Atypia Hyperplasia-Now What?

OncRN, at the rad center, the rad doc said several of the women who had dcis or breast changes opted for mx and breat consruction. They saw too much bc and suffering. She said they love their new breast...that their new breast are better than what they had. She was trying to talk me into mx.

I have had 2 lumpectomies in the same breast, and if it happens again, I will have a mx with reconsruction.

However, I do appreciate what Deitre is saying. When I first heard that I had cancer, I thought wack them off. After a few days, I didn't want them off. It was all psychological. I couldn't put my finger on it. I don't like the idea of putting something foreign in my body. I like my breast...and for me, it has to do a little with my feminine side...not sure?

If it happens that I have another recurrence, I will struggle, and feel like something about me is missing. I will need help. 

Because I'm extremely high risk, I will be seen every three months for the first few years..and than six months. These dr appointments will help me not forget that I need to be proactive in staying healthy.  

HI OncRN -

Thanks so much for sharing your story and keep us posted on how you are doing.

Best Wishes,

Kim

Here's a big hug for you Deirdre. I'm sorry you are feeling this way. I only glimpsed for several weeks the impending acceptance of my doctor looking at me and telling me he had to take my breast if my core biopsy came back negative because the cancer would have been multifocal - Alas!! When it was B9- I literally wept and thought....wait - I AM high risk, but maybe I can really do this with a lumpectomy re-excision and SNBiopsy.... OhMYGOOOD!!! Thank you!! I was going to sleep at night holding my breasts... and thinking I will never have them again, i will never have this sensation again.... No one was there to counsel me... No one.

My maternal aunt died of breast cancer and my sister survives stage 4 w/bone &brain mets. I am writing a letter to my three younger sisters, and my seven nieces to begin a campaign to make them more aware of what they should begin to look for. The typical woman does not even know there is a difference between a screening mammogram and a diagnostic one. And my family members should have MRIs!!

Dearest oncRN. You are a shining light of bravery!! A crown of roses and wisteria for you!! I'll be praying for you come the 26th.  Dear Karen, you are a brave and courageous warrior too. We are all reflections of our experiences, aren't we? It's wonderful to share all our differences and stories. These beautiful women have really helped me to make decisions along the way. Best of luck to everyone.

mkd - my dad looked at me and said, you don't have to make up your mind right now. think about it. OK - some of us do.... but it looks like you have time to research, and arm yourself with knowledge. oh. did i mention my mom has bc too? I am healing very well, and starting rads soon to be followed by arimidex. Stage 2a. T2 N0 M0. LVI. Gosh ladies I don't know what a Gail Score is!!!

hi mkd1061

I was dx with atypical ductal hyperplasia, had a sterotactic and then an excisional bx.  The results came back DCIS.  I am doing a BL masectomy with reconstruction with implants, TE's first though.  I wanted to do the tram flap, but not enough fat down there, even though I think so.  After long consideration, I decided to do both breasts. I don't want to do the rad or tamoxifen.  I am also probably going to be tested for the BRCA gene and if that comes back positive, they will do a hysterectomy. I already had my uterus out in 2002 due to heavy menses, but the gyn left the ovaries.  I am so ready for surgery, just waiting  for the phone call for the date.  I want to get this over with and put this behind me.  I myself have very dense breasts.  They caught this on a screening mammo.  I am glad I do yearly mamms.  My onc dr thinks I am being a little too aggressive with a bl mast, but it is my decision and my body.  Don't let no one decide your decision, go with your gut, that is what I did.   Just stay positive and good luck with your decision.   hugs {{{{{{{{{{{{{{{{{{{{{mkd1061}}}}}}}}}}}}}}}}}}}}}}}}}}}

Let us know how it goes, OK?  Hope all is going well.

I too had extensive ADH without clear margins after a large amount of breast tissue removed. I realized I could have had another biopsy but felt that with more tissue removed, I would be so disfigured I opted for a bilateral mx.  I am now 2 weeks post op and the frozen path came back with just more high level ADH.  I took this conclusion in my decision making in regards to moving ahead with the PBM and although I must admit to a momentary "second guessing", I feel I have made the best decision for me.  This was my second time of "precancer" and the last continued to come back fast and furious with each cut.  I just did not want a repeat nor having to be checked and worried all the time.  I have/had very dense breast that did not dimish with menopause and did not realize that had left me at high risk. 

My decision was helped along with several oncologist but the one that pushed me in this direction spoke to me about a skin and nipple sparring due to the "stage" I was at.  The verdict is still out as to how this will look when all the healing is done, but I still feel it was the right decision for me.

I wish you the best in your options and hope you are at peace with whatever direction you opt for

I had ADH diagnosed 3 years ago.  The steriotactic biopsies were extremely uncomfortable for me. It seemed almost every time I had a mammogram I had to put my life on hold and get a biopsy(which I hated).  I got to the point where I would only consider a surgical biopsy.   In Feb of 2008 after my last biopsy, I considered a PBM but wasn't quite there, though I did discuss it with my breast surgeon. One factor was that at the time she couldn't save the nipples. I went for my next mammo in Sept. 2008 and the ADH had spread to a different area and had grown.  By now she had started doing the skin and nipple sparing BMX so that is what I opted for.  I felt that the ADH was getting aggressive and it was only a matter of time before I had cancer. The main reason for me was that I am a worrier and I couldn't live with the risk factors hanging over my head.  I got a Bilateral mastectomy on Nov. 18. and when the path report came back they had found DCIS in my left ADH breast and the start of ADH in my right breast which had never had a problem. I feel like I made the right decision for me.  It has not been without some tough times and challlenges but it was still the right decision for me.

I wish the best for you and the decision that you make . I will be thinking of you.

I talked this over with my breast surgeon at length.  She didn't tell me what to do, but helped me sift through the options.  There are many reasons people chose different paths.  I have young children and felt like I couldn't keep dealing with this every 6 months.  If you are comfortable with the treatment you are choosing then it's right for you.  But, if you have a worry in the back of your mind, maybe you need to talk to your doctor again.

I used to spend quite a bit of time on this site, and now stop by just once in awhile.  I had a prophylactic double mast in July 2006, and have felt nothing but 1000% satisfied with my decision and surgical outcome.  BC was rampant in my family and my mother died from it.  I had atypical hyperplasia and other risk factors. I was told my lifetime risk was 85%, and my choices were pbm, removal of ovaries or tamoxifen.  I did not want to do anything that would affect me systemically, and I was told the last two choices would only cut my risk in half.  The pbm offered the greatest risk reduction and had no systemic effects.  I had a great plastic surgeon, and I am thrilled with the cosmetic results.  But the best part is - no more worries!   I can sleep at night, plan for the future, and not worry if I should be spending my days munching on broccoli and flax seeds at every meal.  My final pathology report confirmed my decision -- I was filled with junky, precancerous cells in both breasts, including LCIS.  I believe the pbm saved my life.  I woke up smiling after my surgery and haven't quit smiling.  I don't mean to suggest that my decision is right for all but it was certainly right for me.

I was diagnosed with ADH last September. My surgeon was so non-chalant about the diagnosis and told me just to have yearly mamms. While I normally gather lots of info., his demeanor caused me to have no concerns. Ironically, I thought I felt a lump ( I have fibrocystic, dense breasts) in my other breast just last month and decided to have the mamm. a little early ( 8 months after last lumpectomy). To my surprise, the radiologist did find suspicious microcalcifications and recommended a stereotactic biopsy. It came back benign (no ADH) but

the waiting was torturous. I can relate SO much to all of you ladies like I never would have b4! While I was waiting for the results, I found this site. It was so wonderful to learn from you all but also to realize that my concerns are not unfounded. I check back frequently and whenever I see ADH topic, I check in. These comments are making me feel like I'm not doing enough. I didn't even know that ADH could have different "levels" and this was never discussed w/me. The radiologist did say it would be a good idea to get an MRI but "that could open a can of worms" and involve more biopsy, etc. Aaah! I want to be proactive but not overly pre-occupied. THANKS

to all of you fir sharing your experiences.  

Anna

Hi Ladydocsing - 

I noticed you said that you had to loose the nipple area due to issues underneath. I thought they could scrape? I was hoping that if my lumps turn out bad, I would be able to keep the skin / nipple. They already took a little of my right one. I that for sure bad to keep the skin / nipple if the lumps are underneath?

Dear mkd and all women with breast cancer and at high risks,

I too have atypia hyperplasia and had the wire guided excision 2 years ago. My advice to you is to have only MRIs and thermograms (you can look up more information on thermograms on Dr. Mercola's website). They are very safe and accurate and have no radiation. Please read about he dangers of mamograms - they are very scary and have 1000 times more radiation than chest x-rays. I also take certain things to prevent breast cancer - Over 1000 mg of vitamin D (calcalciferol), a tablespoon of organic flaxseed oil, more effective when mixed with a little cottage cheese, a complex called DIM by Nature's Way (you can get it cheap online at theVitamin Shoppe or get it in their store at the online price. I also eat a lot of almonds daily and exercise regularly. Try to minimize sugar as much as you can. Also take a good amount of omega-3 fats with high levels of EPA and DHA.