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited September 2015

    I only had 4 tch treatments before dr called it because of side effects, feel 100 % better too. It does happen...

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