Atypical Ductual Hyperplasia

Summer, having ADH means that you are higher risk to develop breast cancer, but it certainly doesn't mean that you will.

First, there is the surgery.  The reason this is done is because where there is ADH, there is a risk that some DCIS (pre-invasive cancer) or possibly even IDC (invasive cancer) might be found.  That's why when a needle biopsy finds ADH, usually the entire area of suspicion is removed, just to ensure that all that's there really is ADH. In about 20% of cases, something more is found. Usually it's DCIS, which is the earliest stage of breast cancer.  But in about 80% of cases, the surgery finds only ADH.

Hopefully your surgery reveals nothing more than ADH.  If that's the case, then having had ADH, your risk to develop breast cancer in the future is estimated to be about 4 to 5 times higher than that of a woman with no breast abnormalities. While the 'average' woman has about a 12.5% lifetime risk of developing breast cancer, this 'average' woman is a blend of all women, some who are low risk and some who are high risk.  A woman with no breast abnormalities has only the base level of risk that we all start off with, just because we are women.  That base level is in the range of 4% - 5%.  So this means that your risk, having had ADH, might be somewhere in the range of 16% to 25%.  Whether you are on the low side or high side depends on whether you have other risk factors, such as family history.  So while ADH does increase your risk, it may not increase it to much more than 'average'. 

Here's some good information about ADH:

From the Mayo Clinic:  Atypical hyperplasia of the breast

From Dr. Susan Love:  Atypia and Hyperplasia

From the ACS:   Hyperplasia

Hope that helps!

I had my surgery for ADH last August and if it makes you feel any better at all, the recovery was very smoothe and I was up and around the next day, even went to work for for a bit to visit. The pain wasn't terrible either despite the size of the mass they took out. Ibuprofen and ice did the trick for me. 

I can't think of specific questions to ask but I'd ask for everything in writing that you can get b/c it's so hard to remember anything when you're under that kind of stress. If you can take someone with you who you think can ask good questions for you, bring them along. I brought my girlfriend who was a PA (and was going through breast cancer at the time) and she helped me remember things I had wanted to ask or asked her own questions. 

I know this is so scary for you. But you are on top of it, you are having the area removed, and that is the most important thing. Ask your doctor everything and anything you want...they are there to help you. My hospital assigned me a social worker (a care coach is what they called them) and she was helpful in getting my questions answered. She gave me her cell phone number and once I even called her in the evening and she contacted the doctor for me ASAP the next morning to have the doctor call me and address my surgery concerns. Use any resource available to you. 

This is my first time posting but I saw your post and was instantly brought back to my experience last summer. I have my first 6 month follow up next week and I'm nervous all over again! If you have any questions, I'll be checking this site frequently. 

Good luck and I'm glad you are on top of this. 

You never mentioned your age? I was 38 last year when I was diagnosed with my ADH. 

Interesting that we're the same age. 38 is on the younger side of the spectrum for ADH, according to what my doctor told me. But on the other hand, my surgeon told me that us "young girls" heal so much quicker and our bodies repair themselves quicker which is helpful after surgery. So there's that for a positive! 

Likewise, let me know how it goes with your doctor appoinment. It will be interesting to compare notes since we are the same age, same diagnosis. Nice to meet you online.

Sending you good, positive wishes for your appointment tomorrow. 

momoschki,

how did you get involved with your intergrative oncologist? I was just put on a 6 month mammogram schedule, 6 month clinical breast exam but nothing beyond that. Is this something you took upon yourself or was this part of your treatment?

Summer - I might also suggest that you meet with a genetic counselor to help assess your true risk. They had me go back in the family tree, and that alone was a fun exercise. The side of the family I thought was clear was a mess! Very interesting!

Hi Momoschki:

I was very interigued by your post about bi-lateral breast reduction.  Makes all the sense in the world, and odd that it isn't talked about more often.  May I ask:  were your fairly well-endowed to begin with?  I myself don't have much "real estate" to start with so not sure that would be an option. But with DCIS in one breast and ADH in another and not much interest in taking Tamox, I am interested in alternatives as well (beyond diet and supplements).

Also, if your integrative MO can recommend a colleague near the San Franscisco area, please send me a PM.

thanks!

momoschki,

I am interested in finding out why your integrative oncologist does routine tumor marker levels for ADH.  That is kind of unusual. Tumor markers are done to detect metastatic processes, which with ADH not being cancer (rather only pre-cancerous cellular changes), it is not possible to have.  They don't do tumor markers with DCIS patients, and I'm not sure if it is even routinely done for early stage breast cancer (as in Stage 1).  Is he looking for certain genetic patterns? I understand the inflammation and Vitamin D surveillance.  I assume that he has you on various supplements to address those issies, if necessary.  Just curious.

Ballet,



You make good points and I confess I was not aware that these tests are used for metastatic BC. Just checked back looking at my most recent lab report and he checked levels for CEA, CA 27.29, and CA 125 ( which I know is for ovarian cancer.). I will definitely discuss the rationale for the first 2 of these at my next appt.

My CA125 was sky high when I had ovarian cancer and it wasn't metastatic. It was actually considered low malignant potential.

Melissa--They may also use Tumor Markers to see if a treatment is working or not (even if not metastatic).  There are many people on other forums who can probably answer these questions better than I (fortunately, not being in that place).

momoschki--sure I'll ask them.  I know they don't do it for DCIS, so it will just be out of curiousity. I'm sure the surgeon will have an opinion about it as well.  I see her in May.

Make sure you stay ahead of the pain and follow the doc's orders about your dressing, lifting, etc.  Sending you a hug, I know that's a long wait.