My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Lymphedema: 2 Years Later And Still Not Over It

Last year I wrote a very popular post, Lymphedema And How It Changed My Life.  It went viral…well, as viral as a lymphedema post was going to get.  It resonated with a lot of people.  I wrote about how angry I was at getting lymphedema after being diagnosed  with breast cancer and going through hell to get it out of my body.  I wrote about how uncomfortable it made me feel in my own skin; how ugly I found myself.  I wrote about how its very presence was a daily reminder of my cancer and the fact that it could always come back to my life in a terminal form.  I wrote about how sometimes I thought I would rather not live at all than live with lymphedema for the rest of my life.

I want to say that a year later all is well.  I want to say that a year later I’ve come to terms with this condition and the fact that it’s never going away.  I want to say that it no longer reminds me of the cancer that is in my blood stream right now, hiding, sneaking in and out of my organs.  I want to say that a year later, it’s under control.  But I can’t say these things.  I just can’t.

It’s a year later and I’m still pissed off.  I’m pissed that I have to take time out of my week, twice a week to keep my lymphedema under control.  I love my OTs at Shechter Care with all my heart and they are amazing, but even they are hoping that soon they can get me to the point where I don’t have to come so often.  I’m pissed off that I have to take time out of my day, nearly every day to pump my arm.  I’m pissed off that I have to go to sleep every night with my arm wrapped.  I’m pissed that I have to roll my wraps every night.  I’m pissed that when I look in the mirror, one of the only things I see is my big arm.  Nothing else.  I’m still pissed off that this was done to me.  I’m still pissed off that I didn’t get the care I needed at a time when this could have been kept under control.  I’m pissed that I don’t feel beautiful.

I’M PISSED!!!!!!

There are some positives.  This year I learned to wrap my bandages myself.  While I hate doing it, it gives me a sense of control.  I’ve been able to get swelling under control that way.  I believe that with hard work the swelling will decrease.  It already has.  It’s just take a super long time on me for some reason.

I also think that there are a lot of advances happening within the medical field.  More and more doctors are starting to understand this condition and are acknowledging that it’s a terrible condition to live with.  There are more studies and trials happening.  They are perfecting the lymph node transfer and other surgeries (although I don’t feel confident enough in the science to do it myself yet).  There is hope on the horizon.  I truly believe that there will be some real help for men and women like me in my lifetime.  Maybe not a cure but something that will make living with this condition so much easier.

I struggle every day knowing that I have to live with lymphedema the rest of my life.  I get depressed often.  But at the same time, I have hope.  I have hope that science will make advances.  I have hope that my body will finally cooperate and that there will be a turning point in my care.  I have hope that I will get this under control.

Maybe not today.  Maybe not tomorrow.  But maybe next year, on March 6, World Lymphedema Day, I’ll be writing a different blog post.  Maybe I’ll write about how I don’t hide myself.  Maybe I’ll write that I don’t think about my arm and cancer all day long.  Maybe I’ll write about how I feel like I can live my life confidently again.  Maybe, just maybe, I’ll be able to write about a major medical breakthrough.

One year…I can do one more year.


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Spring Coats For Women With Breast Caner Related Lymphedema

Lymphedema awareness month is coming to a close just as the weather is finally warming up here in NYC.  The trees are starting to bloom and the birds are chirping their springtime song.  I’m starting to transition my closet from chunky sweaters to lightweight frocks.  Last week, I was wearing my spring coat since it was a warmish day.  It was a day that I had to go to the PT to get my lymphatic massage and have my arm bandaged.  I always hate having my arm bandaged because I leave with my clothes feeling tighter and ill fitted.  I don’t have as much range of motion and I can’t go about life normally.  But it’s only for a few hours a week and I can handle that.  But this time, in my spring coat, I was feeling extra stuffed in.  I could barely bend my arm.  Anyway, as I was maneuvering to get my bandaged arm in my coat, I heard a rip.  The shoulder had ripped from the seam.

Fan-fucking-tastic!

It became apparent that this coat will no longer work for me and neither would any of the spring weight coats I owned.  I asked one of the PTs what women do when they need to get wrapped but need a coat and she said that they just wear oversized clothes.

Well…no thank you!!!!  I have suffered enough and I am not going to wear some oversized shmata just because I have lymphedema.  And so, my quest for a coat that would fit over my bandages began.  It wasn’t easy.  I eventually found a coat I loved but the pickings were slim.  But I wanted to share what I found with all of you so you won’t have to search as hard as me.  Let me know if you get any of my recommendations or if you have found something else that you love.

coat 1

Waven Imma Clean Denim Kimono Jacket.  asos.com

coat 2

Noisy Mae Denim Kimono Jacket. asos.com

coat 3

North Channel Jacket. anthropologie.com

coat 1

Cropped Swing Trench. I bought this coat but it didn’t work for my body. But the material loose and stretchy and it fit nicely over my bandages. anthropologie.com

coat 1

Vegan Suede Kimono. anthropologie.com

coat 1

Trench Cape. jcrew.com

coat 1

Deconstructed Trench Coat. cosstores.com

coat 1

Grosgrain Detailed Parka. cosstores.com

coat 1

Eileen Fisher Silk and Cotton Knit Long Sleeve Kimono Coat. nordstrom.com

coat 1

Drippy Linen Jacket. freepeople.com

coat 1

Josie Natori Jacquard Wide-Sleeve Coat. saksoff5th.com

coat 1

Reversible Dot Inverted Pleat Dot Techno Jacket. saksfifthavenue.com

coat 1

Taffeta Trenchcoat. saksfifthavenue.com

coat 1

I’ll get this coat when I win the lottery. Name Khan Embroidered Silk 3/4 Sleeve Coat. bergdorfgoodman.com

 

coat 1

I’m going to buy this raincoat! Like, tomorrow!!! zara.com

coat 1

This is the coat I ended up with. The color is gorgeous and it’s a great weight for these cool spring days. zara.com

 


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Bits Of Happiness #24

I can’t believe the overwhelming response I have gotten to my last two posts about lymphedema.  Last night, I saw my post come up on Facebook as a “related link” and it said that it had been shared 754 times!!!!  And by tonight, close to 1000!!!!!  These posts, by far, have been the most read and commented on my blog.

This makes me thrilled because it helps me feel less alone.  Lymphedema can be so isolating; sometimes I feel like I am the only one to be going through such a horrific disease, even though I know I’m not.  Seeing all of the views, shares, comments and likes have made me feel less alone.  And I’m letting you all know about this because I hope it helps you feel the same way.  We are definitely not alone in this.

I encourage all of you to continue sharing your stories.  The more we share, the more we raise awareness about lymphedema.

Thank you all, a million times over.

IMG_5172

My blog post, right over Kathy Bates!!! Hi, Kathy!!!!!


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Everything You Wanted To Know About Lymphedema But Were Afraid To Ask: An Interview With Cynthia Shechter, Breast Cancer and Lymphedema Rehabilitation Specialist

Wow!!!!  I am humbled by the overwhelming response I received in response to yesterday’s post, Lymphedema and How It Has Changed My Life.  So many of you have shared your experience with lymphedema, whether you got it as a result of breast cancer treatment, another surgery or trauma or as a hereditary condition.  This has made me believe, even more strongly than before that we need more research, education and awareness for this disease.  What an incredible community we are creating when we share our experience.

Today, March 6, is officially World Lymphedema Day, which makes me even more thrilled to introduce to you, Cynthia Shechter of Schechter Care.  Cynthia is an OT specializing in breast cancer and lymphedema rehabilitation.  She is not only the OT that has helped me manage what I thought was a condition that would only get worse with time and could not be helped, she has become a dear friend.  She is also a fierce advocate for the disease.  

If you have any additional questions for Cynthia, I hope you will leave it in the comments section or feel free to email me (see my contact information above) if you would like your question to remain private.  And continue to share your experiences.  Knowledge is power.  

It is my honor and pleasure to introduce Cynthia to you all.

cynthia

Photo of Cynthia Shechter, taken from shechtercare.com

 

What is your full name and what do you do? Cynthia J. Shechter and I am an occupational therapist specializing in Breast Cancer and Lymphedema Rehabilitation

What is your training and are you licensed? ? I received my bachelors degree in clinical sociology from Ithaca College, my Masters In Occupational Therapy from NYU and have trained and been certified by The Klose School for lymphatic education. http://klosetraining.com. I also trained with the Academy of Lymphatic Studies and with Linda Miller, a true mentor in the field. I am licensed to practice in New York and New Jersey.

How long have you been practicing? I have been an OT for 14 years and have specialized in this field for over 10.

There are so many specialties of physical therapy. I am an OT, not a PT, although the lines definitely blur, with this particular specialty Why did you choose lymphedema and breast cancer as your area of focus? It was really by chance. I thought that I wanted to be a hand therapist and while working in hands I identified that I could help my patients more effectively if I could better control their swelling. Since lymphatic drainage is only touched on in graduate school, I decided to go get trained so that I could help improve orthopedic surgical outcomes by getting rid of swelling rapidly, increasing range of motion and functional hand use. In my first few training courses I learned a lot about lymphedema, breast cancer, treatment, etc. I extended my clinical focus to include breast cancer and lymphedema, and found my true passion in doing so. I realized that I could do so much more for this underserved population of patients by advocating for them, helping them through the healthcare maze, using my psychosocial training, and by thinking outside the box in terms of treatment. The more I treated breast cancer and lymphedema, the less I wanted to treat hands, and here I am today, evolved into the therapist I always hoped to be.

Is everyone who gets a mastectomy or lumpectomy at risk for getting lymphedema? Unfortunately, yes.

How long does it take to get lymphedema after a mastectomy? Researchers say that lymphedema typically occurs in the first 2 years post op, but the risk is lifelong. I have many patients whose swelling didn’t begin for 20 years post.

When it comes to breast cancer, is lymphedema a woman’s issue or can it happen to men as well? Lymphedema does not sexually discriminate, anyone can get it regardless of gender.

What signs should women who have had a mastectomy look for to detect lymphedema? Lymphedema can be subtle at first, and I believe strongly that EVERYONE who has had surgery for breast cancer should receive rehabilitation, even if only or a short period of time. Here are some what to look for from the ACS:

Signs and symptoms of lymphedema can include:

Swelling in the breast, chest, shoulder, arm, or hand

Part of your body feeling full or heavy

Skin changing texture, feeling tight or hard, or looking red

New aching, tingling, or other discomfort in the area

Less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist

Trouble fitting your arm into jacket or shirt sleeves

Your bra not fitting as well as it used to

Your ring, watch, and/or bracelet feeling tight, and you haven’t gained weight

Early on, the skin usually stays soft, and raising your affected arm might relieve the swelling. But over time, the swollen area may become hot and red and the skin hard and stiff.

If you’ve had any type of breast surgery, lymph nodes removed, or radiation treatment, look at your upper body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color. Get to know your body and what’s normal for you. This way you can spot changes and get treatment right away.”

How is lymphedema typically treated? Lymphedema is traditionally treated with Complete Decongestive Therapy, CDT.This link from breast anger.org gives a good description of each component of CDT http://www.breastcancer.org/treatment/lymphedema/treatments/cdt

You tend to “bend the rules” when it comes to standard care of lymphedema. Can you speak to your philosophy of lymphedema care? My overall philosophy is to assist patients in living WITH lymphedema, not FOR it. it Is important for a clinician to listen to what each individual says regarding their care and tolerance of bandages, including time spent wrapping and being wrapped. Nothing in this world is black and white, we all exist in the gray areas, lymphedema is no exception. I think that it is important to treat patients as people, not as a condition. Although CDT is a proven treatment, I think it is so important to modify recommendations to work with a patients lifestyle, and, not everyone responds to traditional therapy well. I believe that it is important to use my training as a guide, but not as a definite set of rules. This helps me respond to the progress each patient is making. I modify my manual therapy, by changing the amount of pressure that I use on the tissue, which helps decrease the amount of tissue fibrosis that individuals have. I change whether or not I use a compression pump, foam for bandaging, sleeves are often not tolerated, and bandaging techniques can vary. When treatment is not modified, patients are often nervous, depressed, and angry about their condition. I find that my patients are more in control of their condition, and less afraid to live their lives.

Is lymphedema reversible? Please explain. If swelling is identified early, it can be reversed.

What is your opinion of how doctors are educated about lymphedema? Unfortunately, doctors do not receive much training about the lymphatic system in general and although there is a lot more awareness of the condition, patients are just not educated early.

How can doctors better educate their patients about the risks of lymphedema?  Doctors should refer their patients to a clinical specialist in rehabilitation after breast cancer surgery. I think doctors have to understand that lymphedema – this is an unfortunate side effect that will affect some of their patients. That early intervention is important, that prevention is possible; that it is insane to tell someone that they cannot lift more than five or ten pounds forever, that all patients who undergo total hip replacement or rotator cuff surgery receive rehabilitation therapy without a second thought, and breast cancer surgery should follow the same protocol. That we all deserve a chance to move freely and pain free after mastectomy; that we can work to decrease a patients risk of developing lymphedema; that rehabilitation therapists are an integral part of recovery from breast cancer.

Can lymphedema be dangerous? Yes. The lymphatics are responsible for filtering out impurities in the body. When they are not functioning properly, patients are at risk for developing cellulitis, lymphangitis and other serious systemic infections.

What are the physical and psychological effects of lymphedema? I treat my patients based on their lifestyles, activities, needs, and a realistic plan for them to be able to manage their swelling once discharged from active treatment. When patients come to me, they tend to feel helpless with the condition. Lymphedema can be unpredictable, and can flare up at times you would never expect. Also, especially for those individuals with leg swelling, this condition can and does limit basic things that we all take for granted, like what pants we wear, or what shoes we wear to the office. Depending on the severity of ones swelling, and despite use of compression garments, swelling can worsen simple because an individual is standing or sitting for too long. Patients with lymphedema may experience pain caused by the swelling and pressure on nerves, loss of muscle tone and function, range of motion limitations, and/or scar tissue formation. It is important to note, however, that not all individuals with lymphedema have pain. Each patient is treated like an individual. Once a patient is evaluated, I continue to re-assess visit to visit to ensure that what I am doing is actually helping. There are times where I use a vaso-pneumatic pump, teach self bandaging, compression garment use, self massage, brushing, etc. I think the most important thing for me to do as a clinician is LISTEN to my patients’ feedback and modify what I do so that I can help them more affectively. Effective lymphedema treatment is dependent on the patient/clinician relationship. Here is an article written about the overwhelming affects of lymphedema on psychosocial health and lymphedema.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153404/  I’m not a a mental health practitioner, but often I find that my patients are more distraught about their lymphedema than they are about having had a mastectomy or even breast cancer. I believe that this I correlated to the fact that they are educated about their breast cancer, they were educated about their reconstructive surgery and made an educated decision regarding their treatment and surgical plan. Unfortunately, especially with the finite set of rules and lack of flexibility in the way lymphedema is treated, this is the one area that patients truly have no sense of control. It is overwhelming. What I hope is that in changing the way that lymphedema is treated, I can give people back their sense of control, and help them find options and a management regimen that will work within their lifestyle. Patients with lymphedema tell me that this insidious disease is a constant reminder of their cancer, and affects self esteem in ways that no one could imagine. Lymphedema and the rules associated with the diagnosis of lymphedema can create an incredible fear to go on with life, lift your children, climb a mountain, run a marathon, or simply carry your groceries.

If you could give women one piece of advice about lymphedema, what would it be? Don’t give up on managing your lymphedema. Find a therapist who can listen to you and respond to your individual needs.

If you could give doctors one piece of advice about lymphedema, what would it be? Go for therapy post operatively to help prevent it and if you have swelling already, please don’t be defeated by this insidious condition. It’s a matter of finding the right care for you.

What should a woman/man do if she suspects she might have lymphedema? Find a therapist and begin therapy early.

If a woman does not live in an area where there are many resources for dealing with lymphedema, like here in NYC, what should she do? Go to the national lymphedema network website to find care.

What is the future of lymphedema treatment? I don’t know, but I am excited to find out!

You can contact Shechter Care directly at

shechtercare.com

18 E 48th St. ste. #801

New York, New York 10017

212-421-1969