Women's Information Network
Against Breast Cancer

Please submit only once, then click "reload page" to see the updated board. Thank you.

Reload Page Post Message Message Board Search FAQ

Posted by Betsy Mullen on 2/11/2001 from 205.188.200.202:

In reply to: Mother new diagnosis posted by Thomas on 2/10/2001 from 207.90.123.140:

Dear Thomas:

A great first step would be to refer your mother to WIN ABC and to this web site. We have trained information specialists in our offices that can speak with you and your mother one-on-one to determine the best materials to send you (all free of charge).

WIN Against Breast Cancer has several resources that I think will be very helpful to your mother. First, we have our Breast Buddy 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 your mother is interested, we could look into matching her with a woman who has a similar personal profile and they could become "virtual", e-mail and/or telephone Breast Buddy.

In addition, we will be happy to send you and your mother an arsenal of educational materials, free of charge regarding post-surgery exercises, tamoxifen, 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, relaxation audiotapes and much, much more depending upon her needs. WIN Against Breast Cancer has also published a very extensive Breast Health/Breast Cancer Resource Guide. We will be delighted to send these materials to both you (all of which are free of charge to patients and the public). We can Priority Mail them to you so you get them as soon as possible. Just let us know and they will be on their way!


You and your mother are always welcome to telephone our office at (626) 332-2255; we can call you back so that the telephone call is "on our dime". Your mother is also welcome to complete our special Patient Profile Form and e-mail us with her information. All of her information will remain confidential. You can link to the special form at the top of the Message Board front page here on the WIN Against Breast Cancer web site (www.winabc.org). All e-mailed forms and conversations with staff and volunteers will remain confidential.


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). You can purchase the book through our site’s bookstore.


We have information on this site that explains the main breast cancer treatment options and resources that we can send to both of you regarding treatment options for breast cancer.

Your mother underwent a procedure called an axillary lymph node dissection or a sentinel lymph node biopsy where her surgeon removed either a sampling of lymph nodes or one lymph node (the sentinel node) to determine whether or not cancer cells were present in her lymph nodes. These are diagnostic procedures to help stage breast cancer and determine any adjuvant treatment (post-surgery treatment) that may be necessary such as chemotherapy and/or radiation.

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 both will find helpful if you opt to utilize these sections.


It is important to know whether or not your mother is on hormone replacement therapy (HRT). If she is and has not been taken off HRT, she needs to discuss doing so with her health care team. It sounds like your mother had a test performed on the tumor called a hormone receptor test to determine whether or not the female hormones estrogen (in particular, estrogen) and progesterone played a part in the development and growth of her breast cancer. This is one test you want to come back "positive", because it then usually associated with a less aggressive and more treatable kind of breast cancer. It sounds like your mother’s Estrogen Receptor Test was positive, which means that your mother will likely be put on a protocol of Tamoxifen, an anti-estrogen medication. We have a great video that explains how Tamoxifen works, its benefits and risks, that we will be happy to send to both of you free of charge. We also have great resources for natural approaches to menopause in WIN ABC’s Breast Health and Breast Cancer Resource Guide, also free of charge.


I have included information below that is from WIN Against Breast Cancer’s (WIN ABC) Breast Buddy Volunteer Curriculum ©1994, rev. 1/00 that includes suggestions on how to help and support a breast cancer patient. In addition, we will be happy to send you; free of charge, a great book written by Richard Bloch entitled "Guide for Cancer Survivors". We can also send you additional information about breast health and breast cancer to expand your own general knowledge.


With respect to your mother’s post-operative recovery, it is important to bear in mind that everybody is different and every body is different. The following information is taken from Lange Productions’ book, "Be a Survivor":

Recovery After Mastectomy:

Most women will stay in the hospital for one or two nights after a mastectomy. Some women may go home that same day. It depends on several factors including patient preference and health plan policy, believe it or not.

Everyone reacts to surgery differently. Many patients can take a short walk in and out of their hospital room the same day of their surgery. The next day, many are able to eat a regular diet and get around quite well. They will experience soreness and stiffness with respect to range of motion of their arm on the side of surgery and there are range of motion exercises that your mother should have demonstrated to her by her health care team. We can also send her a video, the contents of which should also be discussed with her surgeon.

When your mother returned home, she likely felt more fatigue than usual for awhile and should not be alarmed, keeping in mind that she just had surgery with general anesthesia – fatigue is to be expected.

She should take sponge baths for a few days after surgery until her incision begins to heal. She should not shower until her drain(s) are removed and then do so with soft water pressure and gently, patting rather than rubbing the incision.

With respect to range of motion on the side of surgery, your mother will likely have some trouble moving her arm because of muscle tightness and soreness around her shoulder. She should use her arm as is tolerable immediately after surgery, but avoid active pulling or stretching until her drains are removed and she receives her doctor’s approval to do so.

It sounds like your mother did have an axillary lymph node dissection, and she may experience some numbness in the upper inner arm and armpit (axilla) area. This may be due to some damage (sometimes unavoidable) to her intercostolbrachial nerve.

Many women return to their regular routines and to work as soon as they feel better, even during adjuvant chemotherapy and/or radiation therapy. If their work requires heavy lifting or strenuous physical activity, they may need to change such activities until they have fully regained their strength and range of motion.


I also want to make sure that the rest of your family is following through with their own breast health needs, Thomas. Here are a few questions that come to mind:

Do you know how to do a proper breast exam? You can receive this information and register for monthly breast self-exam reminders right on our web site (www.winabc.org)

Are your female relatives current on having screening mammograms (if appropriate, depending upon their age? Regular clinical breast exams?



The following information is an excerpt from WIN Against Breast Cancer’s Breast Buddy Volunteer Curriculum, ©1994, revised 1/99:

"The best way to cheer yourself up is to try to cheer somebody else up."
Mark Twain

Family members, partners and significant others cannot take away the fact that their loved one has breast cancer, wish as they might. But they can work together to deal with her diagnosis and the changes that result. Ask the patient what you can do to help. Patients’ needs may change from day to day. The following lists have been developed for volunteers, family members and friends.

Suggestions

Go with the patient to doctor appointments. Take notes to record information discussed during the visit. Since you do not live close to your mother, perhaps you can arrange for a conference call with your mother and her physician(s).

Prepare meals or bring a frozen casserole for later use.

Help the patient investigate treatment options and available resources.

Go with the patient to shop for a wig and/or prosthesis.

Suggest to the patient that she "countdown" her treatments ("10, 9, 8...") to make them seem more manageable.

Acknowledge treatment milestones (e.g., halfway point).

Be honest about your needs and feelings. Encourage the patient to do the same.

Encourage patient to remain active. Plan phone calls and visits to help keep her spirits up.

Run errands (grocery shopping, car-pooling, etc.)

Encourage the patient to express her feelings. Listen, listen, and listen!

Take care of children (help with homework, etc.)


Five Keys to an Individual’s Support System

1. Self: Positive facets of a person that she brings to an experience. These include personality, successful past experiences, the ability to handle difficult situations and a positive self-image.

2. Family and Friends: Significant sources of practical, emotional and social support.

3. Work and/or School: Sources of satisfaction, positive distraction, productivity, and emotional and social support.

4. The Medical Community: Sources of physical, informational and psychosocial support.

5. Religion and/or Spirituality: Spirituality is expressed in many ways. Various types and places of worship can be strong sources of support and hope. Individuals who incorporate an Eastern philosophy into their lifestyle, such as meditation and yoga, often experience psychological well being from these approaches.

Adapted from: Fawzy & Fawzy, "A Structured Psychoeducational Intervention for Cancer Patients", General Hospital Psychiatry, 1994



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.

I have established a link for you below to the shared decision-making section of our web site, which contains a decision-making checklist to help break down the treatment decision-making process into manageable steps. I hope that it proves helpful.

I know first-hand how scary this is; I am an eight-year breast cancer survivor. I also know that a breast cancer diagnosis impacts patients’ loves ones, such as yourself and we are here to help and support you as well as your mother in any way that we can.

Here are some words about courage that I would like to share with you and your mother:

What is COURAGE?

Confronting the dragons

Overcoming the obstacles

Understanding the risks

Really living

Always believing

Going the distance

Expecting the BEST!


Please take care, Thomas and let us know how we can best be of help and support to you and to your mother. She is blessed to have a son that cares so much – you are a wonderful advocate. Please also keep us "posted" on how you are both doing.


My warmest personal regards,
Betsy

Betsy Mullen
Founder, President/CEO
WIN Against Breast Cancer
Main Office:
536 S. Second Avenue, Suite K
Covina, California 91723
Phone: 626-332-2255 Fax: 626-332-2585
www.winabc.org

• Informed Decision-making

Follow Ups:

Post a Followup

[ Followups ] [ Post Followup ]

Please submit only once, then click "reload page" to see the updated board. Thank you.

Reload Page Post Message Message Board Search FAQ

HOME

PHOTOS

SITE MAP

GLOSSARY OF TERMS

SEARCH