Women's Information Network
Against Breast Cancer

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Posted by Betsy Mullen on 4/4/2001 from 64.12.105.171:

In reply to: lobular breast cancer and mammograms posted by Marsha Gough on 4/1/2001 from 66.30.87.125:

Dear Marsha:

You are also welcome, if you have not done so already, to fill out the special Personal Profile Form (blue link at the top of this page) with your specific information and with requests for some of the information and resources I have outlined below. All of your personal information will remain confidential.

Also, if you have not contacted our office directly yet, we have trained information specialists that can speak with you one on one to determine the best materials to send you (all free of charge), including a booklet entitled "Understanding Breast Changes" and an in-depth WIN ABC resource guide with great resource listings and suggested reading. You are more than welcome to call us at (626) 332-2255. If it is a long distance call for you, just ask us to call you right back so that the call is "on our dime."

WIN Against Breast Cancer has several additional resources that I think will be very helpful to you. We have our Breast Buddy Breast Care Program which matches women who are at least 1-year post treatment (excluding tamoxifen) with new patients to mentor and support them throughout the diagnosis, decision-making, treatment and recovery periods -- for at least 1-year. We make every effort to match Buddies with new patients by age, geography, marital status, type and stage of breast cancer, type of treatment, hobbies and on and on. If you are interested, we could look into matching you with a buddy who shares a similar profile to yours. Depending upon where you live, this may need to be a telephone and e-mail relationship, but it certainly helps to speak with another woman who had a similar diagnosis and who faced similar decisions regarding her treatment options.

We will be happy to send you educational materials, free of charge regarding breast anatomy, breast health, understanding breast changes, questions to ask your health plan about exemplary care (found on our web site under help yourself – 10 key questions for women to ask their health plans), various videos including nutrition during cancer treatment, dealing with side effects of treatment, tamoxifen, breast reconstruction and much more depending upon your individual needs.

In addition, WIN Against Breast Cancer has published a very extensive Breast Health/Breast Cancer Resource Guide. We will be delighted to send these materials to you (all of which are free of charge to patients and the public).


The following information is from a few previously posted messages that I hope you find helpful.

Posted by Betsy Mullen on 2/25/2000 from 205.188.199.142:

In reply to: CAN INFILTRATING LOBULAR BR CA BE PICKED UP ON A MAMMO? posted by Judy on 2/24/2000 from 152.163.213.191:

Here is the feedback from one of our medical advisors, a leading breast surgeon:

The ability to detect a cancer on mammography depends on the difference between the radiologic density of the cancer and the density of the surrounding breast tissue. If the cancer has the same density as the surrounding breast tissue, it tends to blend in (unless it irritates the body and leads to the formation of calcifications). Ductal breast cancer tends to be much denser than normal breast tissue, so it is generally detectable once the cancer is over 10mm in size. Lobular breast cancer is much less dense and may be similar to the density of normal breast tissue. Although it is usually detectable on mammogram, there are more cases in which invasive lobular cancer was invisible on mammogram even though it was extremely large. Most invasive lobular cancers and invasive ductal cancers are palpable after they reach 20 mm in size. As above, lobular cancers tend to be harder to feel than ductal cancers.

Here are some additional specific information/questions you may want to think about and discuss with your doctor(s):

1. Do you have a family of breast cancer?

2. How old are you?

3. Did you receive a copy of the radiologist’s report/findings from this last mammogram?

4. Did you physician(s) discuss the possibility of a breast ultrasound?

5. Did you physician(s) discuss the possibility of a breast MRI?

6. Do you know how to do a proper breast self-exam (BSE)? You can receive this information and right on our web site (www.winabc.org) and we will also be delighted to send you a booklet that clearly illustrates breast anatomy and how to perform proper BSE’s.

7. Did you receive a copy of the radiologist’s report/findings from your latest and previous mammograms?


One key factor to take into consideration is your age. Premenopausal women particularly women in their 20's and 30's tend to have dense breast tissue which is why traditionally, baseline mammograms begin between the ages of 40-50.

Another key question is whether or not you have breast implants. There are some schools of thought that recommend an occasional breast screening with magnetic resonance imaging (MRI) for women with a breast implant(s). MRI does not involve any exposure to radiation, although it is important to keep in mind that such exposure is minimal with mammograms.

MRI is gaining recognition as a very effective method to detect a ruptured or leaking breast implant and as a breast screening method that may be more effective than mammography for women who have implants. It takes a skilled MRI technician/expert to detect an area of concern in a breast MRI because when a dye is used w/ MRI, (used to help with the reading of tumor tissue) both the breast tissue and the dye appear bright so a trained eye needs to analyze the images. (Source: The Complete Book of Breast Care by Niels H. Lauerson, MD, PhD and Eileen Stukane)


We will be delighted to send you educational materials, free of charge regarding breast self-exam, breast health, understanding breast changes, questions to ask your health plan about exemplary care (found on our web site under help yourself – 10 key questions for women to ask their health plans), breast cancer myths and much more depending upon your needs.

Do you have a copy of all of your pathology reports? I know that you have been very thorough in obtaining information on your previous studies (mammograms, biopsies, etc.) and commend you for being so proactive. We do suggest that patients request a copy for their personal records.

In addition, our web site (winabc.org) has a section on how to read and understand a pathology report. I you have not done so already, I suggest that you visit this section of our site. We also have an in-depth glossary of terms and tips to help patients cope with treatment on this site that I hope you find helpful if you opt to utilize these sections


ABOUT LOBULAR BREAST CANCER

The following information regarding infiltrating lobular carcinoma and prophylactic mastectomy is taken from a very current (copyright 2000) and very reliable professional source **(please see reference below):

Invasive lobular carcinoma is the second most common type of invasive breast cancer and appear to more often be bilateral than other types of breast cancer. The reported range of bilaterality has been broad (6% to 47%).

In two clinical follow-up studies of patients with invasive lobular carcinoma, the incidence of future breast cancer in the healthy breast (contralateral breast) among infiltrating lobular breast cancer patients was similar to that of patients with invasive ductal carcinoma. The studies were 1) Infiltrating lobular carcinoma of the breast. Clinicopathologic analysis of 975 cases with reference to data on conservative therapy and metastatic patterns. Cancer 1996; 77:113. Data


**Source and Suggested Resource: Adapted from: Diseases of the Breast, Second Edition; Editors: Jay R. Harris, Marc E. Lippman, Monica Morrow, C. Kent Osborne; Publisher: Lippincott Williams & Wilkins; 2000; ISBN #: 0-7817-1839-2.


Here are a few terms taken from this site’s Glossary and Breast Cancer Basics sections, that may be helpful to you and others reading this posting:

Lobe: A reasonably well-defined part of an organ separated by boundaries, especially glandular organs and the brain.

Lobular: Pertaining to the lobules (e.g., of the breast).

Lobular carcinoma in situ (LCIS): Abnormal cells within the lobule that do not form lumps. Lobular carcinoma in situ can serve as a marker of increased cancer risk.

Lobular carcinoma arises from the small end ducts of the breast and occurs in both invasive and noninvasive forms. The invasive form is thought to develop from, or be associated with, lobular carcinoma in situ (LCIS). Lobular carcinoma accounts for approximately 5% to 10% of all breast cancers and has a tendency toward bilateral (both breasts) involvement.

Lobules: Parts of the breast capable of producing milk.


RESOURCES TO HELP YOU

There is a great book out entitled "Be a Survivor" written by Vladimir Lange, M.D. My plastic surgeon and I served as consultants on the project (there is also a corresponding video and interactive CD-ROM). There are full color pictures including my breast reconstruction in the book, video and CD-ROM, as well as description of the various reconstructive surgical procedures and all major breast cancer types, stages, treatments and other important information. You can purchase the book through our site’s bookstore. An additional book that I highly, highly recommend for you was written by Michael Lerner, the Founder of Commonweal. There is a link to Commonweal in the Resources Section of this site and I will post it on this message (at the bottom) as well. The book is entitled "Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer". Another good book that extensively covers breast cancer and reconstruction is entitled "A Woman’s Decision" which is also highlighted in our "virtual bookstore". The books can be purchased on line in our virtual bookstore via Amazon.com. Another book I think will be helpful to you is entitled "The Road to Immunity: How to Survive and Thrive in a Toxic World" by Kenneth Bock, MD and Nellie Sabin. It covers in depth information about the immune system and how to keep our immune systems functioning at peak capacity. If finances are a problem, please let us know and if the books are available in our library, we can work out a lending situation for you.


Marsha, I will close with this thought and a saying of mine: "When in doubt, check it out." You know your body well and are your own best advocate. Pursue any concerns with your health care team. And remember, we are strong advocates of second opinions.

I am holding you in my thoughts and look forward to hearing from you with an update on how you are doing and how WIN ABC can best be of help and support to you. Please keep us "posted".


My warmest personal regards,
Betsy


Elizabeth ("Betsy") Mullen
Founder, President/CEO
WIN Against Breast Cancer
Main Office:
536 S. Second Avenue, Suite K
Covina, California 91723
Telephone: 626-332-2255 Fax: 626-332-2585
San Diego Office:
Telephone: (619) 284-4900 Fax: (619) 284-7900
Web Site: www.winabc.org

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