How common is Atypical Ductal Hyperplasia?

Krista,

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):  http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Non_Cancerous_Breast_Conditions_59.asp

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."  http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Tamoxifen_and_Raloxifene_Questions_and_Answers_5.asp?sitearea=CRI&viewmode=print&

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. 

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!