LCIS, ALH and ADH and hysterectomy

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JanetM
JanetM Member Posts: 336
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

Was diagnosed via stereotatic biopsy in May with LCIS and ALH, follow up lumpectomy also showed ADH.   Discussed tamoxifen with BS and decided that I needed to address exisiting gynecological issues before making that decision.  Had hysterectomy and ovaries removed 2 weeks ago and now I am dealing with increased hot flashes.  Spoke with ob/gyn yesterday since I didn't anticipate this as my ovaries weren't really working before the surgery, but I guess they were working enough to keep most of the hot flashes awy but now they are here with a vengeance.  Ob/gyn says HRT is usually the solution for that bt is hesitant to prescribe since there ae breast issues.  Anybody else deal with this?

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  • leaf
    leaf Member Posts: 8,188
    edited August 2011

    I haven't personally, though I'm on tamoxifen.  Hopefully others who have had this will be along shortly. I had hot flashes at first, but they died down so now (after more than 4 1/2 years,) I rarely have 'warm' flashes.  Everyone is different in this regard, of course.

    I think most of the trials I have seen that used both tamoxifen and HRT *simultaneously* were Euopean studies.  I did find one study that had a SMALL subgroup of hysterectomized women and used both tamoxifen and HRT during tamoxifen.  

    Among women who had used HRT during the trial and who were in the low-risk group, there was again a statistically nonsignificant difference in favor of tamoxifen (P = .31) (Fig. 2, B⇔). However, among women who had used HRT and were in the high-risk group, there was a statistically significant difference in favor of tamoxifen (P = .009) (Fig. 2, B⇔).  http://jnci.oxfordjournals.org/content/95/2/160.long  But in this study, the numbers are quite small: they are comparing 7 women on placebo who got breast cancer vs. 0 in the tamoxifen  + HRT group (after 8 years).

    This, as with most things LCIS, is probably a risk vs benefit situation: of course tamoxifen is not a required treatment for LCIS.

    I'm so sorry you're having to go through this decision. Perhaps you may want to consider some non-estrogen therapies or non-pharmacological therapies in addition/instead of  the option of trying estrogens?

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  • JanetM
    JanetM Member Posts: 336
    edited August 2011

    A this point I am not inclined to take tamoxifen but I am concerned about doing HRT and how that mihght impact what is already going on.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited August 2011

    Janet if you are ER+ I would be very hesitant to take HRT. Since you are not going to take Tamoxifen maybe if you take some of the natural supplements that will help you.  I also heard on another thread that primrose oil really helps with hot flashes and it ok for ER+ patients to take.  Maybe check into this.

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  • JanetM
    JanetM Member Posts: 336
    edited August 2011

    Sherryc - Thanks for the info, this is all so frustrating.  I was never crazy about going to the doctor, only went when I absolutely had to and now I feel like each one has a piece of me.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited August 2011

    Janet I understand how you feel I was just talking to an old high school friend that had bladder cancer surgery and I as telling him about all my follow ups with what Dr's and said the exact same thing.  I feel like they all want a piece of me.  He laughed and said he was beginning to feel that way too.

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  • JanetM
    JanetM Member Posts: 336
    edited August 2011

    Sad but so true......

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  • snowflower
    snowflower Member Posts: 68
    edited August 2011

    I've read on here from some women that their doctor gave them an "anti-depressant" for their hot flashes and it worked. I'm sorry but the names escape me now. One might be Lexapro? Maybe someone here can help me out. I think there are other drugs prescribed for hot flashes besides the anti-depressants also.  You can ask your doctor.  I hope this is helpful as a solution to your discomfort.

    Kim

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited August 2011

    I think Effexor is the one they use the most as it is compatible with Tamoxifen.  But if you are not taking Tamoxifen then there are others they use as low dosages.

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  • leaf
    leaf Member Posts: 8,188
    edited August 2011

    Here's the Mayo's take on hot flash treatments... http://www.mayoclinic.com/health/hot-flashes/DS01143/DSECTION=treatments-and-drugs

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    Janet---yes, I've had to deal with both tamoxifen and hot flashes from immediate surgical menopause. Ever since my mom had ILC 25 years ago, doctors have always told my sisters and I to never take HRT (they feel HRT contributed to her ILC) because of the bc risk. So when I needed a TAH/BSO  (due to large ruptured ovarian cysts while on tamox), my gyn said HRT was NOT an option for me due to my high risk from LCIS and my mom's history of ILC. (which I already knew). The first year after my surgery was rough with the hot flashes, night sweats and insomnia; I still have all those over 6 years later (but more manageable certainly), but probably because of my still being on preventative meds (continued with tamox after surgery, and now take evista). They did offer me Effexor for the hot flashes (OK to use with tamox), but I didn't want to deal with another set of SEs, so I never went on it. (sometimes I wish I had! summers are the worst!) I did try evening primrose oil: for a while it seemed to help, but then not really, so I stopped using it. I guess I've just learned to live with them---I always try to dress in lighter fabrics/ layers (so they can be shed as necessary!), never wear long sleeves or flannel anymore, use ac or fans whenever I can, try to avoid triggers as best as I can (alcohol, spicy foods, being too close to a fireplace or hot stove for too long, etc). I know for me, the SEs were more from the surgical menopause (rapid drop in estrogen) than from the tamox itself, as I didn't have the SEs while on tamox 1.5 years before my surgery. So when my doctors recomended continuing on the tamox afterwards, I did. because I had the SEs from the surgery regardless of whether I took the tamox or not. And my oncologist said losing the ovaries at my age (was nearly 48) so close to menopause, only conferred another few points of risk reduction. (so I needed the tamox for the major risk reduction). Have you ruled out taking tamox or are you stilll considering taking it? Since you have had your surgery, you won't have to worry about endometrial cancer or ovarian cysts; you could take a daily baby aspirin (81 mg) to prevent blood clots if OK with your doctor. The tamox is really beneficial in reducing overall risk up to 50%. PM me if you like.

    Anne  

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  • JanetM
    JanetM Member Posts: 336
    edited August 2011

    Still on the fence about tamoxifen.  At this point I think I am going to wait until November when I have a follow up mammogram on the breast where I had the lumpectomy in May.  I think my decision will depend on what they see on the mammo.  When I went for follow up appointment with my BS right before I had the hysterectomy she indicated that she had to take out alot more than she thought she would when she did the lumpectomy and that it needed to be monitored very closely.  I guess there is a part of me that feels like this mammo is going to indicate that there is more going on in there and other decisions will need to be made and if not then tamoxifen may be a consideration.

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