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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I offer chemo hats for every budget and keep my profit margin low to help others – please check them out at http://www.hellocourage.com     CH-h4flappergrayred1