N E W Y O R K -- The management of breast cancer has improved significantly in recent years. Cancer is being found in earlier, more treatable stages and there are more treatment options for women to choose from. Where once it was shrouded in silence, the topic of breast cancer is now discussed openly and without shame.
But even successful breast cancer surgery can be followed by aftereffects. Frozen shoulder, back problems and lymphedema are all common problems for breast cancer survivors, and can seriously compromise quality of life.
Medical exercise specialist and breast cancer survivor Annie Toglia believes that more must be done to prevent such problems. Previous to her diagnosis, Toglia worked as a trainer, specializing in sports medicine and designing individualized strength and conditioning programs for athletes. After undergoing treatment for her breast cancer, she created a different kind of conditioning program, this time for herself.
Together with her physician and medical team, she created a comprehensive exercise program that addressed the rehabilitative needs of breast cancer survivors, which culminated in her book, Staying Abreast: Rehabilitation Exercises for Breast Cancer Surgery.
Below she talks about common problems facing women after breast cancer treatment, and why it is so critical to get up and get moving after breast cancer surgery.
What led you to specialize in breast cancer rehabilitation? I was diagnosed with breast cancer in April 1996. In the years that followed, I underwent a number of treatments and procedures — mastectomy, reconstruction, chemotherapy, radiation, stem cell transplant — so I've been down a very long road.
Were you surprised by how hard it was to recover from the various treatments? I went into the first surgery very strong because I was a trainer, and I was surprised to find how difficult it was to recover. It was then I learned how ill-informed and unsupported many women are in their physical recovery, and I became interested in addressing these problems, using my skill as a trainer and dancer.
What sort of recovery support or advice is traditionally offered to women following treatment for breast cancer? I would say that even now, there are not very many options offered. It usually requires a very savvy team of medical experts to actually think about the physical recovery plan in advance. In some hospitals an occupational therapist or a physical therapist may visit a patient in a hospital right after their surgery and show them one or two exercises. There are not very many comprehensive programs.
Can you describe some of the common problems that women face following various surgeries for breast cancer? Frozen shoulder is very common. The connective tissue in the shoulder area actually becomes so tight that you lose the range of the motion in your arm. It becomes difficult even to lift your arm. A lot of people mistake frozen shoulder for a natural weakness in the arm and shoulder that follows surgery. What they're not aware of is that that weakness is starting to occur not only from the trauma of the surgery, but because of the immediate and rapid development of scar tissue after the incisions are made. A lot of the tightness and pain is the result of scar tissue.
Another common aftereffect of surgery — be it a lumpectomy or mastectomy —; is back pain. Your tendency after surgery is to slump over. Everyone seems to protect themselves by slumping over, holding their arm close to their body and being afraid to move, which can lead to back pain.
Also, many people are now opting for TRAM flap reconstructive surgery. This uses tissue from the abdomen for the breast reconstruction. So there is a tummy tuck involved. Those muscles in the abdomen are shortened, and it can be difficult to stand up straight. This too can lead to slumping over, and back problems.
What is lymphedema? Why does it often occur after breast cancer surgery? Lymph nodes act as a filtration system for fluids in the body. A sampling of lymph nodes is often removed from under the arm in order to biopsy them and see if the breast cancer has spread anywhere into the bloodstream. That removal of nodes immediately sets you up for lymphedema, because you've removed some of those draining pathways.
It's like closing off a group of roads at an intersection. The fluids, or traffic, cannot flow through properly, so they accumulate in an area. Any sort of trauma, be it a bug bite or surgery, can result in swelling of the hand or arm. It can also occur spontaneously. It can occur 30 years after surgery.
My doctor made me very aware of the condition. He recommended that I not carry a shoulder bag and that I should keep that arm moving and keep it elevated after the surgery as much as possible. But many women are not aware of the risk of lymphedema, and not clear about what to do if it happens.
Can you describe the components of a good exercise program following surgery for breast cancer? It starts a couple days after surgery, with just some easy movement. A post-surgical program starts with very gentle exercises for the first six weeks or so. A lot of the initial exercises are meant to relieve pain and prevent scar tissue from forming. All the movements and exercises incorporate an attention to breathing, so that you can relieve pain. Posture and breath are the most important elements of this first stage in recovery.
I think it's essential that exercises incorporate flexibility, breathing and mild strengthening. The second phase is the strengthening phase. As the phases go on, you can add more exercises that address more parts of the body. Multi-joint exercises, always with attention to breathing and posture are most useful, so that you're not just lifting your arm up and down. I really can't overstate the importance of posture. If posture doesn't develop and improve, nothing else will.
How do you address the energy loss that accompanies surgery and any follow-up adjuvant therapies? It's important to focus on endurance and preventing the decrease in stamina. Not only increasing it, but preventing it from diminishing in the first place. If you can get yourself out of bed and walk around your house or your hospital room for one minute, if that's all you have the strength to do, that is going to help you in increments and cumulatively. Get out of bed and walk a few times a day. If you can get outside and take a breath of fresh air a couple of minutes day, stand in the light, breathe in the air, you'll have an endorphin release, which also helps to prevent depression and stress.
How long does it take to see results? Some people experience benefits immediately. I did. I experienced the exercise benefit fairly quickly, because I developed a frozen shoulder very quickly. So getting started, and getting moving early really helped me. But my feeling is that the recovery process, and the attention to movement and physical strengthening after breast cancer treatment should last a lifetime.
What do you suggest to women whose doctors or medical teams are not addressing the question of post-treatment recovery? Often it requires that women be proactive about this kind of care, and ask a lot of questions of the experts at hand — Where can I find a program that will address my needs? How can I avoid the aftereffects of treatment? Who can help me with these questions if you cannot?
In light of what you've been through with treatment and recovery, what is the one thing you'd like to see change in the medical community's approach to post-breast cancer treatment? The medical community needs to be more aware of the problems that can follow treatment and institute programs that address these problems. They need not be expensive programs. The tools and equipment required can be as simple as balls and yardsticks.
I would like to see every single person who has surgery or chemotherapy have a consultation and an evaluation by a physical or occupational therapist trained in the particular needs of these women, and capable of making recommendations for their particular situation.
I remember a woman saying to me, "All they told me to do was walk my fingers up the wall." Well, recovery from breast cancer requires far more focus and attention than walking your fingers up the wall. It's essential that medical communities start developing programs that will encourage physical strength and recovery post-treatment.