My Sister’s Advanced Breast Cancer Diagnosis – Dense Breast Tissue the Culprit

My sister, Diann, has Stage 3 Breast Cancer – a 3 cm tumor that has infiltrated to at least four (4) lymph nodes.  We were shocked as it was so much more advanced than we thought.  The culprit of not finding it sooner – DENSE BREAST TISSUE.

Anyone who has read my blog for any length of time knows I am constantly preaching about DENSE BREAST TISSUE.  If you have it, you can be Stage 4 before you know anything is even going on as often tumors are not picked up on mammograms. Dense breast tissue appears white on mammograms and so do tumors.  I’ve heard from COUNTLESS women about this fact many have gotten their yearly mammograms and got the all clear right up until diagnosis.  Now, my own sister had dense breast tissue, didn’t realize it and was told only once by our family doctor back when she was having children in her 20s and 30s.  She really did not know what that could mean for her and was never told.  On her regular mammogram, which was a 3D technology/tomosynthesis mammogram which is supposed to be better at detecting tumors in dense breast tissue, an area of compressed tissue showed.  That’s all.  THANK GOD our local hospital biopsied, not because they thought it was cancer, but based on family history of my diagnosis and my mom’s diagnosis, they wanted to make sure nothing was hiding behind that area.

Well, hiding it was.   Diann’s breast surgeon at the University of Michigan says it is a 3 cm tumor (well over an inch in diameter), and she could not even feel it in my sister’s breast, and Diann is a B cup.   I mean that seems almost impossible to believe!   Diann said because of me, she gave herself breast exams weekly as she was so paranoid.  She never felt a thing.

Now Diann is forced to endure surgery, chemotherapy, radiation – thankfully, she was Her 2 Negative, so she will not need Herceptin.  They will do a Lumpectomy first, then treatment, then after the genetic testing comes back, she may opt for a double mastectomy with immediate reconstruction after everything else is finished.

This makes me MORE DETERMINED to get the word out there about dense breast tissue.  It is not something easy to talk about it.  If you post it on Facebook, some uninformed men make lewd comments – I have had it happen.  But the discussion is necessary.  Your life depends upon it.

This from breastcancer.org about dense breast tissue:

Dense breasts have less fatty tissue and more non-fatty tissue compared to breasts that aren’t dense. One way to measure breast density is the thickness of tissue on a mammogram. Another categorizes breast patterns into four types depending on which type of tissue makes up most of the breast. Still, no one method of measuring breast density has been agreed upon by doctors. Breast density is not based on how your breasts feel during your self-exam or your doctor’s physical exam. Dense breasts have more gland tissue that makes and drains milk and supportive tissue (also called stroma) that surrounds the gland. Breast density can be inherited, so if your mother has dense breasts, it’s likely you will, too.

Research has shown that dense breasts:

  • can be 6 times more likely to develop cancer
  • can make it harder for mammograms to detect breast cancer; breast cancers (which look white like breast gland tissue) are easier to see on a mammogram when they’re surrounded by fatty tissue (which looks dark).

Twenty-two states have laws that say women who have dense breast tissue must be notified.  Obviously, this doesn’t always happen.

So what to do?

1)  Ask the question of every health care provider you have if you have dense breast tissue.

2)  If you have dense breast tissue, even if your mammogram comes back okay, INSIST, INSIST, INSIST on an ultrasound.  Call your insurance company.  Tell them you have dense breast tissue.  In most cases it covers.  If it doesn’t, ask to talk to a Supervisor.  If you can’t get them to pay, do it anyway.  Make payments.  Your life is worth it.

3) If anything is questionable on the ultrasound, INSIST, INSIST, INSIST on further testing.  What is further testing?

A breast MRI or the newest technology – Molecular Breast Imaging (MBI).  I just wrote about this technology in February, 2015 as recent studies have shown it quadruples detection of breast cancer in women with dense breast tissue!!  https://denise4health.wordpress.com/2015/02/04/molecular-breast-imaging-mbi-quadruples-detection-of-breast-cancer-in-women-with-dense-breast-tissue/

PLEASE, I beg you, have this conversation with your doctors, with your mammogram provider, and with your friends.  It is absolute hell to watch my sister go through an advanced breast cancer diagnosis.  It is far worse emotionally than my own diagnosis was.  You do not want any one you love to go through this when it could be prevented.

Breast Cancer Strikes My Family Again

My only sibling, my sister, Diann – not just my sister, a best friend to me, a confidant, a mom of three, a young grandma, was diagnosed with breast cancer this week at age 55 – the same age I was when diagnosed.  I am  absolutely devastated as is the rest of my family, especially her kids.  As many of you know, my mom was diagnosed just last June, 2014 with breast cancer.  I was diagnosed in October, 2011.  We are all that is left of our nuclear family.  My dad died from pancreatic cancer at age 65.   Especially, I feel for my 81 year old mom who lost her husband to cancer, is a breast cancer and melanoma survivor herself, and now is now forced to watch her second daughter fight breast cancer.

Diann and I took one look at the doctors face as she entered the room, and we knew before she told us.  As we sat in the same place at our local hospital where all of us received “the news”, no one could believe it, including the nurses and doctors.  I feel so distraught, more than I did with my own diagnosis.

So once again we are forced to face this.  The only thing that makes it easier is we know what to do and who to call.  My Oncologist agreed to take Diann as a patient even though he is not currently accepting new patients, and my mom’s surgeon will perform whatever Diann needs for surgery.  We will be putting thousands of miles on our cars making the drive to the University of Michigan Comprehensive Breast Care Center in Ann Arbor, Michigan.  The geneticists at University of Michigan thought it was a fluke that both mom and I got breast cancer.  When we made the first call to the Breast Care Center, the nurse said, “I have already put the geneticists on alert.”

It baffles me because family trees on both sides of the family have been done back generations, and no breast cancer on either side of the family.  How did three of us end up with breast cancer???   Did the relatives just die young before they were diagnosed.  Did they have huge tumors in them when they died of something else?  Was it environmental?  Did I grow up in a cancer cluster?   Was the electric tower across the street from my neighborhood the culprit, or what?  The questions keep swimming in my head.

My sister and I are very different.  She is very private, while I didn’t hesitate to blab my cancer journey to the world.  Diann trusts her doctors and doesn’t want to read much about her diagnosis (although she will not know much until next week).  I read everything I could, and in retrospect, most things I should not have read.  Diann likes to stay busy and will probably try to work as much as she can during whatever treatment is necessary for her, while I had to process things more quietly.

Diann will have to face this journey alone as it is one lonely journey as many of you know firsthand.  I already promised her I will not try to force my way of handling breast cancer unto her, which as the older sister, is always my temptation.  Everyone keeps telling us it is good Diann has me to help guide her.  That may be true to some degree, but every cancer journey is entirely different.   Certainly, I know this from hearing from thousands of cancer patients.  I’m just so angry…I didn’t want Diann to be one of them.

My family would appreciate your thoughts and prayers.  So many of you are like family to me and have become friends over the years…Thank you!!

Honoring Alma Sanchez on Triple Negative Breast Cancer Day – March 3, 2015

Alma-Daughter (2)Hello Courage and denise4health honor Alma Sanchez on Triple Negative Breast Cancer Day on March 3, 2015.  Alma wrote her story on my Blog for 2014 Triple Negative Breast Cancer Day.  Her story, a young mom only in her 30s with triple negative cancer went viral.  Then Alma received the devastating news, a few months after her blog post, that she now has Stage IV Triple Negative Breast Cancer with metastases to her lung.

https://denise4health.wordpress.com/2014/03/03/triple-negative-breast-cancer-a-young-moms-story/

Alma is the most courageous woman I know, and I have been fortunate to meet plenty of them – so many of you are beyond courageous!   But Alma stands out – her faith, her courage, and the fact that even with her first go round with cancer, she had to fly from her city in Mexico to Houston for surgery and other medical visits.

When Alma was diagnosed as Stage IV, she was in a chemo-based with experimental drug Clinical Trial in Houston– she and her husband flying back and forth once again so she could be with their small daughter, sometimes so sick she didn’t know until minutes before if she could board the plane.   Alma would leave the hospital chemo chair and go to the airport.  Alma’s cancer had progression during the Clinical Trial in Houston.  These flights are outrageously expensive.  Plus, because she is going between countries, her insurance often does not pay for coverage which results in staggering medical bills.

Alma is awaiting confirmation for a Clinical Trial in Los Angeles because Alma and her husband NEVER GIVE UP and are amazing, courageous, and inspiring people!     Alma is a woman of great faith.  Alma’s faith and courage shine through.  I literally just got this message from Alma while I was writing this, so you can see for yourself!!

From Alma –

“Hi my friend! I’m right now traveling back to LA! They still don’t have official confirmation from Genentech (the company behind the Clinical Trial) but they told me I don’t have anything that could exclude me, and they scheduled me for tomorrow to receive treatment. They think they’ll get confirmation today. We are taking a leap of faith, and we are now flying through 2 airports in Mexico and 2 airports in the USA to get to Los Angeles. Pray for me, dear friend, that I can receive treatment tomorrow…and that it works for me…not only because of me, but for the millions of women who today need a better treatment than chemotherapy . Trusting God, we start this new journey.”

Please say a prayer for Alma and her family as this next round of Clinical Trial challenges begins.  The Clinical Trial that Alma will be participating is an immunotherapy clinical trial which hopefully will prove to be a major breakthrough in Triple Negative Breast Cancer and many other cancers.   This video does a fabulous job of describing how it works!  Thank you, Alma, from all of your breast cancer sisters, past, present and future.

http://blog.biowebspin.com/dan-chen-pd-l1pd-1-pathway/

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!

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Molecular Breast Imaging (MBI) Quadruples Detection of Breast Cancer in Women with Dense Breast Tissue

Molecular Breast Imaging (MBI) could save your life if you have dense breast tissue.  New studies were recently released that confirms that it is nearly four times as effective in detecting breast cancer in women with dense breast tissue:    http://www.sciencedaily.com/releases/2015/01/150123101604.htm   NewTechnologySign I did not know this technology existed until about two months ago, even though it has been around for several years.  Not many hospitals have this technology.

On my Facebook page, I posted that Susan G. Komen of NW Ohio had grant money available in my area for uninsured or underinsured women for mammograms.  A friend saw the post.  Her husband lost his job, and they have been without health insurance for quite some time.  She had not had a mammogram in two years which greatly concerned her and found she was eligible for the mammogram.  At the small hospital where she had the mammogram, she was told she had extremely dense breast tissue. so they wanted her to go to a much larger hospital (Promedica Toledo Hospital) for Molecular Breast Imaging (MBI) which would also be funded by Susan G. Komen of NW Ohio.

My friend went for the test not knowing what to expect other than she was told dye would be injected into her bloodstream and mammograms would be taken with the dye present in her system.   Here is a good explanation of what occurs:    https://www.karmanos.org/?id=517&sid=1

My friend said the test consisted of four images and each one lasted seven minutes.  She said the hospital staff did many things to make her as comfortable as possible.  She indicated that you sit for the test (some technology has you lying down), they had a television and reading material while the test was being administered to help distract you.   The Radiologist told my friend that the previous mammograms she had since age 35 were virtually useless in her case because her breast tissue was so dense.   The Radiologist saw “a small spot” on the MBI and immediately gave her an ultrasound.  She finally got the “all clear” and the Radiologist told her after the test was completed, that she would need Molecular Breast Imaging (MBI) technology every year for breast cancer detection purposes.  My friend is so grateful that her care was not “short changed” because she was on a Komen grant.

In this video, Dr. Christine Granfield, a Radiologist, gives her view on Molecular Breast Imaging: https://www.youtube.com/watch?v=q-1KIevhwao

So women with dense breast tissue, please take note of this test and pass the word to others!!  I’ve received so many emails from women with dense breast tissue that were not diagnosed until Stage 3 or Stage 4 because their tumors went undetected.  If you have ever been told you have breast dense tissue, I urge you to talk with your doctor and see if this technology is available near you.

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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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The Financial Burdens of Cancer – Part 1

If you were recently diagnosed with cancer, the feelings are absolutely overwhelming.  The ongoing thoughts that go through your mind after whether you will live or die, are finances.  Will I lose my job, will my insurance cover my medical expenses, who will take care of my family, will I have to file bankruptcy, will I have to go on welfare, will I lose my house, my car, will I ever be able to work again and the playlist continues over and over in your head.  It is beyond terrifying.

financial_burden_need_moneyWhen I was diagnosed, I felt all of those feelings as I was single and self-employed without any sick time or short and/or long term disability benefits.  Looking back with the old, “If I knew then what I know now”, I give this wisdom and advice:

1)  INSURANCE:  Most of us have absolutely no idea of what insurance coverage we have for a catastrophic illness like cancer.  Who knows if your insurance will cover all chemotherapy drugs (some are $20,000 or more per infusion!), blood transfusions, port placement, for example, the drug Herceptin for one year ($60,000), or a compression sleeve?  Most of us never even heard  these words before diagnosis.   Ask your hospital to check with your insurance company to make sure they are “in network” before you start treatment.

I made the decision to go out-of-town to the University of Michigan Cancer Center because I felt my life depended upon it.  When I called my insurance company, they said University of Michigan was out of network, and I would have to pay 40% of my medical bills, which would have resulted in over $100,000 or more of additional medical expenses. YIKES!  I called the insurance office at the University of Michigan Cancer Center for their help.  Within days, with their help in convincing my insurance company I needed their care, my insurance company agreed to pay my medical bills 100% except for deductibles and considered that hospital “in network”.  LET SOMEONE ELSE FIGHT THIS BATTLE.  If you go to a large hospital, they have staff that deal with the insurance companies so you don’t have to do so!

Also, because I did not have prescription drug coverage, the Neulasta shot was not covered.  Neulasta helps increase your blood counts after chemotherapy and costs on average $4,000 to $9,000 PER SHOT!!  A cancer patient may need as few as 4 or many, many more shots!   However, my hospital said if they administered the shot the next day with me as an out-patient, it would be covered.  It entailed my driving another 120 miles round trip on the day after treatment, but it saved me $36,000 for the four shots I needed!!

There are also very expensive anti-nausea meds, Emend, which costs $100.00 per pill.  If you do not have prescription drug coverage, the hospital can give it to you intravenously which has a much longer effect, and then most insurances will cover it.

There is a program for cancer patients who have high co-pays for drugs such as Neulasta or Neupegon – if you have high copays, check this out for help in paying those co-pays:  https://amgenfirststep.com/

2)  HELP: Ask your most detail-oriented and computer savvy friend to help you find what services are available to cancer patients in your area. Upon diagnosis, friends and family ask how they can help you.  PLEASE take them up on their offers as you need to practice this new and difficult skill of accepting help.    Many don’t qualify for state welfare benefits, but other help is available no matter how small.  It all helps!  For example, I just learned that in my city there is a new program for cancer patients and their families called Nightingale Harvest. The only requirement is that you are in active treatment.  You need a note from your Oncologist–then they provide food, cleaning supples and toiletries to the cancer patient and family throughout treatment free of charge.  What a marvelous charity!

While I was undergoing chemotherapy,  my hospital put me in touch with an organization that gave me $300.00 in gas cards based on miles driven to and from treatment.  Their only qualification – undergoing cancer treatment.  I will never forget their kindness.  It still brings tears to my eyes when I think about it.

Here is a compilation of numerous organizations that provide help to cancer patients:

http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/

3)  BEYOND HELP – If you are in a situation such as you have no insurance coverage, have no savings, lost your job, or any other dire situation, let friends and family help by either setting up a fundraiser or an online fundraiser such as http://www.gofundme.com   or  www.youcaring.com   to raise money for you and your family.   Please don’t be too proud, as people do want to help you!

4)  CLEANING – Most cancer patients have very little energy and especially no energy to clean your house.  Cleaning for a Reason is a service in the USA and Canada providing cleaning services to cancer patients while in treatment. http://www.cleaningforareason.org/

5)  MEALS – The best thing friends and family can provide are meals with food a cancer patient can eat.  This varies from person to person.  This website offers a free calendar where friends and family can sign up to bring meals to the cancer patient, and then sends email reminders to the patient and the food preparer!   www.mylifeline.org

6)  PERSONAL CARE – Many organizations offer things such as massages, reflexology, relaxation, emotional health, and other classes for cancer patients and their families.  The hospital where I received radiation treatment, provided me with a weekly massage at no charge.  It was a great comfort to me.

7) FAMILY TIME – One amazing organization, Little Pink Houses of Hope, provide vacations to breast cancer patients and their families.  For more information, go to:   https://www.littlepink.org

8) AMERICAN CANCER SOCIETY –  http://www.cancer.org  The American Cancer Society will put you in touch with help.  They also offer a free program for female cancer patients…Look Good, Feel Better.   http://www.lookgoodfeelbetter.org    I attended and it helped so much!  They provided makeup and skills to help you cope during treatment, like how to draw in eyebrows.  I HIGHLY recommend attendance at this free class.

You will make it through and things will get better.  But in the meantime, ask for help and accept help to relieve some of the financial burdens of cancer.

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