for the curious
and lovers of detail
BREAST CANCER RECOVERY
Why recovery takes longer than it should
Women are rarely referred to a specialist cancer rehabilitation provider during or after their breast cancer medical treatments. This is a common problem faced by women across the world. Barriers to receiving breast cancer rehabilitation have been identified in America (Cancer journal, April 2012), and the same barriers most likely exist in Australia.
They are as follows:
the medical practitoiners in cancer care have little to no previous experience with rehabilitation service providers
the medical practioners in cancer care are not aware of the literature or research in rehabilitation techniques and outcomes.
the medical practitioners in cancer care mostly think the impairments experienced following breast surgery and radiotherapy are expected and so "normal".
lymphoedema therapists may not be trained in breast cancer rehabilitation techniques.
there are too few therapists who specialize in breast cancer rehabilitation.
I highlight these findings so that you can understand why you most likely have not heard about treatments other than arm stretches or general exercise and lymphoedema care.
Queensland research (Hayes etal 2012) found 50% of women experienced at least one adverse impairment- 6 years after their surgery. The impairments studied were ones identified as being treatable, by physical rehabilitation specialists, eg reduced shoulder movement, pain, shoulder and hand weakness and others.
More recent Australian research ( 2015) has identified that most women after breast cancer surgery do receive arm exercise advice and that many women actually work on these exercises. BUT still there is a high rate of arm symptoms such as pain and weakness. For many women these symptoms do not resolve in the first 12 months and for some the symptoms have not resolved years after surgery.
Specialised breast cancer rehabilitation services are needed to improve this high rate of pain and impaired movement experience.
When is the best time to get treatment for arm or breast pain or weakness?
As soon as you can fit it in between your other cancer care appointments.
Especially before radiotherapy.
After radiotherapy if there has been high boost doses eg 6 weeks after you have completed radiotherapy.
Especially if you have had breast cancer treatment before a more recent episode.
How to get treatment for arm or breast pain or weakness?
Contact your breast cancer clinic to discuss their therapy support services.
If specialist rehabilitation services are not available and you live outside Brisbane area- contact Denise for an online appointment.
How do I know if I have cording?
Women can have problems with their physical recovery in the weeks, months and years after breast cancer surgery.
Cording is one of the more common problems that affects arm movement.
Cording, otherwise known as AWS (Axillary Web Syndrome) is a tight band of tissue that can form after breast cancer surgery. The tight band can extend from the chest to the upper arm and in some cases extend into the elbow or wrist or down below the ribs.
The tightness causes such intense pain in the early stage that it limits full arm movement.
Your doctor may have suggested arm stretches or referred you for physical therapy. If your pain or movement issues continue, you may feel uneasy or unsure about mentioning this to your cancer care doctor. Some women feel like they are complaining and so may never raise some of their issues regarding lack of full physical recovery.
If arm exercises are not enough, there are other treatments- low level laser, kinesiotape and specialized massage at the cord.
To help more women get the treatment they need for post- breast cancer cording, I have created a self assessment guide.
This guide will take you through simple steps so you can work out if you could have cording.
You will learn:
5 reasons why cording is not accurately assessed
5 myths of cording
2 simple and very effective tests
4 clear ways to describe your cording experience.
The aim will be for you to confidently ask for help once you think you could have cording.
Treatment (other than arm stretches) for cording is a relatively new therapy option and may not exist at your cancer care center. As with other new treatments and programs, it wont happen if the need is not made known. So by asking for help with persistent cording you may help yourself and also help women after you who have cording.
skilled in cording asessment then you could purchase an online review of your assessment results. Follow all the steps from the guide, provide photos (similar to those on page 17 or 23) and scan a copy of your written results (page 35). Purchase a review of your results from Denise and I will be able to assist in your diagnosis and provide general advice for your treatment strategy.
Cording Guide: $10 (Australian dollars + gst for Australian customers)
Opinion of your results: $20.00 (Australian dollars).
Book an online video appointment.
Check out the first 5 pages of the
Check out the first five pages of the
check out the first five pages
This project brought together breast cancer rehabilitation therapists globally to demonstrate treatments and timeframes used for individual cases of cording. There were case studies from Egypt, United States, Europe and of course Australia. It has started a shared dialogue and understanding for the best way to treat cording.
This project commenced in January 2014 and continues on today. The results thus far are eleven short videos found at the link below. A review of the cases until June 2016 was presented to the Asian Pacific Lymphology conference and will be shared to the Australian Oncology conference later in the year.
The findings in this review were that therapy for cording takes 30-45 mins and that most episodes of care range from 6-15 sessions over a period of 2 -8 weeks. Some cases received treatment for 15 weeks.
Therapy did not involve arm exercises (only) or lymphoedema massage- suggesting that referral to a lymphoedma clinic may not be applicable for these patients.
Contact Denise for a free copy of the poster: Axillary Cording : A review of case studies.
This project will continue to bring together experienced therapists from around the world, to provide the latest examples of treatment for this post- breast cancer complication.
Referral of women to breast cancer rehabilitation services for the treatment of cording is very low for a variety of reasons. Two most commonly used reasons are that cording is thought to be"normal" after surgery and will go away in 3 months and secondly that arm stretches are the only treatment needed by women after breast cancer.
Therapists treating problematic cording do not agree with these views.
This online project will continue to increase awareness of new rehabilitation services/ treatments and the value of these for women in their recovery after breast cancer.
Clinics or health professionals wanting to develop service delivery for Cording can contact Denise for a free digital copy of the poster: Axillary Cording : A review of case studies.
See Video of
Case 1 from Australia
Do you want to know more?
Join in the monthly online workshop for people who have had a mastectomy.
Cost: $20 ( Aus)
At the online workshop:
Assess your scar.
Identify the main problems for you.
See how a special “practice” can test and improve your arm movement if there are restrictions.
See the types of massage techniques developed by expert therapists across the world.
How to find a therapist to help with problematic scar tissue
Each workshop will have a maximum of 25 people.
The following is general information and must not be used to guide individual medical / health management. Take your concerns to your own health care professionals to have personalized assessment and treatment.
The amazing thing is that most people think that there is only one scar after mastectomy-the scar you see across the chest.
However this is not correct. There are nine (9) different types of scar tissue that can potentially arise following mastectomy.
Knowing the types of scar tissue and the location of the scar tissue after a mastectomy may help to plan better non-surgical treatments to reduce scar tissue tightness.
Scar tissue explains why women (and men) report feeling:
tightness across their chest weeks, months and years later;
pain at the shoulder blade;
a pulling tight band into the armpit or arm;
difficulty in raising the arm easily;
heavy arm, when lymphoedema is not present and
why arm stretches do not work best in recovery.
What is scar tissue?
Scar tissue forms as a normal healing response. Most people have usually had some type of scar form on their body, usually as a result of a simple injury such as gravel rash on the knee after falling on rough ground can result in scar tissue at the skin level. For netball players, deeper scar tissue can form at the ankle after an awkward fall where swelling and pain occurs.
Adhesions is another word used to describe the scar tissue that forms between tissues well under the skin. Adhesions can occur where the surgeon removes or dissects deeper tissues such as breast cancer tissue and lymph nodes. In this webpage I will use scar tissue or scar to cover adhesions.
Scar tissue can be active or not active. Active scar tissue is usually painful to touch (eg hugs and cuddles) connects to other tissues and is not stretchy like other tissues.
Scar tissue can be a lot or a little. There is a variance between people when it comes to how much scar tissue forms during healing. Some people have far too much scar tissue form during the healing phase. This experience is more common in some cultures (eg African American women).
Infections and diabetes will also affect how much scar tissue forms.
It is really difficult to assess and treat your own scar tissue because your sensation is not what it is at your other body parts.
Make an appointment either in office or online.
MORE ABOUT MASTECTOMY
For the curious: Take 15mins and download and complete the three documents below.
You get to rate your level of pain, performance and the mastectomy scar compared to your previous "normal".
The Breast Q is, in my opinion, one of the best tests to record and measure the impact of surgery chemo and radiotherapy. This test is licenced to my practice and will be available for you to use once you have booked in for your appointment.
Your results can be used during an appointment with Denise as a quick way of sharing great information.
MORE ABOUT LUMPECTOMY
Lumpectomy can result in scar tissue forming after surgery deep within the breast aswell as the scar line at the skin.
Scar tissue can become a problem when there is:
larger areas of tissue are removed
there is delayed healing due to other illnesses such as diabetes or seroma.
If you experience pain when the breast is pressed (hugs, cuddles or even bras) then this is usually because of active scar tissue in the deeper areas.
This deeper scar tissue may not get stretched during arm exercises. Active painful scar tissue can also be one of the reasons behind weakness in the arm (on the same side). In some cases scar tissue can change the way the arm bone and the shoulder blade work together. Another good reason for scar tissue treatment.
This tissue can be treated with special massage techniques. These techniques can be taught to you or your partner- as scar tissue does need to be treated in this way over a long period of time.
You will know when this time is up- pressing into the scar area will no longer cause pain.
When is the best time to get treatment for problematic scar tissue?
Preferably before radiotherapy.
As soon as you can fit it into your cancer care schedule.
Best during the first 2 years after surgery.
Doctors usually advise that the effects of radiotherapy such as the skin redness and possible skin breakdown should heal in time eg 4-6 weeks. The less common side effects are fatigue and radiotherapy fibrosis- both which may last a little longer. Recent studies indicate that fatigue is better managed with reasonable intensity exercise and in one study acupressure of the feet.
Radiation fibrosis can affect the skin, the muscles and remaining breast tissue in the area that was irradiated.
In the case of breast cancer- this may be at the chest/breast area, the lower side of the neck and even at the back of the shoulder blade. People will notice thickening and hardening of the body tissues - theses are known to last for many years in some people. The other variable that increases the severity of radiation fibrosis is higher doses of radiation. As treatment dose varies between people - so does the radiation fibrosis.
It is my experience that people, who undertake a usual course of radiation, can have recurring tightness in their chest, over the years. In most cases they will respond positively to stretches and gentle specific massage to the tissues.
I believe that deeper and faster sports type massage may not be suitable to manage radiation fibrosis.
Before radiotherapy commences-make an appointment to have your breast cancer surgical scar tissue treated.
At least 4 weeks after completing radiotherapy - make an appointment to get an assessment of your skin and muscles.
If it is years after your radiotherapy and the area is tight- you will still benefit from an assessment with Denise.
You will be able to determine if your body will respond positively at this appointment and a treatment plan will be recommended.
TRAINING FOR THERAPISTS
Online training for Breast Cancer Rehabilitation
This information will enable health professionals to personalize and evaluate rehabilitation treatments through a variety of impairment and disability assessments.
Breast Cancer : Physical impairment assessment
Learn what physical issues are faced by women after breast cancer.
You will receive online access to:
67 pages of research reviews, assessment guides and clinical opinions
Videos to emphasis important learning and skill development
A slide program with real cases to develop your visual inspection skills
Access to a learning project evaluation
Your online reading material:
Section 1: Disability, pain and movement disorders experienced by women after breast cancer
Section 2: Impairments after breast cancer
Section 3: Measures that can be used in the clinic.
Review the research
Understand the difference between disability measures and underlying impairments
Learn five clinical tests and see how these are better at impairment detection than standard ROM measures.
Access 2 pain measures and 1 shoulder specifc standardized assessment.
Engage in a learning project, have your work filmed, submit this online for feedback.
Access training videos, photographic examples and extensive reading material.
You will be required to complete the online module training agreement before you receive access to the resources: http://goo.gl/forms/G7k6EjWch6
Mastectomy: Testing scar tissue severity and other post surgical impairments.
You will receive online access to:
75 pages of research review, assessment guides and clinical opinions
Videos to emphasize important learning and skill development
Two slide programs with real cases to develop and test your assessment skills
Access to two learning projects and evaluation
The 75 page workbook covers:
Section 1: Dysfunction linked to mastectomy
Section 2: Mastectomy scar tissue types
Section 3: Assessments for mastectomy scar tissues
Section 4: Assessment of other impairments following mastectomy
Section 5: Comparing mastectomy scar tissue findings to standardized tests
In this online training process you will:
Review the relevant research.
Understand the difference between disability measures and underlying impairments.
Know the difference between the linear scar and the chest wall scar.
Learn mastectomy scar feature testing methods.
Access standardized tests that can be compared to your clinical palpation tests.
Engage in a learning project, have your work filmed, submit this online for evaluation feedback.
Access training videos, photographic examples and extensive reading material.
You will be required to complete the online module training agreement before you receive access to the resources:
Small group workshops
One day or two day courses can be arranged to meet your group's training needs.
Workshops currently offerring:
Pain, Posture, Performance and Palpation for Occupational Therapists ( 2 days)
AWS/ cording and mastectomy scar assessment (3 hours- 1-2 days). For Occupational therapists, Physiotherapists and registered massage therapists, oncology massage therapists.
MARCH 2017: Adelaide BOOK NOW
Personalised professional development
Engage in personalized training in breast cancer rehabilitation assessment and treatment techniques. Training can be online or in person (Brisbane).
Digital Accesss to Conference Posters
Contact Denise for free access to:
Case Studies Describing Axillary Web Syndrome: Case study review May 2016
Mastectomy Scar Assessment: A review of POSAS Observer Scale May 2016
Purchase the AWS/ Cording Assessment poster (digital): A stand alone resource describing the methods used for Arm to Ear Test and Reach-Out-The-Back Test.
Online Breast Cancer Recovery Program
Hear about how to manage side effects that persist after breast cancer.
International specialists from many health and wellness backgrounds have come together to provide you with the research, their opinions and their solutions for recovery and better health after breast cancer.
You can access the program via the
Australian Aboriginal logo at this page