Tired of Breast Cancer

A few weeks ago I had a dream that my Oncologist told me that he was tired of breast cancer and was becoming a Veterinarian.  I woke up chuckling and pondered “what did that dream mean?”

Well, it wasn’t too hard to figure it out – “I am tired of breast cancer.”  “IT” is all I have done for almost 5 years!  It took over my life, it became my life, and it still is my life.  I want to rid my life of it, but guess what, I can’t!

I’m stuck with all of it – myself, my mom, and my sister – all with breast cancer within 3 years and as you well know, it never goes away because there is always some medical appointment lurking.  Then there is writing my blog about what else – breast cancer. And then starting my online store http://www.hellocourage.com and the majority of my customers have breast cancer.

So what do you do when you are tired of something in your home?  I usually move the furniture first because that doesn’t cost any money!  Often, that makes me feel better and settles down those feelings of discontent.

What do you do when you are tired of your clothing?  Change it up, wear different combinations, buy a few new items?

If you are tired of your car but don’t have the money to buy a new one, you might get it washed inside and out, spray a new scent inside, and buy new car mats!

But I’m not quite sure what to do about being tired of breast cancer, are you?

 

 

 

 

 

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.

Dealing with Angry Feelings After Breast Cancer

My sister, Diann, is having her one-year anniversary from starting Chemotherapy for Stage 3 Breast Cancer.  She is struggling with ALOT of emotions and feelings and  wonders what to do with them.  I resurrected my Blog Post that I wrote one-year after Chemo began for me.  Diann could definitely relate to these angry feelings and is trying to understand what to do with them.

Here is my Blog Post from 2013.  Even if you are many years out from treatment, you may relate to many of these anger issues that were statements I gathered from women who had written to me:

According to Dr. Phil McGraw,  “Anger is nothing more than a cover for hurt, frustration or fear or all three.”  Well, that made sense to me as to why I felt angry.   As far as my heart was concerned I felt hurt, was frustrated, and definitely fearful about the future.  I was so uninformed before breast cancer, I had absolutely no idea what it would mean to live as a survivor.  My images were of physically fit, smiling women running Marathons dressed in pink garb with glowing skin, white teeth, perky new breasts and thick long hair pulled back in a ponytail tied with a pink ribbon.  It looked so easy and almost inviting.

AngryimageI am definitely not alone when I feel angry.  I’ve received countless emails recently from women who feel angry during and after treatment.  They are confused, hurt and feel guilty that they have these feelings.   Almost everyone says this in one form or another:  “I am so grateful to be alive, but yet I feel angry.” Here are some of their statements.    Perhaps you can relate to a few or many of them.

  • I feel really angry that I am the one who got the breast cancer
  • I have pity parties for myself and for what I have lost.  Sometimes my pity parties last for days.
  • I get angry at women who go around flaunting their cleavage especially in front of my husband
  • I miss my old pre-cancer life and feel angry about the loss
  • I cry over what I lost
  • I feel guilty that I lived and my friend (or family member) died of breast cancer
  • I hate how breast cancer left me with all the side effects that remain like Lymphedema, neuropathy, numbness in my breast, no low cut tops, cannot shave under my arms, heart damage, radiation damage, mouth sores, acid reflux, thinner hair and severe pain.
  • I get envious of people who live in a non-cancer world
  • I get angry that I had to quit my job
  • I get angry that I was fired during breast cancer treatments
  • I hate that a pain in my leg or a headache evokes panic of mets and that makes me angry.
  • I feel burdened by the weight of Survivorship like I should always be happy because I survived
  • I get angry at people who say ignorant things to me when they know nothing about breast cancer
  • I feel angry at the family and friends who abandoned me during treatment
  • I get angry and tired of being an inspiration
  • I am angry that I have no sexual desire and feel bad for my husband
  • I get angry that the pink ribbons and pink parades left others thinking that because we lived and because our hair is back, we are fine.
  • I hate that I  never get done going to medical appointments.
  • I  really hate and feel mad that people think because I survived somehow I had the “good cancer”
  • I am angry that chemo stole my mind  and I cannot think clearly like before breast cancer.
  • I  hate feeling frequently detached from the rest of the world.
  • I am angry and tired of people having a quick fix for me when I am in panic mode about recurrence
  • I really hate it and get angry when people who still have estrogen and normal muscle mass (because I lost mine to estrogen-blockers, ovary removal and “chemopause”) say “I can show you how to exercise and lose weight.
  • I get angry when other people complain about really minor things because I had to face mortality head on
  • I feel very guilty for all of these feelings like it is wrong to even have them or admit them

Admitting that we have angry feelings is a huge step.  Of course, we celebrate that we survived.  But the reality is that survival is often at a cost.    So many women have so much to deal with physicially and emotionally after survival.  Some days you feel like jumping around and celebrating survival with pink pom poms.  Other days you feel like taking those pink pom poms and (fill in the blank…..).

When I was researching for this post, I found a very interesting article in Maclean’s, a Canadian Magazine about anger and breast cancer survivors:  http://www2.macleans.ca/2008/11/20/the-angry-breast-cancer-survivors/   Perhaps you will find it interesting as well.

Note: One of the ways I dealt with my anger issues is to focus my energy on my online store for cancer patients – http://www.hellocourage.com

 

 

 

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.

 

 

 

Lymphedema Awareness after Breast Cancer

March is Lymphedema Awareness Month.  I deliberately posted this on the last day of month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Now that my sister has recently finished active treatment for breast cancer and had many nodes involved, I am constantly warning her about Lymphedema!

Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force.  Some women have gotten this condition with no nodes removed, but that is more rare.

At the very LEAST, your preventative measures should include 1)  Wearing a fitted compression sleeve when you fly in an airplane – even for short flights;  There is other information out in googleland to the contrary.  Do not listen to it.  I have met two women who have full-blown Lymphedema after a quick air flight.  One had been 20 years out of cancer treatment!   2)  When you are lifting heavy items or moving heavy items, make sure to wear a compression sleeve.   3)  Lots of repetitive motion like shoveling snow, sweeping, mopping could be cause to wear a compression sleeve.  Pretending Lymphedema cannot happen to you does not work!

I got full-blown Lymphedema after lifting three heavy plastic grocery bags with my “bad” arm.  And I had been to all the classes and visited a Lymphedema Therapist.  That is all it took to bring it on and cause me to wear a compression sleeve and often a gauntlet every day for the rest of my life.  Here is a previous blog post I wrote about Learning to Live with Lymphedema that gives more information: https://denise4health.wordpress.com/2013/02/11/learning-to-live-with-lymphedema/

The following 10 minute, professional video entitled, “Breast Cancer’s Dirty Little Secret”  does a wonderful job giving more information about Lymphedema.  It is definitely worth investing the 10 minutes to watch!

Cancer Survivors Pictorial – How Cancer Changed Me

Frequently, I received emails from cancer survivors who ask these questions:  “Shouldn’t I be over cancer by now?” “Why do I feel worse years after fighting cancer?”  “Will I ever be normal again?”  Often they tell me how misunderstood they feel because family and friends do not understand why that are not “over it” and have not been able to move on.

Watching my sister, Diann, emerge from one year of active treatment for Stage 3 Breast Cancer, her story of change becomes more vivid as I watch her make the baby steps of getting to a new, different life and watching her discover who she is after treatment ends.

So I came up with a SIMPLE project that takes less than 15 minutes to do that will help give you an INSTANT picture of where you came from, where you are, and where you hope to be after cancer.  Doing this small assignment myself proved to be more valuable than therapy to me!

These are my directions:   go to the internet, magazines, or some other resource that you can tear out or cut and paste pictures of a theme that inspires you.  As you will see below, some of the women who did this assignment went with their interests – landscapes, flowers, birds, fabrics. Yours might be symbols, houses, boats, food – the sky is the limit!!   Find five (5) pictures that represent the following:

  1. Your life before cancer diagnosis
  2.  Your life during cancer treatment.
  3.  Your life after cancer treatment ended.
  4.  Your life as it is in the present.
  5.  Your life as you hope it to be in the future.
Here are the results of some of these cancer survivors’ projects:
From Melissa – an RN who lives in the Southern United States and loves flowers.  Melissa is a Stage 2 Survivor and 3 years out from treatment.  Melissa had SEVEN breast-related surgeries!!  Melissa has been through so much.  Her NOW picture is so interesting because in that photo she is looking up through those flowers as if she is a new bud yet still on the ground.  Here is Melissa’s story in pictures:
Melissacollage
From Kelly  – who is 3.5 years out from Chemotherapy for Stage 2 breast cancer.  Kelly raises birds and relates to their beauty and habits.  In the midst of surviving cancer, her mom passed away.  Kelly’s story is quite fascinating – from L to R – Cardinal, House Sparrow, House Finch, Cat Bird, Blue Bird.   Kelly’s pictures are so telling because everything turned to gray from her colorful life before cancer, yet she has the hope of being colorful once again and taking flight!
 Kellycollage
From Diann – my sister, finished active treatment in January of 2016.  Diann relates to landscapes and their beauty.  Here is her story in pictures.    Particularly telling is the picture of the woman in the sandstorm all alone who can’t find her way.  I especially like her rainbow picture which shows she is feeling hopeful although the skies are still very dark.
 Dianncollage
From me – I chose fabrics because that is one more reason why I love my online shop http://www.hellocourage.com for cancer patients as I get to see so many fabrics.  What was telling to me was my After picture which included my mom’s diagnosis of Stage 1 breast cancer then my sister’s diagnosis of Stage 3 breast cancer.  Clearly that picture said to me, “Here we go again!” and the up and down repetition of that fabric.  My Now shows a bunch of colorful symbols but they are still not yet fully woven together – it is colorful yet fragmented.
Denisecollage
Seeing these pictures clearly defines why it is not possible to put cancer fully behind you as it is incorporated into the “fabric” of your being.  Just knowing that and being able to live with that fact, is extremely healing.
I urge you to try it it should prove to be very meaningful.  If you are willing to share your photos with me, I would LOVE to see your story.  Feel free to Email them to me at hellocourage@live.com

 

 

 

 

 

 

Radiation, Left Breast Cancer, and Deep Inspiration Breath Hold

My sister, Diann, recently finished Radiation for Stage 3 breast cancer of the left breast.  One reason she drove 120 miles round trip daily for 7 weeks was that a newer technology called “Deep Inspiration Breath Hold” was available.  This technique helps protect the heart and lungs from radiation while the left breast area is being treated.  The patient dons scuba-like gear and has to hold their breath for 10 to 25 seconds periodically during the radiation process so the chest wall pulls away from the heart and lungs and thus, the radiation stays away from the heart and lungs as well.

When I had radiation three and a half years ago, also for left breast cancer, I did not have this, nor did I know it existed.   This is a marvelous breakthrough to help women prevent heart and lung damage.  I suffer from both heart and lung damage from cancer treatment, so I am grateful my sister was able to have this technology.

If you need radiation for left breast cancer, I would URGE you to seek out this type of radiation treatment.  It will most likely take some research on your part, but it will be well worth it.  I hear from so many women that have heart damage years later because of radiation damage.  Just this week, I spoke to a 77 year old woman who needed a valve transplant due to damage 10 years after radiation for left breast cancer.

This picture of Diann shows her with the apparatus– the interactive device between patient and radiation.  Notice the glasses as well.  The patient interacts with the radiation technicians and the computer screen which is visible to the patient through the glasses.

IMG_0766

Deep Inspiration Breath Hold Radiation Left Breast Cancer

 

This following is a terrific video from the United Kingdom that explains in simple terms more about this technology.   PLEASE take this into consideration before you get radiation for left breast cancer!