Focal Atypical Duct Hyperplasia

If I was in your shoes I would get a second opinion. I would also do tons of research before losing your breast or taking med's with horrible side affects. I am sure Beesie will be along with good info...and Deidre with with bc wisdom. You are your best advocate. Take care...b barry

Karen--I was diagnosed with LCIS ( as step further along the bc spectrum with twice the risk of ADH) over 5 years ago--had lumpectomy, just finished 5 years of tamoxifen, continuing with high risk surveillance of MRIs, mammos, and breast exams.  I haven't had "wicked" SEs from tamox--actually mild SEs overall, annoying, but certainly manageable. I chose to take tamox due to my very high risk from the combination of LCIS and family history (mom had ILC)--I wanted to be proactive. Often just close monitoring is recommended for ADH alone; some docs add tamox to the recommendation if there is close family history. But it is still a personal choice--an option, not mandatory. Good Luck with whatever you choose to do.

Anne

Karen,

ADH is a high risk condition, but unless you have other conditions that also increase your risk, often it's recommended that women with ADH alone go into a high risk screening program rather take Tamoxifen.  ADH by itself, without other significant risk factors, puts your lifetime breast cancer risk in the range of 16% - 25%.  This is "4 to 5 times higher than that of a woman with no breast abnormalities".   Note that while the "average" woman has a 12.5% lifetime risk to get breast cancer, this "average" woman is a blend of all women, including those who are very high risk.  When a statement is made about a certain condition increasing risk by X times, this is as compared to a woman with no significant risk factors.  This base risk level is approx. 4% - 5%.

Another way to look at the risk from ADH is that "about 20 to 25 women out of 100 would be expected to develop breast cancer within 15 years. The risk for cancer then declines after 15 years."   So this means that 75 to 80 women diagnosed with ADH will not get BC within the next 15 years, and after that, their risk level will revert to closer to average.

As for Tamoxifen, "ADH by itself may not raise a woman's risk of getting breast cancer to the level where she might consider taking tamoxifen. But women who have had ADH and who also have other risk factors may have a risk that is high enough to consider taking tamoxifen. "

The information & quotes I provided are all from the ACS:

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

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

Hope that helps!

I was first scheduled to have a lumpectomy at the 2 o'clock position but after the radiologist took a 2nd look at my films she recommended a 2nd biopsy at 11:00. Results showed atypical hyperplasia, which was described as the stage before cancer.  The group of doctors that reviewed my findings mostly recommended 2 lumpectomies in the same small breast.  Taking 2 golf ball samples would have left my breast pretty managled. Thankfully, I opted for a mastectomy as they found DCIS throughout my breast! Biopsies can miss the cancerous area. Oftentimes, the biopsy sample is only a few small slivers of tissue. In my case cancer was sitting very near the tissue that was sampled but not in the sample taken.

Hi Karen: Diagnosed a year ago with ADH, dense breasts, other risk factors, had the biopsies, (no cancer) referred to High Risk Clinic.  The onc suggested Tamoxifen. Being premenopausal, I declined.  Just had my 1 year follow up and mammogram negative.  I feel if I was on Tamoxifen, physicians would have contributed my nml mammo to it and say keep taking it, it's working.  I'm staying in the high risk screening program, without Tamoxifen. Good luck.

Karen, it sounds as though the oncologist you saw is a big proponent of Tamoxifen - to the point of not giving you completely accurate information.  As Anne pointed out, the benefit from Tamoxifen is simply not as great as your oncologist indicated.   You can find the official clinical trial results on this website: http://www.drugs.com/pro/tamoxifen.html   The results for the trial on High Risk Women is about 1/4 of the way down the page; it's the NSABP P-1 Trial.  Here's a summary of the findings.

• There were over 13,000 women in their trial, split between the Tamoxifen group and the placebo group. 
• Among all the high risk women, the reduction in the number of cases of invasive breast cancer was 44% over the period of the trial plus the follow-up period.  Over this time, 86 women in the Tamoxifen group were diagnosed with invasive breast cancer, compared to 136 women in the placebo group.  This works out to an annual breast cancer rate of 0.36% for the Tamoxifen group and 0.65% for the placebo group.  Over the course of the whole trial (incl. the follow-up period), there was no significant difference in the mortality rate (as caused by breast cancer): 4 for the Tamoxifen group, 5 for the placebo group.  Assuming the results hold for 10 years, the 10-year cancer rate for the Tamoxifen group would be 3.58% vs. 6.49% for the placebo group.  That's the 44% benefit.  It means that over 10 years, 3 fewer women out of every 100 women would be diagnosed with breast cancer.  And of the 100 women, over 93 would not have gotten cancer anyway (that's exactly to Graceface's point in her post, above). 
• It is true that the results for the approx. 1000 women in the trial who had atypical hyperplasia were significantly better - these were the best results of the trial.  Over the period of the trial & the follow-up, only 2 women in the Tamoxifen group were diagnosed with invasive cancer, vs. 18 women in the placebo group. This may be why your doctor is quoting the numbers that he is.  But frankly, if you look at the whole study, the results for those with atypical hyperplasia stick out like a sore thumb - they are inconsistent with the rest of the study.  All the other subgroups in the study had benefits from Tamoxifen in the range of 25% to 60%.  For example, if you consider your age, the benefit of Tamoxifen (i.e. reduction in cases of invasive cancer) for high risk women under the age of 49 was only 35%.  On the other hand, if you consider your Gail model risk level, which is probably <2% (over 5 years), the benefit to women with this risk level was 58%.  But if your Gail risk falls between 2% and 3%, the benefit from Tamoxifen is only 27%. Because the numbers fluctuate, it's probably most reliable to use the average, i.e. the 44% benefit. It's certainly suspect to hone in on only the atypical hyperplasia results.
• As for side effects, like Anne, I've never heard that Tamoxifen provides a benefit in terms of reduction in the risk of ovarian cancer.  Tamoxifen is noted as providing a benefit in terms of bone density; in this study amount high risk women, "Although there was a non-significant reduction in the number of hip fractures (9 on Tamoxifen, 20 on placebo) in the Tamoxifen group, the number of wrist fractures was similar in the two treatment groups (69 on Tamoxifen, 74 on placebo). No information regarding bone mineral density or other markers of osteoporosis is available."
• As for risks from Tamoxifen, "In the NSABP P-1 trial, 33 cases of endometrial cancer were observed in the Tamoxifen group vs. 14 in the placebo group. Deep vein thrombosis was observed in 30 women receiving Tamoxifen vs. 19 in women receiving placebo. Eighteen cases of pulmonary embolism were observed in the Tamoxifen group vs. 6 in the placebo group. There were 34 strokes on the Tamoxifen arm and 24 on the placebo arm. Cataract formation in women without cataracts at baseline was observed in 540 women taking Tamoxifen vs. 483 women receiving placebo. Cataract surgery (with or without cataracts at baseline) was performed in 201 women taking Tamoxifen vs. 129 women receiving placebo."

Karen, if you were eager to take Tamoxifen, as some women are, I wouldn't be providing you with any of this information.  I don't want to discourage you from taking Tamoxifen if this is something that you want to do and if you are comfortable with the decision.  But you went into your appointment with the oncologist wondering whether Tamoxifen was necessary for you and concerned about the side effects.  Given that, I think it's important to provide you with some of the real facts behind what your oncologist said, because he certainly presented you with the most positive picture possible.  Percent benefits (an 85% reduction in risk or even a 44% reduction in risk) sound wonderful but when you look at the level of risk to begin with (over 10 years 93% of the women in the high risk group wouldn't have gotten BC anyway, whether they took Tamoxifen or not) and when you consider the absolute benefit rather than percentage benefit (over 10 years, 3 fewer high risk women out of every 100 will be diagnosed with BC as a result of taking Tamoxifen; even taking Tamoxifen another 3.5 women would be diagnosed anyway), the story may not be as compelling as your oncologist made it seem.

Still, as you said, there is little risk in starting Tamoxifen and seeing how you feel about it.  If you don't have many side effects and you feel better being "protected" against breast cancer, then stay on it.  But if you do have lots of side effects and you find that you worry more about the risks from Tamoxifen than the benefits that you're getting by taking it, then stop.  That might be the best way to find out what's right for you.

I'm high risk, having had cancer, and I chose not to take tx. When, struggling with the decision, the risks taking tx seem worse than a recurrence. After I' chose not to take it, I sense discovered that I have a thyroid problem and high cholesterol. If I had taken it, I would had been at a high risk for a stroke. I think before anyone takes it they should have their thyroid checked out...and a complete health workup.

Karen,

Just read your posted and wanted to chip in my two cents.  I was in your shoes in spring of '07 at age 40 when a biopsy turned out to be ADH.  I was told that my lifetime risk of BC was 20-40% and given the option of Tamoxifen.  I had heard horror stories of the side effects so I opted out. Fast forward one year to spring of '08.  My mammo revealed another calcification in the same area that ended up being DCIS.  I had a lumpectomy, five weeks of radiation, and now take Tamoxifen.

If I had it to do all over again, I would have taken Tamoxifen when first offered to me.  I have had no problems with it. The only side effects I've had are irregular periods and maybe an occasional weak hotflash.  There's no way to say for sure that it would have prevented the DCIS from developing but anything that statistically lowers the risk is worth serious consideration.  

I don't mean to scare you in anyway.  I am doing well.  The DCIS did not slow me down much and I've run three marathons since completing treatment.   All the best in making the decision that is right for you!

Hi Karen, I am only 30 now and I have maybe a more severe situation than you. I just got the excisional biopsy result. It says multiple foci of atypical ductal hyperplasia, in a background of columnar cell change and flat epithelial atypia. I have ADH+mucocele-like lesion adjacent to a fibroadenoma diagnosed last Nov. I am very grateful that it is not cancer yet, although I know my risk is high.

I have a strong wish to have a kid if possible, and as soon as possible. I am going to see my Oncologist this week after this recent biopsy. Last time she recommended me to go on to try to conceive, and have close monitoring with annual mammogram and physical exams every 6 months. No Tamoxifen. She said she will recommend it several years later maybe.

At a young age, I know I have more chance that the disease will progress faster. And also pregnancy will probably promote it. But I really long for having a child. I am in a dilemma too. I also deeply understand your feeling that we don't want to regret in the future.

Everything has a risk. Life is an adventure.

But if I were in your situation, I will decide to take tamoxifen after having all the necessary physical exams. I learned medicine before. I think the side effects could be watched closely. You can take it and watch closely. Whenever you have some side effects, you can stop at that time. Your doctors will closely watch you.

I do hope if there is anyone in my situation before, could kindly advise me. Thanks.

I agree with leaf.  Whenever things are not cut and dry (and things are rarely cut and dry!) what's most important is to decide on a treatment plan that you are comfortable with.  I'm glad that the 2nd opinion has helped you make your decision and I'm glad that you are comfortable with that decision.  Good luck with the Tamoxifen - I hope that you find it easily manageable and that it works for you!

I had IDC in my right breast and had a mastectomy eight years ago..then

six years ago I was Dxed with ADH in my left breast...they did a lumpectomy

I was already on tamoxifen and then I switched to arimidex for a total of five

years...I finished up three years ago now and the ADH has not reoccured or

come back as anything else..