Tuesday, November 25, 2014

Breast Cancer and Pregnancy - article from Mt. Sinai

You may want to read this in Mt. Sinai's Medicine Matters web mag.

A Patient’s Journey Through Pregnancy and Breast Cancer

In July 2013, Adele Rivas discovered she had breast cancer. Two days later, she learned she was pregnant.
They mention interdisciplinary meetings, which sounded like her care was probably well coordinated.
I wish you health.

Saturday, November 22, 2014

WHAT'S APBI - part 2 of more than you may want to know about radiation

I find it hard to work through MD Anderson's website, but it inspired me to write about looking for info on APBI.  Here's the way I can usually get around the site. Google MD Anderson, sometimes the first Google choice says MD Anderson - Cancer Treatment.  Then on the site, I go immediately to the search box, and Type in radiation treatments.  If you get that, read the two types; then if you pick "accelerated" from the menu, you will get another page with info on APBI.  Or you may want to look at all the choices.

Yes, you can go to MD Anderson, type APBI and get the pretty picture and menu.  I didn't try backing up from that page to the preceding page with the explanatory material and the two types of radiation explained - you may already know that part.

For me, the most snarl-free route is just to copy the link below into my browser.


MD Anderson can explain things clearly once I find what I'm looking for.   But of course, other leading cancer hospitals may have other treatments that are used in new standards of care.  And conversely, other hospitals may not use treatment MD Anderson uses.  You can ask your favorite oncologist for places to find reliable, readable info on the specific treatments for your cancer.

I wish you health.

Wednesday, November 19, 2014

TAMOXIFEN BRAIN DOES EXIST - and a radical suggestion?

The day came.--the one we don't think will come until we're 90.   I forgot a friend's name while pointing her out at a party, and had to cover it up quickly.

Then last week, I had to leave my groceries and the nice insulated bag at the market, because I had driven over there without my purse - for the second time in my life. And I'd been thinking for days that I had already published this post.

By the April 18 post "TAMOXIFEN? or just overwhelmed? - Fuzzy thinking news" I was already wondering about brain problems, and I had been searching the web for more info all year.  What I came up with then was just some material on walking in nature to help mental overload in newly diagnosed women. So I went out an pruned some bushes.  And walked.

Yes, I'm not 29 any more.  Yes, I've been distractible for a long time.  Maybe always. This is not the same.  This is worse.  It is scary at my age because every time I open the laptop, someone is posting about who will get dementia, and when.

My oncologist explained at the last visit about mental health problems in the first six months of Tamoxifen--about how our bodies get confused by this medicine that acts like estrogen in some parts of the body (the parts that get uterine cancer) and acts against estrogen in other body parts where there are breast cancer cells. He told me this confuses the body, and for reasons like that, doctors call Tamoxifen the  schizophrenic medicine.

He mentioned depression and "craziness."  He said I was doing better than he anticipated.  Maybe that was because I was focused right then on aches and pains.

Those first schizo six months are over now.  They were over before that last appointment.  They were over before that day I couldn't remember that friends name at that party, when  I had started to mention her. But some effects go on.

I read Susan Gubar's blog: Living With Cancer:  Brains on Chemo, in the Times but I read it after these symptoms were worrying me - I didn't fantasize symptoms from her writing.  Her treatment, and her side effects are worse than mine, but I wanted to learn how she manages.  She adopted a phone and computer calendar/daily notes/system for things to do. Also small note pads around the house (which I've needed before Tamoxifen at times.)  You can Google her blog with the title in this paragraph.

So far the only real help I've seen for Tamoxifen brain is a vacation from the stuff, which in one case of a woman with much worse symptoms than mine, became a permanent vacation.

A Harvard mental health letter strongly discouraged several antidepressants for Tamoxifen users. I didn't find any help for fuzzy thinking on their site.

What keeps coming into my mind is a book:  Past Forgetting, My Memory Lost and Found, by Jill Robinson.  The author, handicapped by her amnesia, traveled long distances and tried every memory aid and exercise any doctors gave her.  Some copies of the book and a Kindle version are available if you're interested.

Meantime I'm drinking coffee for the depression, and doing exercises in bed including some the PT taught me, in hopes that being stronger will help me feel more tuned in to the right mental channel.

 And in a month, I'll see the oncologist again,

I wish  you health.

Sunday, November 16, 2014

FEET HURT: SPINE FUSION OR TAMOXIFEN OR . . . as if we didn't have enough to worry about

It's very cold here, probably where you are, too.  I've been wearing so many clothes and so many covers, that I'm not moving around much when I sleep -- waking up a couple of days ago with slightly swollen feet.

For months, I've been making my own metatarsal pads and taping them to the bottoms of my feet to avoid foot pain - whether it's arthritis or so far, WHO KNOWS.

The physical therapist told me weeks ago that my socks were too tight . . .well, she was right.  But I need socks.  It's almost freezing here, for one thing.

Then at WalMart (no, I don't get paid for this)  I found something wonderful.  At least they're wonderful so far:  MED PEDS.  These socks (the ones I found) are not quite as tall as I'd like, but they have a sort of mesh knit around the tops that looks like any other socks, but is very gentle on the circulation.  And today, in a fit of daring, I just wore the MED PEDS in my old walking shoes (thunder storms forecast) and didn't need the metatarsal pads!  The soles of these socks are padded in two places.  Don't know why it works, but today it worked.

If you look around, you may find some that are a little taller, like crew socks.

I wish you health

Friday, November 14, 2014

BREAST CANCER - What's TOMO? and more than you may have wanted to know about radiation

Here is a possible place to look up specific definitions of some strange radiation therapy initials or words you may have heard from another patient or seen on Twitter or in the news.  This CUSF page does not specify use of any one or the other of these treatments for breast cancer.  It is rather a radiation glossary, dictionary, and better source than asking somebody next to us in the waiting room what radiation terms mean.  

UCSF Radiation Oncology
Treatment modalities

I wish you health.

Wednesday, November 12, 2014

BREAST CANCER RISKS: finally "one-in-eight" explained

 UCSF mentions the age factor in their section on Bc risk,  Part of it reads:

"You may have heard the statistic that one in eight women in the United States will develop breast cancer. This does not mean that a woman of any age has a one-in-eight chance of developing breast cancer. This statistic conveys a woman's lifetime risk. This means that if a woman lives until age 85, she has a risk of one in eight of developing breast cancer sometime during her lifetime."

I don't know if their clarification comforts me or not.  Anyway, I'm in the group they say has the most diagnoses, so I'd better keep up my morning reclining exercises, my standing exercises, and the exhausting hunt for shoes that make my feet painless on longer walks.

I am not enthusiastic about all their links to other sites, but there is plenty of other interesting information on their site.  

I wish you health.


Sunday, November 9, 2014

This Isn't a Hangnail. Make up your d...minds what kind of mammogram I'm getting (a rant)

This has been way more phone calls than radiation and lumpectomy combined!  Thank Heaven I'm supposedly cured.  If I were working, I'd get fired for being on the phone.

"You need an order that says Diagnostic. If there's a code it will probably be OK.  No you don't  You need an order that says breast cancer.  No, you don't because there's a code on your order.  If you don't have it, you'll get a regular screening mammogram and the results won't be ready 2 days later when you see the doctor."

How is it that no one in the oncologist's office has never experienced these conflicting hospital rules.

This is after three non-returned calls from the hospital, just to get even a tentative appointment! (Turns out the local appointments person had been gone for a week.  Don't know what happened after she got back, but it didn't happen for me.)

If I don't hear by the end of the day, I will email an Oncology Nurse Navigator I've met.  See if she can straighten this out so I can make my other medical appointments and have a life off the phone. PS  Nurse navigator did not reply to e-mail. 

Finally the only hospital person whose name I know assured me that I'm down now for the correct mammo based on the code.  She is always patient; mentioned without scolding me that some of the women in the breast center are new.  Also, out of a clear blue sky, she said I'm on diagnostic mammos for 2 years.  Funny no doctor ever mentioned that to me. . .

   Please let me believe the mammo tech will not be a new one.  I admit I'm lucky that they have this new campus in my area.

I have to learn to ask every person on the phone: "Please tell me your name."  Then write it down. Maybe that will encourage them to go and ask someone who knows.

The Bottom Line:  It's up to me to check firmly once more before she gets hold of my breast that I need the diagnostic mammo! My responsibility.

I wish you health, and a friend at the hospital.

Wednesday, November 5, 2014


In 1911, as you may know, my leg and lumbar pain got worse after I tried to dis-assemble a drafting board.  Shots did not help.  Finally, the surgeon announced, "If you think that walker is a pain, how will you like a wheelchair?  You'll be in a wheelchair by Christmas if we don't do the fusion."  The nerves in the back of my right thigh had been giving me serious pain.  I had the fusion, and ten weeks later moved to Texas.

I didn't have a car when I got here, so I amused myself by seeing how far I could walk, at first taking a cane with me "in case."

Fast forward.  Sometime, I think early this year, my feet started to hurt. I began making my own metatarsal supports, with mixed results.

An NP sent me to a podiatrist who said that something in our legs can make our feet burn.  He also told me to get the NP to find me a rheumatologist. Arthritis was beginning in my toes.  I saw a custom orthotics man, who didn't reassure me for several reasons. 

 The rheumatologist told me I'd been walking on these feet for (never mind how long.)  He did arrange some physical therapy.  The therapist massaged lower back muscles that can spasm and grip on nerves.  My feet sometimes still hurt, and so, three of my visits there were exercising in a very warm pool.

Meanwhile, back at the doctor's office: about eight months ago, I started Tamoxifen.  A known side effect is pain, including muscle pain, so I never know if that's involved.  If my foot pain is different on different days, is it probably Tamoxifen? 

In the last week and a half, the foot pain is worse.  

This morning I found something that might interest you.  I looked up "Foot pain after spine fusion" on line. (Finally).  John's Hopkins has a giant survey that their fusion patients must fill out before coming in for followup.

It's just a "mark the little circles" survey.  Some of the questions might zero in on things you've wondered about since fusion, especially if you're disappointed in the results of your fusion so far.  And some questions address perception of pain. 

At the very end, I found directions to fill out the survey.  Click that link.  Should lead to:


 You should get a screen with choices.  Click Survey.

I wish you health.

Sunday, November 2, 2014

CANCER STUDY- Science takes another look at why some got well

The National Institutes of Health said it better about drug studies than I did:

"1-10% of patients respond well to drugs that do
not go on to receive FDA approval for that


In the past, some patients have had remarkable, sometimes long-lasting, response to test treatment - they are the Exceptional Responders (ER), but if they weren't over 10 % of subjects, the tests were considered failures.  Nobody knew why some patients did so well.

Now science wants to know.  And thus the new study: Exceptional Responders Initiative.   Some tissue samples are still available from early studies and there are samples available from non-tested patients. 

I wish I had a scientist pen pal to tell me what happened to some exceptional responders after the early studies ended.    Did some of them need the treatment again in later life? Were they unable to get it since there was no FDA approval?   But I digress.

To get back to this study:

For an easy, quick-read outline of the study, try the above reference or 

If you Google 

Exceptional Responders and NCI-MATCH Initiatives  deainfo.nci.nih.gov/.  

I wish you health.