Wednesday, August 27, 2014

BREAST CANCER study - Can night light make cancer resist Tamoxifen?

Tulane's profile, which I got to by accident on Twitter, listed this study: effect of light at night on  cancer resistance to Tamoxifen in rats.   

Tulane study: Total darkness during the night 
is a key to success of breast cancer therapy.

Yes, it's only a lab study. On rats. No studies on rats are not always predictive for humans.  Yes, since it's in a lab, all they studied is probably artificial light (they mention light coming in around a door when you're not yet asleep.)  

But it grabbed me when it mentioned melatonin.  I take very mild melatonin for sleep, and there is a little light leak into my room at night.  I turn toward the wall when I get into bed because I don't like the bit of light from the window.

Even if you don't read the whole thing, consider the possibilities:  is it going too far to take precautions on the strength of a lab study?  After all, keeping the light out may make us sleep better regardless of any lab studies.  And they're not asking us to take some scary new medicine, just to turn off the light.

It might be inexpensive to do something about light coming in around the door.
You might get used to a sleep mask.
If you don't have blackout curtains, would you consider getting them? - Streetlight light and traffic light does come in around "blackout" shades.

Monday, August 25, 2014

What if it's not Aging????

I put the question mark after aging because I'm in serious doubt that my physical condition is all caused by birthdays.

1. One of my best friends is almost exactly my age, but she has put herself on a strenuous exercise program ever since I've known her.

2.  I've moved away from my old apartment where I could do a 20-minute hill climb in the morning.

3. I never could climb the rope into the second floor of the beach house.

4. I had a lot more enthusiasm and energy before Tamoxifen.

In short, I'm weak and haven't done enough about it.

Did I mention that the lying-down exercises they taught me 5 days after lumbar fusion are in many cases ones I'm taught now - just with more repeats.

The long string of doctors I mentioned on the way to getting PT was frustration much of the way.

What I wanted fixed: backaches, home-made metatarsal supports, sub-beginner balance.

What didn't help:

Two doctors thought I was in the wrong specialty office, even though I had been referred.
Two or three doctors brought up the subject of more pain medicine, which I didn't want.
Being told I wasn't good at describing my problem.
A prescription for something that I couldn't drive under influence of.
Being told "You've been walking on those feet now for . . . .years."
No one mentioned that I could try a small towel around the waist for fidgety sleeping and morning back ache.

What did help:

The last doctor contacted a physical therapy company and asked them (or had staff ask) to call me! So after two years of begging, I got PT without an X-ray.  (It has been almost two years since the spine surgery.)

Why does simple taking care of ourselves turn into a full-time job?

I wish you health.

Saturday, August 23, 2014

AGING - PT: Putting Humpty Dumpty back together

Busy morning.
For now, I'll just point to my post: ...Breast Cancer - Is PT Saving My Life?

More later.

I wish you health.

Wednesday, August 20, 2014

Breast Cancer - Is Physical Therapy Saving My Life?

    Ever since diagnosis, I've been reminded of Dr. Salwitz's Rest In Peace article, and how I was not exercising enough to protect against cancer.

After ringing the radiation bell, I had time to consider the rest of my body.  Months before diagnosis, I had requested physical therapy, but was told a PT would require x-ray, and I didn't need more of that.  My foot problems cut down on my walking, and gentle in-bed exercises from acute rehab didn't make me strong. My right thigh nerves still hurt despite spine surgery.  My balance was scary at times, and I was not strong. 

Then, maybe a few weeks into Tamoxifen, my feet seemed to spread and change in shape. Lucky accident, I got shifted to a PA one day. The PA sent me to a podiatrist.  I told him all my foot and balance worries.  He told me that my legs could make my feet burn.  He mentioned a custom orthotics man, and also told me to ask the PA about an arthritis doctor.

The PA sent me to a rheumatologist.  He didn't feel I should be seeing a specialist, but when I left, I found he had arranged for a physical therapist to call me for appointment!  And his staff gave me cards from a different podiatrist.  My discouragement lifted a little. I had something to look forward to!

Now I've had three sessions with the PT, who lavishes attention on me, works on clenched muscles, and supervises exercises.  Funny, some of those "baby" exercises from the rehab hospital are still valid; I just needed more reps and my many new exercises It's wonderful to have someone take care of me for a whole hour.

This morning, I feel better than I have for months (for instance I don't feel a hundred years old.)

The hospital, without asking me, has already cheerfully scheduled another mammo.  I really didn't want a breast issue or breast fears to interrupt my PT joy.  My affected breast still hurts with any pressure on the right (incision and mostly radiation) side.  My oncologist may have to hear my complaints about that.

Is it too soon to want to believe that PT is protecting my breast health?

Sunday, August 17, 2014

You've Got Breast Cancer - Now listen ...And listen . . .And listen

 Recently, a doctor I respect wrote a phrase about patients not listening well.  Gave me an instant blood pressure spike.  I decided to make a list of five reasons a person, especially one who's just heard the words breast cancer, might have trouble remembering and understanding a lot of the doctor's next words.  And the next.  And so many.

But I couldn't keep it to five reasons.
List of ten?  Still not enough
Now I think it's up to 15.

Do you want to add more of what makes it hard to digest all the doctor says after "breast cancer?"

Emotional and life situation overload
Fear of Death
Fear of Treatment and side effects
New situation shock
Exotic terminology
Pages of studies being speed-read to us
Cognitive load limit exceeded
No frame of reference for dealing with the life-threatening
No time to breathe or relax
Not an auditory learner
Doctors not in agreement
New doc, new hospital, even new town makes people feel powerless
Prior Medical Conditions

Send me your thoughts on this.

I wish you health,

Sunday, August 10, 2014

JUST BE AWARE - No morcellation.

View this content on The New York Times's website

Study Adds to Worries Over Use of Hysterectomy Procedure That May...

The above bit was on Twitter.  The study was in JAMA.  There has been a lot of reaction to this study. But why?

I've read some doctor groups' reactions to stopping morcellation altogether. BUT why would Johnson & Johnson take this cash cow off the market and even offer a paid recall if power morcellation was a great idea?   

Please read my earlier post or read the earlier articles in The Atlantic if the New York Times doesn't convince you.

What more will it take to make the point? No morcellation.  No kidding.

Friday, August 8, 2014


A study reported by Charles Bankhead, that I found on medpage, updated July 20, showed very little 20-yr extra benefit from contralateral prophylactic mastectomy (CPM) (removing the unaffected breast.)

The study from University of Minnesota, Minneapolis indicated only about 1% benefit over 20 years from removing the well breast--slightly higher for "younger patients."

In the Relevance section, the article goes on to cite drastic increases in doctors removing the healthy breast in patients with low-level cancers. 

More disturbing, a report from NY shows "20% of women who underwent prophylactic mastectomy from 1995 to 2005 had no risk factors for breast cancer."  I feel like putting that in very big type with !!!! Had no risk factors for breast cancer!

Also striking, Europe does not report the same significant increase in CPM that we do!   Have American women been victims of hype, fashion, family pressure, panic?  

Are American women (and their doctors) influenced by celebrity mastectomy?

It's time we slam on the brakes.  And think.

I wish  you health.

Wednesday, August 6, 2014

BREAST CANCER: Is the doctor following care guidelines? Whose guidelines?

HUFFPOST  The Third Metric

Why Variability in Cancer Care Recommendations Means You Should Consider Second Opinions  Cary A. Presant, MD

Posted: Updated: 

You may want to read some of this.

What I came away with:

A twitter post from @bestdoctors led me to believe it's okay to ask your docs if they are deviating from guidelines and why.  Do I have the courage to ask that? Do you?

And in the post:  There are more instances than we might suspect when doctors deviate from guidelines.  In regard to the NCCN cancer centers: "More shocking was that some individual institutions had 60 percent to 80 percent noncompliance rates for decisions in breast cancer patients."

No mention of whether doctors were surveyed about why they deviated.  I know each person is different in many ways--but I don't want care that was proven ineffective.

The particular guidelines he mentioned may or may not be the best.  I don't know anything about the NCCN.   I'm still uneasy about who sets up guidelines if I've never heard of them before.

"American Society of Clinical Oncology (ASCO) will be using electronic records to identify successful approaches to medical care (CancerLinQ, with over 170,000 breast cancer patient records accumulated so far)."

I've been paying close attention to ASCO alerts and comments on medpage and wherever. What I don't have are enough women I can ask if they were satisfied with their care.

I wish you health.

Tuesday, August 5, 2014

Breasts: Ultrasound, biopsy, wires-- specifics . . who decides?

 From the time I got the callback for more mammograms, I stumbled around trying not to think about it, but thinking about it. After I got my clothes back on, a doctor explained that my films were in a "grey area" and I should get a "needle biopsy." He made a little sketch to explain, and I was not enthusiastic about what I saw.  The procedure room had a sign "stereotactic biopsy." More terms, more new words, not enough deep breaths.  Another room had a big sign "Ultrasound."  Why couldn't I just have that instead?

 Last week I saw an American Medical Writers blog that said ultrasound is used to place the stereotactic biopsy needle and also the guidance wires for surgery. Since I had no ultrasound as any part of my DCIS diagnosis, I feel skeptical when people seem to feel ultrasound and mammo might be interchangeable.

I finally emailed Becky Lambert, who was the tech for some of my diagnoses including the placement of wires for my lumpectomy. (Her education and specific experience had impressed me, and at that time, she'd kindly agreed to give me her email address.)  

She answered:  (the underlining is mine)

"There are 2 ways we do Core or Needle biopsies in the Breast Center, Stereotactic Biopsy and Ultrasound Biopsy.  Stereotactic breast biopsy is Mammography-guided, using x-ray.  We also  biopsy using Ultrasound when the lesion is seen well with Ultrasound. Small calcium deposits (microcalcifications) are seen easily with mammography and not seen well using Ultrasound, so calcifications are usually biopsied using Stereotactic equipment.

Both Mammo and Ultrasound are used to place wires into the breast prior to surgery to guide the Surgeon as to what to remove.  This procedure is called a Needle Localization.  Lesions that are seen best with Mammography are localized with Mammography.  When a lesion is seen best using Ultrasound, it can be localized using Ultrasound.  Our radiologist decides which method is preferable for each situation."

Since I was diagnosed with DCIS, which can't be found by manual exam, I'm glad I showed up for the mammogram that started my diagnosis.

I wish you health.

Saturday, August 2, 2014

UPDATE: TAMOXIFEN SIDE EFFECTS - endometrial cancer hysterectomy warning update

PS re power morcellation and our female organs

From WSJ on July 30::

"Johnson & Johnson said Wednesday it was withdrawing a surgical tool that can spread cancer in women... plans to tell customers world-wide in a letter Thursday to return the devices known as laparoscopic power morcellators.  J&J already suspended sales of new morcellators"  after the FDA advised doctors not to use it. 

Maybe somebody is minding the store and looking to our safety.

I wish you health.

TAMOXIFEN : Hysterectomy no problem? Just say no to morcellation!

Yes, I have blogged before on that danger of endometrial cancer for Tamoxifen patients.  I tend to think of it as "maybe someday, probably not."  And I blogged about the social worker and others who talk of hysterectomy as no disaster.  But the "side effect" cancer that would make us need hysterectomy would certainly make me feel like adding disaster to punishment. Or, compared to metastatic breast cancer, it may be no disaster.  

Maybe.  Then I read about the doctor fighting with Brigham and Women's concerning his wife's unsuspected cancer and its spread in her body by power morcellation --breaking the tissue into small pieces for easy removal (and for speed, let's tell the truth.).  And I started noticing the headlines.

And I noticed the FDA was as concerned as I should be about even removing fibroids by morcellation.

Today, July 23/24, I found this on medpage:  

Study Quantifies Cancer Risk of Morcellation

"One of every 368 women treated with a power morcellator had unsuspected uterine cancer identified during or after their procedures, a review of more than 200,000 patients showed."  I have no dates on this study, only that one report has been issued by Jason Wright, MD, of Columbia University, NY.

The FDA earlier had advised doctors to avoid power morcellation, yet more recently avoided calling it forbidden.

In January, editors of The Lancet Oncology had said " "one in 400 risk of morcellating an occult tumor is unacceptable."

The medpage article also included indications from JAMA that the older I get, the more likely there are to be underlying 

"uterine malignancy or endometrial hyperplasia."  (The things that morcellation can spread.)''

The news whirlwind can bury this topic for long periods of time.  We can't afford to let that become 'that thing we used to worry about.'

Isn't it time to write a letter?  To call a government figure?  To call a medical society?  To Tweet?

I wish you action.

I wish  you health.