bilateral mastectomy no hormone therapy

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trame
trame Member Posts: 12
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hi

Just wondering if anyone has been told they don't need hormone therapy after a double mastectomy,  I am 42, and had multiple DCIS in right breast all approx 5 to 6cm with IDC in two places being 1.6mm and 1.8mm.  I had a prophylatic mastectomy of the left as my chances of getting it on the left hand side had increased (of course), and I chose bilateral due to the fact that nothing showed in the mammogram, ultrasound and MRI, no lumps could be felt also, the only sign was a small amount of bloody nipple discharge.  It was Grade 2, Stage 1.  It just seems so many people are on hormone therapy so I am a little confused, but also happy that I don't need hormone therapy, just wondering if anyone is in the same boat.

Thanks

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  • trame
    trame Member Posts: 12
    edited August 2009

    Anyone?????

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  • FLtricia
    FLtricia Member Posts: 140
    edited August 2009

    Trame,

    Sorry you had to join the group, but welcome.

    It's hard to reply to your question because you don't state your hormone status.  Were you ER+, PR+? HER +? Usually those in the positive category are placed on hormone therapy.  But, the ER/PR negatives aren't given hormone therapy as it accomplishes nothing. 

    Your good news is that your cancer was caught in the early stage and you were aggressive in treatment. 

    I'm sure others will reply when you provide the additional info.

    Blessings to you -

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  • LynnVA
    LynnVA Member Posts: 174
    edited August 2009

    I was told I did not need hormone therapy after my BL Mast and rads.  My understanding is that since I no longer have any breast tissue hormone therapy is not necessary. Would like to hear from others, this confused my as well.

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2009

    I took tamox after my 2nd dx of ADH in 18 months but 6 months after starting tamox, I again had an abnormal mammo resulting in another sterotactic biopsy. This time the biopsy showed DCIS. I too opted for bilat mast. My path report didn't show the hormone status, I don't think that they always run it on DCIS and my area of DCIS was so small that the inital needle biopsy removed all the DCIS. My final path report showed additional ADH in both breasts. My doctor said that because 99% of my breast tissue was removed (no surgeon can remove 100%) and I was having SE from the tamox, he was recommending that I go off the tamox. I also didn't need rads after my surgery.

    Sheila

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  • trame
    trame Member Posts: 12
    edited August 2009

    Thanks for the replies: 

    FLtricia:  I actually don't know whether I am ER+, PR+ HER+ or negative.  I suppose it happened so quickly I didn't get into too much of the details, I just wanted to get on top of it and told them to take them both and get it treated quickly.  I have an appointment in October so I suppose I will find out then?  I do remember he said I had only about a 2 to 3 percent chance of getting it back because, as you know they can't get all of the breast tissue.  I actually said to him I wanted a 0% chance of getting it back but he said he couldn't give that to me, no-one could FrownLaughing

    I just was a little confused as so many women are on hormone therapy after a bilateral mastectomy.

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  • dee1961
    dee1961 Member Posts: 1,672
    edited August 2009

    Hi Trame, I'm in the same boat as you are. I had bilat masts, no chemo, no rads or homone therapy.

    I had DCIS/IDC 1mm microinvasion ER+PR-HER2+++. My oncologist said that the risks would outweight the benefits. I know there are alot of women like us with very small tumors that go on to have chemo and tamox too. Everyone is so different, so after getting all things considered by you and your doctor you have to make the right decision for you. It is all very confusing why doctors differ so much on therapy. Write down all your questions to take with you when you see the Oncologist in October.

    Good luck to you and have a great day!

    D~

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  • lemont
    lemont Member Posts: 31
    edited August 2009

    I agree with Athena204. Even if you didn't have this question, you should get a copy of your pathology report(s) for your own records. That way you'll have them if you ever move or change doctors, or - God forbid - if you have a recurrence. My understanding is that hormone therapy is given to reduce the chance of recurrence in hormone-positive patients - whether in the remaining breast tissue or somewhere else (mets). I was stage 1, ER-positive, and had bilat mast. It was assumed from the start that I would take hormone therapy.

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  • bluedasher
    bluedasher Member Posts: 1,203
    edited August 2009

    Hormone therapy is a systemic therapy meant to treat any cancer that may have escaped your breast into some other part of the body. Therefore having a mastectomy or lumpectomy doesn't make a difference for the decision on whether it is needed. Lumpectomy, mastectomy and radiaiton are local treatments that only effect the cancer that was in the breast and sometimes in the nearby lymph nodes and chest wall.

    Since your IDC was very small, way less than half a cm, the cancer is not likely to have spread beyond the breast which is probably why your onc isn't recommending hormone therapy.

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  • koshka1
    koshka1 Member Posts: 678
    edited August 2009

    Hello....

    It would probably be best to wait for your pathology report to see what your hormone receptors are.

    But, with 2 tumors that are that tiny....1.6  mm?  and 1.8 mm?  it is unlikely that something like Tamoxifin would be recommended.  If they were 1.6 cm and 1.8 cm that would be a different story.

    My tumors were found via a mammo and calcifications,,,some dcis and 2 tiny buggers as well 1mm and 4mm.  I opted for the Tamoxifin for some kind of piece of mind.

    Let us know when you find out more info and what you decide.

    Hugs......

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