I Am Linda

My nmbers --

8:30 am I walked into Dr. Harris' south office and I didn't even need to sign in. There stood Holly, my new best friend, talking with her colleagues. "Come on back," she smiled. 

During the delay I had a good deal of time to do some research about the OncotypeDX test.  This test returns a score between 0 -100 that represents the probability of recurrence of this type of cancer somewhere in the body, over the next 10 years.  0-7 was considered low probability.  8-31 was considered moderate probability.  32+ was the "oh shit' range. 

Dr. Harris started by sharing that my blood work was normal and I was definitely not pregnant.  Funny guy.  As he started talking about the test results I just kept thinking, "give me the numbers...give me the numbers!"

One was a 7.  The other was an 11.  My heart skipped a beat. Not a 0, but definitely not bad!   Naturally , the combined risk was slightly higher (later that day my brother helped me calculate that score --- the relative probability is the square root of the sum of the squares of each number --- for those of you who care).  That combined number is 13.

I clearly got the message from Dr. Harris that I should consider the fact that both tumors presented at the same time.  He then went on to say that choosing against a systemic treatment (chemotherapy) would be an OK decision.   Choosing for the treatment would be an OK decision, too.  I also got the sense, every so slightly, that if he was making the choice for himself, he would err on the side of caution i.e. go for it.

I, on the other had, having read and researched for coutless hours, considered not going for it to be the side of caution, especially  with these new data inputs.  In general my normal probability of recurrance would be 1% per year for 10 years ---- i.e. 10%.  The difference here --- 3 % for the combined risk, seemed inconsequential when you consider that there is concern about the possibility of causing other cancers, long term, as a result of these chemo treatments. 

I am a firm believer in the body's ability to heal itself, and I am the only one on this planet who knows what types of both external and internal stresses I was subjected to or felt over the past years that could have contributed to the failure of my immune system to fight this. Managing those factors and those stresses was going to have to be an integral part of my healing and survival treatment.

I told Dr. Harris that I was 90% sure I would decide against the treatment.  I was about to spend the 4th of July weekend with my sister and her husband, Len, a physician himself, so I figured I would discuss it with them and confirm any unsettled feelings I was having about making what seemed to be such a fateful decision. 

As I was to learn later, through reading and discussion, there is nothing fateful about the decision.  Especially under my set of circumstances.  I could choose yes and still have a recurrence.  I could choose no and still have a recurrence.  No one will ever, really know what the correct choice was.

I choose no - and no recurence, thank you very much.

A sense of normalcy

In the grand scheme of this breast cancer treatment, chemotherapy, if it is chosen, comes first.  That means that for couple of weeks I had no doctor appointments.  I had been told that the result of the Oncotype test would take about two weeks so my next appointment was scheduled accordingly. I had the luxury of having my life return to somewhat normal again.

After returning from my Dad's party there were a couple of phone calls that gave me the feeling that I might be waiting more than two weeks.  First there was the call from the lab to tell me that though they spoke with my insurance company there was a good chance that this test wouldn't be covered.  Then there were the calls back to Dr. Harris' office to let them know that it was OK to release the samples.  Then there was the 'wait' time while Dr. Harris and his MA (medical assistant) Holly were out of the office. 

Still, it  was nice to feel stronger and more rested each day.  My family, friends and I were certainly anxious about the news but in an odd way it was good to have nothing out of the ordinary to say to them.  The day of my next appointment I called Holly to check if the results had arrived. The answer was no.  I rescheduled for a week later.

This one week delay was no big deal to me.  Whoo hoo!  Another week in blissful ignorance with no doctor appointments.  I was feeling like myself again and even my friends on campus were telling me that it was good to see me smile.  It felt good to smile again.

I caught myself telling people that it actually felt good to feel normal, something I would have NEVER imagined coming out of my mouth!  When another week rolled around I called, once again, to confirm that the results were back. Yes.  Sort of....

One of the results was back, but apparently the second pathology sample had never been sent.  Though this was seemingly an honest mistake  -  after all, it was an anomoly having two tumors at once - it was a bit frustrating.  Holly was on it quickly and she was certain the result would be back the following week.  So....I rescheduled, again.

This delay was a bit of a challenge.  My phone rang with questions from family and friends.  The email messages started coming from friends who were waiting to hear from me.  It was easier for me to drop out of sight than it was to repeat the story since the more I had to retell it, the more frustrating and stressful it became for me.

Another week went by.  The morning of June 28th I called Holly to confirm.  When she called me back she had a great deal of information, but not the piece I wanted to hear.  Yes, the test was complete.  The report had been written.  But the lab is in California and the person who has to sign off on it before they could release it to her won't be in until later, blah, blah, blah.  Bottom line?  Reschedule for tomorrow. 

So I rescheduled for the following day at the Baptist South location --- I would have driven to Miami at this point.  Holly called me later that afternoon to tell me she was holding the results...she'd see me at 8:30 in the morning.

Oncology

The week before the North Caroline trip I met with Dr. Sinopoly, the radiation ocologist and Dr. Harris, medical oncology.  I learned about the radiation portion of the 'breast conserving protocol - 33 treatments,  5 days a week for about 6 1/2 weeks.  Swell.

I learned that the purpose of this therapy is to destroy any lingering cancer cells (if there are any) that may still be located in the breast tissue.  The radiation actually works to destroy the cells' DNA so it can't replicate. The bad news is that it also destroys the good cells, too.  That's why one side effect can be fatigue and my the cells undergo, quite literally, a fight for their lives.  Exercise and good nutrition are ways to combat this, so I'll be all over that!

The medical oncology approach was quite a different story.  Here again, the bilateral nature of this throws a kink in the plan.  Unless I want to treat this aggressively, taken separately, the tumors were of a size and stage and of markers that would indicate no chemotherapy is required.  Chemotherapy, I  learned, is a systemic attempt to destroy any rogue cancer cells that may have broken off and traveled somewhere else in the body.  The problem with it is that it can sometimes cause other cancers or issues and it often has unpleasant side effects - hair breakage, nausea, and a general beat up feeling, among other things.

The fact that I had bilateral tumors present at the same time was a cause for some elevated concern.  Dr. Harris and I discussed three things. 

First, hormonal therapy will be recommended.  For the next five years I'll take prophylactic measures (pills) that will reduce the amount of estrogen my body produces.  My tumors were estrogen receptor positive which means they respond to estrogen.  The theory goes, reduce the estrogen and switch off the ability of the cells to receive this hormone and grow another tumor.  (Am I the only one who doesn't get this?  If God intended me to have estrogen, why is it that this naturally occuring substance ---something my own body makes--- causes this life threatening mutation?)

Second, we talked about being tested for the BRCA1 and BRCA 2 genes. These are specific, hereditary gene mutations that indicate an increased risk for breast and other cancers.  Of course, this is an intersting dilemma because what do you do with the information?  If it is negative I ask more why questions.  If it is positive, what do I do?  A preemptive strike and remove all the parts of me that make me a woman?  Ignore it and hope for the best?  And of course, the biggest issue of all is the fact that it has affects my family members, too.  Does my mom want to know?  My sister?  Does my brother want my niece to know?

Finally, we discussed another testing option that was approved by the FDA about a year ago.  The Oncotype DX test looks at 21 different markers in the tumors and returns a probability of recurrance, somewhere in the body, over the next 10 years.  With this information we can decided if chemotherapy would be advantageous (supposedly) or not  (supposedly).  I opted for the test.Since it is new, there is a good chance that my insurance won't pay for it, but that is of little concern for me now.  If I'm not here a few years down the road, no one will collect on anything. 

I want more information.