fuss about mammography guidelines

Old news, just another agency saying it again.

And you'd think a sniper was shooting 40 year old women at a shopping mall.

I don't understand why women are so devoted to such a lousy test. Mammography may save some lives - not often and usually in older women.

And the blogosphere is full of women saying they were diagnosed by mammogram in their 40's and would be dead if they hadn't been tested. That might be true for a few, but it can't be true for many. This is like basing health policy on shark attacks or lightning strikes. Most of these women would have found lumps a little later, had them biopsied, and been treated the same way months or years later, with the same excellent survival rates. Some of them would have been screened at 50 and the lesions that were present at 44 would have vanished anyway.

Commentators tell me that breast cancer is the greatest health concern of women. Only if they are illiterate or misinformed or responding too enthusiastically to marketing plans. Others have announced that women do not base health decisions on evidence or statistics. That's not true. I do.

I was 53 at diagnosis but I don't think that mammogram saved my life. I can't be sure, but I might have died of heart disease at 70 with the same DCIS in my right breast, not bothering anyone.

I've always looked at evidence and guidelines. I was skeptical about mammography. No skeptical enough to ignore it
completely, but I spaced them 5 years apart. I thought that was often enough and it turned out it was.

We have way too much breast cancer "awareness" and way too much screening.

The guidelines (which are not new incidentally) are rational, not rationing.

This has been bothering me ...

Why am I in such a minority? I fully expect to live out my life without dying of breast cancer. It looks like something else will get me first. Survival? Pure luck, random event.

Who are these "positive attitude people"? They had a lot of high tech medical care for a disease that is not all that lethal and they attribute their survival to a "positive attitude"? Keep these women away from me

not all that interesting

Last week, when I was in Barnes & Nobles looking for the new George Romero DVD, I noticed Shelley Lewis's book, "Five lessons I didn't learn from breast cancer". Thinking about the first anniversary of diagnosis and everything that followed, I bought it.

I guess its all right (notice that Rocky is not impressed). Of course I agree with the premise - we do not suddenly become better after treating this very common disease. Little or no insight attached. There are some good lines in the book."If you honestly think breast cancer is a gift, you can't come to my birthday party". And whole chapters about the healthy and useful aspects of denial - I'm still amazed about how little information I took in and how little I sought out.

Maybe a year is too soon to look back. But now, my main thought is that the experience was not very interesting. I wouldn't want to repeat it. There was a little fear, a lot of anger, but mostly the experience was boring. It didn't teach me much.

I have always found my patients' stories about their illnesses absolutely fascinating. But mine was boring. A series of tasks, a sequence of worries.

good mammogram

Notice how, in addition to the pinkish pasty over the nipple, I got to wear little radio-opaque pink triangles (pink triangles!) over the incision lines. There was another row of pink triangles over the scar from the sentinel node biopsy, but it got all wrapped up in a ball before I got home to take a picture,
But everything looks fine on the first anniversary, alive and well.
Now I have to rethink the follow-up. Every couple months I have an appointment with another doctor - another one I like very much. I go in and show my tits and we say hellos and I write a check.
It might be time to stop that and learn to keep my shirt on like a normal person again.

Dee Dee first into Cripple!

Got into a cab this afternoon, a little disoriented after five days in New Orleans. I asked the cab driver how the Iditarod was going, and he told me beautifully. Dee Dee was first into Cripple, the halfway point, after Paul Gebhardt got turned around and started back the way he had come. We spent ten minutes deep in the details of mushing. Aside from baseball, this is the only sport I know and love and can talk about endlessly at the slightest provocation.
Dee Dee scratched last year, and I didn't think she was going to run again. She broke her hand and blamed it on the drugs she was taking to prevent a recurrence of her breast cancer. She had run the 2003 just weeks after completing chemo.
But maybe this is her year!!!!

celebrity breast cancer

I'm not really into celebs with breast cancer. They are too young (average age at diagnosis in the US is 62) and thin and rich. But I downloaded Sheryl's "Make it go away (the radiation song)". It was a week before I dared listen to it. And it brought the experience back so intensely I was shaken. Radiation doesn't hurt and doesn't make you sick. And I really lucked out with a one week course and a radiology staff that was wonderful. But it scared me, and Sheryl reminded me of that.

Last weekend I talked to Uncle Pat and Aunt Barbara. (I should have done this earlier.) I an totally incapable of pretense with any of my aunts and uncles, and they all know me too well. This was very helpful. I explained to Pat, "Now that it's over I can say it wasn't a big deal. And it is over, and unlikely to cause more trouble. But at the time I complained a lot and I was very upset!".

How nice to be able to say that! And to listen to someone else say it in song.

Progress

The "way too dark" part of the winter is over already. Now I admit it is cold - about zero. There is plenty of snow. The redpols in my back yard are eating half a pound of sunflower seeds a week.

But there is Daylight! Not enough maybe, but now that we are above seven hours and gaining more than four minutes a day anything seems possible.

I had a follow-up visit with the surgeon this week. Everyone came in to admire my breast (I used to be shy about such things). Actually, it looks better than the good one and I no longer have a matching set but I'm not complaining.

Marilyn said very few women were opting for the short course of radiation (twice a day for five days instead of five times a week for six weeks). I was the third woman in Anchorage to go that route. It is in Phase 3 trials now and is not yet standard therapy. She said when the radiologist said "long term results are unknown" that seemed to scare women off. I never thought twice about it. Marilyn suggested that we health care providers know damn well how little we know about anything and therefore worry about it less. That might well explain my attitude.

I can come up with dozens of questions that can't be answered. What's one more?

Good Mammogram

I never used to worry about these things. But I don't wait for results anymore. The test was done Friday, and when I looked at it I was worried. On Monday I went to the hospital to pick up the report. A good report!
One dot is the radiopaque thingy over the nipple. There are three gold bead in the incision site.
The stuff I was worried about was just scarring.
So far so good...

finally November

..and the dogs are in their winter coats and soon the pink ribbons on the soup cans will disappear. I wonder if I will be this angry next October.

I'm into the second week of tamoxifen and trying to get used to having hot flashes again. Only four years and 50 weeks to go. Actually there will probably be a whole new standard of care before then.

Today I made the appointment for my 6-months-after-radiation mammogram. "And are you a breast cancer survivor, ma'am?' the woman on the phone asked cheerfully.

Cure! Cope! Heal! Mamm?

The magazine rack at the oncologist's office.

No matter how good your prognosis, never go to the oncologist's office without your own reading material. This stuff looks lethal.

Lovely weekend

The Sox clinched. And maybe the Indians? I would have enjoyed another Sox-Yankees playoff , but the Indians are really cool this year.
The first killing frost and the first snowfall last night. The air was delicious today and the sky was brilliant.
It is wonderful to snuggle with the dogs at night. I haven't closed the window yet.
I am struggling to realize that I have to spend the rest of my life being treated for breast cancer. In return, it won't kill me. But given my fears of health care and medicalization ... I don't like it.

Still October

Went to the library for a new supply of neo-noir and was confronted with this thing. You were supposed to write names of "those affected by breast cancer" on pink ribbons and put them on the tree.

I can't wait for the Colon Rectal Cancer Awareness tree.

Magic

This is the first time I've heard this through. iTunes, thank god, is on eastern time. I can hardly breath for the thrill.

"You're own worst enemy has come to town"

Today I saw the surgeon - she is young and little and dynamic and I love her. She says this pain under my collarbone and along my sternum is neuropathic and not likely to go away on it's own.

And she disagrees with the oncologist about tamoxofen therapy. She thinks it is important. I said the oncologist says there is no survival advantage with it.

"Survival!' she says. "We can keep you alive, That's no problem." For a second it sounds like a threat. Alive, with painful and debilitating slash/burn/poison, until I die of something else.

"Tonight I'm gonna blow this town town".

I don't do why's either

Last week I was talking to someone I don't know well and hadn't seen for about a year. When I told her about the breast cancer stuff she asked, "Were you surprised?"

That question semed odd to me. "No, not really".

"Did you have a lump? Did you think something was wrong?"

"No, there wasn't a lump and I wasn't expecting anything. I was scared and angry but I wouldn't say I was surprised."

Why would I be surprised? What is unusual about a routine mammogram picking up DCIS in a 53 year old woman? Happens all the time.

I don't seem to have a "why me?" reflex or a need to search for causes and reasons. I was attracted to probability theory and epidemiology because I always suspected that many things were random. Even if there is causation it may be impossible to prove it and hopeless to look for it. I know most human brains are programmed to deny randomness and demand links. Mine isn't. Some of the distance I feel with others is my irritation at this basic quality.

Breast cancer discussion boards (and probably those for other diseases) are dominated by this obsessive search. One website is actually titled "Why me?" Women post on their belief that one food causes breast cancer and another prevents or cures it. One woman announces she is turning to an all raw foods diet, another says she has given up caffeine, sugar, and alcohol "because they make the tumor grow". And of course there is the power of the pink ribbon positivity...

Miriam's version in "Cancer Made Me a Shallower Person" is the only one that made me laugh. "I think I caused breast cancer by eating too much cheese." I eat a lot of cheese too. I'm going to eat more cheese.

I've been watching the "Joan of Arcadia" series on DVD. I never saw it when it aired, but Lorraine and I met the show's producer at the Springsteen symposium two years ago. A very nice family is struggling with life and God starts appearing to the sixteen year old. In human form. As a hunky high school boy, a lunch lady, a four year old girl in pigtails. In many episodes, Joan is asking for answers. God explains, a little impatiently, "I don't do why's."

Cancer has made me a more obsessive and reclusive person

I love Mirian Engelberg's breast cancer comic book. One of my favorite parts is how she began doing TV Guide crossword puzzles obsessively during treatment. There is one frame with her and the TV Guide and the thought balloon "Must avoid all conscious thought". That's how I still feel.

I should be back in my real life by now. The bird cage must be cleaned, the frog needs a mouse to eat, the garden needs work, the new quilt should be pinned and basted, the bathrooms need to be cleaned, I have guests arriving Monday night and no food in the house. So I'm doing this stupid jigsaw puzzle. Its all I want to do.

If I'd been reading Betty Rollin's new book, "Here's the Bright Side" instead of "Cancer Made Me A Shallower Person" I'd be worried about this behavior.

Here's the bright side ???????

http://www.nytimes.com/2007/08/14/health/14brod.html?ex=1344744000&en=c1d7363537972285&ei=5124&partner=permalink&exprod=permalink

(to view permalink, cut and paste this in your browser)

Here we are - Jane Brody at the New York Times writing about how people are so much better after a cancer diagnosis. Maybe I didn't have enough cancer or enough suffering. I'm just tired and irritable and my nipple itches.

still thinking about DCIS

This graph (Lancet 1999) compares recurrence rates for DCIS after partial masectomy.

This is really big business. Some treatment creep is occurring. The standard of care is now moving towards breast conserving surgery plus radation plus anti-estrogen therapy. The breast cancer message boards are full of women who have opted for all of that (or bilateral masectomy) for small, low grade DCIS. Any risk, any effort to avoid a recurrence. Of course as treatment gets more elaborate and painful and dangerous, the motivation to not do it again gets stronger!

Would research on DCIS divert attention from breast cancer that actually kills women? But its not like there is someone who actually makes decisions about health care resources...

I still have questions

Rocky surveys his domain.

DCIS: 60,000 new cases a year in the US and you still can't tell me...

* What mortality and recurrence stats are at 15 years?
* How well the partial breast radiation works?
* If Arimidex decreases recurrence rates in post-menopausal women?
* If or how DCIS outcomes are different for comedonecrosis vrs non-comedonecrosis?
* My USC/VNPI index is 7 - does that really predict anything?
* What is the risk of lymphedema (given sentinel node biopsy, partial masectomy, and radiation) for me?
* Do the standard recommendations for decreasing lymphedema (no manicures! not hot tubs! gloves for all activities! don't paint the bedroom!) actually decrease rates of LE and if so, how much?

The bad attitude is increasing as I think about this - and I think about this all the time.

not really over

I slept straight through the weekend and woke this morning to shooting pain in my breast. Squeezing it tightly is the only thing that relieves it, but I went to work today and opportunities to do that were limited. So I'm still feeling sick from the treatment of something that didn't make me sick.

This NYT article on the difficulty of managing cancer care caught my eye right away. I can't imagine juggling appointments and bills and making decision while actually being sick. I was barely healthy enough to handle the relatively straightforward care for DCIS.

http://www.nytimes.com/2007/07/29/health/29Cancer.html?ex=1343534400&en=96695688896a44eb&ei=5124&partner=permalink&exprod=permalink

almost done

I've spent the week having radation twice a day and working on jigsaw puzzles in the waiting room. With my usual talent for dissociation and denial, I think more about the puzzles than what is happening. The experience of radation therapy is painless but oddly unpleasant - the moving table, the moving machines, the distictive three note buzz as the machine turns on.

In three hours it will all be over. I've been tired all week - napping after each treatment - but that's been the worst of it. My nipple is a bit tender and there is a deep, vague ache in my chest wall. Basically its all been tolerable and now it is almost done.