LCIS/ADH help

I had LCIS but, not ADH. my bs told me that LCIS is NOT cancer. But, no matter what it had to be removed.The new name for it is lobular neoplasia.

I know just how you feel. I was scared out of my mind. Take your time and get all the info. you can on it and then decide what's best for you. My husband was great and so supportive of my decision. I chose to have a bil. mast. with direct implants and be done with it. That was back in Jan. this year and 5 months later I feel great. But, my choice isn't for everyone. Some women want to do the tamoxifen and testing but I know that was too stressful for me.

This is a great site and it helped me so much. I wish you all the best. Send me a private message if I can help you.

Ann

Thanks for the support,

Mary sorry you had to postpone your surgery, I understand how you feel. When all of this started for me, I was told I had to have the stereotactic biopsy 1 week prior to going to Florida for vacation.  A trip that had been planned for a year. Wow, the timing couldn't have been worse.  I was reassured by the great ladies on here to go ahead with the vacation no matter the outcome, and I am glad that I did.  I know it will be difficult to try to keep your mind off of this, but do try to enjoy your time with your family.  I am from Thunder Bay, and I agree that we are truly blessed in that we don't have the same worries about having to pay out of pocket for these procedures. I so wish that our american friends going through this could also be  relieved of that additional worry.  As if this isn't enough.

Well I had my "Wire localized lumpectomy" surgery as they call it on Friday.  I am so glad it is over. Just so you know it really wasn't as bad as I had expected. They did the wire localization at 9:30 in the morning, using a mammogram, so it was similiar to the stereotactic. It probably sounds worse than it actually is, the thoughts of this wire sticking out of you.  But it was very thin and they taped it down really well, so I didn't even know it was there.  I was supposed to have surgery at 12:15, but they were running behind so I didn't go in until 1:30.  Strangely enough, the nurse who was bringing me into the OR saw I was crying, so she took my hand in hers and said "It will be ok!  I am a breast cancer survivor".  Somehow that helped, because she knew how I was feeling.  As they put the anesethic in she also continued holding my hand to reassure me.  I will never forget this nurse.  They told me the surgery would take 1/2 hour, I would wake up in recovery 1 hour later, and then would go back to Surgical Day Care for 1 hour and then could go home.  It went exactly like they said.  When I woke up, I was sobbing, probably finished off where I was before going under.  It was really strange.  The doctor came to see me before they let me go home, and he sounded confident that wouldn't be anymore there.  Although I take that with a grain of salt, because I don't know that they can really tell until the pathologist looks at it.  I will hold onto that for now.  The pain has not really been bad at all.  I found that the painkillers they gave me made me feel worse than the pain.  I took one Friday nite before I could feel any pain, and it just sent me for a loop, so I stopped taking them and feel fine.  The doctor told me to come see him in 2 weeks for results.  Ugggghhhh! I asked if he would please phone once results were in, and he said he doesn't like to do that.  So I wait until July 9 for results, although I am sure they will have them sooner.  Now I just need to get over the cervical biopsy this Thursday and wait for all the results to come.  These next two weeks are going to be hell, but thats the way it goes.

Take care and praying for us all,

Cathy

Well after almost 2 weeks, I finally received my results. I had a feeling it wasn't going to be good news. I expected the surgeon would have called me if it were. As it turned out though my GP called me yesterday at 4:30pm and asked if I would come in at 6pm last night and to bring someone with me.  I thought it was going to be the absolute worst case scenario for her to be calling and to bring someone with me.  She has never done this.  She gave me a copy of the pathology report my diagnosis is LCIS with margin involvement and more ALH multifocal.  She seemed to think they would do further surgery to get clear margins?  Possible tamoxifen? Very close follow up. My GP seemed to see this as alot more serious then the surgeon did when I met him today. He almost seemed to brush it off, basically repeat mammogram in 1 year?  I can't believe the differne attitudes between the two.  The whole thing is just leaving my head spinning.  Both of them have made referrals to a medical oncologist, which I think will be the best for me to speak to.

I am awaiting my surgery date for the procedure and I don't want the further biopsies to show anything negative either.  I don't want to be scared up either, I have a scare from the first round of biopsy.  The doctor reassured me he will go in round the ariola on both breasts. I am worried about losing sensitivity as well as the vanity issue not to mention the possibility that I could possibly be diagnosed with cancer or more precancerous cells.  I do not want to take the medication, Tamoxifin (not sure if I am spelling it correctly) because it will speed up the menapause process. 

 I was shocked when I was advised that I ADH, I expected poor news about my ultrasound because of my extreme bleeding problems but never did I think I would run into this. 

I have no idea how I am going to deal with this.  I just got married (his mother passed away from cervical cancer this year) and after being single for soo many years was really excited to have a intimate partner and now it seems my body is falling apart. 

I cried when I drove home after my GYN visit for to recview my Ultra sound & Mamagram. I cried for the possible death of my child bearing ability and was in shock over the finding of 't ADH (I also found out my father's mother passed away from breast cancer (it spread)). 

I know what you mean about not wanting to concern your family, I also have one grown daughter and am helping my aging parents move.  So, I asked my GP for antidepresant, which I have never condoned, but I don't want to cry when ever it hits.  Over the years when I get really maxed I will go into the bathroom and allow myself to cry for a few minutes allowing my feelings to be released without scaring my daughter or making my husband feel overly concerned.  Lately, I am off for the summer, I have stayed up late, to my new husbands concern, to allow my thoughts to be purely about myself and my problem solving (un baised my any others mind) to occure. 

I would like to think that I won't feel anxiety during the upcoming appointment and the waiting time.  I think I will do some more research intermediately in between my other responsibilities.  

So far I did find out there are four different medications which are given for ADH. I was told that the medication will disallow estrogen into the the breasts (thereby keeping any ADH areas which convert into cancer localized in the breast and not spreading) and that the Uterus often receives the blocked estrogen and therefore can cause more the usual bleeding and the beginning of menopause, specifically hot flashes.  This is all I know now.

My research is being split now between this and Fibroid removal options.  So I would welcome and appreciate any information you find will researching this diagnose and treatment options! 

 I will be happy to share any links I locate. Meanwhile, keep taking good care of yourself and family, educated yourself, enjoy life, and communicate.

Ladies,

For 10 years I had ADH, every 6 month mammograms and biopsies so finally in October 2007 I had PBM and on the pathology report the doctor found LCIS even though I had been taking Tamoxifen faithfully for 3 1/2 years.  All I can tell you is that it is a personal choice.  There are new articles stating that LCIS is not a marker but a precursor to cancer so excision is what is now recommended but thi is very recent information.  Do your research o your decision is the most informed it can be.  Best of luck.