Breast Cancer 1 six-month update - progress

The BC 1 six-month update short video is available now on medpage. 

Listening to Dr. Larry Norton's portion update made me wish I had more education.  (I read a bit about dose-dense Bc therapy on OncoLink.) Your own oncologist may have some comments on Dr. Norton's report on ovarian suppression with Tamoxifen, results possible this year,  and  on pro dose-dense chemo issues.  

What I was listening for, of course, was more from Lisa Carey, MD.  At the beginning of the year, Dr. Carey brought up our immune systems and also the differentiation among breast cancer cell types.  In this update, she again mentions cell subsets and the current consortiums seeking appropriate  treatment for various types.  It may be a year before there is more on that.

 Most encouraging was the news that in the next few months, we will have more news on how our own immune system's response to the cancer affects the treatment.  

STILL WAITING FOR AN APPOINTMENT? And waiting and waiting

Just saw a NYT article on this subject that reminded us that experts are suggesting more doctors. And some medical columns suggest alleviating the shortage by opening the gates (raising the bar?) to more doctors educated outside the states.

My favorite doctor of my life was educated in Canada.  He goes to the trouble of learning what works and what doesn't, and who gives great care, or doesn't.  Another favorite doctor of mine continued his education after coming to the US in two specialties. My first time in his waiting room, another patient said:  "You have the good doctor!"

But a doctor I'm thinking of leaving was not educated in this country.   And in my post about inadvisable surgical Bc biopsy, I noted that a survey had found one characteristic of doctors overusing this procedure is that they are educated outside this country.

So the quality care situation leaves me thinking that continuing to learn after arriving in the US is a factor.  And perhaps you suspect, as I do, that the other main factor in good care is the doctor's personal decision to learn continually what works.

Dare I suggest that doctors get enough information before they recommend a doctor new to the US (or any other doctor.)  Using the same hospital is not enough information.

Another doctor shortage factor:  I amazed to learn how many intelligent people think all doctors, not just certain specialists, are getting rich.  Primary doctors were having a hard time and getting poorer when I worked at CAP in the nineties.  And they're leaving their practice of medicine.

So:  What should I be doing about long waits to get an appointment?

1. Writing to the White House to get more pay and less keyboard "paperwork" for primary care doctors, so the good ones won't continue to leave medicine!

2. Writing to everybody I can think of to insist that doctors coming to the states are examined, trained here in methods that work, and monitored.  

3. Asking for referral to a different specialist if I have specific doubts about the current one.

4. Then praying that doctors who were trained here are still learning what works.

Everybody Is For Universal Design, but "not at our house right now"

There's a country song (or maybe several) on the theme: Everybody Wants to Go to Heaven, just not right now.  

And we're on record pro-universal design, but later, after we pay for our photo-op tub that is not non-skid, pay for our nostalgic faucet handles like the ones Granny had that she couldn't turn when arthritis struck, after we pay for our sport coupe that we couldn't get into or out of without help when we hurt our back.  

As far as getting out of that tall, tall, clawfoot tub when pregnant, I wish I could show a video of that here.

I worked for nine years in a business that also sold bath and kitchen equipment.  For every starry-eyed prosperous young couple who bought kitchens and baths there, there seemed to be several couples long into middle age.  Sometimes really long. . .

I sold some pots and pans to a woman in her eighties who told me she still skied.  She may be okay in the trendy bathrooms, but I remember snow as a lot softer than ceramic tile when  you fall down.

Pretty and and elegant, maybe even nostalgic, can be useful, safe, and universally right.  Bathrooms, kitchens, halls, and entries safe for any age and any state of athletic readiness (or lack of it) don't need to shout "old, pitiful, and crippled."  And don't get me started on hospital design. . .

Picture your favorite romantic, perhaps French, apartment building or town house.  If the guy who designed those lacy, intricate rails were alive today, couldn't he design a grab bar that doesn't look like it came off an eighteen-wheeler?  

It's just cheaper to manufacture a one institutional-looking grab bar that shouts "hospital," get it approved for use, and sell a billion of 'em.  It's the modern way, right?  

And after all, we're not sick right now.  We're not old.

HOSPITALS: A patient looks at bathroom design and groans

Seen in Healthcare Design June 25 - An article on improvements in hospital bathroom design.
A photo chosen to go with the article was a great disappointment from a patient's point of view.

Vanity: sharp handles at thigh height
There ARE sharp corners
A slimline basin would allow patient see in the mirror without glasses, for face washing or flossing Mirror should extend down to basin level, so a patient can see her own scar or whatever
No caddy for hair dryer or other items for patient who cannot bend

Needs hand rests or arm rests for patients on toilet or to help stand after toilet
There are grab bars for only one hand
(I made things more useful than this for myself in the rehab unit bathroom  - pulling a "potty chair next to toilet, not only for an arm rest, but because it is healthier to push down on something to help get up than to pull down on something.)

Bathing:
Nothing to hold onto en route to shower
No seat visible in shower within reach of telephone/hand shower
NO place for towels near the shower
No apparent depression to drain water and avoid slipping and soaking slippers
And please don't say the hospital has a portable bath seat for every bathroom - never happens.

Also, I don't see anything here about warm and cool bathroom temperature, and especially fresh air, which was scarily absent in rehab and a couple other hospitals.

It can be better than this.  And it should be better.

BREAST CANCER: When is it okay for a nurse to say this: . . (a rant)

In the medpage article a week ago, on lack of lymphedema awareness, Dorothy Pierce, RN, a radiation oncology nurse and author of a small study, is quoted as saying:

'"Either the surgeons are not [telling them about lymphedema] or the patient is not listening,"'

 I need to say:  any announcement that the patient is not listening is one announcement too many.  I have to wonder respectfully if perhaps Nurse Pierce has ever been diagnosed with breast cancer.

What could make the patient seem not to be listening?  Maybe shock from the news? Maybe too much med-speak? A million statistics?  Maybe information overload? 

With breast cancer, the voices have already started:  "You need to report to the Breast Center for more films; you need to talk with the doctor; you need to come back for a stereotactic needle biopsy."    You need to come back to the hospital and meet a biopsy doctor, (so I did.)  You need to, you need to, you need to. Long before lymph is in the picture, the overload begins.  We learn that the nurses and doctors know a lot of words we don't yet know, and they aren't all expert at explaining.  

After the biopsy, in my sleek flapper-look compression bandage, I went out for coffee.  But reality was closing in.  Then the phone call.  The doctor who had done the biopsy sounded so cheerful when she said "There was cancer."  Three words that can feel like the world changed - and maybe it did.  

And she said:  Call Dr. H., we work with him all the time.  Another doctor. Steriotactic biopsy (which I now know I was lucky to get) was only the first of a landslide of new terms, some  explained well, some not. We get a book, we get on line, we get written and audio overload.  We learn that no two famous cancer hospitals agree on everything.   

Luckily a kind survivor and friend said to me after my DCIS was diagnosed: 

 "Hearing that word cancer is overwhelming."  

As I've repeated here, I was so overwhelmed by the first day at the radiation center that I thought the simulation room was the treatment room.  No one in the crowd around me even looked in my eyes to see if I heard during the quick tour.    

We are paying attention to how to deal with our families, our bank balance, the idea of other new doctors we may have to meet. We are trying not to think "Am I going to die?"  

Only the doctor or other provider who is talking can be sure that a conversation, not a lecture, is taking place.  That is a skill.  Their long speech followed by "Do you understand" often provokes a Yes, as in "Enough!  Let me alone."  We may think we understand, then get home with more questions, too tired to try to get the doctor on the phone, if indeed our doctor talks on the phone.

We can't absorb a quickie medical school in a couple of visits. We listen. We try to pay attention.  

The great doctors and nurses, and people like my two beloved radiation therapists, know how to pay attention to us.  

Tamoxifen at 75

I already felt old some mornings before I filled the Rx, but not like this.  Someone told me Saturday I looked tired, and I wanted to say, Honey, you have no idea.  Instead I bought some suntan-look powder makeup.

The days are full of questions:

Did I throw the scissors away or is this the Tamoxifen?
Am I really this exhausted?  If I take a nap, will I sleep tonight?
Did I forget to return that exercise mat? 
If I hadn't read certain major hospital sites, would I feel this bad?  Or is it the power of suggestion?
Would I feel this way after more months off soy?  Or is it Tamoxifen?
Am I in the ladies room so often because of giving up soy?  Or is it old age?

Worse questions
Is this distractedness Tamoxifen or creeping senility?
If I stay on Tamoxifen, will this kind of thinking get worse?
With the pills and without soy, will I wake up soon looking 95?  
How will I get another job if I look 95?


And the very worst, most scary question:

Will my family think I'm getting senile?


What I Do When It's Bad:

I try to remember symptoms from before Tamoxifen.  For instance:

I was overwhelmed at the start of radiation-- thought the simulation room was the treatment room. I had hot flashes in the 90s, whenever I didn't eat on time.  
I had a few "tired spells" at times (just not so often) when I got here--I would just nap.
There were some aches and pains before I started taking this stuff.
Before and after spine fusion, I was so restricted--maybe my body is finally yelling for exercise.
I have arthritis, and it can hurt. 
I remember that I needed the suntan makeup before I started these pills.

What I Tell Myself:

Is it unbearable?  (Of course not.)  Am I okay enough for today? Yes.

My medical oncologist is the one I would choose out of a crowd; and I'm blessed to be alive.

I wish you health.

BREAST CANCER: Surgical Biopsy, Yes or No? and effect on lymph nodes

A medpage OncoBriefs in mid-June included excess surgical biopsies and what caused women to get them. 

According to the article, a large review of cases showed that various characteristics of doctors, including their age and where they trained, can be predictive; as can some patient group factors such as Medicaid.  (Do Medicaid patients have mostly these pro-surgical-biopsy doctors to choose from?)

I learned that the needle biopsy (after having one, I'm still not resigned to calling it a needle) was pronounced a reasonable standard of care back in the nineties, by such august groups as The American College of Surgeons.

Dr. Smith is quoted as saying:  "Still, too often in my practice, I see patients ... after having an excisional biopsy performed for diagnosis, when they obviously could have had a needle biopsy."

On the effect of those biopsies, later in the article Dr. Smith raised the topic that is everywhere I look lately, lymph nodes: '"An open surgical biopsy actually makes lymph node biopsy less accurate -- and lymph node status is the most important factor when making critical decisions about adjuvant therapy."'

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