TAMOXIFEN - the long brain fog, the aches, relief, and aftermath

When I first came to my new state, I was disoriented, and just 10 weeks past a lumbar fusion.   I had lived in CA for more than half my life - felt lost.  Before I was completely "unpacked" I had a scary mammo.  And fell into what sometimes felt like "the breast machine."  The mammo was repeated.  A very kind doctor made a little sketch for me of what looked like a kitchen tool, and told me I should have a needle biopsy.

On biopsy day I looked longingly at the Ultrasound Dept. sign as I went toward the Stereotactic room.

A few days later, the biopsy doc's cheery, happy voice on the phone said, "There was cancer."  (May she get a large zit on the end of her nose for being so jolly.)

Then the wires, the surgery, the pathology report, and the hours on line where I found only one interactive decision aid. And the radiation.  (Thank Heaven for two kind, fun radiation therapists who made me feel normal.  And no real chemo,  Much to be grateful for.

By the time I met my wonderful oncologist and heard him say "You're cured. But we have..."
I had already heard stories from another patient about her uncomfortable meds, and was leaning toward Tamoxifen.

I started the white pills about a month later, and became a nut case, an amnesiac.  With aches.  As I mentioned before, he told me they call Tamoxifen the schizophrenic medicine.  It acts differently in different parts of the body, and the body gets confused. (No kidding!)

Slowly I turned completely absent-minded, freaking out, couldn't find my keys or anything else, couldn't make plans. Worse, I felt like a thousand-year-old woman.  And I thought like a thousand year old woman.

And then my feet started swelling.  A foot doctor was no help.  All shoes were torture.

The oncologist must have thought I was about to quit Tamoxifen.  He reminded me gently that we had a choice, because Tamox was preventive for me.  He gave me a month vacation.  No white pills. It wasn't long enough for a miracle, but I did seem to feel better.  At the next visit, he let me go on 10 mg instead of 20.

It took some time for a real change; sometimes I still feel older than I am. Sometimes I just have to lie down.  At least now I can think, plan, look around at my situation and my world.

But...after those foggy months, I still don't quite trust myself.  Driving to an area I'd never been to took several "trial runs" with my daughter.  If I don't see my keys I'm first slightly panicked. I have to remind myself that they aren't at the library because I got here and unlocked the door.  It may take a while longer before I trust myself again.  Before I get L.A.brave again. I need  to.

WOMEN'S PLAGUE REDUX

 In honor of breast cancer... month, I'm re-running this post from a former year

WOMEN'S (and sometimes men's PLAGUE Still grasping at straws

Tuesday after leaving the surgeon's office, I looked up Breast Cancer Action SF, and read an essay by a woman who had done everything right and found nothing had changed:  No Cure.

This morning, her words were still in my head, and I remembered attending a reading years ago of James Engelhardt's play, Rattus Rattus.  It is a story about The Black Plague or some other plague that nobody could cure.   It seems people of the time were carrying nosegays in front of their faces, perhaps to distract them from the smells of death, or perhaps to ward off the possibility of the disease attacking through the air.  I'm sure the flower vendors had a thriving business.  And in spite of the fear and the death, somewhere in the background I'm sure a jester was singing:

Ring around the rosy
Pocket full of posies
Ashes, ashes
We all fall down.

Now centuries later we're pretty sure posies won't do it.  Yet instead, we carry around pink ribbons on our cars, our clothes, our gifts, our jewelry.  And there is a thriving business for vendors of anything with a pink ribbon on it.  Even on a mammogram machine!  But to be sure their business was thriving, until 2000 one company  that manufactures breast cancer medicine also manufactured a carcinogenic herbicide, acetochlor.

Hospitals give us literature for "runs" and "walks" from companies that won't tell where the money went, and from companies still manufacturing products that may make the plague worse.

We run, we walk, and on Mother's Day, we remember the ones the pink ribbons didn't help.

Too many still fall down.

MAMMOGRAM WARS - And why I still have the damn things

I'm told I'm cured.  Or I was cured of DCIS for a moment in time.  In a couple months, I'll have another "diagnostic" mammo - the more uncomfortable kind.  I take Tamoxifen, I don't use soy.  I don't take estrogen.  So why do I still have mammograms?

The knee jerk answer is that my doctor wants me to.  But I don't automatically do what my MDs want.

One answer is I get mammos because DCIS can come back.  After the suspicious mammo, I had a stereotactic biopsy.  Days later, a cheery voice over the phone just said:  "There is cancer.  Go see Dr. "x"  We use him all the time."  I have a special curse in mind for people who use jolly voices when they announce cancer!  

I saw the doctor. I had the surgery.  But I had never felt a lump!  DCIS usually is not a lump. Those breast ducts are small.  So, if it comes back, I won't know.  Maybe not until too late.

The surgery gave me a major deciding tool - a pathology report.  I dug around in it.  It said the sample was hormone receptive, as most breast cancers are.  It said I didn't have the lowest nuclear grade, which is not good. I can't find this hospital's exact nuclear rating scale on line, but mine was not in the lower half of the scale.  Not good.  Not likely to lie there and get well in my breast.  For some reason, I never see these rating scales discussed when authorities are discouraging mammograms.  Or is it that the famous minds are just talking about an initial mammogram?  Or what?

I have to say, usually respectfully, that the ongoing disagreement between authorities, plus frequently unclear reporting, gives me no grounds for arguing with my oncologist so far.

So when the surgeon said I didn't have to do anything more, he quickly added that he recommended I meet the radiation oncologist and the medical oncologist, who is now my trusted continuing doctor for preventive Tamoxifen.  And that oncologist  has recommended a change to a mammography service he values and trusts.  So before the end of the year, I'll be there.

I wish you health.

Breast Cancer DCIS & Mammogram Wars 2 articles - Weak ammunition? Will you stop having mammos?

More cannon fire on the web today about mammos vs no mammos.  I'll be having another before Christmas because I trust my oncologist.

I ask (beg) you that if you read either of these articles, read the whole thing.  Or print it out so you can mark the iffy parts and parts that don't pertain to you.

http://www.motherjones.com/politics/2015/10/faulty-research-behind-mammograms-breast-cancer

What If Everything Your Doctor Told You About Breast Cancer Was Wrong?

Mother Jones starts with a story about an angry post-surgery patient, Therese Taylor.  Her doctor said her biopsy was "indicative of cancer." The story goes on with a lengthy list of cancers to touch on, and the experiences of famous people.  Included are even numbers from studies MJ admits were not well organized or designed.  As you know, attempting to cover every possible argument can leave us with parts of a whole story.  And the heavy emotional opening ... well.

My questions:  DCIS is not palpable - your doc won't get it by touch and neither will you.  So if you don't have the mammogram, how do you know if you have the start of something else?

And hopping from one cancer to another can lead to over-simplification.

Cancers are not like rabbits or anything else, and the National Institutes of Health (the second) article does touch on possible, slightly possible migrating DCIS cells.


**

https://www.nlm.nih.gov/medlineplus/news/fullstory_154216.html:

THURSDAY, Aug. 20, 2015 (HealthDay News)  

Early Stage Breast Cancer Far From a Death Sentence: Study

 -- Only 3 percent of women diagnosed with an early stage of breast cancer

 will die of their disease within 20 years,

 and more aggressive treatment does not improve that high survival rate,..

Despite the fuzzy title, in the next paragraph, we find they are talking about DCIS.  And that DCIS treatment does not increase life span, which is not really  "news."   I got the same information a couple of years ago when my DCIS was suspected  and confirmed. A cancer hospital interactive"decision aid" advised us then not to hope whatever treatment we selected, if any, would make us live longer.  DCIS can come back. I took the treatment they said would "prevent recurrence" for a certain number of years.  

 Study first author Steven Narod,is quoted as saying "The good news is that death is pretty rare,"    I hate this kind of "for the press" generalization.

I beg you to read the "fine print" in this article.  For one thing,  death rates were estimated.

And don't stop reading before you get to this statement, which is something I've never heard before - scary.  But it reminds me of something I saw in a video from MEDPage Hot Topics.    The doctor who impressed me so much, Lisa Carey, MD, of Chapel Hill said in MedPage Hot Topics Breast Cancer One told us that some breast cancer cells are looking more like other cancer cells ... Now Steven Narod is quoted:

" 'In all, 956 women in the study ultimately died of breast cancer. Of those, 517 never had invasive cancer in the breast after treatment seemed to cure their DCIS. That means that the cancerous breast cells from their DCIS had escaped at some point and survived in the lungs or bone, later developing into a deadly cancer', Narod explained."  "...seemed to cure their DCIS."  This contradicts everything we've read about DCIS not spreading to the rest of the body!  

That's all I can manage on these two articles.   Food for investigation!

I wish you health.

My apologies for the mistakes in the the original of this post.  MLF

BC - Triple Negative - The Midnight Special

If you haven't already, here's a new release (at least new to me tonight)

Scientists target molecular 'addiction' in triple-negative breast cancer

September 28, 2015

14

http://www.dana-farber.org/Newsroom/News-Releases/dana-farber-scientists-target-molecular-addiction-in-triple-negative-breast-cancer.aspx

OSTEOPOROSIS RX - Prolia, and my amazing dentist

This article made me think, but then everything makes me think about my osteoporosis right now.

http://www.kevinmd.com/blog/2015/09/

osteoporosis-a-silent-assailant-turned-me-from-physician-to-patient.html

The writer, an MD, was sure she was taking care of herself until the incident, the snap, the pain. The procedure on her broken vertebra had her back at work quickly and going for long walks.  My spine probably is in danger, too - no spine scan possible for me due to screws from the past lumbar fusion.   She and I both have to be aware of the strain on our spines right above and below the "fix."

And I still have so many questions about my plan to take Prolia.


Fast forward to yesterday at the dentist.  (All dental work has to be complete before Prolia because of possible side effects to the jaw.)

The dentist spent the entire afternoon on one tooth that my previous dentist did not even plan to treat.  An old crown had to be very carefully cut off.  Sure enough, there was decay in a space below that crown.
(The rumor is that some other dentists just won't go to the time and trouble to find and fix that.)

The assistant and I got into a talk about osteoporosis medicine.  She mentioned that some osteoporosis patients have been referred to my dentist because they had the jaw osteonecrosis these meds can cause.  (Think a dragon chewing on your jaw.)  My dentist had thought up a wonderful fix for one of them.

I'm blessed to have him - he takes the time the problem requires, and knows enough to create solutions.    Still, The discussion was uncomfortable.

 My oncologist's other patients have not had any of the scary side effects of Prolia.  And he does require a clearance showing all dental work is complete before the first injection.  I'm blessed to have him, too.

Recently, at my request, my dentist did a long and rigorous check of all my teeth, In two weeks, he'll be done working, and I'll be good to go with Prolia.

Yesterday, he remarked after recovering and rebuilding that tooth that my gum tissue is good.  That's probably thanks to the nightly ritual I learned from the L.A. periodontist.)  So that would help protect my jaw?  Right?


But, still, what makes those referred patients different from me?


Action:  I want to ask my dentist when I get the permanent crown and the last tiny cavity fix:


1.  Does he know if the jaw patients sent to him were taking bisphosphonates (like the advertised pill) or denosumab, like Prolia?  These two kinds of drugs work differently in the body, but both endanger the jaw and certain bones.  WHY?

2. If this necrosis is caused by lack of blood supply, how to I get more blood supply for my jaw? The internet hasn't been much help on that.  If he doesn't know?  What do I do?

I wish you health.