No chemo for me

hope67
hope67 Member Posts: 181
in Breast Cancer #1

I had an appointment yesterday and medical board decided for Tamoxifen and no chemo. I asked my doctor for an explanation since I had one positive node and two tumors and he said that the most important factors for decisions are properties of the tumors. I have to believe that this was the right decision after all. I do feel relieved in a way, I guess noone wants chemo if there is no need.

I started Tamoxifen yesterday and I am feeling a bit nauseated. It may be mild side effects or something else.

I have made a decision to do a second mastectomy and I will talk about it in a few days with my plastic surgeon. I just don't feel safe after having invasive lobular carcinoma which is often bilateral (20-30%), with full breast of lumps, and no available exams right now to find out if I have it in my left breast or not.

Take care everyone, Carmen

Comments

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #2
    I also had infiltrat****

    I also had infiltratimg lobular, the reason I had chemo was be tumor was just because the size of tumor scraped through at required size advised for chemo.  Yes it tends to go to other side.  My size was reduced on my good side to match removed breast and the material taken away was tested just as normal procedure and pre pre cancer cells were found, a lot of them with one active area.  Same cancer hence bilateral.  You are doing the right thing.  Take care and good luck on Tamoxifen.  I have just changed to Arimadex and it is suiting me better for some reason.

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #3
    Sorry.     Infiltrating

    Sorry.     Infiltrating lobular, ipad acting up

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #4
    When I started tamoxifen (it

    When I started tamoxifen (it iwll be 5 yrs in Aug) my oncolgist wanted my OB/GYN to do internal ultra sound (NOT sure of official name) to look for Thickening of uterus. THE gyno said as rule of thumb I do not do that. She insisted and we started doing them regularly followed by D & C. So if not one suggests it-just something you may want to ask about.

     

    IN hind sight I am glas she insisted.

     

    Denise

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #5
    disneyfan2008 said:

    When I started tamoxifen (it

    When I started tamoxifen (it iwll be 5 yrs in Aug) my oncolgist wanted my OB/GYN to do internal ultra sound (NOT sure of official name) to look for Thickening of uterus. THE gyno said as rule of thumb I do not do that. She insisted and we started doing them regularly followed by D & C. So if not one suggests it-just something you may want to ask about.

     

    IN hind sight I am glas she insisted.

     

    Denise

    Characteristics of tumors

    There is so much more now known about specific characteristis of tumors and which of these characteristics can lead to aggressiveness and subsequently metastasis.  It's still not an exact science but it sure spares some of us the risks of chemotherapy as well as recognizing the benefit of chemo for cases when one might not typically get chemo (node negative, ER+).  A woman I was peer navigator for had invasive lobular cancer with micrometastasis in one node. She and her docs were on the fence whether to do chemo or not.   She was told she could make the decision because they simply did not know.  She entered the Taylor RX study that randomly assigns patients to chemo or no chemo and then follows them for (ever I think).  She was in the chemo group.  Someday down the road, I guess the results of this study will be known and there will be more information.  In the meantime, we're left with the judgement of our physicians, the information they now know, and our gut feelings.  Not so long ago, you would have had really aggressive surgery, gazillions of lymph nodes removed and high power chemo, radiati, the whole kit and kaboodle.  You might have lived to be 110 but you might have anyway.  I hate that "they don't know".

    I had chemo and that was really a surprise to me because I was node nedgative and grade 2 ER+ IDC.  It was recommended because of a high oncotype test.  In hindsight I wonder if I really "needed" chemo, but my tumor (albeit small at 9 mm) had characteristics that said it could be aggressive in spite of its other good features. So id did and I don't regret it. 

    I don't think there is any way we can ever be totally comfortable with our treatments, whether we have them or not.  It is a crap shoot in so many instances.  The important thing I think is that you're comfortable with the decisions, and if you're not, get another opinion if possible.  And this is just my ramblings. . .

    Suzanne

  • Faith_In_God
    Faith_In_God Member Posts: 76
    #6
    disneyfan2008 said:

    When I started tamoxifen (it

    When I started tamoxifen (it iwll be 5 yrs in Aug) my oncolgist wanted my OB/GYN to do internal ultra sound (NOT sure of official name) to look for Thickening of uterus. THE gyno said as rule of thumb I do not do that. She insisted and we started doing them regularly followed by D & C. So if not one suggests it-just something you may want to ask about.

     

    IN hind sight I am glas she insisted.

     

    Denise

    Carmen and Denise

    I visited my OB/GYN after my surgery (before chemo and Rads) and she told me that she must measure my endometrial thickness (uterus and cervical lining thickness) after my chemo and Rads and before tamoxifen,  using internal US. She said as long as I am taking tamoxifen, she should repeat that every 6 months. My oncologist said the same thing, as any increase in the endometrial thickness when using tamoxifen is an indication of possible uterine or cervical cancer. So as Denise said, I highly advise you to ask about that.

    Faith

  • Faith_In_God
    Faith_In_God Member Posts: 76
    #7
    Double Whammy said:

    Characteristics of tumors

    There is so much more now known about specific characteristis of tumors and which of these characteristics can lead to aggressiveness and subsequently metastasis.  It's still not an exact science but it sure spares some of us the risks of chemotherapy as well as recognizing the benefit of chemo for cases when one might not typically get chemo (node negative, ER+).  A woman I was peer navigator for had invasive lobular cancer with micrometastasis in one node. She and her docs were on the fence whether to do chemo or not.   She was told she could make the decision because they simply did not know.  She entered the Taylor RX study that randomly assigns patients to chemo or no chemo and then follows them for (ever I think).  She was in the chemo group.  Someday down the road, I guess the results of this study will be known and there will be more information.  In the meantime, we're left with the judgement of our physicians, the information they now know, and our gut feelings.  Not so long ago, you would have had really aggressive surgery, gazillions of lymph nodes removed and high power chemo, radiati, the whole kit and kaboodle.  You might have lived to be 110 but you might have anyway.  I hate that "they don't know".

    I had chemo and that was really a surprise to me because I was node nedgative and grade 2 ER+ IDC.  It was recommended because of a high oncotype test.  In hindsight I wonder if I really "needed" chemo, but my tumor (albeit small at 9 mm) had characteristics that said it could be aggressive in spite of its other good features. So id did and I don't regret it. 

    I don't think there is any way we can ever be totally comfortable with our treatments, whether we have them or not.  It is a crap shoot in so many instances.  The important thing I think is that you're comfortable with the decisions, and if you're not, get another opinion if possible.  And this is just my ramblings. . .

    Suzanne

    Totally agree

    I totally agree with everything you said Suzanne.

     

    Carmen, the most important thing is to be comfortable with your decisions, and if you're not, get a second opinion if possible.

     

    Faith

  • lintx
    lintx Member Posts: 697
    #8
    Faith_In_God said:

    Carmen and Denise

    I visited my OB/GYN after my surgery (before chemo and Rads) and she told me that she must measure my endometrial thickness (uterus and cervical lining thickness) after my chemo and Rads and before tamoxifen,  using internal US. She said as long as I am taking tamoxifen, she should repeat that every 6 months. My oncologist said the same thing, as any increase in the endometrial thickness when using tamoxifen is an indication of possible uterine or cervical cancer. So as Denise said, I highly advise you to ask about that.

    Faith

    Hi Carmen

     

    Yes, you need to be comfortable in your decision.  I had a bilateral for the same reason.  Felt like I would just end up going back later, if I didn't.  No regrets here.  Hugs, Linda

  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #9
    RozHopkins said:

    I also had infiltrat****

    I also had infiltratimg lobular, the reason I had chemo was be tumor was just because the size of tumor scraped through at required size advised for chemo.  Yes it tends to go to other side.  My size was reduced on my good side to match removed breast and the material taken away was tested just as normal procedure and pre pre cancer cells were found, a lot of them with one active area.  Same cancer hence bilateral.  You are doing the right thing.  Take care and good luck on Tamoxifen.  I have just changed to Arimadex and it is suiting me better for some reason.

    Congrats on no chemo!
    Hugs,

    Congrats on no chemo!

    Hugs, Jan

  • Josie21
    Josie21 Member Posts: 382 Member
    #10
    Hi Carmen

    Hi Carmen,

    One oncologist told me to do chemo and then another told me no way.  I had the oncotype test done and that sealed the deal for me, no chemo.  I also had ILC, but decided to have a bilateral mastectomy because like you, I was worried about the other breast.  In my situation I was lucky I did have the bilateral because I was filled with LCIS in the other breast.  The only thing I know for sure is you have to be confident about your treatment decisions and never look back.  I am 4 and a half years out now and luckily I am doing great.  If I would have had a recurrence I probably would have kicked myself for not having the chemo, but who knows if it would make a difference anyway.  I have very bad genetic heart problems in my family, maybe chemo would have hurt me that way.  Who knows, but please try not to focus on the what ifs.  What a waste of time and energy.  The amount of hours I have spent worrying about decisions in the past is ridiculous.  I am thrilled for you that your oncologist feels you do not need chemo.  I hope you do well on the tamoxifen.  Tamoxifen was easy for me, it's the aromasin that's kicking my butt!

    Hugs to you,

    Ginny

  • Lynne P
    Lynne P Member Posts: 165
    #11
    disneyfan2008 said:

    When I started tamoxifen (it

    When I started tamoxifen (it iwll be 5 yrs in Aug) my oncolgist wanted my OB/GYN to do internal ultra sound (NOT sure of official name) to look for Thickening of uterus. THE gyno said as rule of thumb I do not do that. She insisted and we started doing them regularly followed by D & C. So if not one suggests it-just something you may want to ask about.

     

    IN hind sight I am glas she insisted.

     

    Denise

    Sorry for the side effects of

    Sorry for the side effects of tamoxifen.  Really good news though about the no chemo.

    Lynne

  • hope67
    hope67 Member Posts: 181
    #12
    Thanks so much for your words of wisdom

    I tried to get an appointment with my gyn and all was full before her vacation. But she will be working for a day or two and I will just go there and ask if she can see me. If not, I made a appointment in September.

    Thanks, Carmen

  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #13
    hope67 said:

    Thanks so much for your words of wisdom

    I tried to get an appointment with my gyn and all was full before her vacation. But she will be working for a day or two and I will just go there and ask if she can see me. If not, I made a appointment in September.

    Thanks, Carmen

    Carmen, I am so glad you

    Carmen, I am so glad you don't have to take chemo.  Good luck with your appointment with your gyno!

    Hugs, Diane

  • roseann4
    roseann4 Member Posts: 992 Member
    #14
    DianeBC said:

    Carmen, I am so glad you

    Carmen, I am so glad you don't have to take chemo.  Good luck with your appointment with your gyno!

    Hugs, Diane

    I had lobular BC removed 4 1/2 years ago.

    No one said anything about increased chance in the other breast.  Stage 1 and node negative.  Radiation and Arimidex but no chemo.

    Roseann

  • Angie2U
    Angie2U Member Posts: 2,991
    #15
    roseann4 said:

    I had lobular BC removed 4 1/2 years ago.

    No one said anything about increased chance in the other breast.  Stage 1 and node negative.  Radiation and Arimidex but no chemo.

    Roseann

    Wishing you good luck with

    Wishing you good luck with your surgery Carmen and congrats on no chemo!

    Hugs, Angie

  • Cheryl S
    Cheryl S Member Posts: 82
    #16
    Lynne P said:

    Sorry for the side effects of

    Sorry for the side effects of tamoxifen.  Really good news though about the no chemo.

    Lynne

    Hoping the tamoxifen side

    Hoping the tamoxifen side effects will go away totally for you.  Have they eased up some?  Good luck!

  • Cheryl S
    Cheryl S Member Posts: 82
    #17
    hope67 said:

    Thanks so much for your words of wisdom

    I tried to get an appointment with my gyn and all was full before her vacation. But she will be working for a day or two and I will just go there and ask if she can see me. If not, I made a appointment in September.

    Thanks, Carmen

    Did you get in to see your

    Did you get in to see your gynocologist Carmen? 

  • Cheryl 1
    Cheryl 1 Member Posts: 41
    #18
    RozHopkins said:

    Sorry.     Infiltrating

    Sorry.     Infiltrating lobular, ipad acting up

    I never had to take chemo and

    I never had to take chemo and I am happy you don't have to either.

     

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #19
    Hi.

    I am glad you don't need any chemo! But I would advise you to get a second opinion and be sure to bring ALL your reports.

    I am on tamoxifen and I check my uterus and ovaries every 6 months. Please be sure to be on top of that just to be on the safe side.

    I too had side effects from tamoxifen, mainly depression. I felt better after ~ 3 months. Right now I just get very moody and upset. I also get ovarian cysts which they check every 6 months as well. Most of the time, I feel OK with tamoxifen. I think you will too.

    Good luck with everything and please come visit often.

     

    XOXO

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