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  • mtnbiker
    mtnbiker Member Posts: 34

    thanks for the info. I see onoc next week  ..thats why scan today, they think it is attached to the chest wall?

  • omaz
    omaz Member Posts: 4,218
    mtnbiker - I also have not heard of rads before surgery.  I had surgery then chemo then rads.  I thought this BCO article about neoadjuvant chemo was interesting - LINK
  • mtnbiker
    mtnbiker Member Posts: 34

    thanks everyone !!! Maybe i heard the doctor wrong:( I think my head was spinning  LOL

  • omaz
    omaz Member Posts: 4,218
    mtnbiker - One thing about treatment is that it is always evolving and being refined so perhaps that is a newer thing.
  • Kay_G
    Kay_G Member Posts: 1,914

    I'm sure your head was spinning. It's good to come here, it will help you know what you want to ask your docs. Make sure you all your questions answered so you can feel confident and comfortable with your treatment plan. It makes all the difference in the world. At least it did for me.

  • omaz
    omaz Member Posts: 4,218

    I brought notes so I wouldn't forget anything and also took my husband or my best friend with me to help me discuss things afterward.

  • Awnooo
    Awnooo Member Posts: 56

    welcome mtnbiker im a newbie too, i'm having chemo first, bilateral mastectomy second, and no radiation.

    i honestly would have preferred to do the surgery first but because i wanted an immediate reconstruction i had to do chemo first and because of the HER2 of course. i do have second thoughts about that all the time but im leaving it on God's hands. 

    im new to this and i was wondering... i dont know my CA 27.29 score but i know for sure they ran the test... should i be concerned?

    also would mets show on ct/bone scans or are pet scans better? anyone? 

  • Kay_G
    Kay_G Member Posts: 1,914

    I think some oncs prefer ct/bone scans and some prefer pet scans. My onc thinks for breast cancer ct and bone scans are better. She thinks pet scans work better for some other cancers.

  • lago
    lago Member Posts: 11,653
    Hi YaYa. I can never remember what threads I see people on. If you hadn't mentioned it I would have never know. Tongue out
  • kennylynne
    kennylynne Member Posts: 75

    Mtmbiker I had surgery first as well, I had 1st chemo before they placed my port. they placed my port a day before my 2nd cycle of chemo and man was that terrible!!! I don't suggest that at all, I did tell my surgeon that as well, never again have someone do that....... chemoed, boil in your chest,[ that is what I called my port] and hair loss all in one week!!!! My most devestating time throughout my journey for sure.

    I was wondering what a oncotype test was??? I am from Canada and not sure if that is what the oncologists do here???? Never heard about it. Judy67 I am not sure if I am used to my port I know that it is a life line but have troubles getting used to it, however it does not hurt so don't be worried about that. Hugs

  • dragonfly1
    dragonfly1 Member Posts: 516
    Kennylynne The oncotype test is used in cases where it is uncertain about whether chemo should be used. It's not usually used for Her2+ tumors because we almost always need chemo so it wouldn't be very helpful information in most of our cases. Here is some more info about the Oncotype test from their website:
     The Oncotype DX test is a diagnostic test that can help women with some types of breast cancer learn more about the biological activity of their specific tumor. Along with other pieces of information, the results from the Oncotype DX test can help women and their doctors make decisions about whether or not to include chemotherapy in their treatment plan. It can also help indicate how likely it is that a woman’s cancer may return in the future (distant recurrence).

    The Oncotype DX test looks at a group of 21 genes within a woman’s tumor sample—16 cancer genes and 5 control genes—to see how they are expressed, or how active they are. The results of the test are reported as a quantitative Recurrence Score® result, which is a score between 0 and 100 that correlates with the likelihood of a woman’s chances of having her cancer return, and the likelihood that she will benefit from adding chemotherapy to her hormonal therapy.

    The Oncotype DX test provides information in addition to standard measurements (such as tumor size, tumor grade and lymph node status) that doctors have traditionally used to estimate how likely a woman’s cancer is to return, and to help her make treatment decisions.

    .
  • meglove
    meglove Member Posts: 105

    Hi Lago, your post about normal male is really funny. Sounds like a computerized report. Which test did your doc order to check if you are post menopause? I will ask my doc to order it for me. Is it by blood test?

  • AlaskaAngel
    AlaskaAngel Member Posts: 694

    Hi,

    In January I will be 10 years out from treatment (still no evidence of disease) as a triple pos, and just thought I'd post.

    AlaskaAngel

  • dragonfly1
    dragonfly1 Member Posts: 516

    Alaska Angel-very encouraging, thanks for posting!!!

  • omaz
    omaz Member Posts: 4,218
    Yay AlaskaAngel - That's good to hear!
  • mtnbiker
    mtnbiker Member Posts: 34

    WOOHOO!!!

  • lago
    lago Member Posts: 11,653

    meglove it is a blood test. It says "Follicle Stimulating Hormone"

    It states my FHS is 102.6 (Post-menopausal being 23-130 mIU/Ml)
    It also states my "final status"  Estradiol level as <10.0 (Normal male: PrePubertal <10 pg/mL

    So I don't know if when they first started testing I was 102.6 then Anastrozole kicked in and sucked the rest of my estrogen out of me giving me that ,10.0 Estradiol level. (Still haven't grown a penis so maybe a not so normal male)

    AwesomeAlaskaAngel (Note the triple A rating!)

  • Judy67
    Judy67 Member Posts: 213

    Omaz, Lago -  Originally my Surgeon and Oncologist thought I would not need chemo because the invasive component of my cancer was only 3mm and was removed with the original biopsy.  The mastectomy pathology found only Ductal carcinoma.   Herceptin not usually recommended with tumors that small but to be on the safe side, onc wanted the Oncotype DX test done and they used the original biopsy tissue.  I'm not happy about chemo of course, but I am glad I went ahead and did the test.  Coming out with a score that high made the choice of chemo a no-brainer for me.  It's the only way I'd be able to sleep at night. 

  • kennylynne
    kennylynne Member Posts: 75

    I love those stories AlaskaAngel!!!!! Way to go! There is a friggin light at the end of this tunnel I Love it!. Thanks Dragonfly1 for all the info, I will ask my onc about that whenI see her Nov 22nd I also start my tamoxifen then as well, how are the SE's with that anybody?????

  • omaz
    omaz Member Posts: 4,218
    That was smart of you and your onc Judy! 
  • mtnbiker
    mtnbiker Member Posts: 34

    I a soooo happy that you found a way to sleep at night!!

  • pejkug3
    pejkug3 Member Posts: 277

    KENNYLYNNE - I started Tamoxifen on September 1.  I have no discernable SE.  Definitely premenopausal.  STill having cycles but they're lighter and shorter than before.  I'm 35.

  • carberry
    carberry Member Posts: 997

    mtnbiker   I pretty much did the same protocol, as my tumor was on the chest wall...hence did not see it on mammogram.  I did the chemo first to shrink it then surgery then rads.  I trusted my BS and followed whatever his plan was.

    Alaska-angel  THANK YOU, giving us hope!

    Everyone  I was cracking up reading your post about meditation.  I once went to get hypnotized for weight loss (was dragged by a friend) and when everyone else was out cold, I had my head down and was looking around the room thinking about what I had to do when I got out of there.

    I have scheduled port removal for Nov 29  YAHOO!

  • arlenea
    arlenea Member Posts: 1,150

    Interesting article Omaz.  Things sure change quickly don't they.

  • mtnbiker
    mtnbiker Member Posts: 34

    Good to know ....I thought thats what I heard...tumor was not seen on my mammo ither, i felt it ..did it shrink? how long before surgery?

  • mtnbiker
    mtnbiker Member Posts: 34

    thanks, mammo didnt show mine ither, I felt it. did chemo shrink it?

    FYI my wonderful husband records are conversations with his i-phone at drs visit , really helps !!!

  • Kay_G
    Kay_G Member Posts: 1,914

    I think you're asking car berry, but I had a tumor close to my chest wall. Chemo shrunk it and bs was able to get clear margins without having to touch my chest wall.

  • kennylynne
    kennylynne Member Posts: 75

    Thanks Pejkug3. Good to know, another question being....... were you advised not to drink on tamoxifen???? The chemo seems to have put me in menopause as I haven't had a period since my first cycle of chemo will it come back? I am 44

  • dragonfly1
    dragonfly1 Member Posts: 516
    kennylynne I've been in "chemopause" since the first cycle of chemo in Feb. and I'm wondering the same thing (I'm 42)-haven't had a period again either. From what I understand it really varies and depends on the individual. I think I remember reading somewhere that chemo can cause periods to stop for up to 2 years in pre-menopausal women but they can still return eventually. Tamoxifen is another story-also a mix-can cause irregular periods, if you have them. I was not advised to avoid drinking on Tamoxifen and I've been enjoying a glass of wine now and then. I will say that the alcohol affects me more quickly/strongly than it used to (not necessarily a bad thing:)
  • specialk
    specialk Member Posts: 9,246

    dragonfly - so now you're a cheap date, right?

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