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.

 

Breast cancer, DCIS: Questions I wish I had asked

There are questions I only think about after I get home after a doctor's appointment, when the doctor has gone back to his Houston office or on a vacation.  I need a "question reminder note" pinned to my mitten like a little kid, or to my car sun visor.

And sometimes I don't realize what I should have asked until I fill out the patient feedback questionnaire.       The questions are sometimes general/all purpose but important.  Other times I don't have enough information from any research to know what I should ask:

Specific to breast cancer:  Looking back, the first day of the boost was worse than all the rest of my DCIS treatment by far.  How could have guessed what to ask,  what to expect.  I wish I had had a crystal ball.

 I would have asked the radiation oncologist (or my regular radiation therapist, who was better at talking to people:)

Exactly what happens that's different on the first day of the boost?  Please be specific.

What's the longest that first boost treatment can take?

My breasts are heavy and not firm:  will this complicate the first day?

If I had pressed for details, maybe I would have been prepared for an unfamiliar radiation therapist, rushing in and out, uncovering me endless times, changing my position, making adjustments. At the same time one of my regular therapists on my other side would be taking films to see if they were on target.  If I were a woman with five young kids, all this rushing around (combined with a really painful arm) might not have given me the shakes.

(Oh, and also: What medicine can I keep at home in case an itch develops without warning?)

And are any of my activities limited?

Good questions I did ask the surgeon about lumpectomy:

What will I be like after the procedure?

What will I be able to do?

Can I lift my little weights?

 Again, only with a crystal ball, would I have known before the lumpectomy to ask if I should buy a different bra or a bra to wear at night to keep my incision from any strain, since my breasts are not firm.)  Luckily, Divine intervention or research  prompted me to buy the little-unbra, almost like a regular little top.  And I did sleep in my soft regular bra for a few days.

Later, maybe next post, some General Questions to Ask Doctors.

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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CANCER TREATMENT - Who's the boss?

Today Jeff Haden popped up in my email from LinkedIn to announce an article called:  Your Boss is Happier Than You.  Maybe I read it because I've had a couple jobs where I was rarely happy.  

I saved this quote - hope he doesn't mind my using it here.  

Engagement and satisfaction are largely based on autonomy and independence. Just like a boss, I care more when I'm in charge and feel empowered to do what's right. 

That reminded me of how many articles I've read on medical sites that complained about patients not following their medication plan. And hospital committees formed to make patients follow their plan!

Since I needed a post for today, I went to KevinMD., and found a different kind of article:  When Something Natural Does Indeed Work, by A Country Doctor, MD.  It is a story about cooperation between a doctor and an older male patient.  Real cooperation.  The patient felt some of his medications were doing him harm.  They discussed it, and planned what to try.  His health soon suffered from giving one up. Instead of insisting, the doctor came up with an alternative, a medicine I've heard of, made from a plant.  Success!  

On the DCIS treatment, I've been lucky.  The surgeon suggested, did not order, that I meet a radiation oncologist and a medical oncologist. The radiation oncologist insisted I believe her about unlikely side effects.  But she did say radiation was my decision.  

When the see the medical oncologist this week, I'll have to talk about some medications I take that supposedly don't agree with the medicine I think he will recommend.  And I'll remember the problems others are having with one adjuvant medicine.  I want us to cooperate.  And I do want this to be my decision.  

I want to go back to real life, and be in charge, not in fear.  

  

RADIATION AND AFTER . . . Careless reading and Patient information?

For a couple of days, I was worried about the sun.  But that worry was partly from the written discharge instructions, not just my long-term reasons to stay in the shade.

This morning, I picked up my folder full of booklets from the cancer center, and also the discharge sheet.  The pamphlets they gave me  are from the American Association of Radiation Oncology.

Reading again, I discovered that one of those pamphlets is where, a couple of weeks ago, I saw this:

"If you undergo external beam radiation therapy, you will not be radioactive after treatment  ends because the radiation does not stay in your body."

This sent me back to the discharge sheet.  Reading carefully instead of skimming, I found this:

"Radiation continues to work for several weeks after your last treatment, therefore the effects will continue for two to four weeks."

How does it work if it's not in our bodies?  

This pamphlet comes from the hospital, and like other hospital forms, I have no idea who wrote it.  And I don't know if the nurse read it to me verbatim.

The social worker had also given me papers to read.  One mentioned that in reacting to the stress,  I might notice that I find it hard to concentrate.  If I had been working six or eight hours a day and commuting, it would have taken me a lot longer to wade through all this printed information, and I still might have become confused.

The stress begins at the diagnosis, and some of us have felt overwhelmed ever since.

LUMPECTOMY - THE SEQUEL . . . the position aches, pains, the burn

Sunday

Day 3 of the boost is coming tomorrow.   I don't really know how much of the pain I felt Thursday was arthritis, how much was tension, and how much was muscle problem.  I just know it still hurt Friday, though that treatment was very short.

Today it hurts to massage the muscles behind my left shoulder.  I spent a lot of this morning doing all my reclining exercises - in other words, on the bed, then massaged everything I could.

Then I read again my California doctor's neck and shoulder exercises.  I still need to massage my arms as closely as I can to the way my California PT did it.  Closest thing I have to his massage oil is jojoba oil from TJs, but I've been using Traumeel (from Germany).  Frankly, it didn't do enough for pain on the first day of the boost.

I still have no itching in the radiation area, thank Heaven.  My nipple hurts, and my incision sometimes hurts for a minute, more than it did right after the lumpectomy.  However, when I read that some people have radiation for 10 weeks, and that some women worked with blisters on their breasts, I know I have a lot to be grateful for.  The big tube of Aquaphor is always at hand. The other oncologist did tell me not to use a thick coat lot of lotion right before the actual treatment.   So, at that time, I use regular Eucerin sparingly.

The un-bra I wear to bed is Basics XL.  The microscopic print also says Bravado!  It's 3/4 cotton and I think it would be great to wear on those amazingly hot days here in summer.

Also, if no one told you, we're supposed to stay out of the sun.   Perfect excuse to stay in and exercise seated with ankle weights, then 2-pound arm weights.

I wish you more health,