ADH, Tamoxifin, Correct Diagnosis?

SelenaRG · July 2009

Hi,

I am new to the forums and saw the posting about Focal Atypical Duct Hyperplasia. I am hoping someone can help me to make sense of all of this.

I posted on one of the other forums as well, but hoped I might get additional input by starting a new topic. I hope that is ok.

Over a year ago a suspicious site was seen in my right breast on my mammogram. I was told by local radiologist to just watch it and repeat the mammogram in six months. When it was repeated, the same site was seen and again I was told to wait. I finally went to a surgeon and had him take a look at the mammogram reports. He recommended that we do a biopsy, which was done on May 21st. He tried the stereotactic route but the site was too close to the chest wall and under my armpit area. Now mind you when the radiologist performed the needle localization he advised me that he felt my surgeon was being overly aggressive in his treatment because he did not feel there was anything there!

The results came back as "foci of atypical duct hyperplasia and columnar cell change in background of fibrocystic changes and duct ectasia with small early fibroadenoma and areas of distinct apocrine metaplasia" The report goes on to say there are "also foci of ducts showing a combination of columnar cell change and micropapillary projections in the lumina with microcalcification and pseudocribriforming."

The surgeon, after speaking with an oncologist, sent me to have an MRI which showed there was a nodule that was consistent with a lymph node on the right side. But in the left breast there was an enhanced lesion with irregular margins with type I dynamics. A sonogram was ordered but not performed by the same radiologist that did the needle localization! It showed the area also so another surgery was scheduled.

On July 10th I had the second surgery which supposedly came back clean. During the needle localization the radiologist thought he saw another spot but then brushed it off as nothing. I say supposedly because when the oncologist read the report they referred to the right breast. The report was changed;and no one has said anything other than it was an unknown mass/lesion.

The oncologist I saw recommended Tamoxofin since I am considered high risk. I was not raised by bioloigical parents so medical history is sketchy but I was told that my maternal aunt died from breast cancer at age 56 (I am 55) and all of her siblings (males) died with some sort of cancer. My biological father died at age 45 with lymphacetic leukemia.

My concerns are if there might be other ADH in other areas that have not been located; if the pathologist actually "got it right" after the mistake in the report had to be corrected; and if I had a hysterectomy at age 35 with no hormone replacement therapy, how do I know that tamoxifin is right for me? There were no HER2 tests performed as they said the samples were too small.

I would appreciate input on other folks that may be experiencing the same problems, because I am thoroughly confused.

Anonymous · July 2009

selena-----generally the recommendation for ADH is breast exams every 6 months and a yearly mammo; if there is family history of bc, then sometimes tamoxifen is recommended as well. (tamox can be used for both pre and post menopausal women). You could ask for an MRI.

Anne

SelenaRG · July 2009

Thanks Anne. I appreciate your reply.

There is a strong history of cancer/leukemia on both sides and my maternal aunt died with bc at age 56. I have thought about asking for another sonogram or MRI just to make certain they got the right spot. Also have thought about requesting that the slides be reread by another pathologist in another facility. But don't know if that is something that can be done.

Thanks again for the post.

leaf · July 2009

It would be helpful to find out if your maternal aunt got her breast cancer when she was pre- or post-menopausal. Pre-menopausal is more associated with a BRCA positive test.

To be a candidate for BRCA testing, I think guidelines usually suggest that you either have first degree relatives with breast or ovarian cancer (mother, sister, brother, father, daughter, son), or multiple 2nd degree relatives.

My genetics counselor said that leukemia was not associated with an inherited single gene mutation. (I have some leukemia in my family.)

Only about 15% of breast cancers are thought to be associated with an inherited single gene mutation (such as BRCA).

Of course there are different family patterns and some family patterns need to be analyzed by a genetics counselor (such as a family having only sons, or a small number of siblings.)

I'll try to find guidelines later. No time right now.

SelenaRG · July 2009

Leaf,

Thank you again for the information. The problem with finding out information on my aunt is that I was not raised by my biological parents. Word of mouth and death certificates are all I have.

There were six in my mother's family. Two daughters...four sons. The aunt died from bc at 56, all brothers except one had cancer. The other died during the war. Mother died early from stroke. Father from lymphacetic leukemia. I have no siblings.

I appreciate all the help you might give. I just am not certain that the path report for the right side is accurate. And since the same pathologist read the left side, I am questioning the right dx. Can you tell me if ADH is easily diagnosed or is it possible to make a mistake in diagnosis?

Thanks so much.

leaf · July 2009

These are the guidelines for BRCA testing. It does not sound like you are at high risk for BRCA, unless one of your uncles had breast cancer.

"

These recommendations apply to women who have not received a diagnosis of breast or ovarian cancer. They do not apply to women with a family history of breast or ovarian cancer that includes a relative with a known deleterious mutation in BRCA1 or BRCA2 genes; these women should be referred for genetic counseling. These recommendations do not apply to men.

Although there currently are no standardized referral criteria, women with an increased- risk family history should be considered for genetic counseling to further evaluate their potential risks.

Certain specific family history patterns are associated with an increased risk for deleterious mutations in the BRCA1 or BRCA2 gene. Both maternal and paternal family histories are important. For non-Ashkenazi Jewish women, these patterns include 2 first-degree relatives with breast cancer, one of whom was diagnosed at age 50 or younger; a combination of 3 or more first- or second-degree relatives with breast cancer, regardless of age of diagnosis; a combination of both breast and ovarian cancer among first- and second- degree relatives; a first-degree relative with bilateral breast cancer; a combination of 2 or more first- or second-degree relatives with ovarian cancer, regardless of age of diagnosis; a first- or second-degree relative with both breast and ovarian cancer, at any age; a history of breast cancer in a male relative.

For women of Ashkenazi Jewish heritage, an increased risk family history includes any first-degree relative (or 2 second-degree relatives on the same side of the family) with breast or ovarian cancer." http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijo/vol3n1/brca.xml

ADH can be difficult to diagnose. There can be disagreement/controversy on whether something should be classified as ADH or not. http://breast-cancer-research.com/content/5/5/254

This site from Stanford gives you some idea how one pathologist there handles ADH. You can see that some of the descriptors can be interpreted differently by different pathologists. http://surgpathcriteria.stanford.edu/breast/adh/printable.html

tweekerbeeker · July 2009

Selena, if I were you, I would ask to have the slides read by a second pathologist, for peace of mind. This is not an unusual request.

SelenaRG · July 2009

Thanks. What if you have to have them read at another facility? Is that something that might pose a problem?

tweekerbeeker · July 2009

Selena, I had a biopsy at one facility, then I too questioned their accuracy. I had the slides sent to be read by a pathologist at a nearby NCI center. This is not uncommon, and should upset no one. Good luck.

karen9516 · July 2009

I got a second opinion on my pathology report. My surgeon said that was common practice. If I were you I would see a genetic counselor. My doctor sent me to one at our breast center and my insurance paid for it. I did'nt have any first degree relatives in my parents family but my dad was an only child so who knows what his unborn sisters may have had. My mastectomy was all prophylactic and it was approved without genetic testing but my genetic counselor suggested I have it drawn and if my insurance wouldn't pay for it they wouldn't do it without my ok. It was paid for and was negative. I was happy to know that even though the counselor told me only 5% were caused by BRCA1 and BRCA2 at least i didn't have to worry about removing my ovaries as well. Also I am fairly certain having an aunt with breast cancer is significant. I was also told that a positive gene mutation could be responsible for other types of cancers but I am unsure if leukemia is on of them.

leaf · July 2009

I had genetic counseling. My family history includes my paternal grandmother (who had only sons) had bc with bilateral radical mastectomies (that was probably the only treatment at the time, and was probably postmenopausal), maternal aunt with postmenopausal bc, a neice with childhood leukemia, paternal uncle with prostate cancer, and multiple other cancer diagnoses. I am not of Jewish Ashkenazi heritage.

The genetics counselor opined I was at low risk for BRCA, though I had more than the usual incidence of cancer in my family. (She said I had about 2% chance of having BRCA - about the same as the 'average' Ashkenazi Jewish woman.)

I opted to not be tested, at least yet. I'd have to pay out of pocket.

To really get analyzed, your family needs to get evaluated by a board-certified genetics counselor. They are the experts on these things.

http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/HealthProfessional/page2

SelenaRG · July 2009

Thank everyone so much for their information. It helps to have this to evaluate and make decisions. Since I have no one in my family that could be tested since I am the only one. I am in process of researching genetics counselors in my area (near Charlotte NC).

I also have wondered how common it is to have the diagnosis mistaken between ADH and DCIS.

leaf · July 2009

Probably the best facility in your state would be Duke. A few years ago, some veteran posters here were happy with their high risk breast cancer program.

The closest figure I can quickly find is that in one survey, about 9% of the breast cancers (of all kinds) had avoidable delays of any kind, from any cause. http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Physicians_May_Delay_Breast_Cancer_Diagnosis.asp

SelenaRG · August 2009

Just an update on having my slides reread.

I contacted my surgeon today and asked them to refer me to another facility in order to have my slides reread by another pathologist just for my own piece of mind.

He agreed ... but also made the comment that having them reread will not change the diagnosis. I did not know what to make of this remark, but still asked to have them sent to the other facility.

Will let you know the outcome.

leaf · August 2009

Well, I found this:

There were 340 patients presenting for second opinions regarding 346 breast cancers. Sixty-eight pathologic second opinions (20%) did not result in any change in pathology or prognostic factors, whereas in the remaining 80%, some change occurred. Major changes that altered surgical therapy occurred in 7.8% of cases, and pathology review provided additional prognostic information in 40%. Changes were more common in in situ carcinoma than invasive carcinoma (P=.004), but biopsy type (core vs. excisional biopsy) was not a significant predictor of change in pathologic information.

http://www.springerlink.com/content/e346286271408x80/

SelenaRG · August 2009

Leaf,

Thank you so much for posting this. After my visit to the surgeon I felt that perhaps I was being overly cautious, but there is just something nagging at me with all of the mistakes that were made during the needle loc and mammogram and mistake in labeling the path report that urges me to get a second opinion.

Thank you again for all of your help and information.

ADH, Tamoxifin, Correct Diagnosis?

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