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talknirish
talknirish Member Posts: 2
edited June 2014 in Caring for Someone with Breast cancer

I had diagnosed estrogen positive ductal carcinoma in situ/right side -  was given a choice at the time - lumpectomy or masectomy.  I took the masectomy because I was afraid it would return.I had chemo - no radiation j- and had to act as my own researcher and get to an Oncologist who would prescribe me Tamoxifen - which I did and took the same for 20 years!  Stopped taking it when I was diagnosed with lung cancer/right side (different type of cancer) - the common would not stop smoking!  So, had a thoracotomy with one lobe removed.  Had chemotherapy - could not have radiation and have passed so far 2 and one half years - going for 5!

Now here is my new suffering - our oldest daughter is 48, mom of four, she has been diagnosed with ALH (atypical lobular hyperplasia).  This is something very strange for me to understand. I know its "precancerous" but not necessarily true. 

I had taken the gene test for BC and it was negative so there's that....

Has anyone recent knowledge of experiencing this and could you shed some light on the subject?  It seems like a person with this diagnosis would just have to keep having mammograms and MRIs until the condition took the shape of a cancer.  Also, would Tamoxifen or the other Roloxifene be something to take to prevent it from morphing into a cancer?  Does one see an Oncologist with this diagnosis?

Hoping to hear back soon!  Thanks.

I

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  • Jelson
    Jelson Member Posts: 1,535
    edited May 2010

    http://community.breastcancer.org/forum/47/topic/748410  here is an active thread on this under High Risk. For more info, I would suggest clicking on search at the top right of the discussion forum index page and typing in atypical lobular hyperplasia. There is probably info on the main page of BCO in the diagnosis and treatment sections. Use the search function there too.

    Chemo for DCIS? and Tamoxifen for 20 years! hey, it didn't come back. and Congratulations on how well you are doing now. 

    Julie E

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

    generally, the recommendation for ALH (which is a precancerous condition) is yearly mammos and breast exams every 6 months, with the addition of tamoxifen if there are other significant risk factors such as family history of bc.  It would be a good idea for you daughter to see an oncologist. MRIs would depend on her insurance and on the oncologist as well. It took me nearly 3 years to get my oncologist on board with MRIs, and that's even with a much higher risk than your daughter (I have LCIS which is a step further along the bc spectrum AND I also have a mom that had bc) I did take tamoxifen for 5 years and tolerated it well with minimal SEs overall. Now that I'm post menopausal, I take evista for prevention.

    Anne

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  • talknirish
    talknirish Member Posts: 2
    edited May 2010

    Thank you so much for your responses - I will search out the areas you suggested. 

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  • Raj20
    Raj20 Member Posts: 1,112
    edited June 2010

    20 yrs. surviving  .. no worry.. my dear..You will live long, I should say.   I had done lumpectomy with  reconstruction  with Mini LD Flap in my right  side, in my country India. I am taking  anastrozole tab at present, I feel  okay .. but gaining weight putting me  confused  most of the time  and worrying  if  it  comes back to me again and ready to fight  with.

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