Don't know what to do

Msdede

I had a surgical biopsy on July 7th, I found out on the 16th it was not cancer, but that I have ADH and would need to go to an oncologist to be put on medication, possibly Tamoxifen.  My surgeon said he would send his report and referral to oncologist to my GYN and primary and they would call me. It has now been 2 weeks and still have not heard anything from anyone.  What should I do?  Am I just being impatient?

Beesie

It's natural to be impatient, but really, the amount of time that you've been waiting is not excessive.  You have to consider that patients who are newly diagnosed with breast cancer, and particularly those who have more advanced BC, will be the ones who are at the top of the pile in terms of getting appointments set up with an oncologist.  You might want to follow up with your surgeon's office to get an idea if the information has been sent on to your Gyn and the oncologist, but really, there is no reason to worry. 

As for the next steps, are you high risk for reasons other than the ADH?  Usually Tamoxifen is not prescribed for ADH alone, although it certainly should be discussed and in some cases it may be.  Without other risk factors, having ADH alone puts your future BC risk at about 20% - 25% - this is higher than average (which is 12.5%) but most doctors don't consider it to be high risk enough to warrant Tamoxifen, which comes with side effects and risks of it's own.  Here's what the ACS says about ADH and Tamoxifen:  "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

And here's what the ACS says about the ADH risk:  "...a recent study looked at breast cancer risk among women with benign breast conditions. The study found that about 5 out of 100 women without any of these conditions developed breast cancer within the next 15 years. Among women with a condition that increases risk 1 ½ to 2 times, this would mean that about 7 to 10 out of 100 might be expected to develop breast cancer in the next 15 years (and about 90 to 93 would not). Among women with atypical hyperplasia (ADH or ALH), whose risk is 4 to 5 times normal, about 20 to 25 out of 100 would be expected to develop breast cancer within 15 years. The risk for cancer then declines after 15 years." http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Non_Cancerous_Breast_Conditions_59.asp

Graceface

Same situation as you, excisional biopsy, no cancer, but ADH with other risk factors.  Referred to High Risk Breast Clinic to meet with medical oncologist.  I was referred there by my breast surgeon back in June and my appointment is not until October. I was inpatient at first but was reassured this type of dx is usually seen in 3- 4 months.  Surgeon mentioned Tamoxifen to me as well. If I am a candidate,I would decline, based on data, the benefits do not outweigh the risks for me.  I'm just being patient until my appt in Oct. Good Luck to you.

Msdede

Thank you, I will wait it out a little longer, seems all I have done for past 2 months was mammograms, talk to dr's, and surgery, I could use the break.  

Msdede

Ok, well I am back to waiting. I finally called surgeon to see if my report was sent to my dr, it was, back in July. I called dr's office and was told they would talk to the dr. and get back to me. She called the next day apologizing, she didn't realize she was suppose to call me, she misinterpreted the report saying she was suppose to give me a referral, she thought the surgeon did. Told me she would fax over my report to oncologist. So...I waited for the following day to call the oncologists office (to give her time to send it) to make an appointment, told them my dr was faxing over my report. Well, the receptionist said she received the report and the dr would take a look at it and get back to me, she said to give her a couple of days. It has been a week.