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Topic: How common is Atypical Ductal Hyperplasia?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Oct 2, 2007 03:42PM - edited Oct 2, 2007 03:42PM by newlydiagnosedatypical

newlydiagnosedatypical wrote:

Hi everyone. I am new to the forum and wanted to find out from someone here, if you know, how common ADH is in our population? I was newly diagnosed with ADH & will be meeting with an Oncologist tomorrow to learn more about this & possibly starting a 5 year course of Tamoxifen. I've done lots of research on this drug & there's lots of pros & cons in both sides of the camp. One thing I do know, is that I have had a blood clot before so I don't think I'll be a good candidate for this drug. That part scares me, outside of the risk of contracting Uterine Cancer and early menopause down the road.

Does anyone here know the answer to my question? I hope so!

Thank you,


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Oct 2, 2007 04:42PM Beesie wrote:


I don't know how common ADH is, but according to the American Cancer Society, if you have ADH, your risk of getting breast cancer is about 4 to 5 times higher than the risk of a woman who has no breast abnormalities or high risk factors.  The important thing to keep is mind is that while we all hear that 1 in 8 women will develop BC in their lifetime, this number - 12.5% of women - is an average of all women, including those with no risk factors and those who are high risk.  A women with no risk factors has only about a 5% chance of getting BC over the next 15 year period.  This means that someone with ADH has about a 20% - 25% chance of getting BC over the next 15 years.  This is a medium risk factor.   You can get more information here (you have to scroll down the page quite a bit to get to the section on ADH):

More often that not, women with ADH are not prescribed Tamoxifen. However some doctors do prescribe it, so it will be interesting to see what your oncologist says.  Here is what the ACS says:

"If you had ADH and are 35 or older: ADH by itself may not increase a woman's risk of getting breast cancer to the level where she might consider taking tamoxifen. However, women who have had a diagnosis of ADH and who also have other risk factors may have a risk that is high enough to consider taking tamoxifen. Talk to your doctor about all of your risk factors and how they affect your risk, so you can make an informed decision about whether or not to take tamoxifen."

In my case, I've had ADH and DCIS with a microinvasion (early Stage 1 breast cancer).  I had a single mastectomy due to the extensive nature of my DCIS; for me the question about Tamoxifen related to protection of my remaining breast.  Despite my history (including some family history), my oncologist did not recommend Tamoxifen, saying that he felt that my risk was not high enough to warrant the risk of side effects.  I really questioned that at first, but upon doing my own research, I came to the same conclusion. 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 2, 2007 04:52PM - edited Oct 2, 2007 04:52PM by lvtwoqlt

I am 46 yr old and I had 2 dx of ADH in 18 months, once in each breast. the surgeon put me on tamox to try and reduce my risk factors (strong family history of breast/ovarian cancer and dx of ADH). I took the tamox for 6 months but because of the close watch I had microcalcifications again but this time it was DCIS. I opted for bilateral mast to reduce my risks almost to 0. In the final pathology report on both breast tissue there was other spots of ADH in both breasts. I was taken off the tamox after my surgery because there is very little breast tissue left and no ductal tissue. I did have severe night sweats/hot flashes while on the tamox

The side effect of uterine cancer was explained to me as such, of the women taking tamox with their uterus, 7% of them have hysterectomies because of utering problems. Not everyone taking tamox has uterus. and the risk of blood clots is low also. but it is good to ask the onco about these specific side effects and get their individual take on the percentages.


Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/11/2005 Lumpectomy: Left Surgery 9/9/2006 Lumpectomy: Right Hormonal Therapy 10/11/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 5/31/2007 Mastectomy: Left, Right
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Oct 8, 2007 03:06PM darkfairy wrote:

I had ADH as well as ALH and opted to have a double mastectomy. I should point out that I have a history of multiple benign tumours and recurred phyllodes tumours with 7 operations before the mastectomy.

I can't think of anything that doesn't have side effects but the important thing is to weigh up your personal risk. Yes having any form of hyperplasia increases your *risk* of bc but so does smoking/being on the pill/having a BRCA gene etc. In your case with Tamoxifen, you have already had a blood clot - does your consultant know this? Tamoxifen increases the *risk* of blood clots 10x in healthy women so you would be at an elevated risk by taking it. However, you can opt to take a blood thinning drug like warfarin to reduce this risk. If you are concerned about osteoporosis, you can take vitamin D and calcium supplements to reduce the risk of this. Strokes, blood clots, osteoporosis and cateracts (another risk factor with Tamoxifen) all run in my immediate family and I had DVT from taking the birth control pill. These factors led to me deciding not to take Tamoxifen for ADH plus all the tumours I had meant I needed surgery anyway.

Once again, there is a *risk* of uterine cancer with Tamoxifen but this doesn't mean you'll get it. If you have a family history of uterine cancer or have had abnormal pap tests, that puts you at a higher risk. Tamoxifen gives you menopausal symptoms so you're likely to suffer hot flashes but this is a hormonal-induced menopause. This means once you come off the meds, your hormones should revert back to normal. The only exception is if your natural hormones have decided it's time for the change already, which can often happen! It is not Tamoxifen that causes this though.

Tamoxifen works by blocking the body's natural hormones from feeding hormone-dominant breast cells, like ADH. It's forms almost like little plugs in the hormone cells so it doesn't actually stop your ovaries from working, unlike Danazol or Zoladex which are also used to treat ADH. This means the menopausal symptoms are much fewer.

Armed with this information, I think you should go back to your oncologist and mention all your concerns. He or she should be able to talk you through your individual risk factors and what can be done to reduce them. I hope that helps to answer your questions - good luck! :)

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Oct 8, 2007 05:03PM awb wrote:

I don't know the rate of incidence of ADH, but it is probably being detected more often (along with ALH/DCIS/LCIS) because of the newer technology--digital mammograms. (but they can be detected by regular mammos as well--my LCIS was).  From all the literature, tamoxifen is reportedly contraindicated if you have a history of blood clots, something you definitely want to let you doctor know about.  Your doctor should be able to go over all your risk factors and figure out your risks vs. benefits of taking any preventative medication.  They may just decide to monitor you closely with mammos and breast exams; that is often the case with ADH.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)

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