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Posted by Betsy Mullen on 10/25/2001 from 24.4.254.66:

In reply to: Breast hardening and Noveldex posted by Loren on 10/24/2001 from 205.188.192.52:

Dear Loren:


Your friend is blessed to have your friendship. Thank you for posting your message on her behalf.

We ran your message by one of WIN Against Breast Cancer’s medical advisors, a leading and well-respected breast surgeon. Here is the response:

"Hardening of the breast IS a common reaction to radiation
therapy and lasts anywhere from a few months to a couple of years."


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 your friend pursue her question(s) with her physicians. She 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 that I have included below in this message.


There is a toll free number that you and your friend can call to get questions answered about Nolvadex (Tamoxifen). It is the Nolvadex Information Service. The telephone number is (800) 345-4334. It is operated by AstraZeneca Pharmaceuticals, the manufacturer of Nolvadex.

Loren, if you and your friend have not contacted our office directly yet, we have trained information specialists that can speak with you one on one and who can 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 either of you, Please feel free to call us on our toll free line at (866) 2 WIN ABC.

You friend (and 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.

WIN Against Breast Cancer has several additional resources that I think will be very helpful to your friend. We have our Breast Buddy Breast Care Program which matches women who are at least 1-year post treatment (excluding tamoxifen because that is often a five-year protocol) with new patients to mentor and support them throughout the diagnosis, decision-making, treatment and recovery periods -- for at least one-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 your friend is interested, we could look into matching her with a Buddy who shares a similar profile to hers. Depending upon where she lives, 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 had similar treatment.

We will be happy to send you both educational materials, free of charge regarding breast anatomy, 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 a video about tamoxifen, nutrition during cancer treatment, dealing with side effects of treatment, breast reconstruction and much more depending upon your individual needs. For example, we can send you a book by cancer survivor and advocate, Richard Bloch entitled "Guide for Cancer Survivors". We do not charge for any of our services.

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).

ADDITIONARESOURCES TO HELP

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 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 recommend was written by Michael Lerner, the Founder of Commonweal. There is a link to Commonweal in the Resources Section of this site. The book is entitled "Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer". The entire text of this book can be found on Commonweal’s web site.

Another good book 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.

The books can be purchased on line in our virtual bookstore via Amazon.com. 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 and/or your friend.

Loren, I will close with this thought and a saying of mine: "When in doubt, check it out." We know our bodies well and we can be our own best advocates. We should all pursue any concerns with our health care team. And remember, we are strong advocates of second opinions.

I am holding you and your friend in my thoughts and look forward to hearing from you and your friend 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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