Cancer Survivors: Check Your Heart

If you are a Cancer Survivor and have endured chemotherapy, it is imperative you pay attention to your heart!!  As a Cancer Survivor who had a heart attack during chemotherapy and permanent heart valve damage due to Herceptin, a breast cancer drug, it is a passion of mine to warn other cancer patients/survivors about heart issues.

Many major cancer hospitals now have a Onco Cardiologist on staff – a Cardiologist who only sees cancer patients and survivors to deal with their heart issues due to strong chemotherapy drugs.  My sister, a breast cancer survivor who completed chemotherapy 18 months ago, recently saw this type of specialist because ever since chemotherapy she has Tachycardia which is a fast heart rate of anywhere from 100 to 120 beats per minute.  My sister’s heart rate prior to chemo was in the 70s.  Adriamycin Cytoxan Chemo is known to cause Tachycardia.  I also had Tachycardia post chemo and have been on medication for 4 years.

HeartI accompanied my sister  to this appointment to support her and because I wanted to know more about this field of cardiology.  Her Onco Cardiologist said because so many cancer survivors are living longer lives, the heart is now a major issue.  Many cancer survivors have no idea they have heart issues or are at such high risk.

According to M. D. Anderson, the #1 Cancer Center in the United States, Cardiovascular disease (CVD) is the leading cause of morbidity and mortality in cancer survivors, which in 2016 included 15.5 million Americans. In fact, the risk of CVD in cancer survivors is 8 times higher than in the general population. There is evidence of heart and blood vessel damage in 50% of cancer survivors 5 years after chemotherapy.

From my experience and my sister’s experience, I think every cancer survivor who had chemotherapy should be checked by a Cardiologist!  Please, have a heart checkup!

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Ten Years of Hormone Therapy Reduces Breast Cancer Recurrence

My Oncologist, Dr. Daniel Hayes, M.D. is the President of American Society of Clinical Oncology (ASCO) comprising 40,000 oncology professionals who care for people diagnosed with and living with cancer.  It is quite an amazing honor for him and his patients!  ASCO (and every cancer patient around the world) is so fortunate to have him as their President!   Because of my confidence and trust in Dr. Hayes, I have been paying close attention to press releases coming from ASCO about breast cancer care.

The following study was released in June, 2016 about Aromatase Inhibitors and increasing taking them for ER Positive Breast Cancers from 5 years to 10 years to help prevent recurrences. On my last oncology visit, Dr. Hayes warned me to be prepared to take an Aromatase Inhibitor drug for 10 years and also told my sister, Diann, to be prepared to do the same.

Please read the study and MAKE SURE to discuss this with your Oncologist.  If you are pre-menopausal and on Tamoxifen, also talk to your Oncologist about this!

“These data are important to the millions of women around the world with ER positive breast cancer, and suggest that longer durations of widely-available therapy reduce the risk of cancer recurrence, and prevent second cancers from arising,” said Harold J. Burstein, MD, FASCO, ASCO expert in breast cancer. “Ten years of any therapy is a long time. Fortunately, most women tolerate extended treatment reasonably well, with few side effects. Now, women can talk with their clinical team and make informed decisions to extend adjuvant endocrine therapy, or not.”

CHICAGO – A randomized phase III clinical trial, MA.17R found that postmenopausal women with early breast cancer benefit from extending aromatase inhibitor (AI) therapy with letrozole (Femara) from 5 to 10 years. Following five years of an AI and any duration of prior tamoxifen, women who received letrozole for five additional years had a 34% lower risk of recurrence than those who received placebo. The trial was led by the Canadian Cancer Trials Group with participation from the National Clinical Trials Network. These results will be discussed in ASCO’s Plenary Session, which features four abstracts deemed to have the greatest potential to impact patient care, out of the more than 5,000 abstracts featured at the ASCO Annual Meeting. “Women with early-stage hormone-receptor positive breast cancer face an indefinite risk of relapse,” said lead study author Paul Goss, MD, FRCP, PhD, director of Breast Cancer Research at Massachusetts General Hospital in Boston, Massachusetts and Professor of Medicine at Harvard Medical School.

“The study provides direction for many patients and their doctors, confirming that prolonging aromatase inhibitor therapy can further reduce the risk of breast cancer recurrences. Longer AI therapy also showed a substantial breast cancer preventative effect in the opposite, healthy breast.” Overall survival was not significantly different in MA.17R between the two groups but Dr. Goss notes that because of the slow chronic relapsing nature of hormone-receptor positive breast cancer, overall survival has proved difficult to demonstrate in clinical trials. Because of this, most endocrine therapies for breast cancer have gained regulatory approval based solely on improvement of disease-free survival. Patient overall quality of life was comparable between the two groups. Small differences in physical role functioning in favor of placebo was observed but these were not considered clinically significant. “A large proportion of women with early breast cancer are long-term survivors. As hormone therapy is given over a long period of time, measuring how women feel is very important,” said Julie Lemieux, MD, lead author of the analysis of patient-reported outcomes from MA.17R, and a researcher at the Centre hospitalier universitaire de Québec in Canada.

About the Study Data from two related abstracts from the MA.17R clinical trial will be presented at the Annual Meeting, with the first reporting on safety and efficacy outcomes (LBA1 – Plenary) and the second reporting patient quality of life outcomes (LBA506). The trial enrolled 1,918 postmenopausal women who had received five years of any one of three AI therapies either as initial treatment or after any duration of prior tamoxifen. Although patients were allowed to enroll up to two years after completing previous AI therapy, about 90% began receiving letrozole or placebo within six months of completing prior therapy. Patient-reported quality of life was measured using the standard SF-36 questionnaire, which covers various areas of physical health and mental health, and a menopause-specific questionnaire, MENQOL. Of the 1,918 study participants, 1,428 were eligible to complete initial quality of life assessments. These were repeated at 12, 24, 36, 48 and 60 months, with more than 85% of women completing the questionnaires at follow-up. Key Findings Impact on Risk of Recurrence and New Breast Cancer (LBA1 – Plenary):

Women in the extended letrozole group had a 34% lower risk of breast cancer recurrence. The annual incidence of contralateral breast cancer, was lower in the letrozole group than in the placebo group (0.21% vs. 0.49%), indicating a breast cancer prevention effect. At five years of follow-up, 95% of women receiving letrozole and 91% of those receiving placebo were breast cancer free. The five-year overall survival was 93% for women receiving placebo and 94% for those receiving letrozole (not statistically significant).

Quality of Life Findings (LBA506): Overall, there were no significant differences in either overall quality of life or menopause-specific quality of life between women who took letrozole for five years and those who received placebo. Small differences in physical role functioning were detected in favor of placebo but these were less than that considered clinically meaningful.

In 2012, there were more than six million women around the world who survived at least five years after breast cancer diagnosis;1 the vast majority of these women have estrogen receptor-positive breast cancer, and may wish to consider these findings. This study received funding from the Canadian Cancer Society Research Institute, the National Institutes of Health and Novartis. This study received funding from the Janssen Research & Development. View the full abstracts: LBA1 LBA506

For Your Readers: Guide to Breast Cancer Hormonal Therapy for Early-Stage Breast Cancer Side Effects 1 http://www.wcrf.org/int/cancer-facts-figures/data-specific-cancers/breast-cancer-statistics Accessed May 27, 2016. View the disclosures for the 2016 ASCO Annual Meeting News Planning Team. ATTRIBUTION TO THE AMERICAN SOCIETY OF CLINICAL ONCOLOGY ANNUAL MEETING IS REQUESTED IN ALL COVERAGE. ###

About ASCO: Founded in 1964, the American Society of Clinical Oncology (ASCO) is committed to making a world of difference in cancer care. As the world’s leading organization of its kind, ASCO represents more than 40,000 oncology professionals who care for people living with cancer. Through research, education, and promotion of the highest-quality patient care, ASCO works to conquer cancer and create a world where cancer is prevented or cured, and every survivor is healthy. ASCO is supported by its affiliate organization, the Conquer Cancer Foundation.

Cancer SurvivorSHIP – Adapting and Adjusting

An out-of-town friend who is in the midst of chemo now for Breast Cancer, wrote and told me, “I just cannot wait to get my life back.”   I cringed and of course, did not have the heart to tell her that your old life as you  knew it is gone.  She will find that out soon enough as she continues down the path.

My sister, Diann, is discovering that right now.  She is now 6 months out of chemo and 2.5 months out of Radiation.  Her hair is coming back and looks like a cute, short cut.  To outsiders, she looks “normal”.  But adjusting to life after cancer is challenging.  You are not the same person you used to be, you feel angry that you cannot get your old life back, and you have no idea what the Cancer Survivor Life looks like.

While Diann was sharing her feelings with me, I remembered this Blog Post I wrote while I was trying to find my way after treatment.  Diann said it exactly describes what she is going through and was helpful to her, so I am sharing this post below.  If you are not a cancer survivor, it is worth the read as it perhaps will challenge you just a little!

Original Blog Post from 2013– Perhaps you landed here because you are a Cancer Survivor and are having difficulties.   Or maybe a spouse, parent, or loved one had cancer, and you do not understand why they are having such a difficult time adjusting to life after cancer treatment.

Six months into being an “official” Cancer Survivor, I made this realization:  Life is not going to be what it was before the cancer diagnosis.  Somewhere in the back of my mind, I believed that someday, somehow, everything would shift and it would be business as usual, and my pre-cancer life would come back magically.   I kept waiting for it.

This all started because one morning as I was donning my Lymphedema gear, taking my medicine cabinet full of pills and supplements, trying to walk because of the severe pain (side effect of the drug Arimidex), and inserting my prosthesis in place of my amputated breast,  it finally hit me that “this is the way it is going to be and you damn well better get used to it.”

I was praying and asking for guidance about what I need to do so I can move forward and not stay stuck. The big, burly, bearded husband of television  Southern cook, Paula Deen, popped into my head.  Why is he in my head, I wondered? I don’t even know his name!  So I googled “Paula Deen’s husband” and interestingly, I found out his name is Michael Groover and he is a Harbor Pilot.   Hmmm, I thought, what does that mean for me?

I found this definition and explanation:   A harbor pilot, often known as a maritime pilot, is a boat pilot with specialized knowledge of a particular port or harbor. The pilot is needed to direct large ships into a port where there are specific deep water channels surrounded by shallower flats.     Without the services of a harbor pilot, docking ships would become a big hazard. There would be a real chance of running aground and damaging the ship and the cargo.   It’s precision work, and as with the many steps and players involved, safe docking and undocking is crucial to the ultimate success of the voyage. 

HarborPilot2Wow, I need a Harbor Pilot to help me with this part of my journey as I do not have the knowledge or tools to navigate these unchartered waters of Cancer SurvivorSHIP.  While I was out to sea in cancer treatment world, my medical team did all the captaining of my ship.  Now, I needed someone experienced in the hazards of maneuvering my ship into this new port.  And it is okay because I have never been here before, and it is all new to me.

A friend had told me a former pastor of mine from 20 years ago, who was a gifted counselor and a cancer survivor, would be glad to speak with me.   He is a survivor of a rare cancer.  He was not expected to live, but 4 years later, he is still here and celebrating life.  We shared cancer stories.  And when I heard about all that he had to deal with on an everyday basis because of all the damage done because of Chemo and high dosages of Radiation, it was inspiring and uplifting.

He then listened to me and was able to immediately assess where I was on my survivor journey.  “AA” he said, “Adapt and Adjust.”  He told me that the biggest learning curve for him in the past 4 years was adapting to what he can do, eliminating what he cannot do, and adjusting to new, yet exciting ways to live life. 

Two simple words, but because he has been there, he knew exactly what I needed.  He is a Harbor Pilot.    The imagery of my Cancer SurvivorSHIP coming into a new port, with new things, new possibilities, and new opportunities resonated with me.  Sure, in order to adapt and adjust, I have and will have to give up things that I can no longer do, no longer take care of, or that no longer serve me.   But I have, I can and I will. For the first time in a very long time, I felt real hope and not manufactured hope!   There is a big difference.

If you are a Cancer Survivor, please take time to focus on those simple words – adapt and adjust.  Perhaps, like me, you have been waiting for life to go back to the way it was before cancer.  Unfortunately, it will not go back.   But with some adapting and adjusting, you can be ready to accept the new life that awaits you.  Also, look for a Harbor Pilot to help guide your way to this new port – a support group, a counselor, or someone who has been there.  You cannot navigate these treacherous waters alone.

If you are not a Cancer Survivor, I’m not going to let you off the adapting and adjusting hook!  Perhaps it is time to review your life and see what you are holding onto that no longer serves you.  Oh, there can be many things:   a job, a relationship,  a certain way of doing things, a grudge, old habits, clutter, painful thoughts…the list goes on.  Time to adapt and adjust to new ways, new thoughts, new ideas, and new hope!  And if you cannot maneuver those waters of change, find or hire a Harbor Pilot to help you.

 

 

 

Pity Parties – When to Have Them, How to Stop Them

If you have found yourself having daily Pity Parties, it is time to change it up. If you are in active treatment for cancer, experiencing great loss, or any other devastating blow, Pity Parties are necessary and keep you sane.  But if you have had constant Pity Parties for years, and they are a part of your daily routine, it is time to change it up and do something positive for yourself!

After going through two years of treatment for Stage 3 breast cancer with heart complications and then Lymphedema, I tried to have only occasional Pity Parties.  UNTIL, my 80 year old mom’s diagnosis with Stage 1 breast cancer.  I had to rethink my plan for how often Pity Parties were allowed.  While still rethinking it, my only sibling, my sister, Diann, was diagnosed with Stage 3 breast cancer!  Three family members in three years about did me in, and I wasn’t sure what to do about it!

pity partyI knew that if I didn’t want to turn into a depressed basket case, I would have to give of myself even more, beyond my Blog and http://www.hellocourage.com, my online store for cancer patients.  But I knew I needed it to be easy.  I couldn’t take complicated or be over  committed for my health.

My mom, sister and I have been to the University of Michigan Cancer Center collectively over 200 times.  They saved our lives and we have nothing but glowing things to say about our physicians and caregivers.  It is an honor to be a patient there, and we all chose to go there. However, it is a 120 mile round trip so it’s been like driving from New York City to Los Angeles almost 9 times!  Okay, indulge me for a Small Pity Party.  When I hear someone complaining because they had to wait an hour for their general practitioner on their one and only annual checkup appointment, to be honest, I want to choke them.  Okay, snap out of it, Denise, get back to your story!

I decided that I needed a simple attack.  Since I dreaded spending so much more time at the Cancer Center,  my plan was to engage a cancer patient in conversation every time I had to go to the Cancer Center.   I prayed for guidance so I know which person  I should speak with, and often that guidance is just the pick of the empty chair available and who happens to be sitting next to me.

Here are just a few of my conversations:  Herb, a 50 something guy who was told he had less than 6 months to live with Esophageal Cancer.  He changed hospitals, and now Herb was at the Cancer Center for his bi-annual checkup – HE IS ALIVE 9 YEARS and cancer free!!

Then there was Barbara –  She was diagnosed with Stage 4 Breast Cancer out of the gate with bone metastases.  She was in her  50s at the time.  That was 17 YEARS AGO!!  She has never been without cancer that entire time, but she has had treatment after experimental treatment and was now in her 70s!!

Meet Doug, the 28 year old determined and energetic  newlywed with testicular cancer that was in the adjacent chair while my sister was receiving chemo.  He had only been at a new job for two weeks, when he was diagnosed.  His new boss said, no worries, we will make this work.  That made me cry as I hear from so many people who lose their jobs after being a faithful employee for years because of a cancer diagnosis!

Denise the early 50s extremely inspiring pancreatic cancer patient who was living life to the fullest even though she knew her days were numbered.   Robert, the 85 year old melanoma patient on a trial chemo drug because he had more life to live.

Today, I accompanied my sister to her 25th Radiation (she is getting close to being done – hooray!),  and I noticed a man holding his head and sort of napping in the waiting room.  He looked in pain.  I knew he was the one today!

As we began to converse, Tom told me his story that he was diagnosed with an extremely rare sinus cavity cancer that was inoperable.  He was in a clinical trial so he could help others in the future.  This necessitated him to stay for four months away from home at a facility called the Wilmot House in Ann Arbor for long-term radiation patients.  He was receiving radiation and chemotherapy simultaneously.  While telling me his story, he began to choke up and tears rolled down his face.

It has made such a remarkable difference in my attitude when I have to go to the Cancer Center yet again, as I now think how blessed I am to hear all these amazing peoples’ stories. Hopefully, I can bring them a tad bit of hope just because I am a Cancer Survivor and have been there!!   I carry these precious people in my heart every day, so whenever I start sinking into Pity Party Mode for whatever reason, the thought of them snaps me right out of it!

I challenge you — if you are engaging in ongoing Pity Parties long after your pain, you must change it up or it will consume you forever.  Here are some tips to help you move forward:

  1.  Write down what the chatter in your head is constantly saying.  Sometimes you can overlook it, as playing the negative has become such a habit.  Write as many pages as you need to and look at the reality.
  2. After looking at the cold, hard facts, make a list of 5 things you could do to change your life in a positive way.  For example,  my friend, Linda, took immediate action when her only child went 1,000 miles away to college.  Linda was devastated, but she knew she would sink into a great depression so she began to work full-time with autistic children.  Linda had not worked full-time in over 18 years, but she knew it was time to take action.  Gone are the Pity Parties from Linda’s life as she is so much enjoying her new rewarding and very fulfilling career.  Linda is thrilled her daughter is thriving in college.
  3. Ask for help – if it is all too overwhelming and you have no idea what to do first, seek the immediate help of a licensed counselor, Psychologist or Psychiatrist.  Just relaying your story to someone who understands will help move you forward.

Take action, make that change – you know what it is – just do it!  I guarantee your life will be better because of those changes!

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Check out the cute winter hats at http://www.hellocourage.com on sale now!

 

 

 

 

 

 

 

 

 

Actress Kathy Bates, Lymphedema Spokesperson

Kathy BatesMarch is Lymphedema Awareness Month so I was absolutely thrilled to see that Oscar-winning actress, Kathy Bates, is a spokesperson for Lymphedema.  Ms. Bates had breast cancer with a double mastectomy with many lymph nodes removed.  As a result, she has Lymphedema in both arms.   Her recent February, 2015 appearance on the television show, “The Doctors”, was extremely informative.  Plus, the doctors added much to the discussion as did Ms. Bates own Lymphedema Physician.  As a fellow Lymphedema sufferer, I am so happy she is informing the public of this condition and reaching out to women who may have Lymphedema but have not gotten proper treatment!

Please watch this educational video!  It is worth the time to do so!

New Spring Arrivals at http://www.hellocourage.com  Marchcollage2015a

Post Traumatic Stress Syndrome (PTSD) in Breast Cancer Survivors

Melissa is a breast cancer survivor of 2 years.  She has endured multiple surgeries, chemotherapy, radiation, Herceptin and is facing even more surgeries due to breast cancer.  In her earlier years,  Melissa was a Critical Care nurse in the Navy and was deployed in 2004.  After she retired from the Navy, she screened veterans for Post Traumatic Stress Disorder (PTSD) as a Nurse Case Manager for Operation Enduring Freedom/Operation Iraqi Freedom at a Veterans Administration Hospital.  Melissa was an expert at identifying PTSD and referred the veterans to Mental Health for Treatment.   So even with all of Melissa’s training, education, and military experience as a Nurse, Melissa says that no training prepared her for breast cancer PTSD, but it just made her aware that she has it.

According to the National Cancer Institute:

PTSD in cancer survivors may be expressed in these specific behaviors:

  • Reliving the cancer experience in nightmares or flashbacks and by continuously thinking about it.
  • Avoiding places, events, and people connected to the cancer experience.
  • Being continuously overexcited, fearful, irritable, and unable to sleep.

Melissa says that with PTSD, your world becomes much smaller.  A cancer diagnosis,  chemotherapy,  radiation,  side effects, body image disturbances, etc. make up the perfect scenario for one to suffer from PTSD.  Studies show that over 50% of breast cancer survivors suffer from PTSD.  I believe it is much greater for women who have had “the breast cancer treatment book” thrown at them.  Melissa believes that more focus needs placed on the psychosocial effects of breast cancer treatment.

Melissa now works as a Clinical Nurse Navigator in a civilian hospital for GI/GU Oncology.  In order to cope with her flashbacks from chemo and PTSD, Melissa tries being proactive by avoiding the Chemotherapy Floor in the hospital where she had chemo and arranges to visit her Oncologist appointments at his satellite offices and not at the Cancer Center where her appointments were during treatment. Working with cancer patients on a daily basis does not bother Melissa, in fact, her experiences make her definitely understand what they are going through.  Her coworkers know her trauma and try to shield her from the breast cancer recurrence stories as best they can.

Like Melissa, I am still learning to live with PTSD.  On a recent trip to my Cancer Center, the chemo flashbacks were firing in my brain like a machine gun.   It struck me that it was the same week in January that I had Chemo #2 three years previously.  It was a Tuesday, the same day of the week, and same kind of cold January day, I was sitting in the same waiting room, on the same floor where I received chemotherapy, and being called back to an exam room.  My brain and body could not tell differentiate between the past and the present.   Several hours later, when I arrived in the safety of my home, my body literally started shaking like it would after Chemo.  And I had to sleep with the television on to distract my brain in order to fall asleep – what I had to do during cancer treatment.  The next morning, I vomited,  just like I always did the morning after all 16 chemo treatments.

Melissa has tried therapy with a PhD Cancer Psychologist, and it didn’t work for her.  She says what works for her is time and the love of supportive family and friends.  But therapy certainly may work for you.

Melissa and I agree on what helps us:

(1)  Have a panic buddy,  a cancer survivor friend, whom you can email or call to help talk you from the past to the present.  We call it “talking us off the cancer ledge.”

(2)  Have a go to place – a website, a survivor story place, a support group, a news article – anything that gives you hope and encouragement.  For Melissa, she keeps a clipping about a survivor who has a similar diagnosis to hers who has been alive over 10 years.  For me, I go to the Posting Boards on a favorite cancer website to read survivor stories of women who had bigger tumors than I had and more lymph nodes removed and are still alive.

(3)  Both Melissa and I play over in our heads all the positive things we are doing to keep cancer away – like regular checkups, taking certain drugs and supplements, trying to eat lots of vegetables, and staying away from bad things and toxic relationships.

(4)  Melissa said she often has to have a good cry to clear the air of her fears.  I think she is on to something.  Today, I finally gave into the tears about everything I’ve been feeling emotionally, and it really helped.

(5) Refrain from sharing your fears and flashbacks with family and friends unless it is someone who really understands.  Otherwise, you may end up feeling worse by being told your fears are unfounded.  No one can really understand unless they have been through it or a similar life-changing trauma.

candlecalm(6) Take time for yourself to do something you enjoy.  As cancer survivors, often we have forgotten how to just enjoy life as we used to do.  This may be because of side effects from drugs, financial struggles, or not enough energy to do beyond the basics. But it is so important to find something you enjoy that will help bring peace when you are in the  midst of a full-blown PTSD attack.

Take that first step whether it is getting professional help or learning your own coping mechanisms.  If you have coping skills that work for you, please share them!

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Lymphedema Warnings

Since it is the holiday season, that may mean hauling gifts, moving Christmas trees, lifting heavy boxes, shoveling snow and perhaps flying to visit family. Which makes it a great time to talk about Lymphedema!!  You do not want this to happen to you:

Breast Cancer Survivor who lives with Lymphedema

Breast Cancer Survivor who lives with Lymphedema

Lymphedema is like strapping a brand new puppy to your arm 24 hours per day.  It constantly demands attention.  Never is there a moment when you do anything from walking to heavy work, that you aren’t thinking about your arm and Lymphedema.  I hear this from people who see my compression garment and ask me, “What did you do to your arm?”   My response:  “I have Lymphedema from breast cancer.”   Sometimes,  I get tired of dealing with the questions and explaining so I have used these responses:   “Shark Bite”  “Bar Fight”  “Snowboarding”  “Alligator wrestling”  and “Parachute got tangled”.  I do that because when I tell them the whole breast cancer connection,  9 times out of 10 I hear this response:  “Well, it’s better than the alternative.”  But people respond the way they do because they have no idea about what it is like to live with Lymphedema.  And if you are a new breast cancer patient and haven’t been warned about the ins and outs of Lymphedema, you do not understand either.

Recently, I got an email from Jan, who had completed “Red Devil” Chemo and was in the middle of Taxol.   She had some questions for me.  One was her arm was bothering her.  After we wrote back and forth, she told me she had 18 lymph nodes removed during a Mastectomy.  I told her that her arm symptoms definitely sounded like Lymphedema warnings and that she should get to a certified Lymphedema therapist immediately.  Jan wrote me back just a tad perplexed.  Not one person – her breast surgeon, her Oncologist, her family doctor – NO ONE had told her she was at great risk for Lymphedema.   My telling her was a total and complete surprise to her.   She was horrified to know that her medical providers neglected to tell her this extremely important fact!!  Jan lives in a rather large city in California.  This should NOT be happening!

Jan is not the first person I’ve heard from that has never been warned about Lymphedema.  It still shocks me!  Since I have to live with the challenges of Lymphedema every day of my life, it is so frustrating to me that women are not warned about this great malady while going through breast cancer treatment!

Brenda from North Carolina and I became acquainted after she wrote me to tell me she was the fashion diva of the chemo ward when she bought hats my online store, Hello Courage  (www.hellocourage.com)  Brenda has a great sense of humor and always makes me laugh.  Brenda has been hit hard by a major Lymphedema onset shortly after her Mastectomy and lymph node dissection which happened after chemotherapy.  These are Brenda’s words about her emotions as she deals with Lymphedema.  Brenda has had such a flare up, she has to use a Flexitouch pump.  With Brenda’s great sense of humor, she has had plenty to say about this huge contraption.  But here Brenda speaks from her heart and tells us her emotions when dealing with the daily challenges of Lymphedema:flexitouch

“Lymphedema is a real hit to the emotional equilibrium. I knew very well, especially after reading your blog, that I was almost guaranteed to have issues, but somehow the reality was nothing even CLOSE to the abstract. The idea of having to wear a glove and sleeve just doesn’t seem that bad… until it’s OMG, MY ARM IS HUGE AND THIS HURTS AND WHY WON’T IT RESPOND TO WHAT WE’RE DOING? And then you look at the pictures of limbs that have gone rogue and just won’t be tamed, and you panic, thinking “Is this going to happen to me? What then?” Suddenly the LympheDivas sleeves don’t look so cute, and Lymphedema gets serious in a big hurry!

I think the timing is part of the whole emotional aspect of Lymphedema as well.   It seems to fall under the “last straw” category, after you’ve already fought through everything else in breast cancer and are, quite frankly, worn down and hanging on by fingernails. I’m pretty good at putting on the happy face and plodding forward, but when you’re still weak from Chemo, having ungodly nerve pain after the mastectomy, dealing with seromas, and cording, and radiation burns, it’s just the cherry on top of the big ol’ crap sundae!  And while you got through chemo, and healed from surgery, finally, and your skin grew back after radiation, are dealing with the side effects of Aromatase Inhibitor drugs, the harsh reality that Lymphedema is forever washes over you. It’s just too much!”

Amen, Brenda.  Well said!  So PLEASE ladies, if you have had one or more lymph nodes removed, make sure you make an appointment with a trained Lymphedema specialist or get to a Lymphedema class. You can find a therapist or a class at larger cancer centers or a larger hospital.   The reason it is necessary for you to do this is to find ways to PREVENT Lymphedema from occurring.  Many of us couldn’t have stopped it from happening.  But many of us CAN!  Please take this warning seriously.  Many surgeons and oncologists tell their patients, “Oh you only had 2 nodes out, you are not at risk.”   That is WRONG information.

I’ve written much about Lymphedema in the past which was what Brenda was referring to — giving many facts, what to avoid doing, warning signals, what you need to do if you have had ANY lymph nodes removed.  Please read them again!  It may save you from the realities that Brenda and I both deal with on a daily basis.

https://denise4health.wordpress.com/2013/02/11/learning-to-live-with-lymphedema/

https://denise4health.wordpress.com/2012/08/15/lymphedema-lymph-nodes-and-breast-cancer/

ALSO, please be sure to read the Comments left by other women below!  Very helpful information!!

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Brenda was the fashion diva at her hospital thanks to hats from http://www.hellocourage.com —  big hat sale going on plus Discount Code — check them out and also my wicking sleepwear that helps you sleep while dealing with hot flashes!  THANKS SO MUCH FOR YOUR CONTINUED SUPPORT!

CH-h4clochegraywool1CH-h4activitydenimred1collagewickingpajama