Breast Cancer patients and survivors - one doctor understands

This morning, Sunrise Rounds has a post  (scroll to Cancer Care--The Secret Change) about how we feel when a cancer is "cured."  How hard it is to forget that ghost whisper:  It could come back.  That phantom pain that says: Is it back?  Dr. Salwitz shares the words of a survivor and cancer treatment professional who seems shocked at how cancer acts and feels when we're the patient.

Since breast cancer especially has been found to be ever lurking, his post really struck me.

He talks about the parts of us - body and mind - that aren't quite what they were before radiation, before whatever science has done to us as well as to the disease.  And how we feel about those alterations and losses.  

About all this he says one thing that made me feel a deep kinship with other survivors, "The clincher?  None of this is obvious to anyone else." 

Our families, spouses, friends have heaved a sigh of relief for us.  We rang the bell!

And yet... 

I wish you health.

Tamoxifen? or spine nerves? causing foot pain

More and more often recently, I'd been skipping my walks because of foot pain and morning swelling.  A podiatrist had told me months ago that something in my legs could make my feet burn.  I do take Gabapentin at night for painful leg nerves that the spine fusion didn't cure.

My primary doctor sent me to another podiatrist for the foot pain. My regular physical therapist and a retired nurse friend definitely approved of her choice.

New-patient podiatrist visit

We had a long discussion starting with my worsening foot pain and the new development--swollen feet, also nerves, especially to my upper thighs, that were not healed by the spine fusion.  Showed him my home-made salvation, metatarsal pads.  As if that weren't enough, I assured him I can't tell when Tamoxifen is causing daily pains.

He will order a custom compounded cream for my feet.

One week later at his PhTherapy dept:

I showed up.  First I sat  in a firm chair dangling my feet that did not reach the bottom of the foot bath.  Pain.

Then off to the therapist's painful chair.  Pillow under legs did not help pressure on sore thighs. Massage with cream, measurements, electro-stimulation, ultra-sound.  Way too long in chair.  Pain.

Finally, en route to my car my  feet were starting to feel a little cold.

At home, my feet felt as if I were standing in snow.  After four hours of "freeze," and leaving messages, talked with nurses or aides who said the doctor called my snowy feet "a little flare-up."   Little it wasn't.  They told me to elevate my feet--done already.  We made an appointment for the next day.  I pretty much spent the evening sitting too long, reading a murder mystery, trying to ignore my legs and feet.

Next day: Learned that the physical therapist had used their cream called some kind of "...freeze..:"   He apologized profusely. I asked for warning about strong side effects, but Dr. said they don't warn because they're not common.  "Call the office and tell us."  I mentioned there wasn't a live person on the phone to tell.  Finally he gave me a hug! kissed my cheek, and went out.

His nurse told me what I tell other people, but don't practice sometimes:  Tell the PT you can't sit long, that you have to get up and move around, that he mustn't leave you on your own, that he must check on you every few minutes.  Good idea.  It's not the PT's job to guess.

Bottom line so far:

I never know what Tamoxifen is causing.
I don't know why nerves are hurting more.
The first PT didn't do much for the pain and swelling.

Next post - the $$$ RX cream

Breast Cancer - Early stage: Lumpectomy - New: device may avoid repeat lumpectomy

Internet Medicine .com has posted this article from PRnews.com, a press release circulating company.  The post is titled SOURCE.

New Technology To Detect Lingering Cancer Cells During Breast Surgery

Posted by admin+ / January 5, 2015

"The Division of Breast Surgery at NYU Langone was the first in New York City to utilize MarginProbe(r) for early stage breast cancer."  

According to the post, the medical device uses " non-destructive radio-frequency spectroscopy technology . . . "  This technology searches for random cancer cells on the margins of the first specimen removed (or even during removal).  So if necessary, the surgeon can excise a bigger sample with clear margins before closing.

I realize that non-destructive is not quite the same as harmless, but I'm impressed by the possibility of avoiding second and third lumpectomy surgery.  Surgery is never completely without risk.

To read the post, go to Internet Medicine.com, select category medical devices, type in lumpectomy and hit search.

Since I know more than one person whose first lumpectomy did not have clear margins, I was very interested in this article.

I wish you health.

Tamoxifen and study on safety in darkness. Pt. 3

Evening use of light-emitting eReaders negatively affects sleep, circadian timing...

Yes, I do believe Tamoxifen probably needs total darkness and enough sleep in real darkness to fight off cancer.  Also Tamoxifen is not mentioned in this study, they come to the same warnings about not enough sleep in the darkness, and about putting off sleep so we can use our readers (or use our laptops because we want to get a blog out before we sleep.)

I still take melatonin and am still finding ways to let less light into this room while I sleep.  Follow the link to read more of the study.   It costs so little, and what if it does help my Tamoxifen?

" . . .We found that the use of these devices before bedtime prolongs the time it takes to fall asleep, delays the circadian clock, suppresses levels of the sleep-promoting hormone melatonin, reduces . . ."

http://www.pnas.org/content/early/2014/12/18/1418490112.abstract  

Pediatrics: Smartphone in Bedroom Is Not So Smart Choice  MEDPAGE 1/05/2015

Coming year

I wish you health.

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.

 

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.