Does anyone ever have IDC and not have adjuvant treatment?

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  • Luna5
    Luna5 Member Posts: 738
    edited July 2010

    nmi...the problem is...most people don't have their hormones checked...ever.  For instance, my personal opinion is that before someone gets pregnant...I think they should find out what their normal hormone levels are when they are feeling great.  Then 3 months after delivery when "baby blues" should be over and hormones should have gone back to normal...have them checked again if they are feeling down or "blue" at all.  They usually just dismiss it as lack of sleep when it could be lack of hormones.  Might be able to diagnose postpartum depression sooner this way.  Might save some kids from over depressed moms.  I was a complete mess in the olden days when I tried various forms of birth control pills.  Different ones caused crying for no reason, anger for no reason, arguing about issues I didn't even care about... couldn't take them and then didn't feel completely normal afterwards for a year and a half when I suddenly said, "I feel like me again!  I'm arguing about the things I normally argue about!".  I know the powerful effect hormones have on moods.  

    So, now you are in a position of not knowing what your estradiol level was before Arimidex so you will not be able to establish if whatever your level is now is due to the Arimidex or not.  What if your estradiol was 30 and now it is 28?  That is a whole different thing than if it was 45 and now it is 15.

    I'm post meno, so mine should have been lower anyway.......I have gotten mine down from 32 to 15 using melatonin, apples, chrysin, quertcetin with bromelain, and whatever else of the 30+ supplements I take that does that.  I also use paraben free shampoo and cond and use coconut oil instead of paraben laden lotions and avoid estrogens in foods and drinks as much as possible.  I also had only .04 progesterone so not enough to tell bad cells to die so I am supplementing that to create balance with the three estrogens and testosterone.

    If any of you get a good answer from one of your docs as to what number they are hoping to see with each of the hormones from someone on an AI,  PLEASE let me know.  I would like to know if I am close using natural stuff.  My holistic/MD gyno/compounding pharmacist doc seems okay with my levels except the progesterone which we have had to increase as I am not absorbing that very well.  He's great.  I trust him enough to drive 7 hours roundtrip to see him.  But, I would also like a "free" second opinion if any of you get one and don't mind sharing with me.

    I wonder if anyone even knows what levels are ideal.  Do we want no estradiol?  How much estriol do we want?  How much testosterone?  How much progesterone?  I do know that my local gyno and the holistic one both do not supplement any estriol or testosterone unless symptoms are complained of.  Actually, my local guy still prescribes non bioidentical.  They said just because someone tests out as going into menopause doesn't mean they will have symptoms (which I didn't..not even sure when I went through it).  But just because someone's blood levels say they are not in menopause doesn't mean they won't treat symptoms that clearly show they are experiencing it.  So, maybe that is why they don't routinely check hormone levels if they prefer to treat only when symptoms present.

  • nmi
    nmi Member Posts: 180
    edited July 2010

    Thanks Otter. 

    Now on to my next confusing issue.  I did have multi-focal IDC., and DCIS. They did pathology on IDC but not on DCIS.  When I asked onc about tue dcis he said wasn/t important. (not invasive).  I understand the difference, etc. but I have seen women on this board w/dcis and her2+. and with onco type scores.  Guess it has always left a question in my mind.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    Lady M  -  I am HER2- so no issue there. But with the positive nodes, I guess there's no escaping the chemo....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    Lady...

    yes, I was checked.  It was Her2 +++.  And ER+ 80%.  PR+ 70%.

    And yet...my Dr would not LET me do any other treatments.  Nothing.  Nada. 

    We all know how that ended up.  Sucks.

    Barbe:  Yes, my liver is checked via blood every 30 days.  Always WNL.  And my last PET scan (done about 2 wks ago) showed no activity in the liver at all.  yea!  :) 

  • nmi
    nmi Member Posts: 180
    edited July 2010

    Luna5-As I was reading your post, it reminded me I did have my hormones checked when my periods stopped suddenly (I was 44). My gyn said I was in complete menopause. I'll have to see if that has my estradiol levels on the report. I remember him talking about my fsh level. Anyway, it would be great to have a # from that point and compare my progress on A. I'll let you know.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited July 2010

    nmi, IDC trumps DCIS so they treat the IDC. I had understood from other posts that DCIS isn't or can't be, treated for HER2?

  • Luah
    Luah Member Posts: 1,541
    edited July 2010
    Coolbreeze:  Just wanted to say I agree 100% with your ealier post and, thankfully, my experience with chemo has been the same.
  • jhhess
    jhhess Member Posts: 1
    edited July 2010

    I had no adjuvant treatment even though I was, and still am, premenopausal. So far so good and I'm 5 years out now. I had DCIS in my right side and treated it with a lumpectomy and rads in 2005. Exactly a year later during my annual mammo, they found IDC in my right side. At that time I decided to have a BiLM. After a rather complicated reconstruction in December of 2006, I didn't want to see the inside of another medical professional's office ever again. My oncologist really couldn't offer me any substantial reason for taking Tamoxifen so I declined. I haven't seen an oncologist since early 2007. But, lately I've been thinking it's probably time. I just was so tired of being a patient.

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