Wednesday, December 20, 2017




1        My doctor knows who is good at mammograms.

2       The mammo group he recommended (after he heard my experience at a local hospital) has new equipment and they know what they’re doing.  They have enough good MammographyTechnologists so I can be in and out before I start imagining things.

3        I wait with others who've just done their mammos, in warm comfort  

4.      THEY LET ME KNOW SOMETHING BEFORE I LEAVE!   .  This makes me more likely to make an appointment because I know I will leave there with information instead of imagination.)
This also  lets me schedle my scan a short week before I see my wonderful oncologist; I know if the news is unsettling or just plain bad, it will only be a few days before I can see him.

5       Mammos are primarily what they do in this local unit.  It helps with coordination and makes me more confident that they know their stuff.

.       I take care of myself.   I remember before all mammos to remind them I have scar tissue from a long ago surgical biopsy of the same breast that is focused on these days. If they make you fill out a breast surgery history, insist on a copy to take into the room with you.

OTHER SCANS & Pictures


      PRIVACY:  If nurse comes in for you, insist on talking heavy stuff in the hall! ( At the hospital:  Nurse stood in doorway, told woman she would have to go to another area because she needed two procedures instead of one. This was a hard surprise for her to hear, probably scary.)  

    BIG SCANS  like MRI:

1       Talk to someone who has had one.  My boss told me she thought of tunes that the pings fit into, so it wasn’t just noise.  Ask her what you need, like ear plugs, nerve meds, or whatever.  And ask if you’re going to be warm enough – I get chills for no particular reason.It was only my lower trunk because of the spondylolisthesis and I knew the loud bongs wouldn’t be in my face.

2       I luckily had a great guy pushing my gurney – he spoke to me, offered ear plugs and asked if I’d been offered anything for my nerves.  I didn’t ask if I’d need a blanket.   If no one asks or offers, you must ask for what you want.

So;   Try to go in knowing what you may want.  Go in determined to ask (nicely) for what you think you need.  /And remember some things aren't worth fighting for.

Sunday, December 10, 2017


When I left the medical bldg after my very, very tardy Prolia shot (talk about being allergic to the world for some weeks) I was handed a fistful of orders for things to do.  And I knew one of them was for a new breast exam - typing this I get a mental blind spot...oh yes, it's called a....mammogram.  I blame the blind spot on my age not on voluntary amnesia'.

Another order was for bone density, but I was only curious about that one.  The annoying part is getting no results until I see my oncologist, who handles my bone stuff these days.

I've read a lot about scanxiety today to see......what?  To see if my pushing mammo thoughts out of my head is normal.  It's normal:

To think of my friend in another state, and how she hasn't told me yet if she really is refusing treatment from now on.

To think of my best friend from my beach days, who died too young of breast cancer that the mammo of those days did not find. Or was it no different from the one I get tomorrow?

And to realize some things I'm doing that I didn't want to do, and sorta did want to - like some drawing.  I can obsess on that and forget that I'm maybe hiding from the mammo.

To make these days more interesting:

We've had bad weather lately, the kind women formerly from CA do not drive in willingly. Like there were still sturdy hailstones on my car the second morning from snow storm two days ago.  But now it's balmy forecasts for this week.

I scheduled Onco Dr.  for Thursday, so if the mammo people tomorrow think they see a problem, I only  need to wait from tomorror to Thursday to talk to him.

I remember I may have been the only person who really, really hated the stereotactic biopsy that revealed the DCIS, the only good thing about it was meeting the ultra-qualified imaging guide for that, who is from CA and super nice.  And going to Starbucks afterward.

But also I remember how much I hated the phone manner of the doctor who said "there was cancer."

I have good thoughts, like: the lumpectomy surgeon is a good guy and I don't even know if he's still practicing,

And my oncologist is kind, friendly, respectful, and....the first day I was filling out paperwork to meet him, a woman next to me said You got the good doctor!  And he is.

ChaChing advises us to accept a result we may not like:  If I don't like tomorrow's findings, I couldn't have a better doctor, better friends, a wonderful daughter here in town.  But Money for miracle drugs ...not so much. 

I've had some really kind , really skilled doctors so far.  And I know some amazingly kind cancer survivors here.

That's a start.

Saturday, November 18, 2017

OVERTREATMENT - Who's guilty/? Who suffers?

Rich Duzak, MD on TW referred to this article/study:;

Overtreatment is Common, Doctors Say, which referred me to; Findings were that "over 20% of all medical care" was unnecessary"

Their numbers were specific enough to make me examine some of my past care memories:

"22.0% of prescription medications",  
Yes, I did leave a doctor due to too many RXs for pain killers, and no RX for physical therapy.  Have you ever left a doctor for prescription reasons?

"24.9% of tests"
Cancer has come into my life more than once, but I'm inclined to believe the endless biopsies I've received were probably all necessary, and so was a slight surgery performed during one biosy.

One of my current MDs agrees with my negative opinion of a certain test I took, and agreed with me Rabout another that I don't want.  Recently my primary MD gave me a chest Xray because my allergy cough was so bad I couldn't drive.

Have you ever left a doctor because you felt you were getting too many tests?

And here's no surprise:  The doctors responding to the study were not the first to blame part of the #s of tests on pt demand.
Have you ever "forced" your doctor into a test he didn't think was needed except to let you win or calm you down?

 "and 11.1% of procedures."  
This one made me a little queasy:  More than a little.  Most procedures are just plain NOT reversible. More scary, they can leave us in worse shape than before, or (face it) dead.

Then the AHA! moment:  "More than 70 percent of doctors conceded that physicians are more likely to perform unnecessary procedures when they profit from them,"

And they give specifics, like unnecessary spine surgery (I think mine was probably necessary, but I've read often of others that were not and are not necessary.)

The study senior author, Dr. Martin A. Makary, a professor of surgery at Johns Hopkins., mentioned a couple other typical surgeries that may often be unnecessary. 
In all my reading, better training is all I remember ever seeing suggested to lower these figures.

In a strange town, or after an accident, we may need more safe choices.  
Has your doctor ever mentioned this overtreatment problem?  Has he ever told you that a surgery you suggested (or insisted on) for yourself was unnecessary?

But surrounded by familiar faces, how do we know what's necessary?   Oh...

The Second Opinion?

Friday, October 27, 2017


New in town, I sulked my way thru a huge grocery market.  Why don't they have the food I always bought at home in L.A.  You know, regular food!

Then, out of the corner of my eye, I noticed a pair of silver shoes - not your ordinary silver shoes. Not silver sneakers.  Glittering, new, company-for-dinner-flatware, blingding, fairy-tale movie, smooth leather slides.  I wanted to laugh, sneaked a look at the wearer to see if I might get slapped. We both smiled, then laughed.

The gorgeous young woman said "I was almost afraid to wear them." 

I assured her it was the perfect decision, and insisted:  There are times when it takes such a completely unlikely, unimagined, fun perspective to blast away a clunky, who-needs-this kind of a morning.

I wish you smiles.

Tuesday, October 17, 2017


  Writing the Surgery post, I got a short reprieve from the real picture. I thought those steps and sources and questions would help us get the doctor we want.  Then a 5 yr old NY article re-issued re  Twitter, from one of our most famous doctors, threw cold water on my hopes.

Dr. Atul  Gawande sees our chances of getting an excellent doctor as definitely not guaranteed.  The article, THE HEALTHCARE BELL CURVE is subtitled "What happens when patients find out how good their doctors really are/"  And as I read on, it seemed to I had to face ..or how good they aren't.  Dr. Gawande, as he makes clear in his book, BEING MORTAL does not sit in an ivory tower and tell us what to think.  He travels to the places where medicine is or is not practiced in excellence.

He draws us in with the first chapter of a story of  a sick little girl, Annie; who we find has been taken to the famous hospital that is the very wrong one for her. 

Then we learn why it's so tough to find a find doctor:  The Bell Curve--how does it look?  "What you tend to find is a bell curve: a handful of teams with disturbingly poor outcomes for their patients, a handful with remarkably good results, and a great undistinguished middle."
 He doesn't expect complete perfection nor movie miracles in impossible situations.
  "What one really wants to know is how we perform in typical circumstances.   After I’ve taken out a thyroid cancer, how often do my patients have serious avoidable complications? How do my results compare with those of other surgeons?"

How can we stay away from the poor or worse ones?  He tells us it's not easy to get the facts: 
The results of their treatments is hard to get - in some cases hospitals and specific illness groups don''t always keep track.  And keeping track is hard to do, in part because of privacy laws.

Attempts to keep score by number of deaths also doesn't impress him--there are emergencies and uncommon variances.  But sometimes differences by hospital, for example, are unexpectedly dramatic.  "A Scottish study of patients with treatable colon cancer found that the ten-year survival rate ranged from a high of sixty-three per cent to a low of twenty per cent, depending on the surgeon."  And that's not the only disease with scary differences.

Maybe the doctor we're considering doesn't even know where he is on the curve - so what will we get when we ask? 


If you don't want to read the whole story of records & and improvements in CF, Annie's disease, at least you might like the story of how a CF doctor in Gawande's "good" example, deals with a very young patient who's been backsliding, and how he makes a deal with her, and gets her back to safe self-care.

It's a happy ending.  Shows us in an action what can be done.  But where does such care fit into  our  fifteen-minute MD visits?

Of course, we want good hospitals,and good doctors who have the best knowledge, and who can think. 

We can't just hold on, live with that cancer or whatever we suffer from, until our medical schools turn out more greats, and the answers:  my brother died while doctors admitted they were keeping him alive until a better cure became available.  We want more hospitals that let the best doctors do what they need to do, when they need to do it.  


Sunday, September 24, 2017


Surgery!     .  You may already be a surgeon's office.  You called  because something is very wrong. .   The surgeon who is talking to you now may already have a plan.     .He (or she) starts talking about what will happen.  This can make us think it's decided. But we must ask our questions, answer some of his, and be prepared

 To say that's all we can handle for today
 To tell him we will want a second opinion.  
To stand up, thank him and 
Walk out.

Surgery for most is permanent and risky.  Do-Overs do not fix what's been done, and we won't get 0ur money back. If you don't read all this, please at least read the last section.

A recent AARP  article "PICK THE RIGHT SURGEON subtitled Act as if your you choice is a life or death decision--because often, it is."  convinced me to work on this.  The writer, Linda Marsa emphasizes that any thing with knives can have "life-threatening complications."

Some state medical groups police their doctors.  My state medical board has punished some.  But doctors don't always police themselves.   A pub-med article lately said some doctors don't reveal bad doctors because they think... nothing would be done about it, or there's a "fear of retribution."

The good news: her quote from ProPublica:

  "One group of 756 highly active surgeons
 didn't have a single complication over five years."

Later Marsa suggests such great results should happen oftener, quotes a study for one kind of surgery, death rates 4xhigher for those who performed fewest of a certain surgery compared to those who performed the most.  (Doctors have even tweeted that doing a certain number of times counts.)

Also she ssays MBJ finds that specializing in one demanding complex surgery type "significantly cut the risk of complications and mortality."  So we ask a lot of questions like: how often, and is it your specialty?

She also has other places to search:

For credentials, the Federation of State Medical Boards has  Click Consumer Resources
     For reprimands -for $9 they will give you disciplinary history
     Some state med boards have doctor profiles
For  surgical board certification, certification, or call: 866-ASK-ASMS.
For specific errors, Consumers Checkbook or Pro Publica.  Remember some doctors take on very difficult patients which may affect their success numbers, while others take the easy ones. 

MD Referrals:  With the spine surgery - my primary doctor  knew everybody. I took his suggestion, and the spine has been great.  But another time I didn't take his first choice because I had met that surgeon and didn't like him. And my rule is:

Nobody I don't like is cutting me!  Period. 

 If you are new in town, you may not even have a doctor or a few friends to ask for recommendations.  If you're working, there might be someone you could cautiously ask.
A co-worker led me to  my beloved L.A. doctor.

 At the dentist, in the mammography place, in the drug store, keep your ears open:  I was lying on a gurney in the hospital hall once when a nurse saw the ticket on my gurney: Ooh!  You got Dr. G.  He does fancy!   Yes, Marsa admits - hospitals don't always kick out bad surgeons.

She suggests "Identify surgeons approved by your insurer."  I haven't tried that.

So it is possible to get a good one.  One more suggestion:

The hospital referred me to the solo lumpectomy surgeon. He did a good job, answered questions, told me I didn't have to do anything further, showed me my path report, gave me referrals including the oncologist I love.

Once you've got a name or three,  Do Not Skip This Section.  This is where we pin down the surgery facts way before our Yes or No.

Ask and persist until you get answers:

Can this be done with minimally invasive surgery - like laparoscopy or...?
What percentage of these involve open surgery?
What percentage of these have complications?
 Is hospitalization involved?
Do you specialize in this surgery? 
How many of these have you done?
What are my risks?  And above all...


Then as Dr. Cedrek McFadden's Tweeted:
"If no common ground or respect is found, move on." @cedrekmd

Sunday, September 17, 2017


Engineer, Air Force brigadier general, and surgeon: Michael Yaszemski, M.D., Ph.D., re time after last rites as he awaited surgery:

“I flipped a coin and it stayed up on the living side,”

 Mayo Clinic Discovory's Edge This week

Saturday, September 16, 2017

COLD MEDICINE - what's in it, good or not so good - COFFEE BREAK

On twitter this morning:  on a site Compound Interest

A picture chart (whatever they call them now) on what's in cold medicine and how does it work by Andy Brunning

You can see the picture on..... click this:

I wish you health

Friday, September 8, 2017


"If you’re paid by the test, you’ll conduct more tests."

A little thought for our coloring books of what's wrong with our health system

Thursday, September 7, 2017


 A couple of women on Twitter drew attention the past week to this September 1 article in Telegraph by Laura Donnelly.

NHS rationing bodies refuse to fund treatment which stalls breast cancer 

According to the article, The National Institute of Health and Care Excellence said there was a lack of evidence to prove that the drug called fulvestrant extended lives.   

Studies that said fulvestrant "stalls the cancer’s growth by around three months" were seen as weak on research. 

Also NHS  feel it is too expensive compared to other available drugs. So over a thousand women will apparently not get the drug until it is studied further. 

The article says Fulvestrant is "licensed for women with oestrogen-receptor positive cancer, who have not already had other forms of hormonal treatment."  (my bolding)

Right there I began to find different takes on the drug as used in the states.

 Medline Plus for instance seems to find different rules on who is eligible here for the drug:  

"Fulvestrant is used to treat hormone receptor positive breast cancer (breast cancer that depends on hormones such as estrogen to grow) in women who have experienced menopause (change of life; end of monthly menstrual periods) " and whose breast cancer has worsened after they were treated with antiestrogen medications such as tamoxifen (Nolvadex). (Bolding mine.)
Fulvestrant is also used in combination with palbociclib (Ibrance®) to treat hormone receptor positive breast cancer in women whose breast cancer has worsened after they were treated with antiestrogen medications such as tamoxifen (Nolvadex)."

Also "Fulvestrant is in a class of medications called estrogen receptor antagonists. It works by blocking the action of estrogen on cancer cells. This can slow or stop the growth of some breast tumors that need estrogen to grow."

More specifics from
"Fulvestrant is approved to treat:  Breast cancer in postmenopausal women. It is used in patients with estrogen receptor positive breast cancer that has metastasized (spread to other parts of the body) after treatment with other antiestrogens."   There it is again!  Not for use here as a woman's first antiestrogen. 
So  who should get it as the first antiestrogen, and who should not.
Aside from who should get it, I found notes on what it does from

On this site, Tamoxifen, which I take, is explained  as a SERM -  drugs that bind to estrogen receptors, keeping estrogen from binding with them.  Serms are also versatile, acting as estrogen agonists in other parts of the body.  
BUT Faslodex/fulvestrant is presented as a different substance entirely:  "However, unlike SERMs, fulvestrant has no estrogen agonist effects. It is a pure antiestrogen.
 In addition, when fulvestrant binds to the estrogen receptor, the receptor is targeted for destruction."    (my bolding)

Those last three powerful words from an American site might be interpreted as hope or ammunition for argument by the women who are protesting the refusal to use fulvestrant without more testing.  

Who is right?  How could we ever know?  

Wednesday, August 23, 2017


When Rik was dying, we were neighbors.  I could hold her hand for hours if she wanted.

Judy is far away.  Can  you send a holding hand by mail?

Maybe she has more time
     at least this time...

Monday, August 21, 2017

MAKE YOUR OWN MEDICAL RECORDS - Before the doctor's office...

Recently I had the mother of all sinus allergy attacks.  I was actually coughing and sneezing too hard to drive.  It taught me that a tissue in each hand can make me forget all I need to say.  Things like what to tell the doctor and what to ask the doctor.  And showed me how careless I’ve been.  Even with my rules:

Keep meds list updated
I update my grocery list daily. But Meds list - the really important one - not very well.   
Mine didn’t have my new eye meds on it.  And it was too complicated. Need to simplify.  Since I’m absentminded, I leave on it some meds I no longer take (with a line through them.)  Just in case somebody wants to give me an Rx that once caused me trouble. Or one I’m really allergic to.

Take your meds list everywhere including to the doctor’s office and drugstore.
The doctor and the med assistant may need to scan it (It’s amazing how office computers eat half or all of my file including pills & meds (like the ones I don’t dare take.) If you drive, a current meds list in your glove box might be worth doing - might copy mine & put it in today. And keep a current one in whatever bag you take with you for a hospital test, especially  outpatient surgery.
Take a list of the questions you should ask (especially if I’m too sick to pay good attention)
Questions like:
What’s wrong with me?

Why do I need this test.    How much will it cost?
 (I asked why a chest Xray, should have mentioned I’ve had a five-year pneumonia shot.)

What medicine(s) are you giving me?    Is it expensive?
Is it a pill. Or pills?  How do I take it (some pills I can’t take) He explained.  (More on that later.)
What does it look like?  He showed me the little packs
Is it a steroid?   Since I took them, I’ve had reasons to wish I had asked that question!!

Write down what he says
If you’re as old as I am, you may hate having your daughter go in with you to see him, but my daughter’s writing is readable, MINE? NOT SO MUCH.  And she asks intelligent questions.  (If your doctor looks AT AND TALKS TO your daughter instead of to you, you can ask plainly to be spoken to directly. (Some doctors have not learned that.)

It’s hard to make myself ask these questions.  But I know asking could save me.   Drugstores, and busy doctors, even mine, are not perfect .)

In the past I have been sent home with the wrong labels on pills. (Luckily I knew what they should look like).
I have also been sent home with wrong, incomplete or missing instructions.  Some pill bottles are so small that instructions are on a sticky flap that falls off way too soon. You may have had that experience.

Yes, people even a lot younger than I am, take off glasses or contacts, and just think they know which bottle is which.  And yes, some people can’t afford the glasses they need to read microscopic drug store label print. A friend bought a 4-inch flat magnifier for those occasions.

 I don’t want to take the wrong pill, or take any pill four times a day instead of one time.

 I have a shiny red folder for each doctor for all this stuff.  It cost almost nothing.  Do it.

Thursday, August 17, 2017

Breast Cells discovery on Twitter

"Researchers Identify Estrogen Receptor Stem Cells In The Mammary Gland"

Monday, July 31, 2017


I’ve always had allergies.  When I was a little kid they called them colds. As an adult, only time I didn’t have them was during my wonderful 19 months living at a California beach.  I moved; they came back. The doctor was baffled. They seemed too bad to be allergies.

Then I moved to TX.  And for the first time, the whole nasal thing got infected.  Antibiotics. They cut the infection, not the endless sneeze/cough, runny nose.    

The second year, it was worse. So much coughing and sneezing I couldn’t drive.  The doctor said he'd send two scrips - each day I'd take fewer pills, and in a week I'd be done.  I got two tiny boxes.

When I unwrapped the fashionable “pacs” the first was a Prednisone compound.  No. Uh-uh.  Back in the box. But I was miserable, so I took them.  The antibiotic was amazing.   The steroids were not. The coughing kept on until the tissue showed a few traces of blood with the cough.  After several phone calls, I got the promised cough syrup.  Not enough help. The doctor’s office called and asked if the meds worked. I told them I was at the same place I would have been without the meds.

Mom used to say after disappointing medicine 
 "Either this stuff is no good, or I would have died without it." Hmm.

About a week after the steroids were all gone, the Surprises began.

Suddenly I got red areas sort of like athletes foot ON my palms.  (I have blepharitis- Try taking care of your eye infection with that on your palms!  Put on clotrimazole.)

Same week, I had too many errand in the hot, hot car and no place to park in the shade.  When I got home, the sweaty area at the edges of my hair, and on my neck itched wildly. I got patches of streaky itchy hives and even a couple of bumps. The next day, I still had big itchy red areas when I woke up.

I remembered a dermatologist’s words when I was very young:

..."I think you’re allergic to your own sweat."

 I combed the web.  New words: > Dermatology

Cholinergic Urticaria

Updated: Apr 04, 2017 Author: Robert A Schwartz, MD, MPH; 
“Cholinergic urticaria is one of the physical urticarias brought on by a physical stimulus. Although this stimulus might be considered to be heat, the actual precipitating cause is sweating.” 
I changed my routine, stayed in during most of the day   .But I had to make a decision:

I’m due for the next Prolia injection.  Prolia admits even on the web site, that it CAN affect the immune system.  Feeling nervous, I cancelled the Priola for now.  

Steroids should slow the immune system when it over-reacts to something simple.       But HOW long until the immune system is BACK TO NORMAL?,   

Go back to the doctor?  I don't want to be in any med waiting rooms with sick folk. I wear a med mask to the grocery store.  Scared?  I didn't go to Starbucks for a month!  And when I did get there, suddenly a big group came in.  I was too freaked out to stay  

Home –lifestyle?  I can't get the indoor humidity below the upper 50s, which is not good for respiratory problems.  And I itch.


Friday, July 21, 2017

BREATHING EXPERIMENTS and a Surprise Kindness

Ever since I moved here, I've had a silent, internal battle with the yard maintenance crew.  More than half of every Friday, their machinery, some of it oversized scatters dirt and whatever pollen for my allergies to inhale.  So I stay indoors.

This morning, after a month of scary allergies and scary meds, I decided I had to walk.  So I rushed out to try for one lap before the yard guys would arrive.  I was almost back when I saw a friend coming with her walker, and heard the hated sound of a yard man starting some machine.

When friend and I started to chat, the machine was silent.  She went on.  He didn't start his machine.  We exchanged Good Mornings, and he didn't start the machine until put my allergy mask on and was well past him.  After I got inside, I was sure he waited out of courtesy for us.  One kindness like that can change my view for the day. (And once before one of the crew had shut down a machine when I approached with a tissue over my nose.  Sad how I forget those kind gestures.

Monday, July 17, 2017


FDA News Release  seen on TWitter

FDA approves new treatment to reduce the risk of breast cancer returning

For Immediate Release

July 17, 2017


The U.S. Food and Drug Administration today approved Nerlynx (neratinib) for the extended adjuvant treatment of early-stage, HER2-positive breast cancer. For patients with this type of cancer, Nerlynx is the first extended adjuvant therapy, a form of therapy that is taken after an initial treatment to further lower the risk of the cancer coming back. Nerlynx is indicated for adult patients who have been previously treated with a regimen that includes the drug trastuzumab.

Tuesday, July 11, 2017


My allergies were calm this morning just long enough for a question to rear its ugly head.

I've been checking the calendar so I won't miss the Prolia inj at the end of this month.

And I actually want) to take the next bone density test, but secretly plan it for after Prolia inj #4 has had a chance to work.

The question I shouldn't face right now is:  What if that right hip isn't better?

I've always been sure that I believe in Prolia.  But there are plenty of things patients and doctors believe in that turn out to be.....not infallible.)  I like Prolia, because I am impressed with how it works in the body.  Short version - it does its work and then goes away.

The pills on the other hand grip onto one's bones and may be hard to dislodge.  Like Bondo on a hole in your car (ask your boyfriend.  He may give you a lecture on cars, but he'll probably like that better than a plate of pancakes.  Okay, enough on Bondo.)

The doctor has already hinted that because I already had osteoporosis when I started Prolia, I may have to take more Prolia than these four shots.  Will I do that?

This question will not be answered until Prolia shot 4 has had a chance to act, and the density test results are out.  Probably in August.

Now my fear of authority figures is in play. He's the authority figure here. I feel guilty if I wait for the density test.  And  I still tend to think that if the doctor wants more Prolia, I'll have no choice.   That can be a dangerous attitude for a patient to get.

This was going to be a 3-sentence post.  Oops.  At this moment I don't know.  If the hip isn't better, I may agree to more Prolia.   Not because he's an authority figure, but because I trust him and want him as my doctor.

I still remember that first day in his waiting room when the woman said, "You have the good doctor!"