Wednesday, December 31, 2014

Friday, December 26, 2014

DCIS - ultrasound after post-treatment mammogram

Still at the hospital after three hours with no news about my diagnostic mammo results or about why  I was still there. . .Hungry, ate four miniature cheese crackers.  No one knew how to work the space-age waiting room coffee maker.

Finally a staff member took me down the hall and into the ultrasound room. I was getting worried and asked her why I was there.  She was the tech. I remembered that ultrasound could help differentiate between my lumpectomy scar and any new problems.  I asked her about that and got a got a long  vague answer with "We do this all the time."

She made me lie down and open my robe, put on the gel, and started.  The scan took a long time.  She was pressing harder than I expected - had never heard that ultrasound hurt.  It did.  Since she was using a lot of the scanning pressure near the nipple, I also asked her if she could see the scar tissue from the long-ago surgical biopsy. I don't remember what she said.

She finally said she would give the results to the doctor. She propped me halfway on my side without enough to cover me, then disappeared. As I got colder and colder, I had plenty of time to wonder what they were deciding about me.  Lying on my left leg was painful.  Then she stuck her head in, said the doctor was with another patient.  Left again.  Perhaps they were having lunch?

I called out, but no one heard me.  She came back again.  I asked why I had to lie that way if the doctor wasn't around.  She informed me it was because the doctor would scan me and it was "for our convenience.'   I assured her we were way beyond "their convenience" and tried to pull out the lumpy robe under me and the pillow behind me.   I reminded her I was cold.  She got me another small towel and and another tiny sheet.

Finally the doctor arrived and apologized for the wait.  She told me I had a thickening area that hadn't been there before.  (Before what?)  She started scanning again near the nipple but also all over. I asked if she was seeing the scar tissue from the old surgical biopsy - told her that the entire nipple area had been taken out (later nicely replaced) and I didn't know how much other tissue.  She asked the tech if she was seeing the scar tissue.  Then the atmosphere seemed to change.  She soon stopped scanning, gave me the usual cautions, and let me go.

I think the doctor had had no idea about the old  surgical biopsy scars, in spite of the fact that the scar around the nipple is clearly visible to most medical people.  And in spite of the fact that I had that morning put the date of the old biopsy on the cancer/breast history at intake. I don't think anyone showed the history to her.

I got dressed, grabbed a tiny pack of cookies for lunch, and went back to the admission desk to get a copy of the history I had filled out.  The desk clerk went off in the direction of records. I was too worn down after four hours there to ask if the history had been dumped into records and never shown to the doctor.

Why am I telling you this?   In my case, a doctor urged me to tell the hospital administration my experience,  He also recommended another place to go for the next mammogram.

When I forget to take care of myself, I'm not the boss of my medical care.  I hope you will speak up early and often at the hospital.

Feel free to tell  your ultrasound experience here, in a comment.  I wish you health.



 


Thursday, December 18, 2014

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.


Wednesday, December 10, 2014

BREAST CANCER - DCIS and. . . . new study: Does radiation prolong life

NPR Shots on the 9th published a new article on the Duke radiation studies.

                       Doctors Are Slow To Adopt Changes in Breast Cancer Treatment.

A Duke study in 2004 had indicated that radiation, for women over 70 with early-stage breast cancer, did not improve the mortality rate. They did not live longer.

NPR, in referring back to that study uses the word "chemotherapy."  Do they mean also adjuvant therapy like Tamoxifen?  Or what we typically call "chemo" now?

Why do I care?

I am in the over-70 age group.  
My DCIS was radiated, and I am on adjuvant therapy (Tamoxifen).  
No one mentioned "chemo" to me.
I took the Sloan-Kettering (MSK) interactive nomogram:
It only predicted DCIS recurrence, not years of survival.   

NPR then quotes a new Duke study and article announcing very little difference since 1994 in percentage of doctors radiating patients with these cancers,  Are there new reasons for radiating now?  Are they radiating women who before 2004 would have had chemo?  Are the odds of survival without radiation just too unclear and too hard to calculate?

This has been written and debated on the web lately:  Nobody wants to make a mistake by telling someone to wait and see.  And probably no one wants to be the one who says forget radiation - just in case.


Why did I get radiation?

My surgeon said after surgery that I didn't have to do anything.  
But he recommended I at least meet a certain radiation oncologist.
Said she wouldn't give me radiation unless I needed it.    
She overwhelmed me with statistics.
My pathology report made me fear recurrence

I need to learn more about the 2004 study (chemo or not) and the new one..

Please::  Send in your research, experience, or reactions as comments.

I wish you health.

Thursday, December 4, 2014

Cancer Clinical trials #s, Cancer patients will watch research and vice versa

Ohio State University (OSU) Wexner Medical Center is getting a new cancer center, already popularly known as The James. The center is expected to open December 15. 

The headline of the Modern Healthcare article:  OSU puts researchers face-to-face with cancer patients, tells the story perfectly. 

It refers to one amazing new development: glassed-in research centers "on every patient floor" so patients will see real research in progress.

Since these researchers are not in ivory towers, but in glass labs, they will see the patients suffering with effects of, and existing treatments for, cancers that need research done well, and soon.


Also in the article are figures on clinical trials from Dr. David Schuller of OSU that surprised me: " 'Only about 5% of adult cancer patients participate in clinical trials. The National Cancer Institute has set a goal to push that number to 20% patient participation at cancer centers receiving its financial support,' "Schuller said. The clinical trial participation rate at the existing James hospital is 27%, he said.


Monday, December 1, 2014

Breast Cancer - melatonin, darkness, another study

If you missed the Tulane sleep study post, didn't agree, or are still curious:

Found this in USA Today article on breast cancer in the military, which branched off into their take on cancer causes...One was:

Shift work. "A 2012 study of Danish military women is just the latest connecting night-shift workers with breast cancer- for both those in uniform and their families. Researchers found those working the swing shift were 40% more likely to face diagnoses. They suspect the suppression of melatonin that comes with sleepless nights may also inhibit the body's ability to fight off cancer-causing cells."  (bold highlight mine.)
.
This reminded me that I haven't figured out how to alter my sleep mask.

Also reminded me that I can go back on melatonin.  The semi-monthly "time out" period is over.

I wish you health.