I would like to welcome all our new readers and wish everyone a happy new year. We have made a lot of progress in the last few years and look forward to sharing the challenge of increasing the awareness of lymphedema among patients, therapists and doctors. Our highest priority for the upcoming decade is to work to decrease the incidence and improve the treatment of lymphedema.
As most of you know, I am an oncologist and I conduct research and clinical trials studying new methods to treat cancer. I have been busy the last few months presenting the results of my research involving gene therapy at oncology meetings in Washington DC and New York City. There were many exciting new developments in the treatment of breast cancer discussed at these meetings and I will discuss some of these developments in upcoming editions of eNews.
I think that lymphedema is best treated by education and prevention and the best way to prevent lymphedema is to improve the treatment for breast cancer. If the treatment options for breast cancer were significantly more effective, the need for axillary dissection as a staging procedure could be eliminated or significantly decreased and the incidence of lymphedema would also decrease. I firmly believe that basic and clinical research will lead to better methods to treat both breast cancer and lymphedema. There was an interesting summary of a recently published paper that discusses the importance of lymph node involvement and prognosis from breast cancer.
While the research meetings were very interesting and educational, it is great to be back home. So, it is time to review and summarize the results of the breast cancer reconstruction survey. One of the readers of Lymphedema eNews asked whether breast reconstruction increased the risk of developing lymphedema. I reviewed the published literature and there is no data to answer her question. Since posting the reconstruction survey, 18 women have responded. Their willingness to share their experience with breast reconstruction is valuable to anyone considering reconstruction following mastectomy.
The survey was long so I will present the first part of the survey in this eNews. In this edition of eNews I will summarize the types of surgery the women had, how soon after surgery they developed lymphedema and whether they felt the reconstruction contributed to or caused lymphedema.
The average age of the women at the time of the surgery was 40 years and the average age of presentation of lymphedema was 42 years.
Type of reconstruction. 5 women had tram flaps, 6 had implants (5 saline and 1 silicone), 1 woman had a latissimus dorsi flap and 1 woman had the opposite breast removed. The remainder did not specify the type of reconstruction and one woman did not have a reconstruction because she had inflammatory breast cancer.
Tram Flaps. Of the 5 women with Tram flaps, 2 felt the reconstruction had no effect on lymphedema. 2 felt the surgery caused or worsened their edema. 1 woman had just had her surgery and felt it was too early to know whether there was an effect of the surgery on lymphedema. Of these women, one woman was not sure if the tram flap that caused the lymphedema. In her case, lymphedema arose shortly after she had a mammogram where the technician "mashed" on her breast too hard. One woman developed mild lymphedema about 6 months after the tram flap surgery and also was not sure if the reconstruction caused the lymphedema. In addition, she felt positive about the reconstruction. Another woman developed lymphedema after the reconstruction but felt the lymphedema may have been caused by lifting a heavy object or having her blood pressure checked in the affected arm.
Implants. Of the 6 women who had expanders and implants, 2 women reported that the implant had no effect on the lymphedema and 4 women felt that the surgery caused or worsened their lymphedema. In 2 women the lymphedema occurred soon after the implant was put in place. One woman developed lymphedema shortly after having the implant put in place. She feels she can live with the reconstruction but wishes she did not have to contend with lymphedema. Another woman reported that her lymphedema was relatively mild but improved after the implant was removed. In her case, she felt the lymphedema was exacerbated by repetitive work in her job as a nurse. One of the women had a tissue expander removed and developed lymphedema due to an infection that happened after the surgery to remove the expander. 2 women reported that lymphedema occurred about 1 year after the surgery. Both of the women who developed lymphedema 1 year after the implant was put in place felt uncertain whether the lymphedema is due to the implant. In addition, both women indicated they felt positive about having an implant despite the lymphedema. The one woman with a silicone implant developed lymphedema 1 year after the implant was put in place.
"I have only had mild lymphedema that is controlled with a compression sleeve that I wear five days a week and I wrap my arm at night every other night. I am concerned about how reconstruction will effect my lymphedema as I am sure I will not be able to wrap or wear a compression sleeve for weeks after the reconstruction."
"Since I had my reconstruction at the same time as the mastectomy I had no effects from the reconstruction. My lymphedema developed after a mammo on the reconstructed breast at my yearly check up. They mashed it too hard! Currently I feel....Great! Because I never had to go without a breast. When I woke up from surgery I had a breast and that helped emotionally. I would be feeling great now if I had not developed lymphedema in my new breast."
"Do not regret having the reconstruction. I don't know if this was the cause of the lymphedema or not. Have tried the elastic garment, wrapping, pump, and manual lymph drainage. I guess it's just something I've learned to accept and it really doesn't keep me from doing the things I want and need to do. Some days are better than others, and although the arm looks "different" it has never been painful."
"I believe firmly that reconstruction caused lymphedema as I had not noticed swelling prior to then. With lymphedema and now capsular contraction I wish I had not done the reconstruction!"
Summary. I think it is too early to draw many conclusions from this survey. We will get a better picture as we gather more stories and data. I am very pleased with the effort and time these women have put into answering the survey, but the numbers of women responding are still relatively small especially after breaking them down into the different types of reconstruction. Also, there may have been significant differences in the type and extent of mastectomy these women received and the number of lymph nodes that were removed with the mastectomy. I will add additional questions to the survey so these questions can be answered. I hope this is of some help to women considering the options they face in choosing whether or not to have reconstruction. Also, if you know of anyone who has had a breast reconstruction, please let them know about this survey so that we can continue to develop an extensive and reliable source of information on lymphedema. Everyone can contribute to our effort to improve the education of patients, therapists and physicians about lymphedema.
We know that even without reconstruction, lymphedema can occur in 10 to 25% of women with a mastectomy particularly if they also have radiation. It appears that among the women responding to this survey the relationship between reconstruction and lymphedema may be higher than expected; however, as several of the women pointed out, the lymphedema started a long time after the reconstruction and may have been related to other events such as infections or trauma. It is also clear that the women are divided about whether they would have had reconstruction done again. Some are very happy with the reconstruction despite having lymphedema. On the opposite side, some women would not undergo reconstruction again after suffering the complications and problems associated with reconstruction and lymphedema.