The Right Way, The Wrong Way, and The Mayo Way

I have officially been diagnosed with Stage 4 cancer since June 8 of this year.  So much for summer, right? Breast cancer is an entity all of it’s own.  There are so many subtypes plus the grade and stage for each individual person.  My cancer is estrogen positive. 91%.  I am slightly progesterone positive, and HER 2 negative.  That is partially how they determine which drugs to use for each person.  There is now another fairly new test that is basically a blood biopsy.  These microscopic tiny cancer cells just flow around in my body until they decide to settle somewhere and continue to grow.  Mine settled in many of my bones.  They have been wreaking havoc in my spine, femurs, hips, pelvis, and possibly my arms and lower legs, but they don’t scan those areas.  Why?  I have not a clue. So, once your type and location and stage and grade are determined then your oncologist will decide on the best treatment plan for you.  I have an amazing team at Roger Maris. Dr. Mark Gitau and his team of PA’s, NP’s, and RN’s are top notch.  They are also kind, compassionate and tolerant when I feel the need to send questions multiple times in a day. 

However….I went to Nursing school in Rochester and did my clinicals at St. Mary’s and Mayo Clinic.  Mayo sits in high regard with me.  They have an entire team of oncologists that deal only with breast cancer treatment, then there are other groups doing breast cancer research and clinical trials.  They truly have their finger on the pulse of all that is evolving in the treatment of breast cancer.  So, I called and asked how to go about getting a second opinion.  Once I had a treatment plan in place here at home, I called them back and let them know.  From there it was as simple as filling out some online forms, hippa docs, and ROIs.  They requested my pathology slides and looked over those along with all my medical scans, tests, and history.  That all culminated in a 45 minute video call with one of their oncology docs.  They agreed on everything except wanting to make what she called a small adjustment.  The small adjustment was changing my oral chemo med. Somehow that felt pretty big to me. I had just finished my first 21 days of Ibrance and was starting my week off chemo, so it was a good time to make a change.  Of course, first BCBS insurance had to sign off.  Ibrance comes in at $13,000 per month.  My new recommended drug, Kisqali comes in at roughly $8000 per month.  Seems like a no-brainer….but not to the insurance person sitting at their computer sipping on a cup of bad coffee….they need to complicate it by dragging their feet and asking for more information.  Fast forward a couple weeks and I just yesterday started the new drug. I also take IV Zometa every 3 months for bone strengthening and Fulvestrant which is a hormone blocker given by injection.  It is a thick solution and is given via 2 simultaneous injections in my hips every two weeks for 3 doses and now every month.  Because my cancer is 91% estrogen positive, I have a better chance of having many more years…it is easier to treat because they can take away it’s food source,(estrogen), while killing off what is already living in my body. 

How long does treatment typically last?  Forever. For the rest of my days.  I will never be not on chemo again.  That feels strange.  Here’s how it works…your first treatment plan is considered your first line of treatment.  When your every 3-4 month PET scan indicates it is no longer effective due to cancer progression or some kind of side effect emerges that is causing more harm than good occurs, the oncology team will come up with another treatment plan…and that becomes your second line of treatment.  There are approximately 5 courses of treatment using oral chemo and hormone blockers.  From there you move on to IV chemo and/or radiation or even surgery in some cases. 

I have joined some online support groups for women going through stage 4 breast cancer.  There are so so many women that are dealing with this…young women with small children, women who are on their fifth line of treatment in the first year and women who are still on their first line of treatment after 5 years.  There are a handful of women that report having been on chemo and battling breast cancer for over 20 years.  That gives me hope.  There are women that hike and bike and ski and travel.  That gives me hope. 

All of this has left me with so many questions….why are so many women getting breast cancer?  Is it hormones added to food?  Is it something environmental?  Is it better medical testing to find cancer earlier? 

And then their is the pink ribbon campaign…be very cautious of the pink ribbon groups asking for donations.  Until very recently something close to 80% of all funds raised went towards research for early stage cancer.  Women are not dying from early stage…they are dying from end stage.  Any company that wants to slap on a pink ribbon to their merchandise can do so…maybe they give a percent of their sales…maybe they don’t.   And the whole “Save the Boobies” or “ save the TaTas” Fuck that.  Save the woman. 

And then let’s touch on the medical expenses someone in the country incurs when diagnosed with Cancer. You better hope you have insurance…if you don’t,you might qualify for Medicare once diagnosed with Stage 4 cancer…that kicks in exactly 2 years after your diagnosis date.  So..do the math..approximately $10,000-$100,000 per month depending on if you need surgery, chemo, radiation, or additional meds and treatments for the side effects…would you be bankrupt by the time that there Medicare comes around…or maybe they are counting on you being gone by then?  What is the rationale? Women in other countries get the same meds and the same treatments for way way less money.  Do they pay higher taxes?  Maybe, but isn’t that worth it?  It’s time we start taking care of each other rather than being good old selfish money hoarding Americans. 

But that’s just like, my opinion. 😎

My motivator.  Granddaughter Hadley…I refuse to not be a part of her life.

What $8000 buys you.  A month supply…damn worth it to save my life and thankfully BCBS said yes to paying for it.