Lumbar Fusion meets Tamoxifen

Lumbar fusion wasn't that long ago. September, 2012.   I thought I would stay "normal" after I gave up the cane late last fall. Instead, I got non-invasive breast cancer.  And, the last few days I've felt 100 years old.  So right now I'm on hold with Barnes & Noble reserving a copy of Strong Women Stay Young.  But I've owned it before, and it wasn't the whole answer for me.

Will every discussion like this for the next five years involve whether Tamoxifen is making me tired? Or making me ache?  Or making me whatever?  Mayo Clinic website lists sleepiness and lower back pain among its bushel of side effects.  How can anyone know whether feeling old and achy is age or the medicine or not doing her exercises (I've only been walking lately.) Or all the above.

I want to be strong enough to take my laptop to Starbucks and sit there looking at the trees and people while I type up my notes.  But moving my laptop around feels like carrying a German Shepherd.

True, my arms and upper body have never been very strong.   Once I lived in a beach  house with a loft that was accessed by a knotted rope.  I only got up there once, with help. And the bit of physical therapy I had when the spine first went bad was for my lower body.

I do NOT want another Xray, but I do want a Physical Therapy assessment and/or maybe some very slow, very easy Pilates.

Okay, take action.  I'm seeing my primary in a week.  I can email the California surgeon (thank God for doctors with email) and ask once more if they found that Xray.   I can ask my primary doctor to have an inspiration.

Caring for my health with Tamoxifen is mental exercise in a life skill I haven't always been great at:  making the best possible change when I don't have any way of knowing all the facts.  

FDA Warns of Cancer Risk with Laparoscopic Device

When I was worried about whether to risk Tamoxifen, a sweet social worker who has taken it, emailed me some comfort.  She only mentioned a couple of serious possible side effects.  One was uterine cancer. She made light of it, saying one would just have a hysterectomy.  I tried to go along with the downplaying.

Then I read about Dr. Amy Reed, whose doctor husband was in conflict with Brigham and Women's Hospital, insisting that laparoscopic power morcellation in her hysterectomy spread an undiagnosed cancer throughout her abdominal cavity. The doctor and her husband have been fighting to get the procedure  publicized and stopped.

Why do I care?  Because the procedure is in use, and the FDA cares.    According to this April 17 medpage article, doctors don't always mention this potential danger to their patients.   Maybe they don't even discuss how they're going to do the hysterectomy.

Now, in the back of my mind with fear of uterine cancer, I have to remember  what kind of hysterectomy.

What you can do is, if you like, read the story, in USA Today or medpage, then put a note with  your pills.    Put it in your medical proxy directions.  Put it in your wallet.  And tell your GYN what is not permissible.

Update:  See my somewhat more polite comment on medpage under the title article.

AFTER DCIS: What I want to know about breasts

In my life I've gone to a periodontist, two eye specialist MDs, and a podiatrist.  It occurs to me that it's unusual for anyone to die of eye disease or foot disease.   

Oh, and two "professional breast fitters" measured me several sizes too small, i.e., I can't breathe at all in a 32, and they didn't have any 34D.  Don't you wonder if the mastectomy fitters have any real training?

One put me in an expensive underwire.  (This was before the lumpectomy.)  I have no separation between my breasts, so I don't wear under wires.  That one was pressing hard on almost an inch of each breast.  I pointed this out.  She said, But look how good you look!! I ran.   Finally, in radiation, someone pointed out that underwires are not recommended.

So, why don't we have breast doctors?  Do any medical schools teach breast care?  Do schools of osteopathy teach breast care?   Are doctors taught anything scientific about breast care before we get a disease?  

While looking up Dr. Northrup, MD, I did find something about tight bras being a problem, and about not wearing your bra all the time.  That much seems like good advice.  With heavy breasts, this is a tricky decision.  She also mentions avoiding a lot of estrogen.  She offers a monthly letter about breasts, but I probably won't subscribe to it - her focus for general protective health is different from mine.

And  there doesn't seem much knowledge about ongoing  breast care after lumpectomy and radiation, except stay hydrated.  I do leave my bra off for some periods, but after awhile I have some breast pain.   I also have periodic slight breast pain with my bra; and my radiated breast, months later, seems warmer to the touch, with a pink and  apparently swollen aureole.  The nurse at the radiation center is not much help.  I wonder if I'll get the doctor if I call again.

I've watched the medpage hot topics breast video, but I want to know:  Are any specific substances being tested for better adjuvant therapy?  Will more than a handful of women be able to afford them?

 Are we still going to be taking Tamoxifen fifty years from now? What can we do to avoid uterine cancer in the meantime? Memorial Sloan Kettering list Tamoxifen as one of the six "key risk factors for endometrial cancer."  Endometrial cancer is not my idea of a little problem. 

 Will Evista become more affordable?  

Are women really quitting Aromatase inhibitors because of the nasty side effects?

If a woman has had CIS in another part of the body, doesn't that make mammos more advisable?

What do the studies mean when they say a cancer drug did not reduce mortality?

POSTCARDS FROM TAXMOXIFEN part 2

Daylight saving time started Sunday.  In the past I always looked forward to the longer daylight; it seemed to make me feel better.  Now I don't get that effect yet.  And I already had a cup of forbidden decaf.

Between the GERD diet and the No Soy diet, how could I have gained this weight?  And still two mornings, I woke up hungry, long before I'd had enough sleep.  Am I just less active? Sitting here learning the new laptop's personality doesn't burn many calories. But I can't help blaming Tamoxifen

There is more hair in my brush than I can ever remember.  It's funny how a side effect that says "older, older" gets your attention more than anything else.  On the hair, I'm definitely going to blame Tamoxifen.

And then I realize, it's not like taking too many vitamins--you don't just stop Tamoxifen.  

Will things level out at the end of these first 30 pills?  I'm seeing the medical oncologist a week from Thursday.