When did you start tamoxifen or AI post mastectomy

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Nulyte
Nulyte Member Posts: 62
Oncologist refuses to see me until I have a CT scan. Can't have a CT because 4 weeks post op I can't lay flat or raise my left hand above my head. So RO put in the PT referral to help. In the meantime I have called and sent messages to my MO asking her to please guide me in when to start tamoxifen. With her unprofessional attitude I am looking for another MO but I'm premenopausal and highly Er/Pr+ and feel I need protection. When do most women start endocrine therapy?
Part of her attitude is she wants chemo and I don't , /she doesn't respect my decision , but I've done my research and this is my choice.

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  • Icietla
    Icietla Member Posts: 1,265
    edited December 2016

    It was about forty or so days between the time of my surgery and the time I got started on Letrozole. I had a checkup with the Surgeon, then waited for my first Oncologist appointment. My OncotypeDx report was done by the time of my first appointment, At the time of my first Oncologist appointment, my Letrozole was ordered from a mail-order pharmacy and held up by the usual mail delays that come around the ends of the calendar quarters.

    In the first few days of my Letrozole dosing, I lost some pills to throwing up, then took another pill a while after each of those times. My Oncologist gave me an additional prescription to be filled locally so throwing up and mail delays would not have to result in my not being adequately supplied for daily dosing.

    I am so sorry you are in this difficulty. I would be very frustrated too. Can you get in with your usual (Primary) Doctor or your Gynecologist to explain the problem and request a Tamoxifen prescription to get you started on your course?


  • Goodie16
    Goodie16 Member Posts: 446
    edited December 2016

    It was about 90 days from the time of my surgery until I started on Tamoxifen. I find a lot of cancer treatment is "hurry up and wait." Best of luck to you!

  • Kicks
    Kicks Member Posts: 4,131
    edited December 2016

    My DX and TX was very different than yours. But it was 2 weeks after my last of 12 weekly Taxol that I started Femara which was a week after starting rads.

    My time line had been - 4 DD A/C neoadjuvant, 2 weeks til UMX, 3 weeks til 12 weekly Taxol adjuvant, 1 week to 25 rads,and 1 week after starting rads to Femara.

  • tsoebbin
    tsoebbin Member Posts: 474
    edited December 2016

    About 4 months! But that was my choice, I wasn't sure if I was going to take it.

  • Leydi
    Leydi Member Posts: 146
    edited December 2016

    I started Tamoxifen 4-5 weeks after my BMX, concurrently with starting chemo. Not "standard of care" protocol but was my MO's recommendation.

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    I am so glad you started this thread. I started AI anastrozole just a month after mx. If they had given me chemo I believe I wouldn't have started until 5 or 6 months after mx. I really believe anastrozole does its job. With my low mitotic score of 1, nottingham scores of 5 and 6, ILC and IDC with lobular features I think getting on the hormone therapy immediately is a reason I am NED. The chemo was recommended (practically shoved down my throat), because of my oncodx score of 34. I have heard ILC and slower growing tumors that are strongly er+ respond very well to AI. I also read that er+ and pr- tumors responded about 2x as well to anastrozole than tamoxifen. Remember oncodx compares recurrence rates with tamoxifen alone or done after chemo.

    Bottom line I think skipping chemo and going directly to anastrozole did the trick for me. I could only last about 1.5 years on it then switched to exemestane. I did a total of 4 years between the 2 drugs.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2016

    Initially I tried Tamoxifen for ten days about 45 days post dx. I had side effects, but I also has PTSD like symptoms, which I blamed on the meds. I stopped T for a year, but the thought of not doing all I could to prevent recurrence was the worst side effect. In hindsight, I wish I'd stuck it out the first time because I'd almost be done with five years now, but I did what I could at the time. No do-overs. It is what it is.

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    farmerlucy, my SIL got GYN cancer from tamoxifen you know the 1% that gets the rare side effect. She is in a nasty fight for her life. The cancer has spread throughout her abdomen.

    After telling my mo that he doesn't suggest I ever do tamoxifen probably because of the tragedy that hit our family.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2016

    So sorry Meow. May I ask how it presented? I'm having a bit of bleeding and have called my gyn. I had a D&C a year ago and several biopsies so I'm hoping it is nothing. You know in some ways the past five years have been fast, but in other ways, like taking HT, it has been so slow. Big hug to you. Stay warm sister.

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    well she complained of a large mass in pelvic area. They immediately stopped tamoxifen and did a biopsy and checked lymph nodes. It was extensive and spread even in neck lymph node. I am not sure what chemo she is on now, but she been in emergency room more than once with extreme allergic reactions and neurothopathy. I hear my other SIL say they can't tell if chemo is working. Het tumor markers have not indicated anything. Doctor says he can feel the cancer throughout her abdomen tissue. It is bad. She is in a small town in mid west we want her to come to either Boston or Seattle but she trusts her doctor even though he is over his head on this one.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2016

    Oh wow. That sounds terrible. I'm originally from the Midwest and folks there always head up to Mayo in Rochester.

    I'm sorry you are dealing with this.

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    The reason we mention Seattle or Boston is she has family in those cities who would be happy for her to stay and get second opinions. It has been offered and declined we respect her decision.

  • flannelette2
    flannelette2 Member Posts: 21
    edited December 2016

    Meow13 - I noticed you mentioned your nottingham scores. I haven't checked in a a while, but had a nottingham score of 9, which I believe is the worst. I also had a humungous tumour. Can you, or anyone reading, please share what you know about the nottingham score? It has always intrigued me. My br surg. had very little to say about it, given my score etc., but when I asked him, every time I saw him, for years after, he response was "yours was not the travellin' kind". I ended up 2b.

    I have NEVER figure this out. Except that, upon diagnosis, I bought a heavy duty juicer, made and drank cabbage juice, pretty much wrecked my digestive lining for 6 weeks till I grew a new lining, all through my surgery & recovery & starting chemo. My theory is the cabbage juice was so horrible it drove the cancer off. But don't ever try it, ladies!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2016

    flannelette - here is a link to a pretty thorough explanation of Nottingham scoring for histo grade. Beyond explaining the numerical composition of grade, it also explains what the guidelines are for the pathologist to determine each of the scores in the three categories:

    http://pathology.jhu.edu/breast/grade.php

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    Thanks specialK. My pathology report was the one thing that was gone over in detail by my surgeon. Always have been diappointed with the lack details in my oncodx report. I did see the magee curve fitting equations but never thought I got to see the details to understand.

  • treelilac
    treelilac Member Posts: 245
    edited December 2016

    My 2 MOs for both diagnoses wanted me to start right away post surgery but I managed to delay 4-6 weeks.

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