5 Things I Wish I Knew Before Getting Cancer

For the final day of September’s Gynecologic Cancer Awareness Month and #GynCAN, I thought I’d share some of the most important things I’ve learned from my journey with endometrial (uterine) cancer this year.  Share this with the women you love—awareness and early detection are so critical to survivability!

1. Cancer Whispers

You can be completely pain-free with symptoms that are hardly noticeable and still have cancer.  But the key here is that something IS indeed usually noticeable.  Ovarian cancer has often been called the “silent killer,” but it’s actually not true—it, in fact, has many minor symptoms early on, but many women just ignore them because they don’t seem too difficult to put up with.

For me, my periods started becoming irregular and less frequent about 2 years ago.  Completely expected—I was going through menopause!  Last year, I noticed some occasional vaginal discharge and light spotting in between periods.  I didn’t think anything of it—just menopause doing its thing to throw off my previously normal, predictable monthly clock I thought.  But last winter, the discharge became a more common occurrence. Eventually, every morning I was awaking to a small spot of clear or light pink fluid in my underwear.  No all day trauma or major inconvenience, just one small spot once a day, every day.

Deep down, I knew something was changing in my body, and that this was probably not normal for menopause, but oh how the brain can trick you…especially if you’re scared of what it might turn out to be!  I let my brain “reason away” these symptoms for another month or two, and still refused to believe that anything major could be wrong.  I wasn’t in any pain.  It was just a stupid, somewhat embarrassing symptom.  A doctor would probably laugh if I had called them just for this!

Well, now I have 20/20 hindsight.

The new rule I’ve learned is this—if a new symptom persists longer than 2 weeks, CALL YOUR DOCTOR!  They’ll never laugh at you (and if they do, find a new doctor!). Occasional little aches and pains, and little bouts of bowel or urinary changes are often just a fun thing we all deal with when getting older.  But, when any of these start happening regularly, and/or in the same spot, it’s a sign that something has indeed changed in your body and needs to be examined.  A primary care physician may be fine to start with, but don’t stop there if you’re a woman.  If they cannot give you a solid diagnosis and cure the symptoms, see a gynecologist.  They are much more alert to the subtle symptoms of gynecologic cancer.

 

2. Annual OB/GYN Exams Are Important

When I was younger and dating more frequently, I’d make a point to schedule an annual exam with an OB/GYN whenever I scheduled an annual physical with my primary care doctor.  But as I grew older and stopped dating, I no longer saw the need to see an OB/GYN.  I figured a primary care doctor could do a pap smear and pelvic exam just as easily as an OB/GYN.  So why bother with 2 doctors and make 2 trips?

Now that I’ve learned more about gynecologic cancers, I now have a much greater appreciation of an OB/GYN’s role in a woman’s health.  Where a primary care doctor might do 3 or 4 pelvic exams a week, an OB/GYN might do 3 or 4 in an hour!  While skill levels are always different, you’ll usually have a better chance of an OB/GYN detecting a slight abnormality (such as a cyst or tumor on an ovary, cervix, or uterus) than if a Primary Care physician is doing the exam.  It’s their specialty and area of expertise.

Cancer is usually slow-growing and starts as abnormal pre-cancerous cells before growing to a stage 1 tumor.  Since there are no screening tests for most kinds of GYN cancers (except a PAP test for detecting many, but not all, cervical cancers), it really is worth the extra effort to get an annual exam from an experienced OB/GYN.  If anyone has a chance at detecting one of these cancers (or pre-cancers) early, it will be them!

 

3. Cancer is not just “Bad Luck” or “Bad Genes”

At its most basic level, cancer starts when normal cell genetics mutate into abnormal cells and behaviors.  I used to think that since my parents and a few grandparents had died from cancer that it was simply part of my bad family DNA that I’d likely get it too.  Nothing to do but sit around and wait for it to happen!

I’ve now learned that 50% of most cancers are preventable—50%!!!!  For my particular cancer, endometrial, it’s estimated that nearly 60% of these cancers could be prevented by women maintaining a healthy weight and exercising daily.  I had no idea!

All those years of eating on the run, or eating out of a box late at night because I’d sat at a computer all day working and had “no time” to exercise or prepare myself a meal from scratch using whole, fresh, non-processed ingredients.

A few doctors would end their annual exams with a gentle remark-- “try to lose a few pounds and exercise more if you can, but otherwise, you’re healthy and doing great.”  I was never morbidly obese, I just always had an excess 30 to 50 lbs that ideally should have been lost years ago.  If doctors would have warned me more sternly, would I have listened?  I’m not sure.  But after my first round with cancer, I’m now keenly aware of how critical a good diet and exercise are to achieving and maintaining good health.  I won’t ever neglect it again!

 

4. Don’t Buy Cheap Medical Insurance (and never go without!)

Up until this year, I’d never been admitted to a hospital and had never had any kind of surgery.  At the start of the year, I thought I’d try a new Illinois Co-op insurer, Land of Lincoln Health, and save myself $100/month over Blue Cross-Blue Shield for what looked to be the same nationwide PPO coverage and deductible.

The only risk, I thought, was that the Land of Lincoln plan was uncapped and unlimited for Out-of-Network costs.  But upon checking a few cities around the country in their provider directory and seeing a fair number of primary care doctors and hospitals listed as in-network, I figured I’d always just select an in-network provider and be fine.

All went well…until I actually needed use my low-cost insurance plan!

When confirming my plans for surgery, to my horror, I learned that zero anesthesiologists were considered “in-network” at the major hospital in Chicago I was using.  Pathologists and other ancillary in-network providers were also few and far between.  “So THAT’S how they were able to sell their plans so much less than BCBS!,” I soon realized.  Thankfully, due to my income changing last year and a special extension on Healthcare.gov this year, I was able to quickly change to a BCBS PPO plan in May just a couple days before the 2015 cutoff.

The “list price” of my medical bills from this summer are now in excess of $200,000.  That’s for a 2-day hospital stay, a 4-hour surgery, 3 short radiation treatments, and a handful of follow-up visits.  No expensive drugs, no chemo, no physical therapy.  Without insurance, the early retirement nest egg I’m living on could have taken a catastrophic hit.  Imagine if I’d actually needed heavy-duty healthcare like a heart by-pass or chemotherapy! 

The ACA rules are prompting many insurers to now look at new creative ways to skirt around the new system.  BCBS and others are now discontinuing many of their old nationwide PPO plans in favor of new regional/local EPOs and HMOs (BCBSIL notified me last week that my PPO plan will not be offered next year, so I’ll be in the same boat as BCBSTX PPO folks in searching for a new plan and/or new state domicile for 2016).  As pre-Medicare full-time RVers, nationwide individual insurance is becoming a growing major challenge.  But no matter what, I will be looking for the following in my future coverage:

• Out-of-Network benefits and capped out-of-pocket costs.  I’ll never trust an uncapped out of network policy again!
• A large, multi-state insurer able to handle out of state claims promptly.  I am still (6 months later) trying to get my initial claims through Land of Lincoln processed.  They used a 3rd-party network for out-of-state claims and the coordination between the two has been non-existent.  Land of Lincoln also turned out to be a tiny, new insurance company completely overwhelmed and incapable of paying claims promptly.  I later learned that many of these new ACA Co-ops in other states have already gone bankrupt.  I won’t trust a small, no-name company again!

 

 

 

5. Don’t Take Your Good Health for Granted!

When I retired in 2013 at age 51, all (and I mean ALL) of my planning centered around a financial plan that could sustain me for the next few decades. I never gave much thought to the possibility of having my health fail so soon.  I figured I’d have at least 15 to 20 years of good health before needing to worry about that.  After all, that was the whole point of retiring early—to enjoy travel while young and healthy enough to do so!

I learned a lot this year about never making those kinds of assumptions about good health.  I now live with the uncertainty that every cancer survivor lives with.  I can make plans to visit Mexico, Canada, Europe, or volunteer at this or that Wildlife Refuge, but I’m now keenly aware that any and all plans can be scrapped in an instant.  Good health is fleeting.  It may last me for 20 more years, or literally, just 20 more minutes!

This year, 3 of my former high school classmates have died from cancer (that I know of).  Two others continue to fight it.  I never thought this would be happening to us so soon (in our early 50’s), and yet this is the reality for an alarming number of us.

Should I be faced with death tomorrow, I now can honestly say that I’ve lived my dreams fully and without regrets.  Getting to this point has required speeding up and prioritizing the people, places, and activities that bring me the greatest joy, while I’ve let other priorities fall by the wayside to become far less important. 

I now know that good health is not only a pursuit for my physical body, but a pursuit for interacting with the daily world as well.   Life is way WAY too short to fill it with excess stress, unnecessary drama, or to be tied down by “chains” of a crappy job, crappy relationship, or too much debt and “stuff.”  Along with diet and exercise, living each day with full grace and true intention brings a level of fully-rounded contentment that I have never known before.  Life is not just good anymore….it’s GREAT! 

If you’re not to that point yet in your life, start making the necessary changes to get there.  Each small step will eventually point you in the right direction, but only if you start making that journey today.  Tomorrow is not guaranteed, no matter how many “tomorrows” you’ve already had!