ADH Dx and Tamoxifen

I have both ADH & LCIS.  I will have to make a decision about my treatment soon--Tamox, BPMs, etc--it is not an easy decision to make.  I find the BPM radical, but I don't think I can go through constantly finding lumps and getting biopsies.  On the other hand, taking Tamox has some SEs....so, I don't know what to do.

You may also find the LCIS forum helpful.  There are many women with LCIS/ALH/ADH who have to deal with these issues.

Mommysta, Let me preface my comments with my family history as well as my history. My aunt (37 yr old) was dx with metstatic cancer of unknown orgin in 1978 and the autopsy showed ovarian cancer. My mom was dx with breast cancer in 2001 (age 60) had genetic test done and was BRCA negative. I started having abnormal mammos in my early 40's, first one that required biopsy age 44, showed ADH in the left breast. I saw the same surgeon that my mother saw, he put me on close watch mammo schedule every 6 months, suggested tamox at that point. I declined the prescription. 18 months later abnormal mammo on the right with biopsy showing ADH. Doctor insisted taking tamox and consider PBM but to think about it for 6 months. I went on tamox on my 46 birthday. I had what I would consider severe side effects (mood swings). On my next 6 month mammo, it was abnormal again on the right side. I opted for the PBM and my doctor took me off the tamox. My final path report showed more ADH in both the right and the left breast that didn't show up on the mammo.

I am not saying that this is a normal scenario. Not all ADH will develop into DCIS or invasive cancer. I personally was tired of the rollercoaster of emotions regarding all the mammo/biopsies that I went through in just over 2 yrs.

Sheila

HI Mommysta,

I had my slides re-read, and the result is LCIS/ADH/ALH.....so the doctor suggested Tamox.  I haven't filled the prescription yet.  I am afraid of the SEs, but getting BC is worse.  BPMs are a possibility for me.  I am going for another mammo in Nov.  For the past 4 years, every time I go for a mammo there is something suspicious.  If this trend continues even with the Tamox, then I will definitely look at BPMs.  

It is not an easy decision to make.  When I was first dx with LCIS/ADH I just wanted everything out.  Now.....I am not sure.  For me, it is really tough to have BPMs if I don't have to.  I have learned this summer that I am quite attached to my breasts!!

I am sorry if I am rambling....obviously I am unsure about what to do. 

Mommysta, My path report from both stero biopsy and excision biopsy in 2005 left breast just read ADH clean margins after the excision biopsy. the path report from stero biopsy and excision biopsy in 2006 right breast just read ADH clean margins after the excision. The path report from stero biopsy 2007 right breast showed DCIS, final path report after bilat mast showed Hyperplaysic Ductal cells and ADH in the left breast as well as the right breast but I don't know the exact location of the ADH from the final path report. The DCIS that was found was in the same area as the ADH 6 months earlier. I don't know if it 'turned' from ADH to DCIS or not. My family history of breast and ovarian cancer as well as 2 previous abnormal biopsies put me in the high risk category for developing breast cancer. The surgeon that was my doctor is the most informed surgeon in this area on breast cancer treatments and I trusted him when he said in 2006 it wasn't a matter of if I developed breast cancer but when. He couldn't tell me if the DCIS was directly related to the previous ADH or if I started the tamox in 2005 it would have prevented my DCIS diagnosis. But he did say based on the final path report that I had made the right decision for myself.

Sheila

I had my slides reread in 2007. My first core biopsy was LCIS and features of ALH.  My reread was LCIS and ALH.

You contact both the place that has your slides and the place that you want the slides sent.  I would highly advise that you ask about prices.  Mine ended up being covered by insurance, but the initial outlay was $550 / biopsy out of pocket, and with insurance $350/biopsy.   There were additional charges to Fedex the slides to and from the facility.  My original facility selected the 1-2 slides that were sent.  (There can be more than one core on each slide; they 'cram' as much tissue as they can into a little cube before stabilizing it with wax or plastic, then thinly slice it to get microscope slides.)

Your costs and experiences may vary.

I was Dx with ADH in Nov 2003 after a biopsy.  I went on Tamox and made it through my five years without any side effects.  I get a mammo once a year and a MRI once a year, six months apart.  I have not had any suspect mammo.  I do not have a first degree relative with BC but have had a paternal grandmother and 2 maternal aunts with it.  I have not done any gene tesst as my Dr. did not recommend.  Now that I am finished with the Tamox it feels weird as I am no longer "doing anything" to help keep BC away.  Ticking time bomb perhaps but I do not dwell on it... except every six months when I get my mammo/mri. 

mommysta,

My dx changed slightly.  The re-read showed ALH as well.  This was not on the original dx.  The first BS basically told me I will see you in 18 months.  Obviously, he is no longer my doctor.  With the new BS the regimen is: see him and get mammo every six months + tamox.   

I do have a question for all you ladies.  I had my excisional July 24.  I had healed nicely but now I have quite a bit of pain about 1" BELOW the scar.  The pain is centered around my nipple.  I actually hurts if I touch it.  Could this be the nerve endings connecting, hence the pain, or is it something I should be concerned about?

mommysta:

To answer you question, after the preventive mastectomy I did not need to take tamoxifen or do anything else and this is the standard.  This is what made the choice so appealing to me.  I will get manual exams yearly and an MRI every few years.  The MRI can be used for surveillence (bc after preventive mastectomy is rare but easy to detect) and it will also check to make sure my silicone implants are not ruptured.

My breast surgeon told me this year that with a family history and ADH, I had 7-8 times the risk of cancer (70%+) and without a family history it would have been 4-5%. 

 I had a skin sparing/nipple sparing procedure and it was a great option.  I feel like the "insides" were just changed.  I encourage you to look into nipple sparing. 

CT,

From what I have read, if you had an excisional biopsy, the chance of a mis-read is very rare.  This is especially true if you had your surgery at a reputable hospital.  However, it is your right to get a second opinion.