Inside My Head

That was the physical.

The emotional is harder to pin down.

I am predisposed to fear, because of the death of Natalie. That is a fact.

But this process has made me think a lot about medicine, about technology, and about not knowing.

I do know now that I do not have breast cancer. That is nice. And I know for people whose breast cancer was not caught--they would envy the care and diligence with which my doctors paid attention to me. Indeed, I know that I was afforded the luxury of these tests precisely because I have the best of insurance and my insurance would pay for them. If my insurance had not paid, I do not know that the doctors would have made the same decisions. My great insurance entitled me to more expensive and invasive tests.

But here was the side-effect. For six weeks I was in hell--either at appointments, waiting for appointments, being tested, or waiting for results. Even with the best insurance there is to offer I will pay a lot of money, and the bills will keep filtering in for the next year and a half.

I was told the procedure would be non-invasive. I now question what that means.

For three days afterwards I could not close my eyes without imagining I was back in that room with the machine drilling into me and the blood everywhere. I could not sleep. I read terrifying mysteries to soothe myself. My doctors said this would all be nothing. In fact, so many doctors handled this process I feel like a piece of meat floating down a conveyor belt. I do not even know who I would talk to if I wanted to say, "Hey. That was really unpleasant. You should alert people that this could be emotional--even beyond the fear of having cancer."

I have recovered well. I am not infected. I am not ill. But my breast is huge and swollen and emotionally I am a wreck. Even knowing I am OK, I feel violated, and angry. My body is strong. But my mind is feeble and fragile. One friend estimated it will take me three weeks to feel normal.

I feel that because machines have trouble with dense breasts like mine, I must undergo more extensive testing. Is that right?

MRIs are notorious for way over-enhancing--in other words many things that enhance are not cancer. They are also good because in the process of over-identifying enhanced spots, they catch tiny cancers that no other technology can catch. If I had cancer I know I would be grateful.

I now have a scarred and swollen breast that will have a permanent lump. The experience was so unpleasant I think I may opt for the European model and wait until I am 50 for my next mammogram. I feel betrayed by a medical system that grossly underplayed the physical and emotional trauma that having a foreign body--however small--drill into you, has on the psyche.

I wonder if our medical system relies too much on its technology. I wonder if it teaches people to put too much faith in technology that is still often wrong. I wonder if we love our technology so much that we order people who have only a minute chance of having a disease to undergo tests to take the possibility of disease down to zero. I wonder if I should be part of that decision. I wonder if we underestimate the trauma of tests and overestimate the peace of mind and accuracy that tests bring.

An I wonder how the tests themselves will alter how I am treated in the future--even though the best doctors and technology have never found any cancer in my body.

Breasts

I'm fine. I don't have cancer. My MRI results are in, and according to the MRI my breasts are dense, young, pert and extremely healthy.
But I have learned so much in this journey. Women are told they should get mammograms starting at 40, but the truth is that mammograms rarely pick up tumors in women in their forties. One UCSF physician put the chance of finding a tumor with a mammogram in a woman in her forties as one in a thousand. Ultrasounds help some for younger women. Together you get a better look, but you still can't see much. The mammogram basically works for post menopausal women who do not have dense breasts. Doctors pronounce to me, and all my friends, " Your breasts are dense," as if that is a horrible thing. But women in their forties have dense breasts. That is the way they are made.
If you can't see, but you think something is there, the next step is the MRI. The MRI is great, you can see every little thing. But the test picks up so much you get many false positives--that is things that look like tumors but are not. It turns out the MRI is not flawless either. The MRI must be done at exactly the right time--7-10 days after your period starts--or the hormones will make things look weird. On top of that, despite the astronomical cost of the technology, reading the MRI films is an art. Some people are better at it than others. A top hospital will know when to take the breast MRI and will have someone who specializes in tissue. A smaller hospital will have one person reading all the MRIs-bone, tissue, whatever. It makes a difference.
MRIs cost a lot of money. Insurance does not want to cover it. We cannot afford to do this for every woman. So, in the end, the best test for a woman is to find her own tumor. And to ask a lot of questions.
Today, as I was waiting for my own test results to come in--after drinking, watching too much television, doing african dance, yoga and extra grocery shopping, in an effort to anesthetize myself and not think AT ALL, I met a guy in a park with Benji who turned out to be another dad at Theo's school. Talk turned personal and he said his wife had had breast cancer in the last year. She had found a lump in her breast, and gone to her doc. Her doc referred her to the Tower Imaging Center (where my mammogram was done) for a mammogram and ultrasound. They told her she was fine. A year later she went back and the lump had grown. They said she had cancer. She had to get chemo, radiation and a lumpectomy. If they had found it earlier everything would have been different. She did everything right, and she still got a clean bill of health. I told my "breast specialist" who I met because my doc demanded a second opinion after a "come back in 6 months for another mammogram we found something weird but it is probably benign" from Tower Imaging, and she said, if you find a lump you do an MRI and you stick a needle in. But this woman had gone to a top center, and they didn't.
After hearing this story, and hearing the mistakes made with my own friend, at a top medical center, the scariest thing is that the medical establishment acts like if you get a mammogram and ultrasound and all is clear you are fine. But that is not true. These sophisticated machines are far from accurate for younger women. They may be better than nothing, but all a mammogram really does in a young woman is provide a baseline from which to measure change. Shouldn't women be told that so they can advocate for themselves? I have three friends my age who have had breast cancer. One is dead. Young women are getting breast cancer, shouldn't we be getting more information out there? Shouldn't women know how little these machines really tell you, how important it is to find a top person, and that the person you need to trust the most is yourself. Shouldn't they be told that you must demand more tests, ask lots of obnoxious questions, and never, ever rest until you have done all you can, and researched and advocated for yourself far beyond what you ever deemed necessary.
I need to write about this. This is one thing I can do for the memory of Natalie. Women need to know that they need to fight and demand and ask for second opinions and demand the extra tests, and they need to begin to fight for the insurance to cover them. This is my next battle. My next cause.