I am adopted, no history

Nice to meet you. I, too, am adopted, but am lucky in that I know my birthmother and siblings, so I do have a partial history. And it's a agood thing. My birthmother had breast cancer in her 70's and her sister died of ovarian cancer in her 60's. My birthmother did not die of breast cancer, but other serious medical issus that surfaced at them time (heart/pulmonary issues). She went through some degree of chemo, decided she couldn't tolerate it anymore, then died of other issues.

I am 57, and am in the process of deciding about a preventative mastectomy. This is SO new to me. I was just diagnosed less than a week ago. I have a baseline MRI Tuesday, and am meeting with my breast surgeon Thursday, I am planning on getting a second opinion before deciding. I'd like another few sets of eyes to look at my slides to make sure nothing was missed.

Being adopted and not having a history is scary. I always assumed the worst possible history until I met my family, and sure enough, a lot of it was true. I wish you luck with everything! My husband, too, is very supportive and loves me with breasts or without. We both just want me to be healthy. Please stick around here. It's nive to have you here! Best wishes!

Nan 

I know the unknown is awful.  But only about 10% of breast cancers are thought to be due to single, inheritable mutations.  I know your next thought probably is 'but what if I'm in that 10%'.  That's what my mind would say if I was adopted. 

My LCIS diagnosis really triggered a whole re-examination of my mortality. Again, I am not advocating any particular treatment. Look at the risks and benefits of each choice.  There is no right choice, there is only the choice that is right for YOU.

Wishing you luck and peace!

My 'peace' is a fake peace.  I have an anxiety disorder, and when my posts are quite unemotional, I'm distancing myself from my emotions.  I see a therapist twice a week and am on medication.  So, no, I'm not strong.  

There is no huge rush to make a decision, but once you do, know that you made the best decision you could with the information you had and the feelings you felt. Unlike our sisters with invasive breast cancer, you have some time to decide.

Wolfe33-

although I am not adopted, my parents were older when I was born. "Family Medical History" doesn't just depend on your ability to access birth family members, it depends on THEIR ability to access medical care and the nature of the medical care available to them at the time. I have to contend with my grandfather's "Bright's Disease" which is some catch- all now meaningless description of a kidney ailment, my grandmother's "stomach cancer" - circa 1935 - was that what it really was? My dad had some surgery on his neck in WW2, was that thyroid? like I have had? he died of lung cancer in 1964 - was that the primary? My mother kept telling doctors she was having kidney pain (her fear of "Bright's Disease!) and her lung tumor went undetected til it had metastised to her bones. Perhaps if she hadn't been so insistent it was her heriditary kidney disease, her doctors would have done an simple x-ray and detected the lung tumor. My mother's sisters died in infancy - probably not breast cancer but if they had lived, maybe they would have gotten it? My brother committed suicide at 42, maybe he would have been diagnosed with diabetes if he had lived longer. My children are adopted from poor circumstances in countries with inadequeate medical services. My daughter has made contact with her birth family - but again, the information is only as good as the medical care her birth family members have received. 

I get annoyed at doctors who "stress family history" I think they are blowing it out their a**holes. Get on with it, I say, diagnose and lay out the best treatment options for  me or my daughter or son as the case may be and we will determine the acceptable level of risk.

Hugs to you

Julie E

Hi:

I am also adopted and couldn't get any information on my birth parents UNTIL THE DAY BEFORE MY SECOND CHEMO  the social worker (I've been trying to find my birth mother for thirty years - I am 65) called and announced that my birth mother had died of mets breast cancer in 1955 just before I turned 10 years old - that's all the information I was able to get about health except for one or two other little items that have affected me all my life - gotta love the adoption system - it only works ONE way - anyway whatever decision you make I am sure will be the right one - for you but we're here to support you through thick and thin - keep in touch. 

Sandy

Nan, Having LCIS is not ,in any way, a bad finding.The incidence of women who go on to develope cancer is very small,at least that's what I've read and been told.I'm not a physician but I've chosen some very good ones to guide me.I have had this diagnosis for for 2,5 years now and my life has changed very little because of it. I still go for my yearly mammos as I've done for the past 17 years and an extra test( mri) has been thrown in 6 months after the mammo yearly.I have a very well known oncologist that I see 3 times a year.We talk.She examines my breasts ,coordinateds my tests.I developed microcalcifications and a stereotactic biopsy revealed ALH.A surgical biospy of the area revealed LCIS.I didn't have to have the biopsy but I did. So now I know and THEY know that when I come in for my mammos and MRI ,they look very carefully.Do i worry? Not really. Not any more than I did before with all my other mammos.I actually feel comfortable that I'm followed so closelyThe most important thing that you have to remember is LCIS IS NOT CANCER and it has not been shown to be a precursor for invasive cancer. It's simply another risk factor, one that we have no control over unfortunately.

Anne is right - the purpose of an excisional biopsy after they find LCIS on a core biopsy is NOT to remove the LCIS, but to help reassure there isn't anything worse going on,which happens in roughly 20% of cases. 

In this study, which had mostly LCIS with necrosis and pleomorphic LCIS (thus are at higher risk for invasive) 25% had ILC at excision. http://www.ncbi.nlm.nih.gov/pubmed/20586632  In this paper, it was more like 20%. http://www.ncbi.nlm.nih.gov/pubmed/16985141, and in this study 17%. http://www.ncbi.nlm.nih.gov/pubmed/16978969  The numbers in each group are relatively small.

In this 2006 Li paper, he opines With respect to LCIS, our data indicate that LCIS may be a precursor lesion of ILC rather than just an ambiguous risk factor for invasive breast cancer and that localized treatment for LCIS may be warranted given that these women have much higher rates of ipsilateral invasive breast cancer, but much more similar rates of contralateral breast cancer, compared with DCIS patients.http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full (emphasis mine) 

This paper opines that their findings suggest florid LCIS may be a precursor to ILC in some situations. http://www.ncbi.nlm.nih.gov/pubmed/21287281

This 2010 paper suggests Lobular neoplasia has been traditionally recognized as a marker of increased risk for subsequent breast carcinoma development; however, molecular studies suggest that it also behaves in a non-obligate precursor manner. We do not know, as yet, how to identify the subgroup of cases that is most likely to progress, but the epidemiological data would indicate that this progression occurs after a long period of time http://www.ncbi.nlm.nih.gov/pubmed/20436498 (emphasis mine)

Other papers I have read said that they think LCIS can, in a small number of cases, be a non-obligate precursor.  This means that in some small number of cases LCIS may,  but does not always, proceed to ILC after a long period of time.  However, in the relatively large Li et al study http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full, most of the women who were diagnosed with LCIS and nothing worse initially and went on to get invasive breast cancer, evenually got IDC, not ILC.  LCIS and nothing worse women got more ILC than women in the general population, but <50% of their invasive breast cancers were ILC.  (In the general population, about 15% of invasive breast cancers are ILC.)

Most people who get breast cancer do not have a family history, but the picture is much more uncertain in women with LCIS and nothing worse.

In this recent study of women during the 2002-2009 time period, they did 71 BPMs on women who did NOT have a personal history of invasive breast cancer or DCIS.  (LCIS and ALH women were included in the study.)   Only 35% of the group had BRCA testing. About 45% had a family history.   35% of the group had LCIS or ALH (and presumably did not have a family history.) The abstract doesn't say if any of the LCIS group had PLCIS. http://www.ncbi.nlm.nih.gov/pubmed/21424371

 The Port et al study (2007) says There are conflicting data regarding whether or not separate risk factors, such as the combination of ADH and family history, are additive to increase overall patient risk for breast cancer. ..With the sce- nario of additive risk, one could anticipate an in- creased initiative for MRI screening in patients with a family history combined with LCIS or AH. Other recent studies suggest that given a history of AH, the addition of a family history of breast cancer did not significantly further increase the overall risk. Annals of Surgical Oncology 14(3):1051–1057 DOI: 10.1245/s10434-006-9195-5  http://www.ncbi.nlm.nih.gov/pubmed/17206485

This 2006 abstract says However, bilateral breast cancer risk must be considered, especially when patients have a family history of breast cancer. In selected situations, bilateral prophylactic mastectomy with or without reconstruction may be considered when atypical hyperplasia or LCIS is diagnosed. Although this reduces risk for developing subsequent breast carcinoma by 90%, patients selected for prophylactic mastectomy represent a small subgroup of lobular neoplasia patients and generally have other risk factors, such as strong family history or evidence of genetic predisposition.  http://www.ncbi.nlm.nih.gov/pubmed/16687097

As in almost all things LCIS, there is controversy.  LCIS is too unusual to easily have large scale studies.