LEAVING TAMOXIFEN ...2/14

So, this last month of Tamoxifen is half over.  Developments:

My oncologist, at that last appointment when he was so hurried, ordered a chest Xray. He didn't even say why.  I think it was the follow-up after my mammo, which the mammo group urges for patients who have dense breasts. So I had the Xray Jan.10. 

It is now March.   The radiologist ( a stranger) has been paid by someone, and I owe a small amount for "not covered."

Yesterday, Feb.13, I had no more patience, called the hospital imaging dept..  They didn't seem to know about it.  (Actually I had a chance or two, years ago when I worked at CAP, to learn that hospital filing systems are not always systems.)  I got someone to look.  He called back an hour and a half later; said he found it and sent it to my doctor's office.

I called the doctor's office, finally got the desk that receives those results.  Then I had to talk her into getting someone to read the results right then.  Gold star to me for not losing my temper.    Finally the nurse read the results (since when do nurses do this?) and said it looks normal.



Yesterday had been a pile of paper to sort long before the x-ray fun.  I left the apartment for a few minutes.  When I came back, some sweet person had left me a candy cane on the door.  Changed my mood in a hurry (and I don't even eat candy.) 

PS  In my first days of Tamoxifen, before the dose was cut in half, I could never had handled a day like yesterday.  May the doctor who cut the dose have dozens of valentines!

You comments are welcome here or.

 @mlsfleming2.

Breast Cancer - Early stage: Lumpectomy - New: device may avoid repeat lumpectomy

Internet Medicine .com has posted this article from PRnews.com, a press release circulating company.  The post is titled SOURCE.

New Technology To Detect Lingering Cancer Cells During Breast Surgery

Posted by admin+ / January 5, 2015

"The Division of Breast Surgery at NYU Langone was the first in New York City to utilize MarginProbe(r) for early stage breast cancer."  

According to the post, the medical device uses " non-destructive radio-frequency spectroscopy technology . . . "  This technology searches for random cancer cells on the margins of the first specimen removed (or even during removal).  So if necessary, the surgeon can excise a bigger sample with clear margins before closing.

I realize that non-destructive is not quite the same as harmless, but I'm impressed by the possibility of avoiding second and third lumpectomy surgery.  Surgery is never completely without risk.

To read the post, go to Internet Medicine.com, select category medical devices, type in lumpectomy and hit search.

Since I know more than one person whose first lumpectomy did not have clear margins, I was very interested in this article.

I wish you health.

FIRST MAMMOGRAM AFTER LUMPECTOMY = What will it be like?

I had been told while trying to get the appointment that I had to have a diagnostic mammogram, not a screening mammogram. And with ultrasound if necessary.  I pushed the "if necessary" out of mind. The only difference mentioned on the phone between mammos was that results of the diagnostic type would be read the same day, with results ready for my doctor's appointment 2 days later.

My secret fear was that my scar would be mistaken for some new DCIS.  Okay, I also feared that judging from some mystery pains I'd been having, the mammo would be too painful.

When I arrived at the hospital, along with a couple of usual papers, I also filled out a medical history with questions of breast history, other cancer, family history of diseases.  This seemed like a good idea. One question was: dates of past breast surgery.  I put in the date for a long-past surgical biopsy ordered when the doctor couldn't tell if there was a lump.  Then added the date of my lumpectomy. I think there might have been a question about needle biopsy, which I'd had before lumpectomy..

They called me rather quickly after I got into a robe.  The mammography tech told me that a diagnostic mammo meant more films than usual, and two magnification films.  Several of them really hurt, but she only had to repeat one. She was very kind and reassuring, seemed capable.   She said she would show them to the radiologist.  I was sent back to the waiting room.  Didn't really hit me right then that I didn't know why the radiologist didn't send me home.

Very, very long wait.  Lunch hour passing. Finally someone left and I got a chair that was small enough for me.  Ate four tiny cheese crackers which of course had soy in them.

Still nothing. Nobody came for me . . .

 More about this in the next post.

DCIS - WHY MY PATHOLOGY REPORT COMFORTS ME

Today I read the NY Times article VAST STUDY CASTS DOUBT ON THE VALUE OF MAMMOGRAMS.  It gave me a few confused moments.  

It credits the BMJ editorial published with the study with saying that earlier pro-mammogram studies were done "before the routine use of drugs like Tamoxifen sharply reduced the breast cancer death rate."  

My research didn't impress me with a huge Tamoxifn reduction in eventual death rate.  Also, I was in a room with a small group of strangers for a hospital edu/lunch when one woman announced:  "I took the Tamoxifen and my cancer came back."   Since I was just starting Tamoxifen, that didn't make me want my lunch.

Of course my main interest is DCIS treatment.  The Times also quotes Dr. Anthony B. Miller, the lead author of the paper.  He insisted that there would have been more false diagnosis if the study had included DCIS.  The one thing I learned from Dr. Miller is, "' ...D.C.I.S. is found only with mammography,"'   

 Yes, I've read about autopsied women found with DCIS that had never grown or metastasized.  We don't know their ages.  We don't know what would have happened in the breast in a year, if something else hadn't killed them.  

But there are some things we do know.  Including what I saw in my pathology report after lumpectomy:

Diagnosis
DUCTAL CARCINOMA IN SITU, NUCLEAR GRADE 3
Margins of resection - negative

Number of blocks with DCIS 3 - (I checked with my surgeon; it was in more than one duct)
Estrogen receptor
Nuclear grade 3    

Nuclear grade 3, how the nucleus looks, is the punch line! Mayo Clinic Breast Books says:  ". . . 3 represents marked variation between normal and cancerous cells."  They also say, "High grade tumors have a higher rate of recurrence."

As I've said before, grade 3 plus hormone receptor made me sure I'd be getting radiation and years of pills.  Or else?  The doctor recommended talking to the radiation oncologist and the medical oncologist.  I talked.  I got radiated.  I take the Tamoxifen pills.  They aren't wonderful - my feet are swelling, and I'm not a bundle of energy or cheer.  

I'm alive.  And thanks to that pathology report, I don't think my mammogram was a mistake.

TAMOXIFEN - Second month

The medical oncologist said we should take my depression seriously, but until our June appointment, I'm taking it seriously by myself.  All I do for it during this high-pollen warning is drink forbidden morning decaf, read something I enjoy, and park far away from library and stores (parking lot walking has less pollen.) And sometimes get out the earphones and listen to music on You Tube.

The fatigue may get better when the pollen lets me walk more.  It's hard to catch a nap at a time when I haven't eaten for 2 hours (due to GERD problem.)

And today I need my weight workout - which may also help with depression.  

I'll be getting blood work, hopefully including thyroid test, but not until right before the June appointment. 

Before I met this doctor, I wrote down some notes about fuzzy thinking.  I don't remember if I mentioned it to him that first day.  And I didn't mention it last week because I had so many other questions.    Yesterday, I forgot to take two important pills, but didn't think to look in my daily pills box to see if I'd taken them.  This morning, there they were.

It's hard to distinguish between regular absentmindedness and distraction versus some pill-induced fuzzy thinking.  

BREAST CANCER . . . I was too hasty

The first few times I heard on my car radio the buzz-phrase Breast Cancer Awareness, I wanted to yell in parking lots:  We're already plenty aware of it, now get busy and fix it!

But yesterday morning while blogging, I remembered my last visit to the dentist.  The assistant wanted more X-rays but I told her no, that I was starting radiation.  She looked confused, so I said:  I have DCIS.

Frowning slightly, she asked:  What's that?  I gave her some kind of brief answer; I think I did say breast cancer.  So yes, there's still a need for awareness and education.

I'm not sure if the dentist heard me from the next little half-cubicle, but later after a quickie look in my mouth, he patted my arm and said something kind about "your problem."  

So yes, as I said a couple of days ago, people are still whispering about breast cancer and afraid patients want to keep it a secret.

But awareness is useless without analysis of the problem (including finding the cause)  and actively working for the solution.

And yes, I still want to yell in public places, but now I want to yell:  Get busy! Find the causes and get rid of them.  Fix breast cancer!

DCIS: Was I a Medical Illiterate?

I recently read an article in Proto magazine called Comprehension Test, that described some tests given to people who possibly read below sixth grade level, to see if they understood possible written directions about their treatment and medications.  

But there was more:  about people who are not medically literate, and a few words about people who are old, sick, awakened exhausted in the hospital, and so on.  (Of course, I bristle and snarl when someone groups people as "old."  One may be bewildered, hard of hearing, or with grey hair a few birthdays before middle age.) Oh, and there was a tactful mention that an educated person may still not be medically literate.

When I wrote to the editor, I called myself medically literate, because of where I've worked, what I did there, and research I do. 

Then I described the day I went to talk with a radiation oncologist and ended up with marks on my breast, pounds of literature, a permission slip I'd signed, and the vague idea I'd already been in the radiation treatment room.  Too many people telling me too much, bewilderment, sensory overload, and serious "overwhelm."  

Neither the books, the web, nor the video they showed prepared me for what would really happen that day and on one subsequent treatment day.

Do other women really search the net and make a good purse list of questions on breast cancer before they report for the "callback" mammograms?  Am I the only one who didn't demand to know exactly what would happen in the radiation center that day or later?  

How much medical literacy are we responsible for?  How much should the doctor be aware of what we are able to take in?  Who is responsible to be sure a conversation and not a speech is taking place?  

Long ago, my beloved California primary doctor told me:  It is important to be heard!  But this is not the first time a diagnosis was so serious that I needed the doctor to make sure I knew all that would happen next.




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WHO REALLY KNOWS How to Take Care of Ourselves

If you are a patient;  if you are a patient who was taught to smile and always follow the rules; if you believe you are taking care of a patient. . .

Please read yesterday's (Friday's) PULSE Voices from the Heart of Medicine:  She Sits on the Curb in Her Hospital Gown.  That patient inspires me.

Since radiation is over, I'm considered "cured" of DCIS.  But to keep breast cancer away, I should take Tamoxifen for five years.

And, for the rest of my life, I must dare to do what I know inside is taking care of myself. Please dare to take care of your soul and your need for pleasure, no matter how it looks to others.  And remember laughter is healing.  So is singing.

If you are a caregiver, let your patient dare to live in a way that takes care of himself, or herself, not just the hospital way.  Please read She Sits on the Curb. . .

PS

Falling asleep is not easy without my diphenhydramine.  Giving up my Zone Perfect soy bars is easier.  I've switched to "Oatmeal to Go" for now.  The soy milk is down the drain. Oh well, without it I'll probably drink less decaf.

DCIS - AFTER RADIATION . . . Questions and impatience.

It's easy to forget that DCIS doesn't excuse us from life's little aches and illnesses.  We've all had some sort of  "cold" this week, with scary coughs.  My inherited sinus problem went crazy, and the results were not pretty. Luckily, a vaporizer helped a lot, after I finally learned how to work it.  And I walked outside for extra humidity.  But I still feel dehydrated, and I know it's not healthy.

In the shower, I still see black marks on me--leftover guidance marks for radiation.  A nurse or someone told me not to scrub the marks and stickers!  As if I would scrub a breast that was red and tender?  Also, my lumpectomy scar is still red almost two weeks after the Boost.  The rest of my color scheme: pink on the side near the breastbone, pale on the side of the Boost. Why?  

Generic Benadryl helped me to sleep during the cold, as  always. When it wore off this morning, I started to cough again.  I worry about giving up this medicine that interferes with Tamoxifen, and yet I still have no idea if Tamoxifen will be prescribed!

Friday is my appointment with the surgeon; always glad to see him.  And then another week before I can see the medical oncologist and get some answers.  "Get some answers" seems to be the motto of the DCIS world.  

I just want the day when I feel I can "start my life."  Or at least go back to it.

AFTER LUMPECTOMY, HOPE! . . . Today Breast Cancer 2 forecast video

Today, medpage Hot topics:  Breast Cancer 2 video on expectations for 2014.  Three doctors speak on improvements in radiation treatment, and other developments that may give you hope.  New terms for me, like "molecular treatments."  Just search medpage.

Watching and listening, I got the good feeling that the radiation I received may have been a new and improved regimen.

Meanwhile, I realize I've been putting off taking care of things I know to do for the rest of my body.  Need to go to the Y and see what they have; need to go to the bookstore and look for Strong Women Stay Young; need to take care of m;y feet..

And if I get an appointment sooner with the medical oncologist, I need to power up on organizing my list of questions for him.   My excuse for both these issues is radiation fatigue, which comes and goes.  But . . . priorities.

LUMPECTOMY - THE SEQUEL . . . During the first Boost session

Thursday was a painful session.  Somehow the doctor had neglected to tell me that today's session would be longer and I would not be allowed to move the whole time.  It certainly was longer.  For someone with arthritis and tendinitis, it was like lying on the sidewalk for a half hour with arms above my shoulders in awkward positions.  My left arm and neck were in pain, despite my high threshold.

If I had known I would not be moving for so long, I would have taken two Tylenol at home first, loaded my arms and neck with pain ointment, and insisted on enough time before they started to be sure my arms would be tolerably comfortable.

This first session involved taking x-rays to mark the three angles of radiation aimed at the site of the surgery.  Take an x-ray; get it approved by the doctor, do the treatment, and so on.  Many new marks on my skin.  I do appreciate the extreme attention to accuracy.

When I got back to the changing room, I felt shaky and a bit nauseous.  Just sat in the changing room for awhile; then in the waiting room.

Then I had to go to the market.  As I was leaving there, one of my favorite radiation therapists called to remind me that tomorrow's appointment is at noon.  He listened to a little of my griping (for which I apologized) and assured me that tomorrow would not take quite so long.  I hope that's how it will be.



This morning, Sunrise Rounds post was a wonderful story about how natural it is to fear recurrence, and how we must, must work with a doctor on a surveillance plan to stay current of how we're keeping healthy.

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 - THE SEQUEL . . . Day 12 and brain fog

I really have been making a lot of mistakes since the diagnosis.   Some of them with time-consuming results.

What is really important for me now is:  thinking back to before the diagnosis and even before the callback for additional mammogram films.  Some of my mistakes that seem big actually started before the latest mammograms.  So, the confusion is not from DCIS.  For instance, an email gift wasn't received because I've always had the wrong email address in my contacts list.

Also, I told a friend (who also has DCIS) that I feel a little depressed some days.  She reminded me that this disease, and anything that starts with the word cancer, is stressful and can be overwhelming.  Add this to moving twice in two years - once to a different state- and overwhelm is practically a given.

I also need to remember the old joke, "After a certain age, mood swings don't count as exercise."

She talked with me awhile, and her diagnosis was that I'm having a "Human Attack."  She advised being nice to myself.

Also, I went into the building the other day for my radiation appointment, and in the lobby was a man a lot younger than I am, in a wheelchair, accompanied by his family.  And while in the reception room, I heard someone say to a patient, "So you'll go to chemo after radiation today?"   I need to be grateful every day that chemo is not on my To Do list.  And be kind to people who may be doing both.

What do you do when a depression elbows its way into your day?


PS Breast Cancer Action SF is having a survey on what members think the group should tackle for the new 5-Year plan.

LUMPECTOMY - THE SEQUEL . . . Radiation Day 8, life

 After the second mammogram, the days flew:  meeting doctors, feeling rushed to have the steriotactic biopsy.  I guess they still fly by, but during the day, things seem to take a long time.

I actually looked up stereotactic:  it just means x-ray guided, image guided, or mammographically guided.  I haven't had breakfast, so I'm delighted that I can spell that.

 Because of the two holidays, radiation will actually go to the middle of January!  20 days.

Last week the radiation therapist said we're advised against wearing underwire bras.  I just told him I don't wear them.  I think what prompted him to mention it is that my soft bra slides around sometimes. When I looked in the mirror Monday, I saw that the band can be pressing on the softest lower edge of the breast.  Will a new bra be more elastic, and where it belongs?

Yesterday, I took one Christmas walk.  Spent most of the day drawing and talking to my younger daughter on the phone.  Forgot to exercise with my tiny weights.  Strong Women Stay Young says I can break up the workouts into 4 20-minute workouts per week.  I haven't hit four since I've been here.  Before the spine got so bad, (seems like another lifetime) I was doing floor work every morning.  Not possible here.

The list:

Put up a big sign based on the Breast Cancer Patients Rest in Peace post* that I hope you read.  Instead of walk for the cure, my new mantra is:  EXERCISE TO SAVE MYSELF!   Talk about deferred reward!  You can't just step on the scales to see if exercise is making you live longer.

 Order a new bra, same design, but is won't be older
Order a leisure bra just in case I have skin problems before the radiation is over.

* from Sunrise Rounds  http://sunriserounds.com

LUMPECTOMY - THE SEQUEL . . . Christmas Day

Nurses all over America are working this morning, missing the wonder, curiosity, and excitement of any children in the household.  Others, are patients in those hospitals.  Or patients at home, alone or with family.

I am worried about my leg pain and wondering about the rest of radiation and other therapy.

A friend sent a letter saying she had spent much of the year in hospital, on IVs, because of an infection that probably started in the hospital during or after surgery.  Now she is in need of more surgery.

Another friend is still taking a long term painful medicine for breast cancer.

The three of us are blessed to be home this Christmas.

But medical science still has much to do.