Women's Information Network
Against Breast Cancer

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Posted by Betsy Mullen on 4/10/2001 from 64.12.105.157:

In reply to: her2/nu+ recurrance questions posted by Janet on 4/3/2001 from 205.188.198.178:

Dear Janet:

While it thankfully sounds like you have early stage breast cancer, it would be helpful to know your exact type and stage of breast cancer. It is also important to keep in mind that everybody is different and every body is different and that we are people and not statistics. I can totally empathize with your question as I asked very similar questions of my physicians when I was diagnosed with breast cancer nearly 8-1/2 years ago. At that time, I was told that I had a 60% chance of a recurrence even after my mastectomy and chemotherapy and that I could likely die in 2 to 3 years. Well, as you can see, that was nearly 9 years ago!

I want to make sure that when you are surfing the Internet and looking for health-related information, that you take the necessary steps to try and make sure that the sites you visit, and information you receive are responsible, accurate, legitimate and appropriate. There are a lot of wonderful health-related sites out there with great information, but, sadly, there are also many irresponsible sites that do not have good, reliable and safe information. Please refer to our web site’s policies regarding resource links as well as the HON code of ethics for health care sites found on our home page. WIN Against Breast Cancer subscribes to the HON code principles of the Health On the Net Foundation. This information will help you determine the reliability of health-related web sites.

If you have not done so already, I encourage you 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 and who can also determine the best materials to send you (all free of charge). 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."


No one that I am aware of knows for certain the risk of recurrence of any particular cancer for any one individual. The medical and scientific community only know statistically that given a particular set of circumstances in a particular group of patients, that particular things are likely to occur if the cancer is untreated. Even after an in depth study of risk factors is undertaken, scientists have come to the conclusion that there are more individual questions than there are general conclusions. So, when prognosis is discussed, what is really being said is that there is a pattern of consequences that have been observed in a lot of individuals who were in that situation. What cannot be said to any one particular person is "This is what is going to happen to you." Source and suggested resource: Adapted from The Complete Book of Breast Care by Niels H. Lauerson, MD, PhD and Eileen Stukane.

I did run across a reference to two articles that discuss disease-free survival and relapse rates with respect to breast cancer in which an amplification or overexpression of HER-2/neu. Amplification or overexpression of HER-2/neu has been associated with shorter disease-free survival and increased relapse rates. But again, please bear in mind that every one of us is a unique human being. You have other very good factors going for you such as negative lymph nodes! In the same reference book, I also read confirmation that Her-2 neu positive breast cancer respond better to a chemotherapy protocol that encompasses Adriamycin than a course of CMF, for example; so I hope that makes you feel better.
The two articles can be accessed through a medical librarian, which most medical centers should have in place. You can perhaps discuss the possibility of getting copies of the articles with your oncologist. If you need us to access the articles for you, please let me know and we will do our best to obtain copies. The articles will likely be highly technical. They are as follows:
1) Ross JS, Fletcherja. The HER2-neu oncogene in breast cancer: prognostic factor, predictive factor, and target for therapy. Stem Cells 1998: 16:413.
2) Revillion F, Bonneterre J, Peyrat JP. ERBB2 oncogene in human breast cancer and its clinical significance. Eur J Cancer 1998; 34:791.
Source and suggested resource: Adapted from Diseases of the Breast, Second Edition; Chapter 6: Management of Breast Pain by Ian S. Fentiman; Editors: Jay R. Harris, Marc E. Lippman, Monica Morrow, C. Kent Osborne; Publisher: Lippincott Williams & Wilkins; 2000; ISBN #: 0-7817-1839-2


Here is feedback that Shelly Blechman, WIN’s Vice President and Program Director, had posted in response to a Stage 3 breast cancer patient’s message asking for information on Stage 3 breast cancer survival rates. I think that there is wisdom in what Shelly had to say:

"I don't like to refer to survival rates because each person is so unique. We are individuals, not numbers. And what's to say if someone gets quoted a low survival rate, that they won't be part of the small percentage that DO survive?
I also think that positive attitude plays a crucial role in recovery. I believe that using complementary types of treatment are also important factors (such as use of imagery, meditation, herbal and vitamin supplements).
So I guess my recommendation is to focus on the positive aspects of what you need to do to recover and don't waste your energy searching for a number that does not relate to you as a person.

There is a good site for treatment information if you have not been to it. It is the Cancer Information Service at:

http://cancernet.nci.nih.gov/"


Here are some thoughts that I would like to share with you:

What is COURAGE?

Confronting the dragons

Overcoming the obstacles

Understanding the risks

Really living

Always believing

Going the distance

Expecting the BEST!


ADDITIONAL RESOURCES TO HELP YOU

WIN Against Breast Cancer has several resources that I think will be very helpful to you, Janet. 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).


There is a great book out entitled "Be a Survivor, Your Guide to Breast Cancer Treatment " written by Vladimir Lange, M.D. You can purchase the book through our site’s bookstore. An additional book that I 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 as well. The book is entitled "Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer".

Additional good books that extensively cover breast health, breast cancer and reconstruction are entitled "A Woman’s Decision, Breast Care Treatment and Reconstruction, 3rd Edition" and the newest edition of "Dr. Susan Love’s Breast Book" which are also available in our "virtual bookstore". 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.

We have another book in the WIN ABC library that good that is entitled "Assess Your True Risk of Breast Cancer" by Patricia T. Kelly, Ph.D., copyright 2000. It discusses what statistics really mean, evaluation of heredity and lifestyle risks and What You Need to Know About Genetic Testing (BRCA1 and BRCA2 gene testing).

The Complete Book of Breast Care by Niels H. Lauerson, MD, PhD and Eileen Stukane is also a very good resource with comprehensive and easy to understand information.

Another great resource about breast health is: 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. Most medical libraries should carry it; I’m not sure about regular public libraries.

The books can be purchased on line in our virtual bookstore via Amazon.com and should be available in most public libraries.


AN IMPORTANT REMINDER: It is very difficult to render an opinion without knowing all the facts of any one particular case. But one strong recommendation we would like to make is that you pursue your question(s) with your own physicians. You should feel fully empowered to obtain a satisfactory answer and feel free to seek a second or third opinion. We have some great tips on partnering with your health care team and key questions to ask your doctors, communication tips and informed decision-making tips to help you get the information you need. There is a special Personal Profile Form on our web site (blue link at the top of this page) that you can fill out and e-mail to us to help us best meet your needs and you are also welcome to call us at (626) 332-2255. Your information will be kept confidential.


Janet, please know that 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". And as you so wonderfully stated: "Keep fighting the good fight!"

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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