Atypical cells, do they all increase risk?

The uncertainty not pleasant, is it?

All is a 'dangerous' adjective.   There is little in life that is 'all'.  In the field of atypia, there are many things that are unknown.   There is controversy.  Different studies and authors give different results and opinions.

Some of the inherent problems include: different pathologists will classify the same cells in different categories.  Classifications can change over time (new categories can be established, and old categories renamed.)

In this study, some features seen in the slides were associated with less risk. http://www.ncbi.nlm.nih.gov/pubmed/19774459

You may find these interesting. http://www.ncbi.nlm.nih.gov/pubmed/18816618

http://www.ncbi.nlm.nih.gov/pubmed/18816618

http://www.ncbi.nlm.nih.gov/pubmed/17095049

There are a variety of opinions.  You and your doctor will choose which path is right for YOU.

O.K., this is what my breast surgeon told me -

the atypical hyperplasia ALONG with the family history gave me a 60-70% lifetime breast cancer risk.  She said hyperplasia isn't bad it is the "atypical" part - atypical hyperplasia.  The risk for those with atypical hyperplasia and no family history is lower. 

I had a preventive mastectomy with implant reconstruction.  My risk is now 2-3%, much lower than the general population risk of 11%. 

2Girls,

How are you doing? Any results from your path report? With your significant family history, I hope you are taking good care of yourself. Its definitely NOT fun being Un-informative BRCA negative, a big difference from being a true negative!!  I am in the same boat too. You are already very high risk at this point since you mentioned 2 first line relatives not having the gene. FYI, please read the article below that may help you in better understanding of your risks.

 Breast cancer risks in women with a family history of breast or ovarian cancer who have tested negative for a BRCA1 or BRCA2 mutation.

http://www.nature.com/bjc/journal/v100/n2/full/6604830a.html

You may also wish to seek support and advice from FORCE, the only organization devoted to hereditary breast/ovarian cancers. Go to www.facingourrisk.org and explore the web site & message boards.

2Girls:

 I too recommend the FORCE site (www.facingourrisk.org).

Your doctor is doing the excisional biopsy to remove the atypical cells and to see if there are any cancer cells in that area.  I was told I had about a 15% chance of there being cancer also.  I've read that can go as high as 25%.  The good news that is when they do find cancer near the atypical cells, it is usually DCIS or stage 0 (very early stage, non-invasive).

My surgery actually was not that bad.  I had a nipple-sparing/skin sparing bilateral mastectomy with immediate placement of silicone implants.  I feel like I just changed the "insides" of my breasts since I still have my skin and nipples.  The scars are very small and hidden in the crease under the breasts.  I could take a shower in a public locker room and no one would notice that I had breast reconstruction.

My doctor said that with atypical hyperplasia you breast cancer risk increases 4-5 times.  With a family history you chance of breast cancer go increase as much as 7-8 times.  I'm sure with your family history your risk is higher than 30% now.  You are definately high risk but it is your decision and choice how to manage the risk.  Some women feel more comforatable doing what I did because it lowers our risk so much and we don't have to do surveillance.  Some women prefer surveillance and some women take tamoxifen and do surveillance.  You have time to investigate and decide right now.  Check out the FORCE site for lots of information and feedback from women who are high risk. There are many women on the site (like me) that are BRCA negative but high risk. I am very happy and don't worry about breast cancer much these days.  However, each woman has to decide what is best for her.

2Girls:

You're welcome!  I'm glad my experience helped you.  I felt very much like you do now; I wanted to do it on my own terms.  Considering you have atypical hyperplasia (and a strong family history) you should not have any problems with insurance coverage.  This was my question too at first.  Also, if an insurance company covers mastectomy, they must cover reconstruction too.  I really don't think insurance coverage will be an issue whether you are BRCA positive or not.  I met a woman in the FORCE group who had her surgery covered on the basis of family history alone.  She was BRCA positive but had not revealed that and still got coverage.

You may want to look into types of reconstruction and see what you are comfortable with.  Some women even opt not to reconstruct.  I did implant reconstruction because I wanted a shorter surgery, less scars and did not have enough abdomen for a flap procedure.  You may also want to look into what doctors are available in your area and what types of procedures they do.  You will want to get a good reference on them and speak to someone who has used them.  When you go into the FORCE site, look up the local groups.  Someone in your local FORCE group should be able to guide you to some good doctors.  As you do this you will get a feel of what to expect and if surgery is the way you want to proceed.

Coming from a family with a lot of breast cancer myself, I will tell you that it takes a huge weight off your mind to know that you've gone down to 2-4% risk.  Even in the hospital after my surgery I felt a great weight was lifted off me. I feel good not having to do all the surveillance and knowing that I did everything possible to avoid the family plague.  For surveillance now I just see the breast surgeon and get a yearly MRI.