Breast Cancer Around The World

I hear from women around the globe who all have one thing in common:  Breast Cancer.   We may be from different countries, but our emotions and fears are the same.  Are we going to live?  How much do we have to suffer?  How do I possibly get through this?  The power of the internet never ceases to amaze me and because of the push of one little “Translate” button on their computer screen, women are connected no matter what language we speak.  Every week when I look at my statistics from WordPress, chances are I discover another country. This week it was Brunei Darrusalem.  I’ve always been pretty good at geography, but I’ve never heard of that country.  It is on the coast of Borneo in Southeast Asia.  In total, people from 138 countries have visited my website mostly looking for two things:   COURAGE and HOPE

What surprises me is that the treatment for breast cancer is just about the same worldwide for more advanced breast cancers which is Adriamycin Cytoxan and Taxol or Taxotere in the chemotherapy realm.  And just when I get a tad feeling sorry for me as I have to drive 60 miles (95 kilometres) one way to see my Oncologist, I get an email that puts it all into perspective.   Women who live in extremely remote areas that have to fly in a small float plane every week to and from treatment, women who live on islands that have to take a ferry or a boat to treatment, and women who are forced to relocate sometimes thousands of miles away from friends and family because they feel treatment close to home isn’t as good. They leave everything familiar to seek healing.

Perhaps one of the most unexpected emails I received was from a cloistered nun from a Monastery in Australia.  One of her sisters at the Monastery who was not computer literate, was undergoing Chemotherapy and needed some help and information.   Recently, I got a follow-up email from her telling me how well that Sister was now doing after treatment!  These nuns pray for me, I am happy to report!

Today I apologized to a young mom who lives in Mexico for my wrong beliefs.  She was diagnosed at age 34 with Triple Negative Breast Cancer.  She went to Houston, Texas for surgery and is receiving chemotherapy in Mexico as she wanted to be near her husband and daughter while undergoing treatment.  I am sorry to admit that when I think of treatment in Mexico, I immediately think it is substandard to the United States.  Where this young woman is being treated in a modern hospital in a mid-size city in Mexico, that is definitely not true.  Her Oncologist just returned from the American Society of Clinical Oncologists (ASCO) conference in Chicago and is up on the latest and newest treatments for breast cancer.  He hospitalizes her overnight after each AC chemo to keep a watchful eye on her after infusion since she is receiving dose dense.   She tells me that her hospital room in Mexico is much nicer than the one she had in Houston.

Sadly, I hear from women who lose their jobs because of breast cancer.   One woman from Ireland who lives in a very small town and was fired from her job during treatment, knows that it will be extremely difficult for her to find a new job as everyone in town knows she had breast cancer.   She said that being fired from her job was more traumatic for her than being diagnosed with breast cancer.

I cry each and every time when I hear from women of young children who pray they can make it to their children’s high school graduation.  It does not matter what country they live.  And I cry even more when I hear from breast cancer survivors who never thought they would make it to that milestone in their children’s lives, and they have as their kids may now be in college, getting married, or starting families of their own.   These survivors never take that for granted!

So if you are in the middle of chemo, facing a Mastectomy, or scared silly about Radiation or Radiotherapy as it is called in some countries, remember your sisters from around the world.  We are all in this together.

Adriamycin and the heart…

Adriamycin (Doxorubicin) does cause heart attacks and heart failure.   I had a heart attack while going through Adriamycin as the heart damage is evident on all my heart tests and confirmed by three Cardiologists.  The vast majority of emails I get from readers of my blog have to do with Adriamycin Cytoxan Chemotherapy known as the “Red Devil”.    There doesn’t seem to be any rhyme nor reason on why some women have very few side effects, and others have debilitating side effects.  Now I have to give you more bad news to watch for serious heart side effects and not overlook them.

I had symptoms of a heart attack during Adriamycin, but thought it was side effects.  Clearly, I remember the night with shoulder pain, chest pain, and sweating. From then on walking up my steps, I had to rest every other step I was so out of breath.  Immediately, I developed a serious cough and even more fatigue.  You might ask, “Why didn’t you do something?”    Well, in my case the side effects of AC were so bad this seemed normal to me.   I never even mentioned this to my Oncologist as being out of breath is normal on AC.   My heart rate also elevated to 112 beats per minute which also can be normal during AC.

Thank God my Oncologist sent me to the Cardiologist when my Echocardiogram came back with “scary bad results” to quote my Oncologist.   We all blamed it all on Herceptin, but looking back, the symptoms were during Adriamycin.  Herceptin just added to the damage.  The Cardiologist immediately put me on heart meds.  After 10 months of heart meds, my heart has greatly improved I am thrilled to report. 

MD Anderson, the #1 cancer hospital in the USA, recently completed a study about heart failure and Doxorubicin (Adriamycin) with some amazing findings discovering the molecular basis for Doxorubicin’s damage to the heart.  It explains why some people can have a very small dosage of the drug and still get heart damage, yet others who have large doses have no heart trouble:

“Even in this age of targeted therapies, doxorubicin remains an effective agent used mainly in combination with other drugs against a variety of malignancies, including breast, lung, ovarian and bladder cancers,  as well as leukemia and lymphoma,” said Edward T.H. Yeh, M.D., professor and chair of MD Anderson’s Department of Cardiology and senior author of the study.

“However, its use is limited by its cardiotoxicity, which can lead to heart failure,” Yeh said. “We’re excited because we’ve identified the molecular basis for doxorubicin’s damage to the heart.”

The full article can be found here:   http://www.mdanderson.org/newsroom/news-releases/2012/key-discovered-to-how-chemotherapy-drug-causes-heart-failure.html

Because of their findings, MD Anderson is undertaking yet another study to determine if a simple blood test could tell a patient’s risk for cardiac toxicity during Doxorubicin (Adriamycin).   I find that to be absolutely incredible!

But as we wait for that to occur, if you are currently on Adriamycin, watch for these severe heart problems and let your Oncologist know immediately.  Do not hesitate to use that word “heart” when talking to your Oncologist.   If you have taken Adriamycin in the past, pay close attention to your heart.  After my experiences, I would recommend that you see a Cardiologist so your heart can be monitored.  Heart failure can happen many years after taking Adriamycin.

Has all of this been worth it?  Yes, I am still feeling better each day.  That is worth so much.  Do not get discouraged.  It is all overwhelming, but pay attention and speak up!

More Birthdays after Cancer

The American Cancer Society has a campaign called www.morebirthdays.com fighting for a world with less cancer and more birthdays.  When I first heard about that promotion, before my own diagnosis of Stage 3 Breast Cancer, I thought maybe it was a little silly and a little hokey.  I am sure you have seen the commercials of celebrities like Jennifer Hudson and Celine Dion singing “Happy Birthday”.   Now I see the wisdom in the campaign as I reflect on how birthdays have changed for me.

Recently, I celebrated my first birthday post-treatment.    Pre-cancer I dreaded birthdays because of being a year older and everything that goes along with that experience.   No longer am I ashamed of my age and trying to reduce it by a few years.  Everyday is a birthday to me.

Constant tears came to my eyes on my birthday and even a few sobs as I thanked God for the gift of life.   Gratitude truly overwhelmed me for how far I have come, for all those who helped me, and for being alive.   That emotion came from the depth of my soul and rose so strongly that it just came out my eyes like a fountain that had no where else to go.

Surprisingly enough, I got an email on my birthday from a breast cancer patient who is 34 but feels 74.  She was wondering if she will ever feel her real age again.  I assured her she will, but it will take time to slowly return to her actual age.   Finally, I am back to feeling my age.  What an amazing thing to feel 30 years younger than I did just a few short months ago.  I have found the fountain of youth!!  And my sympathy and compassion for older people has increased tenfold because I lived in my 80s for many, many months before returning to the wonderful 50s.

If you are a cancer patient going through active treatment, it does get so much better.  You may feel like dying today as you struggle your way through chemo.  That’s okay, but keep fighting.  There is so much hope.  Perhaps you feel like giving up because you don’t have any more strength or courage to muster.  Keep going.  You can do it. Just get through this hour and this day.   Don’t let anyone tell you there isn’t hope.  Next year will be so much better!  Keep remembering that and use that mantra to help you get through!

And if you have a family member or friend who is a cancer patient or cancer survivor and celebrating a birthday, send them an e-card from www.morebirthdays.com    It will be the most meaningful thing you can do!  And while you are at it, consider making a contribution to the American Cancer Society.

Cancer Rehab Programs – do they work and are they worth it?

Cancer Rehabilitation Programs work.  I went into cancer rehab kicking and screaming, but now I am thankful that I have devoted the time, energy and dedication it takes to participate in the rehab program.

Cancer Rehab is a rather new field at many hospitals.  Since there are more and more cancer survivors, hospitals have realized that cancer survivors feel abandoned after over a year of intense treatment to suddenly be thrust aside and on your own. For years there have been rehab programs for heart patients, stroke patients, and just about any other kind of rehab.  Many cancer patients have debilitating side effects.  Prematurely they often decide that this is the way it is going to be.

In my case, since I already had Lymphedema in one arm and was receiving treatment, I thought I would have to live with the very limited range of motion I had in that arm as a result of Mastectomy, Chemo and Radiation in addition to many other side effects.

My local hospitals, the Mercy Health Systems in Toledo, Ohio, recently became affiliated with the STAR Program which is a program from Oncology Rehab Partners.  It was developed by Julie Silver, M.D., an assistant professor at Harvard Medical School, who is a cancer survivor.  A year after cancer treatment ended, Dr. Silver then in her 30s,  realized that cancer survivors needed help to heal.   Here you can find out if there is a STAR Program certified hospital near you:   http://www.oncologyrehabpartners.com/    My Lymphedema Specialist talked me into being a guinea pig for the program – I am Patient #2 at my local hospital.

My course of treatment has been Physical Therapy and Occupational Therapy based which has been a tremendous help to me.  Not only has my arm improved by 75%, my body pain has lessened, my fatigue has greatly diminished, and I feel more prepared to handle the stresses of daily life post cancer.   This has taken commitment on my part.   There are other elements to the STAR Program which are done at home like exercises, writing down fatigue levels,  monitoring your diet, and more out-patient hospital treatment.

If you are a Cancer Survivor or Cancer Patient, I would advise you to seek out a good Cancer Rehab Program.  Don’t wait until your Oncologist or physician tell you to, because they may not.  Often, they overlook that aspect of treatment.  You have to be willing to dedicate the time and effort it takes to do the work. But remember, it is worth it.

I had six months after active treatment ended before I started the Cancer Rehab Program.  I needed that six months to have the stamina to face more challenges.  Everyone is different.  Know what is the appropriate time for you before you start rehab.  For some people that might be immediately after active treatment ends.  For others, it may be longer.

Most insurances will pay for Cancer Rehab, but check with them before you start any program.  My insurance pays for 20 Physical Therapy visits and 20 Occupational Therapy visits per year.

Lessons of Chemotherapy One Year Later

Tomorrow I celebrate my first anniversary of my last Chemotherapy treatment for breast cancer.   I planted flowers to celebrate as I was unable to plant last year.  As I pondered  this cancerversary in the garden, I realized these Lessons of Chemotherapy remain with me each day.

If you are in the midst of Chemotherapy or active cancer treatment, take time to learn your lessons through the pain and suffering.  They will be valuable gifts to you in the future.  And if you have never been a cancer patient, I hope my lessons can be helpful to you.

1)  You only have so much energy in a day.  Use it wisely.  Plan things that take a lot of energy during your peak energy times of the day and  week.

2) Learn to listen to your body and respect what it needs – exercise, healthy foods, and nourishment from other sources.  Say no to things that do not nurture you or bring you life.  Just ask this simple question:  “Does this help me or harm me?”   Never hesitate to say no to things that harm you.

3)  If anything is not serving you well, people, places or things, begin removing it from your life.  It is a process, but make the first step.  The first steps are difficult, the remaining steps are easier.

4)  Make time for what is important to you and make sure you know what is!

5)  Appreciate all of life each and every day and give thanks.  And when those rough times come, I always say to myself,

“It’s better than Chemo!”

6)  Make plans for the future and dream big.  Picture yourself living life in these dreams!

7) Listen to the still, small voice of God.  He has a purpose for this second chance at life.

8) If you do not have 100% confidence in your doctor, medical facility, or medical staff, find another.  We often spend more time shopping for a new piece of clothing than finding the right fit in a medical professional.  Your life is in their hands.  Make sure you trust them with it!

9) Pray for those who supported you during treatment and return their love and friendship.  Their faithfulness helped you survive and continue to thrive!  Be grateful and show your appreciation.

10)  Begin to forgive those who abandoned you or never went out of their way for you during cancer treatment.  Learn how to be friendly yet keep your boundaries in place when and if your paths must cross.  They have proven themselves not to be friends.  Let them go in peace and remember with love the valuable lessons they taught you.

 

Reconstructive Surgery after Breast Cancer – Survey

If you have had reconstructive surgery after Mastectomy, I would so much appreciate your participation in this poll.  Thank you!  Denise

3D Mammograms,Tomosynthesis, and Dense Breasts

Reading this post about 3D Mammograms, Tomosynthesis, and Dense Breasts may save your life.

This new mammogram technology was only approved by the FDA in February, 2011.   http://www.diagnosticimaging.com/tomosynthesis/fda-approves-first-3-d-mammography-imaging-system

In one day, I heard from two women who had Tomosynthesis.   It probably saved their lives, and certainly gave them a much better chance of survival.  In their cases, they had to pay $50 and $40 more respectively in addition to insurance.  At my local hospital, they do not charge any additional, so check with your hospital.  So many women I hear from had lumps that were never discovered on a regular Mammogram.  By the time they were diagnosed, they were Stage 3 or Stage 4.  And over 40% of women who are diagnosed with breast cancer find their own lumps.  The cold, hard reality is that many , many women diagnosed with advanced breast cancer had nice little letters from their mammography center saying they were okay.

This story from Jane:

My breast cancer was found when I went for a routine mammogram and the woman at the front desk talked me into having a new test called Tomosynthesis.  Sometimes insurance doesn’t cover the additional costs, but my radiology center was offering it for $50.  The woman behind the desk reminded me that I would pay more for a pair of shoes, so I agreed to have it done.  Well guess what – nothing showed on the Mammogram, but there it was on the Tomosynthesis. That woman may have saved my life as my breast cancer was then caught early (Stage 1).

This story from Michelle from Iowa:

In the past, I got the regular mammograms, then Iowa Radiology changed to “digital mammography” several years ago.  The digital mammography always picked up things like calcifications, so every year for the past five years, I had to go back in for an unltrasound to check on something. 

This year, they introduced 3D mammography for the first time and I decided to do that and pay the extra $40.00 because I had learned that having dense breast tissue makes it very hard to see if there are any tumors in the breast.  Dense breast tissue appears white on the image.  Tumors also appear white so it can be very difficult to see a tumor. 

Even the 3D mammography did not show any tumors even though there were two tumors in the left breast (2cm and 1.8cm) very close to each other, but the Radiologist did see on the 3D mammogram a little “puckering” in one area. The doctor followed up on that, ordered an ultrasound and then a biopsy. That’s how they found the first 2cm tumor.  I later had an MRI (ordered by the surgeon prior to my lumpectomy)  which showed the 2nd tumor. 

Women with dense breast tissue should make sure their radiologist is looking closely for anything that might indicate a problem. 

I was diagnosed as Stage 2B (3 of 14 lymph nodes involved and tumor less than 5cm).

Since it is new technology, it can be difficult to find Tomosynthesis or 3D Mammography, however, more and more breast cancer centers are getting these new machines.  I would encourage you to find out where you can get this 3D Mammogram, ESPECIALLY IF YOU HAVE BEEN TOLD THAT YOU HAVE DENSE BREASTS OR DENSE BREAST TISSUE.  

On April 1, 2013, California became the fifth state passing a  law, which was bipartisan, that required patients to be told if they had Dense Breasts following Connecticut, Texas, Virginia, and New York.  Katie, one of my blog readers and a breast cancer patient, sent me this great information on Dense Breasts:

http://www.breastdensity.info/index.html

The only downside I can see to 3D Mammograms/Tomosynthesis is that according to USAToday, it has two times the radiation because it is like a CT Scan of the breasts.  http://www.usatoday.com/story/news/nation/2012/10/09/3d-mammogram-tomosynthesis/1615719/   There are pros and cons about this, but I will let you decide for yourself.   The stories of Jane and Michelle made me a believer.