I will be sharing what I can about the diagnosis on this page. Since Diane does not have cancer and we do not think she has the abnormal genes, we are asked why we chose the treatment path that we did. The details shared here will help explain the decision that we made.
Click on the link below to read about:
The Pathology Reports.
The following reports are technical and may be difficult to understand unless you have experience reading reports such as these. I have provided basic explanations of the terms as I understand them. I am not a medical professional, so read the comments with that in mind.
If the technical aspect of the reports and included info gets to be too confusing, make sure you scroll to the end and read A Final Word On The Diagnosis. That is where I sum up the reason for the decision to have the mastectomy/recon surgeries.
Pathology Report #1.
The following was present in the mass that was removed during the first lumpectomy.
- Large / Partially disrupted Intraductal Papilloma with focal areas of Atypia.
- Intraductal papillomas are benign tumors that grow within the breast ducts. They are wart-like growths of gland tissue along with fibrous tissue and blood vessels. Solitary intraductal papillomas are single tumors that often grow in the large milk ducts near the nipple. They are a common cause of clear or bloody nipple discharge, especially when it comes from only one breast. They may be felt as a small lump behind or next to the nipple. They raise breast cancer risk if they contain other changes, such as atypical hyperplasia, see below.
- Atypia finding indicates that cells were found that are not typical and are abnormal. This is a condition that increases a woman’s risk of developing breast cancer.
- Scattered Foci of Lobular Carcinoma In SITU.
- Scattered, focused areas with LCIS cells. (Foci is the plural of Focus).
- Proliferative Fibrocystic Changes
- This refers to cells that are growing and changing into non-cancerous forms, but instead of growing at normal rates the cells are growing and reproducing too fast. The risk of developing breast cancer over the next 15 years increases from about 5 cases in 100 women with normal cells, to about 9 cases of breast cancer in 100 women with proliferative fibrocystic changes.
- Women with non-cancerous breast cells that were very abnormal and cells that were growing and reproducing too fast. This is called proliferative fibrocyctic change with atypia. Their risk of developing breast cancer in the next 15 years increased from about 5 in 100 to about 19 in 100.
The findings in the first pathology report, which we did not research, were pointing towards the subsequent findings in the second pathology report. The second pathology report definitely contained more to be concerned about. The presence of the cells that caused some concern in the first report, were present in a higher density, plus they were in a more aggressive (pleomorphic) form.
Pathology Report #2.
The following was present in the mass that was removed during the second lumpectomy.
- Extensive Lobular Carcinoma In SITU, or referred to as LCIS.
- This is not cancer, it is a type of cell that is a marker for cancer. The risk of developing cancer from LCIS is around 25% or 1 out of 4 women.
- Pleomorphic type LCIS.
- This actually makes it PLCIS, which is a rare type of LCIS and increases the future risk of of cancer over other known types of LCIS. The additional risk factor is not known since it is a rare type.
- Pleomorphic is defined as, occurring in various distinct forms. In terms of cancer cells, having variation in the size and shape of cells or their nuclei.
- If the pathologist has the proper training and the correct stains available, the diagnosis of PLCIS is possible, otherwise it can be miss-diagnosed as high-grade Ductal Carcinoma In SITU (DCIS).
The above risk factor does not take into account the following findings which can also increase the risk, or confirm it.
- Focal areas of Atypical Ductal Hyperplasia (ADH).
- ADH is a precancerous condition that affects cells in the breast. ADH describes an accumulation of abnormal cells in a breast duct. ADH isn’t cancer, but it can be a forerunner to the development of breast cancer. If over the course of your lifetime the ADH cells keep dividing and become more abnormal, the condition may be reclassified as Ductal Carcinoma In SITU (DCIS), a form of noninvasive breast cancer.
- Focal areas of Associated Intraluminal Necrosis.
- This is the presence of dead cells. The cells that made up the mass multiplied faster than the blood flow could support them, thus the presence of dead cells.
- Calcifications arising in a background of, and involving Sclerosing Adenosis.
- In adenosis, the breast lobules are enlarged, and they contain more glands than usual. Sclerosing adenosis is a special type of adenosis in which the enlarged lobules are distorted by scar-like fibrous tissue. This condition is benign, it is not a cancer.
- Calcifications (mineral deposits) may form in adenosis, in sclerosing adenosis, and in cancers. These can be confusing on mammograms.
- Some studies have found that women with sclerosing adenosis have about the same risk of developing breast cancer as do women with usual Hyperplasia. Atypical Ductal Hyperplasia (ADH) increases this risk.
- Pathologist’s Comments.
- Microscopic examination reveals breast parenchyma (the breast as a whole) in which there is extensive sclerosing adenosis with extensive involvement by LCIS with some foci having intraluminal necrosis and calcifications. In addition, there are also areas of ADH multifically (more than one area). The in situ and lobular nature of the lesions are confirmed on immunohistchemical stains for E-Cadherin, smooth muscle myosin, and pancytokeratin. No evidence of an invasive component is identified.
For more information on how the conditions listed above can affect breast cancer risks, click on the link below.
There is a lot of information on the page associated with the link above. Scroll towards the bottom for the relevant information. Look for the headings “Types of non-cancerous breast conditions” and “How benign breast conditions affect breast cancer risk”.
A Little More About PLCIS.
The following are excerpts from a study conducted in 2006 and found on the PubMed Central website. Carcinomas as listed in the following article are not classified as cancer when used in the context of CIS, DCIS, LCIS and PLCIS.
“Pleomorphic lobular carcinoma in situ (PLCIS) is a recently defined entity by Frost ET AL. in 1996, PLCIS has not been fully defined histologically and biologically. Morphologically it has the typical architectural pattern of lobular carcinoma in situ (LCIS), but the neoplastic cells resemble intermediate grade ductal carcinoma in situ (DCIS).”
“Most breast carcinomas in situ (in situ means localized, not invasive) are easily categorized as ductal (DCIS) or lobular (LCIS). However, some carcinoma in situ (CIS) lesions have indeterminate histological features. For example a pleomorphic variant of invasive lobular carcinoma (PILC) is known to be an aggressive variant of invasive lobular carcinoma (ILC). Its in situ counterpart, is defined as (PLCIS). PLCIS, like PILC, is expected to be more aggressive than LCIS. Moreover, although classic LCIS is considered a risk marker for cancer when compared to DCIS, the clinical and biological significance of PLCIS is currently unknown.”
“The cellular morphology in PLCIS is similar to that of intermediate grade DCIS. In the past, because of the histological similarity and associated necrosis, most PLCIS lesions have been diagnosed as DCIS. Treatment strategies are different for different types of CIS. If a diagnosis of LCIS is made, the patient is followed by observation, whereas a diagnosis of DCIS usually leads to definitive treatment, depending on the extent and grade of DCIS (mastectomy, lumpectomy and radiation therapy, or observation alone). Because of the expected aggressive behavior of PLCIS, it is believed that treatment similar to DCIS may be warranted.”
The following excerpts are from an article written in 2008 and it deals with the differences of LCIS and PLCIS as it is seen from the pathologists point of view. As found on the PubMed.gov website.
“Pleomorphic lobular carcinoma in situ (PLCIS) is a more recently characterized entity that mimics high-grade ductal carcinoma in situ (DCIS). PLCIS is sometimes treated similar to high-grade DCIS, but no consensus has been reached for the most appropriate treatment. The aim of this study is to evaluate the histologic and immunohistologic profile of pure PLCIS on core needle biopsies and present follow-up clinical data.”
“We conclude that PLCIS has a lobular immunostaining pattern for P120 catenin and E-cadherin indicating disruption of the E-cadherin/P120 catenin complex. This entity has aggressive parameters similar to high-grade DCIS including grade 3 nuclei, high Ki-67 (MIB-1) index, and HER2/neu positivity. PLCIS has a significant association with other high-risk lesions and invasive lobular carcinoma.”
A Final Word On The Diagnosis.
The second pathology report had one line in the diagnosis that was hard to read due to the way the printer formatted it. The type was squashed and I did not realize at first that this was the line with the most important finding. It had Pleomorphic Type listed after the the mention of the LCIS.
The more I researched this, the more I became concerned, and I knew that I was leaning towards Diane having the mastectomy/recon done. Especially when taking into account her family history, the chances of the Tamoxifen messing with her quality of life and the ability to function, the cycle of testing, the physical pain associated with each test, the radiation exposure with the mammograms, the density of her breast tissue causing detection to be difficult, and the emotional uncertainty related to the risks.
It was just a matter of Diane being OK with it and ready to take that step too. After discussing all the factors and choices with family and friends, everything started to come into focus for her, and she was ready to make the same decision.