Tuesday, June 3, 2014

Breast Cancer Treatment: Does It Need a Report Card?

I was in a room recently while some breast cancer patients and "survivors" listened to a Physical Therapist talk for over an hour on dealing with the lymphedema from having lymph nodes removed.  I may have been the only survivor there who still had all her lymph nodes.

When I realized the whole presentation would center on lymph problems, I was tempted to leave.  But I stayed because nobody can predict my future after DCIS and Tamoxifen.

I am not impressed with what medical science has done for these women.  One had surgery years ago for facial cancer and is still disfigured and having trouble with lymph.  

The PT talked at length about the kinds of massage for the swelling of the edema and re-routing the lymph, and the daily outpatient  bandaging.  And the at-home "stocking."  And how some women have a swollen arm until they die many years later!  About how they are at risk for the rest of their lives for edema (in addition to being at risk for recurrence.)

There were mutterings,and exclamations from the other side of the room:  "Why don't they think of some other way than taking out lymph nodes!?"   "Why don't they do something?"

 Two experimental treatments were discussed - neither available since they are experimental, and insurance companies won't touch them. And neither will our bank accounts.

The heartbreaker was a woman dealing with this edema because the diagnostic test with purple dye had not worked, so her nodes were taken out.  They were perfectly normal!   Is there any excuse for that?
Or maybe the heartbreaker was the woman, once pretty, who still has a bandaged eye after facial cancer, and a swollen cheek many years after lymph node removal.

Two women were wearing thick "stockings"  on hand and arm in Texas humidity that hasn't reached its peak yet this year.  Those stockings shout "old woman," and probably dealing with them makes patients feel like "old women."  I have a friend who had breast surgery several years ago, and still has a "stocking" and even one for her hand.  Not the sort of thing one wears to a job interview.

How much should "survivor" women  be required to deal with?   They go on with housework, jobs, and even travel and have families and children with all the pain we face with our loved ones.  Then when the others sleep, these patients are dealing with their lymph.  They finally join their spouses in bed, where they can only sleep on one side, favoring the fat, unattractive, uncomfortable "stocking."   

 Most of the women there were grey-or white-haired.  I'm guessing the younger lymph node removal survivors were at work.  Or were they at home trying to get strained baby food off that thick, ugly arm pressure stocking?  

If this doesn't make you unhappy, maybe this ad I just saw will:

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Maybe someday someone I know will trust one of those five-day wonders?

These survivors are valiant. Were all of their doctors equally valiant?  

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