ADH- treatment options

If I had ADH only, I would self-treat with 50-100mg iodine (Iodoral or Lugol's) daily... there is evidence which is only just now being explored by the medical community that it can stop the progression of ADH and possibly even reverse it. There's an iodine thread on the alternative board if you're interested in a ton more info.

momma- you really don't want to do surgery unless you have to do it.  As lisa points out, surgery is only done if the benefits outweigh the risks.  In your case, it sounds like you are still better off just monitoring.

Do not allow fear alone to drive you to surgery, I agree here. There are multiple factors to consider with your ADH diagnosis before jumping to conclusions. Do you have any family history of BC or OVCA on either side? Have you considered chemo-prevention drugs and/or consulting with a high risk medical oncologist?  I recommend gathering all the facts & establishing a great relationship with docs you trust. Standard of care for this excision would be follow up exam/imaging in 6 months, such as a repeat mammo and/or sonogram. Best wishes.

I had had 5 previous biopsies and when my last one came back ALH I finally decided I was done and had PBM, plus I didn't want to go on Tamoxifen.  I do have a strong family history, although no BRCA gene. There were alot of people that thought I was nuts and over doing it, but I did not want to wait until it was cancer.  Even my dad, who saw my mom go through chemo was against it - true it may never have turned to cancer, but I am a worrier and was worn out with worry.  My doctor supported my decision and I had nipple/skin sparing surgery.  Nothing worrisome was found when the breast tissue that was removed was biopsied, except there were multiple B9 lumps, which never showed up on mammograms.  My surgeon said it looked I would have been having biopsies all the time because of the MRIs I would have to have had and anything suspicious would have had to be removed.   I have been very happy with my decision and the results - just my two cents worth.  Good luck with your decision, and you don't need to rush it - if you have any questions let me know. Hugs, Valerie

 Hi. This is the first time on here.  I posted on DCIS forum because I do not just have the ADH my breast surgeon said that it is bad because of the other bad cells I have and it seems to be moving so quickly.  I got a post back that said to come to this forum and that was it.  I was very disappointed. Yes, I know that it doesn't say that I have DCIS but it practically is. I don't know. I am just ready to cry. I wanted to come on here and get some support and now I feel more alone than ever. I have listed some info below. If anyone has anything even just a hi, I would appreciate it.

 Surgical Pathology Report

A: Breast, left duct excision:

- Duct Dilation

- Fibrocystic changes with associated microcalcifications

- Sclerosing adenosis with associated microcalcifications

- Pseudoangiomatous stromal hyperplasia (PASH)

- No in situ or invasive carcinoma identified

B:

- Microscopic intraductal papilloma with focal atypical ductal hyperplasia

- Fibrocystic changes with ductal epithelial hyperplasia

- Columnar cell change

- No in situ or invasive carcinoma identified

Size of specimen: 2.5cm med. to lat., 2.4cm ant. to post., 2.7cm sup. to inf.

Fragment of dense fibrofatty tissue with fibrous:adipose tissue ratio of 90:10%

Left breast discharge tested + again and ductal dilation showing raised on skin at 1 wk postop

Breast, right major duct excision:

-Atypical ductal hyperplasia

-Sclerosing adenosis

- Fibrocystic changes

- (PASH)

-Luminal red blood cells present in some larger ducts

- No intraductal papillomas identified

- No in situ or invasive carcinoma identified

Size of specimen: 3.4cm sup.to inf., 2.9cm med.to lat, 1.8cm ant.to post.

Right breast discharge tested + again and ductal dilation showing raised on skin at 1 wk postop

38 years old, Family History: grandmother double masectomy (deceased from cancer) and aunt masectomy when they around my age. 18 yrs of smoking, first abnormal mammo at age 35 ½ (slightly enlarged lymphnode right upper breast axillary area) no biopsy just watched it, also had bilateral discharge, at that time I was also diagnosed with mild cervical dysplasia (once again no treatment was done), and thyroid disease with thyroid nodule. All I know is that my body has lost its mind! I hope you can just give me your thoughts on all this. I am suppose to have scheduled an appt for total duct removal in both breast for Jan. And to do Tamoxifin for 5 yrs & I have put it off until I could research and think more on all this. I am worried that they won't do enough. My husband will deploy soon and I would like to be at my best when I am taking care of our 2 young daughters. Both surgeries they have had to take more than what they thought. I know my body and I really believe that this goes way beyond some precancerous cells. Maybe all the black discharge from both my breast running down the plastic piece when they did my mammo kind of freaked me but, at this point with this crazy body right now I just and waiting to find out what else is wrong. I have very low protein level right now so I have low immune system. I have 2 bacterial infections (bladder and cervix) Yes, a mess! My cat, ultrasound, mammo, all came out normal before any breast duct removals. My breast are so fibrocystic I don't know how they would tell anyway. All I feel is lump after lump and that is pretty much what it looks like on the mammo film I have seen. Do you think asking to get a double masectomy or discussing it with the dr. is ridiculous? I have a very tender spot in the left side of my left breast.  I've heard surgery can make it worse and spread more?

Hi - There was PASH found in my MRI biopsy. My breast surgeon, medical oncologist (saw 3 for opinions), and RO were unconcerned about PASH. During the biopsy, a tiny metal clip was put in to ID the spot for when I get mamos and MRIs in the future, so the doctors will know what that spot is. My understanding is that PASH is a benign situation.

I also had two lumpectomies on the other breast that showed extensive ADH. I was told this is also benign, but could turn into cancer over 30 years. Since I had stage 2A IDC in the same breast that had PASH, I had a lumpectomy and I am at "high risk." So I am following my radiologist's advice to have mamo's every six month on the breast that had cancer and mamo's once a year on the breast that had ADH ***and monthly self-exam, that is how I found my IDC tumor - mamo & ultrasound were benign - mamos don't detect 20 to 30% of cancers so self exams are critical***. I am also supposed to have annual breast MRI on both. I was told that breast MRI is highly specialized and to be careful about where these are done. I go to a world class cancer center. Mamo's and self exams are critical.

I also had a low oncotype dx score of 6 and highly hormonally responsive tumor. My main concern is keeping estrogen from driving any more breast cells crazy. I have recently completed 6 cycles of CMF chemo (since 2 lymph nodes were +) and have 10 of 33 radiation treatments to go. I start Tamoxifen in January to stop estrogen.

I'm 53 and have chosen to keep my breasts as I believe my cancer was due to a lifetime overexposure to estrogen (I did not have any children and was still premenopausal) and by keeping estrogen at bay I have a fairly low risk of recurrence. That is my choice and I feel comfortable with it, even though I realize I'm "high risk." I can't say what another person would be comfortable with and I just recommend getting a lot of opinions and doing research. I found the cancer math web site helpful in making my choices. Having chemo + radiation has very similar outcomes, as I understand, to mastectomy. Mastectomy may have given me a few more percentage points, but the chemo + radiation statistics were so similar that this was the choice I felt was right for me. Plus I just hate surgery.

Monitoring is great for those who can do it.  For those of us who know we are in for a lifetime of worry, there are options.

I had ADH and high risk and chose to do a PBM with immediate DIEP recon.  I am very happy with my choice and I would do it again faced with the same circumstances.  Although it doesn't completely eliminate your risk, it sure reduces it to a very low percentage. 

My breast surgeon and onc both supported my decision from my first mention of considering surgery.  My family was supportive also.  The best advice I can give to anyone considering PBM is to go with your gut instinct.  It's fine to listen to 'expert' opinions, but go with what you think is right, even if others disagree.

Good luck and let us know what you decide.

Jackson---generally, the recommendation for ADH is for yearly mammos and twice yearly breast exams with the addition of tamoxifen IF there are other significant risk factors, such as family history. (I do high risk surveillance and preventative meds (5 years tamox and now nearly 2 years evista), but my risk is much higher due to combination of LCIS and family history of bc)

anne

Hi Jackson52.........sounds somewhat similiar to my situation. I just had a mammo at the end of Oct and was sent for a stereotactic biopsy- ended up having two and they found three areas with the diagnosis of Atypical Ductal Hyperplasia. I met with the surgeon and am scheduled for exicsional biopsy surgery of the areas on Jan 13 ( an nervous- first surgery and I am 52). I have not met with an oncologist but have also read a lot about tamoxifen and would like to have an alternative as well should that be a recomendation.. I am sorry you are going through all of this- it has been a roller coaster ride - but the women here on this site have been a calm in this storm. What is your next step....is it meeting with the oncologist to discuss the plan? You are in my thoughts.

Jackson52... 11 years ago I had a biopsy of a fybroid and was told then that at age 36 I had ADH, and that it increased my risk slightly for cancer.  At the time, I understood it that I was lucky I had a lump to even bring this to my attention, and that my left breast tissue had ADH, not a defined area... so basically the breast tissue was just not totally normal. I then went for yearly mammos and had exams twice per year for 6 years... no offering of tamoxofen.  Then the last 5-6 years my mammos showed cysts, calcifications etc, not bad, but it was enough for ultrasounds.  Now this past September I found another lump, but this time it was invasive ductal carcinoma... stage 1b/2.  My oncologist told me that by having ADH, my risks at age 36 went from 15% to 25% and had I started taking tamoxafen then, I would have reduced my risk by 45%... I wish someone had offered it to me, and knowing what I know now, I would absolutely have taken it.  Bear in mind, no family history, age 47 now, and will now undergo chemo (CT), radiation and hormone therapy (tamoxafen) since my cancer was 98% estrogen/progesterone positve (highly estrogen/prog fed)... I am also undergoing ovarian cancer screening and may have my ovaries removed.

So... I still have DH (stated on my path report), still have my breasts and will decide in the future (after genetic counseling but before radiation) if I would consider a mastectomy.

Momma of 3,

It's really important to get that second pathology opinion. It is difficult for pathologists to distinguish between ADH and DCIS -- in fact, different labs have different thresholds for how weird the cells must look to determine one or the other. I hope they've sent the slides to an expert. I say, weigh all your options once you get that opinion back. Good luck with your decision.

Melissa

Just thought I'd chime in - very interesting as I didn't know ALH or ADH existed until I was diagnoised last January.  Because of strong family history, previous biopsies, didn't want side effects of Tamoxifen etc. my surgeon and I chose PBM.  Surgery was in May and October my exchange surgery.  The worry is gone, no Tamoxifen, no mammograms, no MRIs and no biopsies etc.  Not for everyone, but I was ready to be done with the worry and to reduce my risk of bc (I just turned 50).  Good luck to everyone - talk to others and doctors before making any decisions.

There are certainly a lot of variables with each case.  I met w/genetics counselor this week, and today w/the surgeon.  As far as genetics, she did not feel genetics played much of a part of my diagnosis since most of the cancers in my family were anything but breast cancer.  I still felt that is was quite informative and am glad I went.  I am exploring the heredity of melenoma in my family.  I feel that any info I may get will perhaps benefit me but more importantly my kids' health.  The surgeon's appt went well and quite honestly am leaning towards him doing an excisional biopsy.  While there were no cancer cells found, he did say atypical cells mean just that.   So he also believes in digger a little deeper.  I did not decide anything for sure.  I meet again w/oncologist next week.  Will continue to read all of your helpful and informative posts.  Thanks.

Ok, I can not resist posting here regarding ADH.
Having abnormal cells, which continue to multiply and mutate as hell - why would any woman want to play russian roulette with cancer? Why would any woman just sit and wait for years to see on which side of statistics she falls. For many things in our lives we use common sense. I still buckle up although I was never in a car accident (it was a bit risky, I admit, when I felt confident enough to drive home after my second set of infusions...)

 Here is from the Mayo clinic: "Atypical hyperplasia is generally treated with surgery to remove the abnormal cells and to make sure no in situ or invasive cancer also is present in the area." Assuming that all ADH has been removed, I personally would not take Tamoxifen as a strategy to further reduce the breast cancer risk.

Jenna