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Online International Breast Cancer Rehabilitation Summit Transcript of Interview with Carol Michaels

Online International Breast Cancer Rehabilitation Summit 2016

Interview with Carol Michaels and Denise Stewart

Denise : Welcome to the very first international online breast cancer rehabilitation summit. My name is Denise Stewart – I am your host from Brisbane Australia. Over the week you will be able to listen to speakers from across the world who have come together online, to share their insights and experiences with Breast cancer rehabilitation.Breast Cancer recovery is complex for many people and the process of rehabilitation is also complex.

Denise: Why should cancer survivors participate in an exercise program?

Carol: It is so important to participate in an exercise program. Exercise can improve the quality of life for cancer survivors. It is important to start exercising even during chemotherapy - as long as you have medical clearance from your physician. During chemotherapy, you may suffer from fatigue and exercise will give you more energy. Also research has shown that exercise can help the patient tolerate treatments. It is even more important to exercise after chemotherapy. It has been shown to improve range of motion, increase muscle mass, increase bone density, decrease depression and emotional issues. There are just so many reasons to exercise and I am so glad that I am here today to encourage people to have their patients start an exercise program.

It is important to understand the side effects of cancer surgery and treatment. For example, the surgery may leave the patient with terrible impairments. It can cause scar tissue. Scar tissue may be alleviated by a good stretching program -or as you know- a specialist in scar tissue. Sometimes cording might be an issue and you might have to refer out to a specialist. Radiation may cause tightening which can last over a year. And chemo may leave the patient with fatigue, balance issues, and neuropathy. All of these issues can be helped and sometimes prevented with a good exercise program.

Denise: Carol, as health professionals when we see the patient / breast cancer survivor and they say “ I just don’t think I can do it, I am just so tired and fatigued” what do you suggest they say to that patient.

Carol: Fatigue is such a common problem side effect for most cancer survivors. I always recommend to have an exercise buddy. This way when you feel too tired to go for a walk, if someone rings your bell and grabs you, it motivates you get out of the house. It is really helpful - exercise buddies are great. You can walk around the house or walk around the living room a few times. Just know that whatever you do- it is OK. You don't need to do a full 40 mins of exercise- you can do 2 minutes here, 10 minutes there - just listen to your body and your fatigue level.

Some people are motivated by keeping a journal. Some like to have specific goals. One of the most motivating ways to get yourself going is to actually join a cancer exercise class. This way you are exercising with people who might have the same limitations and the same issues. It is so motivating to work with others that are in the same place as you are. You can all work together to help each other and learn from each other. I have found that cancer exercise classes are a very helpful way to push through the fatigue.

Denise: Can you talk about exercise progression.

Carol: Before the patient begins, you have to get medical clearance. I always start off with relaxation breathing. Stress, depression,and anxiety are such common side effects that learning various breathing techniques can be very helpful. Also if the patient has or is at risk of lymphedema- since the deep lymphatics are in the abdominal area then deep relaxation breathing can hopefully provide pressure to the abdominal area and get the lymph flowing. So relaxation breathing is important.

After that, I always check for problems in range of motion. It is important to take shoulder measurements. I like for the patient to have girth measures (of arm) taken . Everyone at risk of lymphedema should be seen by a lymphedema therapist/ specialist- so we have a baseline - so we have something to compare to if there is any doubt about whether there is any swelling. After range of motion is achieved- and you see that your patient has almost full movement of the shoulder girdle - then you can start to add gentle strength training exercise. This becomes a very important part of the equation- because osteoporosis ( loss of bone density) is a very common problem with breast cancer patients. It really needs to be focused on and addressed. Sometimes women are put into early menopause , and their treatments can put them at increased risk of osteoporosis. Strength training exercises can help improve bone density. The muscles tugging on the bones during exercise can help bone density.

As soon as you get medical clearance, you can start adding an aerobic component which includes any exercise that gets the heart rate up. You can start with walking around the block or doing whatever you can do depending on your fatigue level.

Denise: Carol can you talk us through how the cancer surgery and other treatments that people are receiving can affect posture and balance. It might be something that health professional might not really understand.

Carol: Yes, breast cancer survivors are often left with various problems in posture. It really makes sense for someone to start participating in a posture exercise program because the chest muscles might be cut and muscles might be changed or are rearranged. The patient might typically protect the area that has had surgery - they may have a tendency to protect themselves by rounding their shoulders forward. So that is why it is so important to start strengthening the upper back, shoulder and some of the muscles affected by the surgery so that you don't get into that forward shoulder posture or kyphosis- or head forward posture.

On my initial meeting with the client, oftentimes the first thing I notice is that their posture has been affected. I do a posture assessment and usually their head is very far forward . The good news is that there are so many wonderful exercises that can improve posture. Posture issues really need to be addressed by health professionals. If you have bad posture it can affect the whole body. If the head is forward all day- the head is heavy it is about 10 pounds. - it leads to increased pressure on the neck and back causing neck and back issues. Cancer survivors do not need any other additional problems. Not only does the breast cancer survivor need to do the right posture exercises, it is important to go over ergonomics- how they are sitting at the desk, their activities during the day, and just to be mindful about their posture throughout the day.

Another area that needs to be addressed after cancer surgery and treatments is balance. Depending on the surgery and the treatments- balance can be affected . Some chemotherapy affects balance. Chemo can cause peripheral neuropathy, numbness of the feet and this can affect balance. If you can not feel your feet, that can throw you off your balance. So balance retraining should be part of the recovery process. I recommend that my clients start off with riding on a stationary bicycle as opposed to the treadmill because it is very easy to fall off a treadmill if you have peripheral neuropathy of the feet. So if you do use a treadmill- then hold onto the handrails. There are specific leg strengthening exercises that I like to recommend in order to deal with this issue. Sometimes when women choose not to have reconstructive surgery- their balance can change- they can be a little lopsided. Balance and posture are really important issues.

Denise: Which exercises are safe for lymphedema? There have been a lot of myths which over the years have been busted. What are your thoughts about that?

Carol: Years ago people who had lymphedema were told not to exercise - which is sad. It has been shown through a study that it not only is it safe to exercise - but it can decrease the chance of flare ups. Safe exercise would include swimming. Swimming is wonderful exercise for patients with lymphedema. The pressure in the pool is a natural compression to the affected area - the arm or wherever the risk of lymphedema may be.

The other thing that to remember is that you must progress in your strength training slowly and carefully. The cancer survivor might be used to using 10 pound weight for biceps curls for strength training exercise prior to the diagnosis. But if you have had lymph nodes removed you are at risk of lymphedema, and you really need to go back to your exercise program slowly and carefully. Start with 1-2 pounds, even if you were used to using 10 pounds, and be patient and progress slowly and gradually.

For those with lymphedema, I also highly recommend Pilates exercises. Pilates can be modified to be very gentle and breathing techniques are used where the navel is pressed gently towards the spine which hopefully will help to move lymphatics around.

Some modifications need to be made with Pilates and Yoga. You never want to have too much pressure on the arms if at risk for lymphedema-eg you would not want to stay in downward dog for too long- this could be a high risk exercise. So it is important to understand which exercises are safe and which could cause flare ups. You also want to work in the right conditions- the room should be the right temperature. Right now most Lymphedema therapists still feel that that if you have lymphedema, you should wear a sleeve during exercise. There is some discussion, that if you are risk of Lymphedema - whether you should wear a sleeve. It is important to note that if you have had a sentinel lymph node biopsy- with even 1 node removed- lymphedema is still something that can happen. Your risk is very very low but with lymph nodes missing, you need to take the proper precautions.

Denise: Can you please comment on the exercises that women should use after reconstruction- it is the same or different?

Carol: If you choose to have reconstruction surgery there are certain exercises that are helpful and some that are not safe according to the reconstruction surgery. If you have had lumpectomy or mastectomy without reconstruction and treatments, you really don't have to make tremendous changes to your exercise routine. But if you have had implant reconstruction - you want to eliminate the exercises that put too much pressure to the pectoral muscles. You wouldn't do several sets of military push ups - you would modify. I always start people off with wall pushups- because this way you can modify according to fitness level. You can start standing close to the wall (easy) or further away from the wall for greater intensity. So with implant reconstruction you need to make sure you go very slowly and carefully with the muscles that are involved in the chest area.

If you have had Tram flap surgery, where they tunnel muscle and tissue from the abdominal area to create a breast - that really needs to be addressed. Many hospitals now are not doing that surgery -but is was very popular and I have worked with many people who had Tram flap reconstruction. With Tram flap reconstruction on both sides , there is no normal use of the rectus abdominus - so you would not do abdominal crunches. Any type of abdominal exercises need to be modified. But what is really important to strengthen, are the obliques (on the side of the body.) The obliques are still there - so these muscles need to compensate for the lack of rectus abdominus. The remaining muscle groups need to be strengthened. So exercise to strengthen the obliques is crucial.

The other sets of muscles that require strengthening after Tram Flap reconstruction are the lower back muscles. If you think about your core and all the muscles of the spine- when you do not have the use of a muscle group, you are changing everything and that can set you up for lower back pain.You may end up using the lower back muscles more than what you would typically do otherwise. So strengthening the lower back muscles after tram flap is required.

When you have Lat Flap- where they take Latissimus Dorsi and create the breast from that muscle, you need to strengthen all the muscles in the upper back surrounding that muscle group. But you want to be very careful -there could be different imbalances in different muscle groups.

Denise: Carol you spoke about muscles missing like the abdominal muscle - with Tram Flap surgery. Are they missing or gone or missing in action?

Carol: Yes missing in action. With the old Tram Flap surgery- they are just tunneled under the body to create the breast mound. So they are just not where they are supposed to be and that changes things really in a big way. DIEP reconstruction involves micro surgery which allows the muscle to remain. This has been very helpful, especially for very active people who want to go back to their sports.

Denise: So gaining or regaining core stability is possible?

Carol; It is possible but after Tram Flap it will never be exactly the same as before because of the muscle placement. But you can still really get back to almost everything that you were doing prior to surgery especially if you participate in a really good exercise program that addresses these changes to the body after that type of surgery.

Denise: So it sound like there needs to be a one on one assessment for starters to work out what is going on and what is possible.Can you tell us what happens in New Jersey- how do women or men after breast cancer get into this type of assessment process and get help with an exercise program?

Carol: That is a really complicated question because every facility is different. I have worked in different cancer center, facilities, and hospitals and every place is set up differently. One situation which was wonderful, was at a hospital where we started a special program for cancer survivors. It was a fantastic program because it was a team approach. The oncologist worked together with the exercise specialist, with the LO specialist, and with the physical therapist. They referred the patient right into exercise and the results were fantastic. The patients came in before frozen shoulder developed, before they had Lymphedema flare ups, and before some of the potential side effects developed. The right exercise program is a great preventative measure. The participants were taught what to expect after having cancer surgery and treatment, and how best to deal with the potential issues. That was how one hospital operated, and it was very effective and the patients had wonderful outcomes. Other hospitals are set up differently. They may have a cancer exercise program which might be given only 1 day a week without the entire team approach. This is still wonderful to have for the patient, but nothing is better than a team approach. If the breast cancer survivor gets to work with an exercise specialist 3 times a week for an hour- the exercise specialist really gets to see what is going on both physically and emotionally with that person. I would write a monthly report to the oncologist to let them know what was happening with the patient - whether they had balance issues- whether they needed to be referred to a lymphedema therapist or a nutritionist. Weight gain is such a common side effect for most breast cancer survivors. So putting it all together with the team of specialists is such a wonderful way to improve the recovery process.

Denise: It is interesting then if we are coming across people after breast cancer surgery- they may or maynot have had that kind of service of exercise prescription.So as a health professional it would be reasonable to ask” have they been assessed? Or given an exercise program- because maybe they haven't.

Carol: The health professional may notice that the the patient has a limited range of motion and they may refer the patient to physical therapy. Unfortunately, can be for a very limited time. Physical therapy might takes place for several weeks. The breast cancer survivor might have problems( tightness) especially if they have had radiation, for a very long time. So if they can not continue an exercise program after their physical therapy is complete, they might just return to that impaired state. So in an ideal situation, a breast cancer survivor would go from a physical therapist to an exercise program so they can continue their progress.

Denise: So what you are suggesting is that where we come across people even years after- we can still ask the question” how is your exercise program going?” and help get them into an exercise program

Carol:Yes. I would like to mention that the exercise program has become such an important part of the recovery equation because so much research now suggests that exercise can decrease the chance of recurrence. There is nothing more important or powerful than that . So if we can get the patient to make lifestyle changes and embrace exercise and embrace nutrition-the chance of the cancer coming back may decrease. When I get that message out to my clients it is very motivating. I feel very fulfilled when I see them making lifestyle changes that they maintain forever.

Denise: Carol in the introduction we spoke about the partnership and development programs with others. I am wondering -if there were people as passionate as you in other parts of the world and they were thinking how are we going to do this? Can you talk us through how you did that?

Carol: Years ago, before there was confirming evidence that exercise is beneficial for cancer survivors, I worked with a wonderful oncology social worker to initiate a pilot program at a hospital. We met twice a week with the cancer patients and we kept records. We really did an informal research study - we did range of movement measures and strength assessments on everyone on day 1 and compared results at the end of the program. So as you can imagine, the results were excellent - we had patients who had 30 degrees of shoulder motion at the beginning of the program and 180 at the end which is full range of motion. They may have been only able to lift 1-2 pounds for a bicep curl at the beginning of the cancer exercise program, and at the end they were able to lift 5 pounds. There was improvement in each fitness category . We even asked the participants about emotional issues. Most people would come in with a degree of depression. Perhaps the friendships created in the group, in addition to the exercise, caused people to improve and feel better physically and emotionally. Having collected these excellent outcomes allowed us to get significant grants to continue the program. There is a lot of money out there - it is just knowing how to convey that these programs can be life changing for cancer patients, and once you have proof of excellent results - this helps in getting program support. Having a good grant writer is helpful as well.

Denise : Carol I am going to thank you for your information today. I am sure that it has been insightful for the listeners today.

For the listeners: If you have a question or would like to share a comment or feedback with Carol then then use the link on this web page. If you wish to share your experience or comments with others go the Breast Cancer Summit board at the link on this web page.

Please do visit Carol’s website and checkout her programs and join her contact list

Also be part of the move this week and help improve awareness of breast cancer rehabilitation – and send this video onto your colleagues who work with breast cancer survivors -so they can watch it during free access time.If you have more time- access the other presentation available today or if you would prefer to listen in your own time- you can purchase the summit presentations at the website.This summit is a fabulous opportunity to hear from international speakers and you have Carol Michaels today, who are experts in their fields of breast cancer rehabilitation and wellness. I hope you will be fascinated, inspired and challenged- so that we can continue to improve outcomes for the survivors of breast cancer across the world.

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