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Stage 1, grade 1 and pre-menopausal

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  • Crescent5
    Crescent5 Member Posts: 64
    edited March 2012

    Druanne, how accurate is cancermath? I'm curious because it gives me better odds than adjuvant. I see you have an oncotype of 3, that's AWESOME. I think I'd probably forgo tamox with that score. Mine is a 6, and onc says I have 9-10% risk w/out tamox. Too high for me.

    I have an update: I got clarification from onc's office. I do not have a clotting disorder. I have a mutated gene (prothrombin gene mutation) that may mean a clot some day (the odds I saw were 1 in 1000 which is nothing IMO). So I'm thinking tamox is back on the table. I would love to take fareston, but I pay for meds OOP, and that stuff is wicked pricey. Bummer.  

  • Druanne
    Druanne Member Posts: 74
    edited March 2012

    I'm not sure how accurate it is :) I do know that my RO agrees with me which makes me feel a bit better.........:) A score of 6 is SUPER LOW TOO!!!

  • Kelleyod
    Kelleyod Member Posts: 125
    edited March 2012

    Hi guys. . .

    Just checking in on a Friday night.  Had first Zoladex shot today - guess I am underway . . . .   finalizing radiation thoughts early next week.   I am thankful for a little traction . . .Yes, the needle was big but it was not unbearable at all.   They did lydacaine me up for it on injection sight . . . and that was slight pinch and burn but again, not unbearable.   thanks for all the thoughts (ALL of them - pro and con!  when I open a door for feedback  - I want it all!). . . .

    Hawk - My cancer center did my genetic testing.  Moffitt Cance Center has a genetic arm to it.   I am glad I did it but slightly concerned on long term insurance effects.    Do you have a genetic center close to you?  I can reach out to my couselor types and see if they have a place to recommend.  PM me if you want me to. . . . 

     Hope everyone else is doing well . .. and feeling strong!

    Oh - just cracked open the package on my juicer today - woo hoo!  Anyone out there juicing with a good recipe to share?  I need 'em. . . .

     Thanks!   Hugs to all. . .

    kelleyod

  • hawk
    hawk Member Posts: 255
    edited March 2012

    Thanks Kelleyod - I am first going to call the genetic center where I did my BRCA test.  Since my mom was just diagnosed, there was no reason for more tests besides that.  I'll call on Monday, if they don't help, I'll PM you!

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited April 2012

    Has anyone had the BRAT test?   The geneticist recommended this test, after BRCA was negative.  This would be an out of pocket expense, not sure if it's worth it.   

  • C-squared
    C-squared Member Posts: 338
    edited April 2012

    what is the "BRAT" test?

  • Bern25
    Bern25 Member Posts: 8
    edited April 2012

    I had the BRAT test...my insurance covered it though...It test for anything the BRAC1+2 may have scaned over....I also had one more done...not sure of the name but I am waiting for the results, that one test for other mutations since of have multiple cancers in my family...if you have daughters it is good to get. I have 4 daughters and so far with family history and mapping I will be getting a letter recommending they start their screenings at 27. This will be helpful for insurance purposes incase they don't want to cover their mammo's or any other early screenings they may need. My youngest is 23 and my oldest is 30, so two of them should already have gone for their baseline mammo's.....

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited April 2012

    Thanks Bern25.  I don't think that the BRAT test will do anything for me, but I think that this would be good information for my daughter, maybe my son as well.  When you find out, would you mind sharing the name of the other test that you had done, too?  

  • hawk
    hawk Member Posts: 255
    edited April 2012

    I am having the BRAT test done if the BRCA1/2 comes back negative.  I was told it is $700.  My insurance does cover it. 

  • lanagraves
    lanagraves Member Posts: 40
    edited April 2012

    I am Stage 3, Grade 2, 38 years old and worry about the same thing. I want to do everything possible to prevent recurrence, although i know there is no way to guarantee it will work. I'm considering prophylactic ovarian removal because I may have a lot of years to produce estrogen yet.

  • Bern25
    Bern25 Member Posts: 8
    edited April 2012

    joyh1109...Yes, I will post when I get the letters back and let you know what they mean. If nothing else it should help the overall picture of why some get BC and not others for the search for the cure.

    Ianagraves...I am getting my ovaries out because there is still alot of estrogen production also but I am also 49 and definitly not having any more children since I already had a hyster 10 yrs ago. I am hoping by not taking the tamoxifen I will do better on the other preventive meds (femera) they give to postmenopausal women. My surgery is scheduled for the 10th. I am worried about sudden menopause effects but on the other thread many women said they are doing alot better then their fears were.......

  • Bern25
    Bern25 Member Posts: 8
    edited April 2012
    the link is.... http://community.breastcancer.org/forum/78/topic/778898   hopefully I did that rightSmile
  • kingjr66
    kingjr66 Member Posts: 406
    edited April 2012

    lana and berne - I'm going for total hysterectomy.  I am 52 and still pre-menopausal and no end in sight just yet.  I'm going for the total package since I have fibroids. I've asked for years (since I was in my 30's) to remove my ovaries because I have suffered all my life with ovarian cysts.  I did not want any children and begged to remove them but no doctor would because of my age.  If they had I probably would not have gotten breast cancer and this age.

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited April 2012

    I'm still on the fence about ooph vs. ov suppression shots - leaning more towards the shots.  MO is getting back to me on what the reduction risk is, for my stats. And I'm wondering if I can delay the shots for a year, as scheduling a once a month injection is almost impossible for me right now.   Looking into the possibility of a 3 month shot - yikes - needles for me provoke anxiety. 

    Bern25  I wonder how long it takes for estrogen to reduce, after an ooph.  My MO recommended  that I continue Tamoxifen for a few years, after ov supp shots are started, or an ooph is performed.  Apparently the Tamoxifen continues to be effective for a few years, until estrogen levels drop to a low level.    

  • kingjr66
    kingjr66 Member Posts: 406
    edited April 2012

    Please, anyone opting for shots, please do your homework, especially if you are combining it with tamoxifen.  Research the risks and SE's.  I only say this because I once worked for a drug research department at a verterens hospital and know too much about altering the body's own natural chemistry with the use of drugs. I am not an expert but I feel better giving you ladies caution and ask that you must do your homework. 

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited April 2012

    Thanks kingjr66 for your response to this.  I'm not sure if the reduction in recurrence is enough for me to warrant the shots or ooph - waiting to see the numbers from MO.  If the risk is great enough, I will go forward with some type of ovarian suppression - the thought of recurrence is too scary in my opinion.  

  • kingjr66
    kingjr66 Member Posts: 406
    edited April 2012

    Joy - my onco score was 13.  10-15% recurrence without taking tamoxifen.  I am not doing the hormones or shots, removing the ovaries is my option even though I have a low score.  I'm not letting cancer mess with me anymore so I'm totally supressing it from coming back.  I have not seen enough statistics that tamoxifen works. 

  • bja_homer
    bja_homer Member Posts: 7
    edited April 2012

    I am newly diagnosed & brand new to this discussion board.  I am not sure if I am posting to the correct place.  I have stage 1 lobular cancer.  I had a lumpectomy 10 days ago & was told there were clear margins.  It was not in the sentinel node.  I am waiting to visit an oncologist.  I am the type of person that worries like crazy.  I am estrogen positive.  I am leaning toward asking for a double masectomy.  I don't want to take tamoxifen if possible.  My gynocologist said that will increase my risk of uterine cancer.  I am looking for input.  Should I have my ovaries/hysterectomy done as well.  The bottom line is that I want to be worry and cancer free as much as possible.  I do not do well waiting for results, etc.  I am thinking if surgeries can reduce my risks of recurrence then that is what I want to do.  Sorry if I am rambling.  This is very new to me.

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited April 2012

    bja  homer,

    to give you an opinion,we need to know your age,... is there a family history, ....

    chocolate

  • bja_homer
    bja_homer Member Posts: 7
    edited April 2012

    Sorry about that.  I am 44.  My dad's sister battled breast cancer for 16 years.  She passed away 10 years ago.  I don't know what kind of breast cancer, etc. she had.  Her husband doesn't remember. 

  • Bern25
    Bern25 Member Posts: 8
    edited April 2012

    Welcome bja_homer...I am 49 with a strong family history, lots of estrogen still in play. I had a BMX and I will be having my ovaries out on the 10th, I already had a hyster 10 years ago(no uterine cancer risk there). Since I will not being having anymore childern and I am near menopause anyway I see no reason to keep the "main factory" producing my estrogen. I am not a big fan of tamoxifen and I am hoping the surgical menopause does not have long  and damaging effects as some of the meds can have. Of course I will need to increase weight bearing exercise, up nutrients/omega 3's in my diet, etc. just like any other women who goes through this naturally but "I" feel better doing it that way. Everyone women has a different reason for their plan of attack because of what they can handle in worries, etc. I hope this was helpful

    Bern

  • bja_homer
    bja_homer Member Posts: 7
    edited April 2012

    Thank you for sharing.  Do some people ask for a BMX and complete hyster as a precaution?  It seems like if everything is removed that I would be better off. 

  • Bern25
    Bern25 Member Posts: 8
    edited April 2012

    I did because of strong family history for the BMX plus they found a second spot when they did an MRI after the first lumpectomy. The second spot was Invasive so I wasn't taking any chances. The OOPH is also because of the estrogen and since the cancer was highly ER/PR+ I figure the next place it would have seeked out was the ovaries and that spot is harder to catch without regular screenings, etc. Plus I didn't want the tamoxifen. Now I may get Femera or something like it which seemed like it had less side effects. Your doc is your best adviser for what they recommend when giving choices of treatment, but only you know what you want to worry about or how confident you are with your choices. You can go to 10 different sites and get 10 different statistics but when it comes down to it, you are the one that has to feel good about it.

    Being here you can see how things are going with those who have done it different ways...it is great to know you have so many sisters who can help...and you are not aloneSmile

  • kingjr66
    kingjr66 Member Posts: 406
    edited April 2012

    I agree with Bern25 although I did not opt for BMX but am having hysterectomy next month.  I also will not take tamoxifen.  The key is to reduce/stop the estrogen production.  

  • bja_homer
    bja_homer Member Posts: 7
    edited April 2012

    My current thoughts are I want to have a BMX (don't really like the word want but I guess it kind of applies given the situation).  It sounds like for peace of mind having a hysterectomy would be next if I don't want to take tamoxifen. 

    I am confused by the term invasive.  I was told I had a 1.1 cm lobular estrogen positive cancer in my right breast.  The doctor removed it with clear margins.  Does that mean I had invasive cancer?  Thank you, Michele

  • bja_homer
    bja_homer Member Posts: 7
    edited April 2012

    Do some people have a BMX still take tamoxifen?  Do some people that have a BMX and hysterectomy still take tamoxifen?  Thank you, Michele

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited April 2012

    bja_homer  I had a BMX and take Tamoxifen.  My MO said that if ovaries are suppressed or removed, he would recommend that I still take Tamoxifen for a few years. 

    Your stats indicate Stage 1, which is an invasive cancer.  Stage 0 is DCIS, ductal carcinoma in situ, which is cancer that has started in the ducts but has not spread beyond the ducts.  I'm not familiar with ILC, maybe somebody else will chime in on this. 

  • dreaming
    dreaming Member Posts: 219
    edited April 2012

    I am a long term survivor and I my situation was similar , only I was 39, and I was ovulating for a long term, even that I went into chemo induced menopause.

    I wanted a mastectomy and chem, I had 2 tumors, one invasive. I also was recommended Tamoxifen, took it , bad side effects, the same with Evista. My onc told me that my survival was 70% without them and 73% with them. I prefer the latter, but that is me.

    I am glad with my choice of treatments. BC is fickle, one never knows. April 17 is 21 from dx, but still I watch my body like a hawk, we are never done with it.

  • MTnester
    MTnester Member Posts: 147
    edited April 2012

    I had a BMX and a hysterectomy and take Tamoxifen. However, the hysterectomy was only 2 months ago and I suspect my MO will change my medication at my next appointment. I am 44.

  • Bern25
    Bern25 Member Posts: 8
    edited April 2012

    bja_homer---ILC is Invasive Lobular Carcinoma which is started in the Lobule glands, which send the milk to the ducts under the nipple, etc. Having a BMX won't dictate if you take Tamoxifen or not, your estrogen source and level will because it suppresses your ovaries from producing it.

    MTnester---did they do a total hysterectomy with ovary removal? My first hyster they left the ovaries because of my age. I was wondering why you were still on Tamoxifen unless you started it before the surgery was scheduled? One of the main reasons for having my ovaries out was to avoid the Tamoxifen.

    Dreaming----CONGRATS one 21 years...that is Awesome!

    Best to all..........

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