Ask the Experts: Chat Session with William C. Dooley, M.D. and Lillie Shockney, RN, MAS
Edited Transcript of June 17, 1997 Conference InteliHealth/Johns Hopkins Forum
InteliHealth:Welcome. I have now closed the floor and we are ready to start our conference on Breast Cancer. Our guests tonight are William C. Dooley, M.D., director of the Johns Hopkins Comprehensive Breast Center, and Lillie Shockney, RN, MAS, a breast cancer survivor and author of "Joining the Club - the Reality of Breast Cancer." Dr. Dooley is associate professor of surgery and oncology and Chief of Breast Surgery at The Johns Hopkins Hospital. Ms. Shockney is Education and Outreach Director of The Johns Hopkins Breast Center. She is also co-founder and vice president of a national nonprofit organization called "Mothers Supporting Daughters with Breast Cancer."
Welcome, Dr. Dooley and Ms. Shockney. Thank you both for joining us tonight!
Dr. Dooley: Traditionally inflammatory breast cancer has a cure rate <15% with traditional surgery and routine chemotherapy. BMT offers a more complete treatment and now survival rates are based on degree of response to initial chemotherapy. If a good response is obtained from first cycles of chemo - BMT may offer survival rates as high as 30-45%. This is still under intense investigation. These would have to be considered only as current best guesses for the long term outcome of these new therapies.
Dr. Dooley: Which kind of surgery?
InteliHealth: Dr. Dooley, I think Pat is referring to a mastectomy...
Dr. Dooley: Most women return to all normal activities within 4 to 6 weeks following mastectomy without reconstruction. Many patients resume normal home activites within 1-2 weeks. Most patients will have some stiffness when they raise their arm for at least 12 weeks or more.
Lillie Shockney: I have had two mastectomies and one lumpectomy since 1992. I found that in both cases for my mastectomy surgeries I was able to resume activities including getting in the swimming pool (which is great exercise by the way) three weeks after surgery.
Dr. Dooley: This can be minimized with good exercise during the first few weeks post mastectomy.
Lillie Shockney: The emotional recovery can take much longer though. The degree of emotional support a woman has at home, how she feels about her new body image can directly affect her physical recovery which is important to factor in.
A valuable part of recovery is being fitted for a breast prosthesis. This is usually done 6 weeks post-op when all the surgical area is no longer tender or swollen.
InteliHealth: Lillie--I know that there has been a great deal of interest in prostheses...can you expand please?
Lillie Shockney: Feeling "whole" again is very important to emotional recovery.
InteliHealth: What are all the steps involved?
Lillie Shockney: The most important thing is to go to a place where there are certified fitters--women trained in how to properly fit a woman for a prosthesis. I also chose to name my prostheses. Betty Boob and Bobbie Sue--my boobsy twins!
I tell people I treat them like other women do their American Express cards--I never leave home without them!
InteliHealth: I guess a sense of humor is needed to survive too, eh?
Lillie Shockney: There are many different types of prostheses that are available ranging in price and quality from $50 to $400. most insurance companies wil pay 80-100% toward a prostheses but only for one (if you've had one mastectomy). So be careful what you submit for reimbursement.
Lillie Shockney: Getting properly fitted for a mastectomy bra is equally important.
Dr. Dooley: I assume from your description that so far your cancer has not responded well to other drugs. The ideal situation would be to find some drug or combo to which your cancer is responsive. Navelbine is certainly a good choice if you have failed Adriamycin-based chemo. If you respond then a high dose treatment including Navelbine might be designed for you. If it fails, then other drugs or immuno Rx can be tried. Seek more info from 1-800-4CANCER.
Dr. Dooley: Mammography increases your risk about thiry years later for breast cancer. The risk is small however. It is the same as the amount of radiation received if you fly from Baltimore to Denver.
Lillie Shockney: I have had a lot of contact with women-- partly because I am very active on the internet , also very active in the breast center here at Hopkins and am also a national speaker on my own breast cancer experience. All women to some degree share a common experience emotionally-- the shock of the diagnosis, the fear of dying, the struggle with making the decision about what treatment will be right for you... I am a strong believer in the value of educating patients as much as possible about this disease and what their treatment options are-- women feel as if they have lost control of their life when diagnosed with this disease. Whatever I can do to empower them with information will aid them in regaining control. I ravaged books and material staying up all night reading which made me feel better. I also believe in using humor as a powerful complementary therapy weapon when fighting this disease....
Dr. Dooley: Please investigate now a variety of other options - so if Navalbine does not work you will have a plan. I would recommend looking into any Phase 1 or Phase 2 trials. Call 1-800-4CANCER to get the latest list that apply to you. Read carefully and call and ask questions of the investigators.
Dr. Dooley: Male breast cancer occurs in about 1000 cases a year in the U.S. It is treated very similarly to female breast cancer. Although men have an option for breast conservation - so far I have never saved a man's breast. The most common ages for male breast cancer is over 68 years old. The average age of women with breast cancer is 58.
Dr. Dooley: The best prevention is a low fat diet. Recent studies have even shown that low fat diets increase the accuracy of mammograms by decreasing breast density and making cancers easier to find. Other things are: * stop smoking * decrease alcohol consumption * breast feed for greater than a year per child
Dr. Dooley: Try immunotherapies or new Phase 1 drug trials. Unfortunately no standard treatments work very well in this situation. Seek advice on new trials via 1-800-4cancer.
Dr. Dooley: We have known for many years that estrogen causes breast cancer in lab animals. The concern with the pill is the estrogen content and the potential life-long effects it might have. High dose estrogen BCP of the 60's had dramatic increases in breast cancer risk.
InteliHealth: How does that compare with the new low-dosage Pills that are being prescribed today?
Dr. Dooley: Few studies have followed enough patients for life to adequately reassure all scientists that the current pills have no effect. Certainly the effects of the current pill is low for the first 10 years after taking them.
Dr. Dooley: There is not good evidence for this now. I personally believe that unless consumed in excess as a teen it will probably have no effect.
InteliHealth: Lillie: Would you like to talk a bit about family support and its importance?
Lillie Shockney: This is a disease that no one should attempt to battle alone. It requires the support of people who love us to help get us through. My own mother dealt poorly with my initial diagnosis. She is normally a rock but this was more than she could cope with. Her fear of losing me overwhelmed her. She kept saying that she could cope if it was happening to her but not to me. The second time I needed mastectomy surgery she did much better. She knew what to expect. She knew how to help me. This helped me emotionally too because we women have a need to try to help everyone else before we help ourselves. As a result of my breast cancer experiences and finding no support programs for mothers who have daughters with breast cancer in March 1995 my mother and I co-founded an organization which is now a national nonprofit organization-- called MSDBC -- Mothers Supporting Daughters with Breast Cancer. We've provided assistance to more than 300 "sets" of mothers and daughters since we began. For more help and information call 1-410-778-1982.
Spouses have a tough time too. There is an excellent book called "Man to Man-- when the woman you love has breast cancer" -- written by Ann Jillian's husband. It is very helpful for men-- they can relate to it.
InteliHealth: Lillie - Did you write about your experiences with your mother in your book?
Lillie Shockney: Yes, I did write about my mother in my book. As a matter of fact my mother and father both wrote a chapter in my book as well-- through the eyes of parents with an adult child with breast cancer.
The newest edition of my book is called "The Breast Cancer Survivor's Club" -- it contains detailed information about how to obtain support in a resource chapter I carefully researched and assembled.
It also tells about my experiences as a nurse and now most recently as a patient. My husband has been a model husband for such a crisis and there is a lot of information about him as well as our daughter who was 12 when I was first diagnosed. My husband and I made a commitment that every day no matter what we would find something funny about the fact that I had gotten breast cancer. This is one of the reasons that I named my breast prostheses.
Dr. Dooley: In my experience the better the family and friend support network is for a patient the faster they recover. It is extremely important to have support people that are reliable around during the diagnosis and treatment. A supportive hug from anyone in that group is often more effective than pain medication or valium.
Lillie Shockney: Learning the best way to communicate with children about this disease and its treatment is also critical. Children often times think that they are the cause of the illness. Two of the most common questions children between the age of 5 and 13 is : 1) Mommy, are you going to die? 2) Did you get this disease because you had me?
InteliHealth: We're about to end the conference now, any final questions?
Dr. Dooley: Yes, I am. You can reach me at the Johns Hopkins Breast Center. Call 410-955-4851.
Dr. Dooley: The vast majority of patients today have a very good prognosis. Get regular mammos at a GOOD facility - it is key to your survival.
Lillie Shockney: I think that it is valuable to keep on top of all the educational material avaiable about this disease. It is impossible to learn too much. There is power in information, support from loved ones and faith in ourselves that we can beat this disease... and we can.
InteliHealth: Thank you all for joining us tonight! Please drop in the InteliHealth/Hopkins Forum soon to see a transcript of tonight's conference!
Copyright InteliHealth, 1997. All rights reserved. This interview is not intended to provide advice on personal medical matters, nor is it intended to be a substitute for consultation with a physician.
Last updated January 21, 1998
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