Friday, July 27, 2007

Disconnect



Most of them were crazy, or demented. Sometimes they were brought in by an obviously discomfited relative, a daughter, and there was always something off, something that made it, at a certain level, understandable. "I had no idea. I thought I'd been smelling something, but her whole place was so awful, and she refused any help. She'd get angry when I tried to help. One day she let me help her bathe, and I saw it... Is it bad, doctor? Is there anything you can do?" Parents embarrass their kids all the time; on the soccer field, at birthday parties. This sort of thing is beyond the familiar by a factor of ten, or a hundred. To let a breast cancer advance to that point, one's grip on reality has to have loosened. Lots of people put off seeking medical attention. With breast lumps, I heard many attempts at explanation: I didn't think it was serious; I thought it would go away; I thought it was getting smaller. Even at the point of ulceration, women would claim they just noticed it. The inappropriate smile, the sense of disconnection, a certain dishevelment. Which is why Julia blew my mind.

Dressed like a doily, hair perfectly tinted and permed in tight waves contained like the kids of a strict school-marm, she sat before me and slightly pursed her sticked-lips, which were painted precisely within the lines. She was powdered and rouged, in the manner of the ladies of elegance; subtle, tasteful. No self-mockery, no flags raised; it was by the book, and she exuded a talcumy tastefulness, smelling grandmotherly in the nicest meaning of the term. Completing the picture, she'd been -- and remained -- a bank teller for three decades. A fixture in her slice of the community. "I've found a lump in my breast," she said, quietly, eyes on her hands folded neatly in her lap, not able to meet mine. Embarrassment, not fear, was what I sensed. After perfunctory data-gathering, I showed her into the exam room and gave her a gown.

In the red and seeping crater that occupied almost the entirety of her right breast were layers of kleenex. Cut into little squares, laid orderly one upon the other like baklava from behind the looking glass, the tissues had also been lightly perfumed. By their thickness and leather-like texture, I could tell they'd been there a very long time. As had, of course, the tumor itself. Years, more likely than months.

What were you thinking? How could you let this happen? is what the mind screams. I've seen more than a few like this (though never so tidy) and have never been that blunt. In the case of Julia, after a mental in-drawing of breath, I said simply, "You're probably worried this is cancer, and I'm quite certain it is. But, you know, when they grow large like this there can be some good news. The really aggressive ones spread fast before getting this big, so it sort of declares itself a slow-grower. And we have a good chance of controlling that kind." She nodded in small and quick excursions of her head, assenting in silence to my request to shave a piece of the tumor for testing. Because tumors are devoid of pain nerves, such a maneuver is painless.

What you aim for is local control; a way of treating and extirpating the tumor in such a way as to eliminate the festering and prevent its return. What's done is done: most likely, cure is out of the question -- although as I told Julia, this indolent behavior leaves open the possibility of long-term survival. In elderly ladies, most breast cancer is very sensitive to hormone therapy, which provides a well-tolerated and home-based way to regression of the growth. I've seen large and ulcerated masses shrink and heal over with only such treatment, after which -- unless refused, or prohibited by underlying fraility -- a simple mastectomy has been followed by permanent quiescence, locally. When needed because of medical risk, I've done the operation entirely under local anesthesia. I'm certain that, given the simplicity of the treatment, some of those ladies wondered why they'd waited a lifetime to be seen.



[photo from edinphoto.org.uk]

24 comments:

Petri said...

read a similar story in another book titled "Final Exam," though I can't recall the author at this moment. It astounds me that it is so common an occurence that two separate doctors would remark about it. I would hope in my case that if I ever felt lumps I wouldn't hesitate. However, denile is a strong force with which to contend.

Miranda5 said...

Just a moment to tell you that I added you to my blogroll--if that's alright.

And yes, I do have post on surgeons. Just a bitty one.

Miranda5 said...

Oops, here is my url. http://miranda5.wordpress.com

Thanks.

Anonymous said...

I see huge skin cancers on patients a couple of times a year. Last month I removed a Basal Cell Ca that had enveloped the ulnar side of a farmer's wrist. Its total size was about 15x15 cm and it invaded the ulnar nerve and artery. Cool case for me, but it sucked for him. Why did he finally come in? His new girlfriend couldn't stand the smell.

Anne said...

Excellent post - in fact, I'm going to steal your idea for my own blog (don't worry, I'll give you credit). I had breast surgery when I was 18. There is nothing, next to a pap smear , as horribly terrifying to a young woman than having a man touching her breasts in a, "This is a problem," sort of way. Gentlemen surgeons: please be extremely respectful of a woman's breasts - think of it as a female doctor pronouncing the worth or viability of your penis. . .

codeblog said...

So what happened to your patient?

Bongi said...

as an intern, i once saw a sangoma that came in with a history of a breast mass felt for one week. on examination she had a soccerball size tumor invading the chest cavity. what had been there for a week was the central necrosis had finally broken throught the skin leaving a cavity that you could put your fist into (no i did not put my fist into it). the thing that was maybe more shocking was the fact that the cuban surgeon wanted to debride. one of my fellow interns transferred her in the dead of night to a tertiary center.

Sid Schwab said...

She was one of those I described: dramatic regression on tamoxifen followed by simple mastectomy and continued tamoxifen. She lived many more years and returned to her job. We'd considered chest wall radiation, but she demurred.

rlbates said...

You are so right about the "mental" screams of why! It is hard sometimes to keep from blurting them out, but denial &/or fear is usually the answer. It seems that it is usually a hygiene dilema that will finally bring people in (or force the family to bring them in).

Lynn Price said...

I admire the mental scream. Mine would have been quite audible, Sid. Great post, as usual.

Anonymous said...

I've come across it twice. Once in "Real Life" with an in-law relation. She's always been thought of as simple, but she's married with two kids. At 40 years of age or so, she ended up with a fist-sized ulcer on her breast before someone else saw it and forced her to the doctor. She had a mastectomy and is cancer free now, 15 years later. It disturbes the younger family members that she doesn't wear a protethsis (or a bra), but that's their problem.

The second time was recently, with another long-term member of a natural living message board. She treated her known breast cancer "naturally" with poltices. The natural providers told her that the ulceration was her body naturally pushing the cancer out, and she viewed that as a very positive sign.
She died last month. The allopathic treatments she sought out were too little, too late.

Bohemian Road Nurse... said...

I am one of those people who have "doctor-phobia" about problems with "personal areas". I mean, I'll go to the doctor for the flu or other such things where I don't have to take off my clothes, but it just about takes an act of God for me to go in for things involving personal areas and the wearing o' the gown. And here I'm a nurse and should dang well know better. Thank you for a post reminding me that I need to bite the bullet and get my butt in for regular check-ups on such things. (Fortunately, my doc's PA does those type of exams and is a woman, which helps some.)

Miranda5 said...

Thanks for visiting, Sid. I think you would appreciate my comment.

Ciarin said...

It's not always denial/shock although probably most of the time it is. Sometimes its culture - saw a Native American 78 yr old woman with a breast mass - refused any and all diagnostics/treatments. I didn't ask why as I was only observing this visit, but based on the Native American population I was working with - sometimes it is what it is and this is the plan for you. Culture. It's an amazing thing.

Greg P said...

Denial is a many-layered thing, but very powerful, usually capped off by a denial of being in denial.

Anonymous said...

I once took care of an elderly woman who was bought to the ED by her family with a large bandage over the right side of her face. When I lifted the bandage, I saw a huge, necrotic crater that had invaded the maxillary sinus and orbit. She had no right eye. The reason she was brought in was fever and mental status changes. The cribiform plate had been invaded and the patient had meningitis. She had not previously sought medical care, and her family had not insisted on it. Denial is not always a lonesome place. I still get chills remembering this woman and her family.

Harry said...

really great story, do you know what happened after? It's strange how people seem to be in denial about such things, but even as a young generation I can sort of tell that some of my friends could easily do the same thing despite the availability of screening and information on lumps.

you are fast becoming my fav blog!

Carver said...

Hi,
I'm a lurker on you blog but thought I'd comment on this one.

My nodular melanoma would fall into the category of which you speak. I had one doctor make me feel like a stupid pregnant lady for coming in with my symmetrical blue/black mole that bled around the edges (my obstetrician had suggested I go to a dermatologist). The dermatologist said it was nothing, pointing to the fact it was symmetrical and he was impatient with me.

Like a total idiot, I swore I'd never see another dermatologist. I kept that promise to myself for 20 years until I got tired of clothes getting caught on it (it formed a large dome shape on my hip). When I finally saw another dermatologist, he said it could be nodular melanoma but doubted it since he didn't think I would have survived 20 years with nodular melanoma.

Turned out it was at least 6.9 mm breslow, and another 2.8 mm residual dermal MM removed during wide excision and one inguinal node with MM. All things considered I've been lucky as hell since I've gone 2 years without recurrence since my groin dissection.

I mostly blame myself but it didn't help that I was made to feel dumb when it first popped up and I went to have it checked right a way. I wonder how many of those patients who wait too long have similar experiences to mine.

I enjoy your blog, Carver

Sid Schwab said...

Harry: thanks! I'm liking yours, too. Wit aplenty. Scroll up through the comments: someone else asked how she did, too. Answer: well!

Carver: I don't doubt that such experiences as yours -- doctors can be total jerks -- affect many people in their future encounters. I wish more doctors understood that. But it certainly doesn't explain the behavior that I -- and some of the commenters here -- described.

Anonymous said...

Why did Lance Armstrong ignore his increasingly large testicle for so long? He kept telling himself that it was due to some sort of biking injury (as he's related in interviews). The thought that it might be testicular cancer did not register on his radar.

I think the scenario that carver describes could play a role: a patient shows something to a doctor, doctor says it's nothing, don't worry about it, and so on. Dr. Schwab, you have no idea how many 40+ year old women are told by doctors time and again that their concerns are silly and/or all in their head (and it doesn't matter how much education a woman has, if she doesn't have 'MD' after her name, she's assumed to be ill-informed until proven otherwise). Unfortunately, when a concern is not a silly one, the conditioning that a woman has previously undergone in her interactions with doctors will color her subsequent decisions about any new symptoms she may have. To the point that a woman may hesitate to bring up a concern she has with a doctor.

Anonymous said...

My mother (b. 1909) as a young girl had the task of sitting up with her grandmother at night to make sure she didn't fall out of the rocking chair where she slept in brief naps. She had breast cancer, a great stinking ulcer as you describe, and she died from it.

In the early Fifties, while I was in high school, my mother developed a lump the size of a pea. She went straight to the doctor, a brisk Scandinavian, who said, "You are a mother. We will take no chances of you not surviving. Tomorrow we operate." And they did -- a radical mastectomy. She lived to 89.

Sometimes she was fairly matter-of-fact about her scar, which she described as looking as though she'd been attacked by a pirate's saber, and sometimes she was very angry, saying that she felt like a skinned rabbit. The weakness of that arm, which had some muscle removed, made her more determined to rebuild than anything else. She was never one to be breast-proud, or body-proud anyway, having learned from the Depression on a farm that one must be stoic and tough, if not for oneself then for others.

She told me the stories and showed me the scar right after the operation. It was a bit overwhelming, but I've been alert and conscientious until lately when the mammography has become so brutal (all that squeezing) and the explanations so missing, that I have a hard time making myself do it. The last doctor gave me a painful pelvic ("Well, senile vaginas are like that."), ripped a prescription for a mammogram off her pad, said, "At your convenience." And I was out the door. A woman not much younger than myself (nearing 70).

It appears that over the years and in various places, one faces different kinds of obstacles. I wish it weren't so necessary to learn through experience.

Sid Schwab said...

anonymous: I loved reading that. Beautifully written. Thanks.

SeaSpray said...

My girl friend's mother died of breast CA and didn't tell anyone until her breast was black.

I heard about this after she had passed away and don't know why she waited. More recently an aunt had let a lump go with out even telling her sister who has recovered from breast CA and now is still undergoing treatments.

It is a terrifying feeling when you are concerned about a lump and I can imagine anything else life threatening. Some people must freeze up and hope for the best.

SeaSpray said...

I meant to say that this aunt is now going through treatments.