ADH + mucocele-like lesion

1) It is certainly reasonable to get a 2nd opinion even if you just had plain ordinary ADH.  So I think it would be very reasonable to get a 2nd opinion in your situation.  This abstract opines there can be diagnostic challenges. http://www.ncbi.nlm.nih.gov/pubmed/17873114  (It also does not imply that mucus type changes are invariably associated with LCIS.)

It is important to make sure you have ADH and not DCIS.  They are treated differently, and they can be confused.

2) I would think it may be prudent to wait for the results of your 2nd opinion slide reread before trying to conceive.  IF you happen to have DCIS, then the usual treatments are (lumpectomy + radiation) or mastectomy.Radiation is not normally recommended in pregnancy. From what I understand, chemo is more 'doable' in pregnancy than radiation.

3)  I think it is certainly reasonable to get 2nd (or more) opinions.  If you have nothing worse than ADH,  then normally for ADH and nothing worse close monitoring is definitely an option.  (I assume you do not have a significant family history such as breast cancer in a first degree relative like mother, sister, father, brother, or ovarian cancer in a first degree relative.) If you are in Boston, John Hopkins is a renown breast center. 

  Is your surgeon a breast surgeon?   If your surgeon gives you trouble about wanting a 2nd opinion, then I would seriously consider 'firing' your surgeon.  You may be able to get a referral through your OB since you desire to get pregnant.  (I was able to get a 2nd opinion without a referral.)

  If you get a 2nd opinion, they normally want ALL your records, and it can be expensive.  When I had a 2nd opinion at a major university (2007) it cost (out of pocket) about $500 for the 2nd opinion, and $550/biopsy to get the slides reread.  In my case, insurance did pay, the slide reread was $350/biopsy.

I know this is very upsetting and confusing.  But I would recommend at LEAST that you get in the hands of someone with whom you feel comfortable.

You may also want to check with the opinions on the young women with breast cancer forum, below.

I don't have DCIS, so I'm not an expert on that. 

I DO have LCIS, ALH, and DH (ductal hyperplasia, not atypical).  Its the atypical in ADH or ALH that puts you at higher risk.I also have radial scar, etc.

If you 'only' have ADH, then your usual option is close monitoring and nothing else.

If you have DCIS, then they usually do (lumpectomy + radiation) or mastectomy.  Sometimes they follow this with tamoxifen.  Tamoxifen is contraindicated in pregnancy.  If you have invasive, then it depends on the characteristics ('personality' of your cancer), but for early stage breast cancer, they usually do (lumpectomy + radiation) or mastectomy, with or without chemo, with or without tamoxifen or other antihormonals. DCIS covers a wide range of 'personalties': from very mild to quite aggressive.  But DCIS alone is not invasive.

Tamoxifen is normally taken x 5 years. You should not be pregnant while on tamoxifen.  I'm on tamoxifen (for LCIS.)  The usual  LCIS treatment options are: close monitoring, close monitoring + tamoxifen/antihormonals, or prophylactic bilateral mastectomies.  The latter is usually reserved for women with a horrible family history of breast/ovarian cancer.

From what I've been reading, it sounds like mucous type benign lesions are at most low risk. http://www.ncbi.nlm.nih.gov/pubmed/19117040 

Its hard to put numbers on anything, and even if they did statistics can be really misleading.  For example, with my LCIS (which is considered more advanced than ADH or ALH), I have gotten numbers from various sources that my lifetime  risk of breast cancer is 10-80%.  That's a big range. My oncologist and genetics counselor gave me a lifetime risk of about 30-40% which is probably more accurate. Statistics programs can be really tricky.

Statistically, they know fairly well in a population about how many women will get breast cancer.  For example, in a city the size of Florence, Italy, they were able to closely predict how many women in that town would get breast cancer.  However,  they are VERY POOR  at predicting WHICH PARTICULAR INDIVIDUALS  in the town would get breast cancer. 

How bad?  If you predict with a coin toss, it should be 50% (which is something like the concordance value)(if the coin is fair.)  If you had a model that predicted correctly 100% of the time the  concordance value would be 100%.  The Gail model, or other models that try to improve on the Gail model including breast density, etc, are used, the concordance value is about 59%.  This is better than 50%, but not by much.

If you only have ADH, then the numbers I have seen usually suggest people who only have ADH as a group have a much lower lifetime  risk for breast cancer- maybe about half of people with LCIS. (You can put your numbers into the Gail model.) http://www.cancer.gov/bcrisktool/  But again, note that this is for the population AS A GROUP with your characteristics, not you individually.  But its probably the best we can do.

Here's some info about breast cancer and pregnancy.  I know you don't have a personal history of breast cancer, but I can't find articles that specifically address your situation.  In any event, you would want a consult to weigh in on this anyway.

From this site: http://www.breastcancer.org/tips/fert_preg_adopt/bc_pregnancy/risks.jsp

http://www.breastcancer.org/tips/fert_preg_adopt/bc_pregnancy/screening.jsp

and from other sites:

http://www.hopkinsbreastcenter.org/artemis/200108/feature6.html

http://www.hopkinsbreastcenter.org/artemis/200601/16.html

http://www.hopkinsbreastcenter.org/artemis/200401/feature12.html

If they excised the area, then that's all they need to do for LCIS, ALH, or ADH.  It is sometimes called a lumpectomy (even if there isn't a lump). In these cases they are not trying to excise all of the LCIS/ALH/ADH, but to make sure there isn't any DCIS or invasive in the area.

In the case of LCIS, they are not aiming to remove all of the LCIS because of several reasons:

a) LCIS is usually not detectable except by looking at the tissue under the microscope.  The breast surgeon normally doesn't know where LCIS is growing when they are excising.  So they wouldn't know where to excise.  LCIS is also usually multifocal (which means there are usually several  different spots of LCIS in a breast) and is often bilateral (meaning you have spots of LCIS in both breasts.) To 'get rid of all the LCIS' for sure, they'd have to do bilateral mastectomies, and even then they can't get 100% of the breast cells in a mastectomy.

b) Even if your case of LCIS is NOT bilateral or multifocal, that makes little difference clinically, because even if you have one spot of LCIS in one breast, LCIS puts both breasts at risk. In some small (but no one will commit to a number) of cases LCIS may be a nonobligate precursor for cancer.  (DCIS is thought to be a cancer precursor.) http://www.breastcancer.org/symptoms/new_research/111005.jsp

For DCIS, they want you to have clean margins (i.e. no DCIS at the edges of the tissue they remove.)  If they don't have clean margins, then they normally go back and do more surgery until they do, or they recommend mastectomy.

They don't normally do chemo for DCIS, though I think with some very aggressive DCIS they can.

Hi,Desdemona.  In your reference, I don't see the words 'very small' in reference to LCIS.They do say the majority of women with LCIS won't get breast cancer.  That means it is <50%.  I guess its a judgement call if you call anything <50% 'very small'. 

  I have been quoted incidences of 30-40%, which is<50%. These numbers are supported by the writing on this site, though another figure is 21% over the next 15 years. http://www.breastcancer.org/symptoms/types/lcis/cancer_risk.jsp 

I have seen estimates for ALH and ADH that their risk may be about half that of LCIS. Here's more info about atypia and subsequent risk for breast cancer in YOUNG women. http://www.breastcancer.org/risk/new_research/20081215.jsp

Connie---yes, DCIS is considered more serious than LCIS and yes, the potential for invasiveness in the future is greater; ( they are both technically stage 0, non-invasive bc, but many in the medical community feel that LCIS is just a marker for higher risk in the future--this is controversial) that is why DCIS  is considered more of a "true cancer" and needs to be treated as such.) In my research of MLL, it is often benign, but sometimes associated with DCIS in a small number of cases.  I didn't see anywhere that  it is associated with LCIS in the literature.  A  2nd opinion is always good, that way you'll know exactly what you are dealing with.  It says that a core or excisional biopsy is used to differentiate between the two (MLL and DCIS).  Praying you have nothing more found than the ADH.

Anne

Yes, if you feel uncomfortable with anything, it is good to have a 2nd opinion.

As far as the 'danger' of DCIS - yes, DCIS does need to be treated much more thoroughly than LCIS.  However, in the Li et al SEER study, (1988-2001) they found the LCIS patients had a very slightly higher incidence of invasive breast cancer than DCIS patients.

Among DCIS patients, incidence rates of ipsilateral and contralateral invasive breast cancer were 5.4/1000 person-years and 4.5/1000 person-years, respectively; and among LCIS patients, incidence rates were 7.3/1000 person-years and 5.2/1000 person-years, respectively. http://www.ncbi.nlm.nih.gov/pubmed/16604564

From what I understand, pathologists can follow whatever classification they choose.  Different pathologists can use different terminology, classifications can change over time,etc.

From what I understand, when you get a 2nd opinion on pathology, they normally send the slides - from what I understand they normally do not take your block of tissue and make new slices.  At my place, the pathologist even selected which (of many) slides they were sending over to the 2nd opinion pathologist.  Maybe different places do things differently, I don't know.

I would NOT be overly concerned that your PCP is not familiar with mucocele or mucocele with ADH. I have at least 4 weird diseases (with an incidence of 1:10,000 or less), so I certainly do not expect my PCP to understand. 

  When I called up this tertiary institution to get a 2nd opinion about my LCIS, the breast cancer co-ordinator who was handling my appointment kept on wanting to 'correct' my diagnosis of 'LCIS' to 'You mean DCIS.' PCPs have to see a LOT of patients to stay in business, and I gather it is rather unusual to have a PCP that is willing to learn about unusual conditions.  I think they just don't have time.

However, I think its perfectly natural to want a doctor who will understand your concerns about your disease.  

If  a prominent pathologist read your slides initially, then I think its optional whether or not you want a 2nd opinion.   My 2nd opinion came back with almost exactly what my original pathologist said, with a whole lot less detail.  But some cases are borderline.  So I'd say to go with your gut feeling.  It is your body, and your feelings.  Whatever your choice, its helpful to feel good about it.  I waited 1.5 years after my excision to have my slides reread.