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Atypical ductal hyperplasia
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Atypical ductal hyperplasia

This is what I am diagnosed with.  You would think that it would be simple, but in fact I'm told that a lumpectomy is in order with possible more found once inside.

It is tiring to have test after test, various recommendations, various reports from doctors i.e., "your fine, come back in six months" to "diagnosis, surgery recommended and NOW!  Who do you believe anymore.....frustration beyond belief.  

I realize that there are no doctors on this forum, but let me give you, my friends, the history.  After having been diagnosed with possible ovarian cancer last year, I underwent a complete hysterectomy only to find out benign tumors existed, throwing me into the throws of menopause and now having to take estrogen which is now, I believe, causing the atypical ductal hyperplasia.  Can't go off hormones because of thyroid and blood pressures issues.....wouldn't want a heart attack next!!!!.  Now I am faced with lumpectomy with a possibility of a mastectomy because of the damaged tissue.  The doctor's are saying I am at an extremely high risk for developing cancer cells due to the hyperplasia.  

Any help or better understanding would be helpful.
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7 Comments
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Avatar_n_tn
Hi,
The physical and mental trauma that you have gone through in the past few years/ months is surely astonomical. But it is commendable that you have sustained all this with good strength. The doctors have told you correctly that atypical ductal hyperplasia has high chances of turning into a malignant lesion - so you ought to go ahead with the surgery required - be it a lumpectomy or mastectomy. It still is the pre-cancerous stage and hopefully can be contained with the right approach at the right time. Discuss all the options you have and the post surgical care and follow up that you would need before you go ahead with the surgery. Goodluck.
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253389_tn?1215487053
Wow, your journey sounds much like mine. In a little less than three years, I've had two cancer diagnoses (dermal Leiomyosarcoma on my butt and IDC of my right breast), and more tests, treatments and surgeries than I ever even imagined possible. And then, in August of 2007 a screening mammo of my left breast was biRad 4 and the resulting stereotactic results gave me your diagnosis: Atypical Ductal Hyperplasia.

I felt exactly like you do! When my surgeon called with that pathology report, I was beside myself. Because what she wanted to do next was an exisional biopsy; basically another surgery. Although, she did tell me that with a diagnosis of ADH there's only a 11-17% chance of it being anything more. And the "anything more" would be DCIS.

I thought long and hard about it, but finally did have the excisional biopsy. And as it turned out, for me, it was nothing. Very little additional ADH was found in the entire specimen.

And I'm not sure what your doctors are meaning when they say you are at "an extremely high risk for developing cancer cells." I don't believe that is true at all.

Maybe get another opinion.
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Avatar_n_tn
I am a one year survivor of Invasive Ductal Carcinoma.  I have been through lumpectomy, chemo (6 months) and radiation (7 weeks, 5 days a week).  I developed scar tissue at the site where they did the Sentinal Node biopsy during my lumptectomy to test for cancer in the lymph nodes ( I had one positive node).  Because the area where the scar tissue was caused some concern pertaining to the ability to see any possible, future cancers, my surgeon decided to do a biopsy / surgery to remove the scar tissue.  The pathology report after the surgery showed a small amount of atypical ductal hyperplasia.   Here's my question....After surgery, chemo, radiation, several mammograms and two ultrasounds.  How can something like that show up?  I'm very concerned and wonder how you stay on top of something like that.

Debstev
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Avatar_f_tn
I just had a lumpectomy for the same thing.  The surgeon said when you have atypical hyperplasia your risk for breast cancer in your lfetime increases, and you may wish to see oncologist for tamoxifin (tamoxifen) or whatever, I declined as the side effects are something I don't need and the % was not much different.  If you have not had lumpectomy yet then you still have the waiting part which is the pits!  Maybe ther will be no cancer and you can just keep regular mammogram checks. Thats what I am doing. Good luck.
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Avatar_f_tn
One more thing....ther are doctors who answer in here, the problem is, you need to post a few times for them to answer sometmes, because all of us are answering you they sometimes seem to ignore those.  Thats what I did, and got answers eventually....keep posting same thing....
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Avatar_n_tn
Thanks for commenting......I'm already taking something called Arimidex.  This is my "five year" drug after cancer treatment.  My breast cancer was estrogen positive and I'm post menopausal, so Arimidex was determined to be the best pill for me.  I will see my surgeon this Thursday to remove my stitches and I see my oncologist on Friday for follow-up after the surgery.  Believe me...I will be bombarding them with questions, one of which will be whether or not I would benefit from getting the test to determine if I, indeed, carry the breast cancer gene.  If I do, I may do something drastic (mastectomy).  I don't like living with all this uncertainty.  I just did not expect to get this kind of news this soon after treatment.

Debstev
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Avatar_f_tn
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