ADH and Double Mastectomy

lamti

ADH and Double Mastectomy

lamti

I am just diagnosised ADH on 2/27/08.  Radiologist recomended to go see a surgent.  I have an appoint with surgent 03/13/08.  After reading the website for the past two weeks, I strongly feel I want a double mastectomy.  I really don't want to go through the mamo and biopsy again and again.  I am only 40 years old, my son only 7 years old.  I want to be with my family than with my breasts.    Am I crazy?  What happen if my doctor don't agree with me.  I know that the standard treatment for ADH is excisional surgery and tamoxifen for five years, and close monitor.  My family has a strong histroy of liver cancer and liver disease.  I really don't want to take the drug.    Please help!                                                             

BessB

Lamti,

Having ADH does not mean you will get breast cancer.  Although some women who have ADH do eventually get breast cancer, ADH does not cause or lead to breast cancer.  Most cases of ADH never progress to anything more than a benign result.  However, ADH can be an indication that breast cancer is lurking.  I was diagnosed with ADH last February. I then had a biopsy which indicated a lumpectomy was warranted.  Although they finally got clean boarders during the lumpectomy I eventually had a bilateral mast with immediate reconstruction.  However, this is not the normal treatment for ADH.  Tamoxifen after a biopsy or lumpectomy is the norm.  The only reason I chose the most aggressive route is because I not only have a strong family history of BC, but I had previous blood clots (a contraindication for Tamoxifen).  My docs would not even consider giving me Tamoxifen.  I also went through genetic counseling and testing.  My counseling/testing indicated I would have a lifetime risk of 30-50% chance of getting breast cancer.  My genetics doctor and my ONC had no reservation about a bilateral mast.  Although I have no regrets about having the surgery, I would not have had it if I were able to take the preventative medication and the other factors were not as they were.  If your doctors agree that it is best for you, you have to personally make the decision to move forward and then you must live the rest of you life with that decision.  Take your time, do your research, and be comfortable with your decision.   It was 11 months from the time I was diagnosed until I moved forward with my surgery.  You have time to decide. You can PM me if you'd like to.  Take care, Juls

jade56068

Juls-

When I was dx with DCIS I cried HARD!!!!  Then I took a deep breath and got an open breast biop.  80% of DCIS is benign....I was in the "lucky" 20%.

I weighed my pros and cons, and did what was best for ME:<}.  I dont have any breast cancer on my moms side (although we do have alot of other cancers).

My BIGGEST question (to myself) was 1. Do I want to worry about rads or pills.

2. every time my calcifications come back and look like microcals, I will have to get another biop.

3.  Rads do make reconstruction harder to do, so does biops.

4. I was 36yrs old and VERY active and ok I admit it a little vain.  I did NOT want my breast to start to look bad.

5.  also with being SO young, my chances for the cancer to come back became greater.

ADH does not mean you will have bc.....ASK ALOT of questions, do ALOT of research, and you have time to THINK about what is BEST for you:<}!!!!!!

This is a great site with great, smart (as DR.s) women who are happy to give advice to try and ease your mind.

j

Anonymous

lamti---you need to give yourself time for this to all sink in--it's only been 3 days--with the diagnosis of ADH you do not need to rush to any decisions.  So take the time and do your research.  While it is precancerous, that does not mean it will ever become cancerous. Although the potential is there, hence the recommendation for tamoxifen and close monitoring. Even with a diagnosis of LCIS (a step further along the bc spectrum with double the risk of ADH), all my docs (bs, gyn, pcp, and onc) all agreed that bilateral mastectomies were too drastic. (and I have family history of bc too). So I had a lumpectomy, have been on tamox for almost 4 and a half years, and am very closely monitored. And I have never had to have another biopsy since. Fortunately, my SEs from tamox have been generally mild. My mom took it with no real SEs at all and is now a survivor of over 21 years without a recurrence.  Tamoxifen is not related to liver cancer or liver disease to my knowledge.   It probably would be good for you to talk with you doctor about your overall risks and benefits from a preventative medication like tamox. But definitely try to make your decisions out of knowledge, not out  or fear.

 Praying for more benign results for you.

Anne 

jade56068

Anne-

So TRUE!!!!!  Making a decision out of fear is not the way to go:<}. 

JustTurnedForty

I knew right from my 1st abnormal mammo that I wanted to have mastectomies.  Then after 3 stereotactic biopsies at once, I REALLY knew--I never wanted to go through that again!  My surgeon didn't agree with me, so I went to another one who did.  You know what is right FOR YOU.

BessB

I agree with Janine.  I think you do know what is right for "you".  I was very sure I knew what I wanted to do.  I did a lot of research before actually moved forward because I knew that once I did it, I could not go back.  Even though I have had some issues I still know I did the right thing and I have never questioned myself about it.  I knew I had a chance of "not" getting BC.  But the fear of getting it was stronger as I knew my chances were pretty high.  I take comfort in knowing that I no longer have to question if this is the day, the month, or the year that I get BC.   I hope you make the right decision for you and are a peace with your answer.  I wish you luck and will keep you in my prayers.  Juls

Beesie

lamti,

While this discussion board is a great place to get information and support, one of the problems is that by reading this board, women often get the impression that certain conditions such as ADH and calcifications are very likely to lead to a cancer diagnosis, when in fact that's not true at all. 

This is a breast cancer discussion board, so most of the women who hang out here have breast cancer.  This means that pretty much everyone here who had ADH did end up being diagnosed with breast cancer.  But we are the minority.  ADH is a condition that puts you at high risk to get breast cancer at some time in the future, but as high risk conditions go, it's actually on the lower end of the scale.   75% - 80% of women who have ADH will never get breast cancer.  Here's what the American Cancer Society says about the risk associated with having ADH:  

"About 2 in 10 women with atypical hyperplasia will develop invasive cancer within 15 years of their biopsy."

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

It's also important to know that on it's own, many experts do not believe that ADH warrants taking Tamoxifen.  Here's more from the ACS:

"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&

 So my recommendation is that you have the excisional biopsy, confirm that you have ADH and nothing more, and then talk to a doctor about your breast cancer risk level (and other health factors) and whether it warrants taking Tamoxifen.  Once you have all the facts both about your pathology and your future risk level, then make your decision.  Don't rush into a decision now, based on fear.

One last point.  I know that when some one is first diagnosed with BC or with a condition that puts you at high risk, an immediate thought is "let me get rid of these breasts so I never have to deal with this problem again".  Certainly by having a bilateral mastectomy, you will significantly reduce your breast cancer risk (although it won't eliminate it 100%).  But having a bilateral mastectomy also affects you for the rest of your life.  You not only lose your breasts, but you lose all the physical sensation from your breasts.  You lose your nipples.  If you have reconstruction, there can be complications, either immediately or years down the road.   Reconstruction is not mainentance free.  A bilateral mastectomy may seem like an easy solution, but it's not so simple.  Some of us don't have a choice, but in your case, you do.  So please don't make the decision without understanding all the implications, both pro and con. 

Cherrie

I had BC 9 yrs. ago and I did tamoifen for 5 yrs. and femara for 2.  Two weeks ago I had an excisional biopsy and was diagnosed with ADH.  Follow up would be hormone meds, breast checks every 6 mo., etc.  My BS also thought my ovaries should be removed due to OVC in the family also.  She also said I would be a good candidate for BMX.  My family really wants me to do this, but I just   dont know what to do. With my BC history it makes sense, but am I rushing into this.  Should I wait for a couple years and see how things go?????  Also, I will be retiring and my insurance is very good right now.  I have spent 2 weeks working myself up over this and still am confused as ever.

Mariemt

I'm 42 and had a reddish discharge and went thru an exploratory surgery. My pathology came back that I had DCIS - just 4 mm - my surgeon suggested I do a mastectomy and that I'd likely lose my nipple. The mastectomy was suggested in part because I don't want to do radiation or tamoxifin because I was looking at getting pregnant.

I decided to get a second opinion and a met with a different surgeon. She said she could do the nipple sparing and her surgery technique was far less deforming. I asked to also have a second opinion on pathology and that came back that I had ADH and not DCIS.

What should I do - trust the 2nd pathology or the first? I'm potentially getting a 3rd to find out for sure. I had just come to peace with my decision for the double mastectomy. Is it odd to get a double mastectomy for ADH? My genetic test came back negative. Ovarian cancer is in my family but not breast cancer. I don't know if I want to continue to worry about my breasts for the rest of my life but I don't want to cut them off it's unwarranted.

Ramo69

I was diagnosed with dcis , 0.5 mm low grade through a core nidlle biopsy. I had two other major hospitals in Chicago read the slides. One reading said severely attipical ductal hyperplasia bordering on dcis and the second was: mostly ADH and low grade DCIS . I had a lumpectomy followed by tamoxifen, no radiation. A year latter my mammogramand MRI shows no change, however I have decided to have a PBM ( Feb 11). I have small breasts I am 45, 44 when diagnosed and I have two girls 9 and 13. I know I am over treating this but I was for years under observation fore lymphoma and I have a hard time dealing with the anxiety that comes with the wait and watch approach. I wonder if anyone else with a diagnostic like mine went for PBM.

Cocox1

Hi how did you get on I know this is a while ago. But I am at the same stage that you were when you wrote this question.

Moderators

Hi Cocox1 and welcome to Breastcancer.org,

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