Atypical Hyperplasia & Tamoxifen

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troyryans
troyryans Member Posts: 24
edited March 2014 in Breast Cancer #1
Hi! I am new to this site, so accept my apologies if I screw up on posting my message! I am a 48 yr. old female with a history of family breast cancer (maternal grandmother, maternal great-grandmother, maternal aunt), all diagnosed in their early 50's. Following my annual mammogram three weeks ago, a cluster of microcalcifications were detected in my right breast. Following a retake of the mammogram, and a stereotactic core biopsy (10 samples taken), a diagnosis of atypical intraductal hyperplasia was made. Mammograms taken immediately following the core biopsies also revealed another faint cluster that was not picked up previously. This week I underwent two needle localizations, and excisional surgery to remove the tissue surrounding the first cluster, and the cluster and surrounding tissue on the newer area. Received word two days later that ADH is confirmed, and with my family history and past procedures(two fibroadenomas in my left breast removed in 1994, and a benign needle aspiration of a cyst in my right breast in 1997, which is almost in the exact same spot the hyperplasia reared its head), I am now being referred to an oncologist. Tamoxifen is now being recommended for the next five years as preventative therapy (estrogen receptor positive). My Gail rating is 3.8 and I am premenopausal.

Which leads me to my new concern...with everything I have read about Tamoxifen, particularly with the more severe side effects of pulmonary embolism, deep vein thrombosis and uterine cancer, I am concerned about taking medication to help prevent one form of cancer only to be confronted with another. I want to do the right thing, and am torn from what I have heard and read.

Is there anyone out there that has had a similar situation (particularly premenopausal, family history, diagnosis) that can give some insight into how you handled your particular case? I would greatly appreciate your comments.

I meet with the breast surgeon on Monday at my surgical follow-up, and will be referred to the oncologist at that point.

Thanks,
Kathy

Comments

  • wildangel
    wildangel Member Posts: 81
    #2
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    Did your doctors mention that this is DCIS? And has anyone discussed anything more surgically? You should ask about that because not all calcifications show up on mammogram. My sister in law had extensive DCIS in her other breast which the mammogram and sonogram did not detect and she had to go back and have more surgery.
    Has anyone mentioned a course of radiotherapy?
    In my own opinion, I would make certain that your breasts are cancer free before you move on to the Tamoxifen.
    I don't want to frighten you- please understand. But sometimes doctors are not aggressive enough and we unfortunately pay the consequence.
    All I am suggesting is that you make sure your breasts are CLEAR. Especially in light of your family history.
    God Bless and best of luck to you!
    Angela
  • seeknpeace
    seeknpeace Member Posts: 259
    #3
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    Hi Kathy,

    Welcome to the site. I am 52, had a pretty extensive family history of breast cancer. They found microcalcifications in my breast and I had to press for biopsy. They were not even going to and I had DCIS that was very aggressive and fairly large. I had a bilateral mastectomy Feb. 4 and reconstruction with a tram flap.

    I would press for more information. If you are est/pro positive, doesn't that mean that you had a tumor or cancer? I am not real savvy on that. Mine was negative so I have not learned a lot about it. If they are suggesting an oncologist, that sounds like there is something to this.

    I agree with Angela. I would make absolutely certain that there is not cancer there before I started the tamox.

    Good luck and keep us informed. I think that we all learn more here from each other than anywhere else.

    Jan
  • troyryans
    troyryans Member Posts: 24
    #4
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    wildangel said:

    Did your doctors mention that this is DCIS? And has anyone discussed anything more surgically? You should ask about that because not all calcifications show up on mammogram. My sister in law had extensive DCIS in her other breast which the mammogram and sonogram did not detect and she had to go back and have more surgery.
    Has anyone mentioned a course of radiotherapy?
    In my own opinion, I would make certain that your breasts are cancer free before you move on to the Tamoxifen.
    I don't want to frighten you- please understand. But sometimes doctors are not aggressive enough and we unfortunately pay the consequence.
    All I am suggesting is that you make sure your breasts are CLEAR. Especially in light of your family history.
    God Bless and best of luck to you!
    Angela

    Thanks, Angela, for the response. My doctor did not mention DCIS, just the diagnosis of ADH. Although nothing was discussed about further surgery, this is a question of my mine as I was told that there were a couple of other "random" calcifications that appeared to be of normal shape. These were never biopsied, and I just want them out of there! Although I have not yet met with the oncologist, radiation is also a question of mine.

    How was your sister-in-law's DCIS detected if not from a mammogram and sonogram? The tricky thing about ADH for me is that there are no tumors/lumps that can be felt by examination, and were only detectable by mammograms. Without the mammograms I don't believe the condition would have been picked up unless a lump developed later, and at that point it would have been a much more involved situation.

    I greatly appreciate your help and suggestions, Angela. You are not scaring me, but rather helping me to understand what I need to know. Knowledge is everything! I agree with you, I need to know that my breasts are clear before moving forward with radiation/Tamoxifen/etc.

    Kathy
  • troyryans
    troyryans Member Posts: 24
    #5
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    seeknpeace said:

    Hi Kathy,

    Welcome to the site. I am 52, had a pretty extensive family history of breast cancer. They found microcalcifications in my breast and I had to press for biopsy. They were not even going to and I had DCIS that was very aggressive and fairly large. I had a bilateral mastectomy Feb. 4 and reconstruction with a tram flap.

    I would press for more information. If you are est/pro positive, doesn't that mean that you had a tumor or cancer? I am not real savvy on that. Mine was negative so I have not learned a lot about it. If they are suggesting an oncologist, that sounds like there is something to this.

    I agree with Angela. I would make absolutely certain that there is not cancer there before I started the tamox.

    Good luck and keep us informed. I think that we all learn more here from each other than anywhere else.

    Jan

    Hi Jan...thanks for the comments and insight. However, now I'm getting a little worried here!

    The cluster biopsies that were taken were benign (10 from stereotactic core, and rest from surgical removal), but I was advised that the tissue surrounding the clusters was not, although no one mentioned cancer...just that I had atypical hyperplasia. It was really my assumption (I know, I should never assume), that because I was having tamox recommended to me, and because tamox blocks the estrogen from binding to receptors, that I was estrogen receptor positive. At this point, according to the breast surgeon, the tamox was being recommended as a preventive therapy for me because I was at a higher risk for breast cancer, not that I have cancer already. The oncologist was being referred to me because he/she would be the person overseeing the tamox and possible future needs.

    BUT, you give me a lot to think about and to question both the breast surgeon (meeting on Monday morning) and the oncologist (meeting later next week) about. At this point I don't think I have all the answers I need to move forward. Basically I need to make sure that all the calcifications are removed, why an oncologist, and am I clear or do I need additional surgery?

    I greatly appreciate your insight, and I will keep you informed of my meetings with the various doctors. It really helps to get other opinions, particularly from those who have unfortunately experienced the same situation.

    Thanks so much,

    Kathy
  • krisrey
    krisrey Member Posts: 194
    #6
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    wildangel said:

    Did your doctors mention that this is DCIS? And has anyone discussed anything more surgically? You should ask about that because not all calcifications show up on mammogram. My sister in law had extensive DCIS in her other breast which the mammogram and sonogram did not detect and she had to go back and have more surgery.
    Has anyone mentioned a course of radiotherapy?
    In my own opinion, I would make certain that your breasts are cancer free before you move on to the Tamoxifen.
    I don't want to frighten you- please understand. But sometimes doctors are not aggressive enough and we unfortunately pay the consequence.
    All I am suggesting is that you make sure your breasts are CLEAR. Especially in light of your family history.
    God Bless and best of luck to you!
    Angela

    Hi Angela,
    I just want to say that I agree with you about some doctors not being aggressive enough. It is vital that we do everthing by insisting on more testing and getting the answers we need to make these decision. I just want to mention that my needle aspiration came out benign also and if I had not pursued further...well I don't want to think what would have happened.
    Kris
  • wildangel
    wildangel Member Posts: 81
    #7
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    Kathy,
    Have you had a breast MRI? That is the BEST diagnostic screening tool for high risk women. I would ask for one if you have not had one yet. That can pick up things a mammogram never could.

    My SIL had an MRI and it detected a small lump in the other breast and when they operated that is when they foudn the extensive DCIS.

    Before I had cancer I would think that this is the harshest thing in the world to say to someone. But now that I have had it and its treatments and I have met, known and loved other sisters who have endured worse treatments than me or who have not survived, I feel in my heart I have to say this to you. Please forgive me if I am harsh or sound like I am trying to scare you. BUT- Kathy- right now you are LUCKY. You are at a point where your breasts are just begining to form the very start of what could be a DCIS or if undetected an Invasive tumor. I cannot just sit here and be PC with you. Do EVERYTHING YOU CAN TO PROTECT YOURSELF NOW. YOU DO NOT WANT TO JOIN THIS 'CLUB'. Yes - this is a club full of amazing and wonderful women- but they don't want to be here either. Think of it like the war on terror- GET IT before it GETS YOU.
    I am sorry if I offended- but if I had advanced warning like you are getting- I would have moved heaven and earth to avoid this Beast called Breast Cancer.
    Respectfully and with love,
    Angela
  • SusanAnne
    SusanAnne Member Posts: 245
    #8
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    Hi Kathy. Your situation sounds very much like my cousins except that she has a few more dx's including LCIS. She has pretty much decided to do bilateral mastectomies with DIEP flap reconstruction. They did give her the option to watch things closely and take tamoxifen, but she is not someone who can live with that threat hanging over her.

    I agree with Angela, get an MRI. I believe you now fit into the high risk group in which they recently began recommending having mammos along with MRI's. Also, if you haven't received a copy of the pathology report, please ask for it. Lots of times doctors make decisions about things on reports without even informing us about them. Always look at them yourself and if you don't understand something, ask! Good luck to you.
    Susan
  • troyryans
    troyryans Member Posts: 24
    #9
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    SusanAnne said:

    Hi Kathy. Your situation sounds very much like my cousins except that she has a few more dx's including LCIS. She has pretty much decided to do bilateral mastectomies with DIEP flap reconstruction. They did give her the option to watch things closely and take tamoxifen, but she is not someone who can live with that threat hanging over her.

    I agree with Angela, get an MRI. I believe you now fit into the high risk group in which they recently began recommending having mammos along with MRI's. Also, if you haven't received a copy of the pathology report, please ask for it. Lots of times doctors make decisions about things on reports without even informing us about them. Always look at them yourself and if you don't understand something, ask! Good luck to you.
    Susan

    Angela and Susan,

    Thanks for your wonderful, HELPFUL comments! Thanks to you, I was very prepared for my follow-up meeting this morning with the surgeon, and I truly appreciated your comments.

    I retrieved copies of all the pathology reports, which confirm that a diagnosis of atypical ductal hyperplasia is made. No in situ carcinoma or invasive carcinoma was identified. This finding is for all breast tissue taken, including the additional deep tissue. Benign fibrocystic changes were also noted. No DCIS from what was taken.

    HOWEVER, I have still requested an MRI to make doubly sure that I am clear. I have an appointment with the oncologist the beginning of November (I must travel out of town to be with my mother for her hip replacement, so had to delay the appointment a bit), and she will schedule the MRI. After the MRI, we will discuss the tamox recommendation.

    I am really not one to just sit by and watch things take its course. I am pro-active, and when it comes to medical issues, I devour all the information I can get my hands on. You have both helped me so much and have introduced valid points in how to tackle this. Thank you!

    If I am one of the more fortunate to have gotten a jump on the awareness and hopeful prevention of this terrible disease, I am deeply thankful. So many others are/were not so lucky to be given such advance warning. And, if the MRI does show something negative, I will tackle it head-on, chin up, and armed with determination.

    Thanks again, and I will keep you updated of the MRI findings and further results.

    God bless,

    Kathy
  • troyryans
    troyryans Member Posts: 24
    #10
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    troyryans said:

    Angela and Susan,

    Thanks for your wonderful, HELPFUL comments! Thanks to you, I was very prepared for my follow-up meeting this morning with the surgeon, and I truly appreciated your comments.

    I retrieved copies of all the pathology reports, which confirm that a diagnosis of atypical ductal hyperplasia is made. No in situ carcinoma or invasive carcinoma was identified. This finding is for all breast tissue taken, including the additional deep tissue. Benign fibrocystic changes were also noted. No DCIS from what was taken.

    HOWEVER, I have still requested an MRI to make doubly sure that I am clear. I have an appointment with the oncologist the beginning of November (I must travel out of town to be with my mother for her hip replacement, so had to delay the appointment a bit), and she will schedule the MRI. After the MRI, we will discuss the tamox recommendation.

    I am really not one to just sit by and watch things take its course. I am pro-active, and when it comes to medical issues, I devour all the information I can get my hands on. You have both helped me so much and have introduced valid points in how to tackle this. Thank you!

    If I am one of the more fortunate to have gotten a jump on the awareness and hopeful prevention of this terrible disease, I am deeply thankful. So many others are/were not so lucky to be given such advance warning. And, if the MRI does show something negative, I will tackle it head-on, chin up, and armed with determination.

    Thanks again, and I will keep you updated of the MRI findings and further results.

    God bless,

    Kathy

    Angela or Susan....

    I don't know if you will see this message, but I had a question about the MRI. I just heard that although an MRI can detect tumors in dense breast tissue, it cannot detect tiny specks of calcium or microcalcifications. Do you know if this is true? I was hoping to have an MRI to rule out any other abnormal calcifications (even though an MRI would help me feel better about anything else lurking around).

    Kathy

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