CANCER TREATMENT - Who's the boss?

Today Jeff Haden popped up in my email from LinkedIn to announce an article called:  Your Boss is Happier Than You.  Maybe I read it because I've had a couple jobs where I was rarely happy.  

I saved this quote - hope he doesn't mind my using it here.  

Engagement and satisfaction are largely based on autonomy and independence. Just like a boss, I care more when I'm in charge and feel empowered to do what's right. 

That reminded me of how many articles I've read on medical sites that complained about patients not following their medication plan. And hospital committees formed to make patients follow their plan!

Since I needed a post for today, I went to KevinMD., and found a different kind of article:  When Something Natural Does Indeed Work, by A Country Doctor, MD.  It is a story about cooperation between a doctor and an older male patient.  Real cooperation.  The patient felt some of his medications were doing him harm.  They discussed it, and planned what to try.  His health soon suffered from giving one up. Instead of insisting, the doctor came up with an alternative, a medicine I've heard of, made from a plant.  Success!  

On the DCIS treatment, I've been lucky.  The surgeon suggested, did not order, that I meet a radiation oncologist and a medical oncologist. The radiation oncologist insisted I believe her about unlikely side effects.  But she did say radiation was my decision.  

When the see the medical oncologist this week, I'll have to talk about some medications I take that supposedly don't agree with the medicine I think he will recommend.  And I'll remember the problems others are having with one adjuvant medicine.  I want us to cooperate.  And I do want this to be my decision.  

I want to go back to real life, and be in charge, not in fear.  

  

LUMPECTOMY - THE SEQUEL . . . Famous decisions--the other side of the story

I've read plenty about a surgeon and a film superstar and their double mastectomies. I know the surgeon had been diagnosed with breast cancer; we've all heard the superstar's reason.    I don't mean to downplay what they've gone through, but I also knew they could expect world-class care.  Now I read that their stories have started a clamor for voluntary double mastectomies.

I was thinking tonite (Thursday) about the dangers of what they have gone through, as well as the benefits.

And I have often thought before about why lumpectomy is simply called "breast preservation" or similar names.  To me, lumpectomy, when it's the standard of care, is the way to avoid an incredible amount of danger of infection, not to mention pain, dangers of major surgery, and lengthy, difficult convalescence.   I've shuddered at the stories:  frantic daughters of mastectomy patients tracking down nurses, and insisting, "Give Mom her shot.  Now!"   I'm glad I've been spared for now from being that suffering mom.

I had nothing to say with any authority about this question, so took a break, went to KevinMD, and lucked into an article by

Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries.  

I clicked The Crab Diaries, and found her cautions on that very subject - possible reasons not to choose a double mastectomy and when or why not.  She is a wonderful storyteller and you may want to read.that January 2 post, Primum non Nocere..

My suspicions are confirmed, and there are even more reasons to think very, very carefully about voluntary double mastectomy for yourself or someone you love.

LUMPECTOMY FOR BEGINNERS . . . in the radiation room

If your DCIS is low grade and you are an older patient, you may want to go to http://www.medpagetoday.com and read  some of the  peer-reviewed article on radiation findings.

Yesterday, after I agreed to radiation, they gave me a gown and took me to the treatment room.  I saw a shiny black, low bench, definitely suitable for an upscale bus stop.  They settled me on it with a fresh blanket, and positioned my arms above my shoulders; my tendinitis was not happy about this.  Overhead was a lighted mural of branches and colored leaves.

As my girlfriend predicted, there was a strange, lumpy pad under my upper torso.  This takes a specific mold of where my shoulders, torso, and arms will be for every treatment.  

I mentioned my sinus problems, and they smilingly said, If you have to cough, cough upward.  They told me if the cough moved me too much, the machine would stop.

Then the tattoos--more road signs for the radiation.  Just three tiny needle jabs with some sort of permanent ink.  This keeps the marks from coming off in the shower.  

At some points, the bench rolled me back with my breast area under a metal arch.  Apparently this is where the radiation comes from.  It is perhaps less than a foot thick, like half a big, skinny donut, so I was not really enclosed.  Note to self: not claustrophobic.  

The whole session was comfortable and non-scary, and the staff were kind, happy, pleasant.

After I got home, I found a paper in my folder saying that the first visit Monday would be a half hour, and if I wasn't comfortable in the position, I should take a Tylenol an hour ahead.  

LUMPECTOMY FOR BEGINNERS - The other F word

My friend was right.  It is a shock to hear the word cancer on the phone or in the doctor's office. My supportive neighbor says I'm handling it well.  I don't talk about fear -- but now I'm thinking about it

Learning about the steriotactic biopsy was Fear and resistance - the procedure sounded barbaric to me. And yet it went well and I had a good time at the hospital.

And I was able to compartmentalize about the lumpectomy.  I trusted the surgeon, and after all, I've had plenty of successful experience with surgery.  I didn't even feel fear beforehand.  Maybe the doctor's telling me he had said a prayer was a help.

Then the post-op two-week appointment!.  (The surgeon had told me when we met that he would recommend I see a radiation oncologist and a medical oncologist.)  I read the pathology report again, more thoroughly.  Nothing on the report, as I've mentioned, gave me any hope of avoiding radiation.  So after we talked a little about the incision and the size of the specimen, he gave me the paper with the oncologists' contact information, and his reasons for choosing them.  

 I went home and put the contact information sheet in a red file.  I talked with my neighbor, I blogged about when to call the radiation doctor's number.  I reminded myself that she couldn't make me do anything I don't want to do.

I focused my research, still a lot of it from Mayo Clinic, on radiation.  I read other women's stories, and I felt Fear.  I made a list of my radiation concerns and felt FEAR.  I quoted some things, and felt FEAR.   I included a list of medical conditions I already have, and the one thing I've shared with friends:  how many x-rays I've had.  

I copied statistics from Sloan Kettering on how much longer I would be free of cancer if I had radiation and certain long-term meds.  They were compelling.  But . . .

There is a pattern here:

 In spite of having lost a best friend to cancer, I'm obviously more afraid of the treatment than I am of getting more cancer.  Or is the Fear of cancer buried so deep that I don't feel it, and so huge, that I don't dare feel it?