New to club... with questions

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Annanza
Annanza Member Posts: 4 Member
Hi everyone. My life has been an emotional roller coaster the last three weeks. I was diagnosed with invasive ductile carcinoma (several tumors in R breast) following a routine mammogram. Couldn't feel any lumps-- still can't. ER/PR+ and Her2nou -. Wow. Can't believe I'm writing this down so matter of factly-- I really don't feel that way! I will have a double mastectomy (waiting to hear the surgery date from the scheduler today). Decisions re chemo will be made following sentinal node pathology report/oncotype DX.

I'm 52 and haven't started menopause yet-- I'm not on the pill but continue to menstruate normally every 26 days. My oncologist wants me take tamoxifen for 5 years (which I gather is standard) and says I'll experience a normal menopause (whatever that is!). For those of you taking tamoxifen-- what has your experience been? Total hell? Just fine? Or something in between... Don't know why I'm so freaked out by tamoxifen, you'd think I had bigger issues on my plate right now.

I'm also interested in the experiences of those who opted for reconstruction via free fat transfer-grafting/BRAVA.

I live in a fairly rural area and there isn't a local breast cancer support group-- I'm so glad I found this group, Annie

PS. When does that anxiety-driven free falling feeling go away?

Comments

  • JuJuBeez
    JuJuBeez Member Posts: 332
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    Hi Annie. I'm glad you found
    Hi Annie. I'm glad you found us, but I'm sorry you needed to. This is a wonderful group, very helpful and supportive. The 'pinks' won't let you down!

    I was dx in 2010, age 43, with IDC, ER/PR+ Her2+. My tumor was 1 cm, felt no lumps, was found in routine mammo. I had lumpectomy with good margins, had sentinel node biopsy, and that was clear. I did not have chemo, as my Oncotype score was 12. I did have radiation 2x/day for 5 days. I have been on Tamoxifen since Aug 2010. I still have periods. My side effects have been, hot flashes (global warming), joint pain, bone pain, fatigue, eczema, foot and leg cramps, and uterine polyps. I have an endometrial biopsy every six months so the gyn can keep an eye on the uterine lining. I am on Effexor (75 mg, not ER) and Clonidine for the hot flashes. The Clonidine has made a HUGE difference in the hot flashes. I actually get cold for the first time in two years. I also take a Claritin and a 5,000 iu of Vit D every day. They both help bone pain, and I have felt a big difference with that as well. I do actually have allergies, and my Vit D level has been tested and extremely low for the past couple of years, so I'm not self-medicating with those two. You may have all of these problems, you may have none of these problems, who knows. Each of us metabolizes these meds in our own way. My onco believes Tamoxifen gives the most bang for the buck. He wants me to stay on it as long as I can. When I discussed changing meds, he said there will be side effects with any of these meds, and he really pushed me to stay on it if I could. He did say that if I felt strongly about changing class of meds, he would give me a shot to shut down my ovaries, then I could try the other class of meds. If I could tolerate it, then they would do hysterectomy.

    There are days that I feel great and can conquer anything, then there are days that I can't get out of my own way. I'm trying to tip the scale to have more good days. I don't think the cancer anxiety ever really goes away completely. Any time I have an appointment or something else pops up, I worry right away about what's it going to be. It's like we lose our 'innocence' about health issues after this.

    I'm sure there will be someone soon to post about the mast questions. I'm sorry I can't answer any of those for you. You are absolutely in the right place for support and answers. Everyone is awesome. And, I must say... I had the Tamoxifen bottle for a week before I got the guts to take the first one. I was scared from the side effects. My onco said to not read the literature on it, because I wouldn't want to take it. He was right. It's like when someone says, "Don't look down" and you look down. LOL

    Take care, and please let us know how you are doing!
    Julie
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    Welcome....
    I feel terrible

    Welcome....

    I feel terrible when I read everyone introduce themselves and way back when I just crashed the party without introduction


    anyhow..I went through Menopause and didnt' even know it...so went on tamoxifen shortly afterwards.

    MY oncologist insisted though my gyno I love said not his normal thing...to have internal ultra sound @ 6mths to check for thickening of uterus..which I did have...hysterecotmy exactly year ago..

    So to me meno was peice of cake per say...only warm and cold NOT HOT hot flashes..like I hear about


    Denise
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
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    Welcome!
    Hi pink sister! And welcome! So sorry you had to join this club, but you will get a lot of support here. Everyone is very caring.

    I too was dx with invasive ductal carcinoma at 32 (no kids). I did chemo, radiation (with boosters) and lumpectomy. Would have done mastectomy if my mind wasn't soooo crazy and so uneducated. But there is always time to do it later. I think you're in the right path, if this was recommended by your Dr.

    I'm on tamoxifen. started last August of 2011. The first few weeks were hard for me, emotionally. I am not the type to feel depressed, but the pill got me sooo down. I was very sad and moody. But now I rock it like a pro! I get vaginal ultrasounds every 6 months. I have ovarian cysts that Drs. are keeping both eyes on. My uterus looks fine, thank GOD! But it is part of the process to check your uterus and ovaries while you are on the pill. Recommendation is every 6 months. At first I was afraid of this pill. But it isn't bad at all, in my experience. I think you will do great.

    You are NOT alone. We are here for you.

    Prayers always! Hugs to you.
  • grams2jc
    grams2jc Member Posts: 756
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    Hi Annie!
    My mom is Anne, my niece Annie so have a fondness for your name.

    I was on Tamoxifen for 7 months only. My cancer was dxed at a 3c so the fact that it came back was not totallt unexpected. My Tamoxifen SE s were nausea, so I switched to evening...no problem then, HOT flashes, insomnia which I fixed with 1 Benadryl before bed.

    My anxiety eased when I gave in and started taking Xanax as needed. It's been a life saver.

    Wishing you only good things in a bad situation,

    Jennifer
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
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    Welcome
    Can't help you much on this but wanted to wecome you. There are plenty here who can help.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
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    Welcome
    Can't help you much on this but wanted to wecome you. There are plenty here who can help.

    Bumping up
    Doing my best to bump up all of yesterday's posts, past those of last night's spammers, so they don't get lost.
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
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    Menopause is different for
    Menopause is different for every one.I had bil Mastectomy no reconstruction i was also 67 at the time,had been on estrogen for years so didn't know what menopause was but when i found the cancer my Onc.took me right off of it and with in a month i was full blown hot flashes some thing terrible so when i went on the Tamoxifen i already had them so the only other thing was weight gain.I never had a hysterectomy so my Dr.checks me every 6 months so far so good.
    The Onc has me on Gabapentin witch helps with the hot flashes and lets me sleep at night which is great.So i guess my experience with it is just fine.That anxiety driven free falling feeling i don't think ever go's away we just push to the back of our minds and try not to think of it.Hope this help's keep in touch and lets us know whats going on.
    Hugs Frankie
  • Texasgirl10
    Texasgirl10 Member Posts: 668
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    Menopause is different for
    Menopause is different for every one.I had bil Mastectomy no reconstruction i was also 67 at the time,had been on estrogen for years so didn't know what menopause was but when i found the cancer my Onc.took me right off of it and with in a month i was full blown hot flashes some thing terrible so when i went on the Tamoxifen i already had them so the only other thing was weight gain.I never had a hysterectomy so my Dr.checks me every 6 months so far so good.
    The Onc has me on Gabapentin witch helps with the hot flashes and lets me sleep at night which is great.So i guess my experience with it is just fine.That anxiety driven free falling feeling i don't think ever go's away we just push to the back of our minds and try not to think of it.Hope this help's keep in touch and lets us know whats going on.
    Hugs Frankie

    Welcome
    Hi, I'm so glad you found this board although I'm terribly sorry that you have a reason to be here. I don't know too much about the type of cancer that has attacked you as I'm triple negative inflammatory breast cancer, but I know that there are several ladies here that have ICD. Please come here often as this board is filled with a wealth of knowledge and there is always someone that can answer questions.

    Take care and get plenty of rest.

    Hugs and God Bless,

    Dawne