Tittyology

My MRI - and a lesson for you

I had an MRI on Monday. It wasn't too bad. I had talked with a friend who has had them done (for different reasons.) My biggest concern was laying down in the tube. (I got stuck under my grandmother's bed as a kid when we were playing hide and seek. Ever since then, I've been afraid of laying face up with something directly over my head - a little claustrophobic.)

Luckily, for a breast MRI, they have you lay face down. There are two square holes in the table into which you drop your boobs. (The purple plates on the sides of the squares don't compress the boobs like a mammogram. There was no squishing of the breasts....thank God because the test was 30 minutes long.)

One of the gals gave me an i.v. There was a little pinching as she found my vein...not her fault, mine are hard to find. She tested the i.v. by running some saline solution through it...still not so bad. Then she said that they'd announce when they were going to inject the dye. She said it would feel chilly going into the vein and that's why they'd announce it - so I wouldn't be startled. - Very considerate of them...unlike a certain doctor that did my last biopsy.

I positioned myself face down on the table. They placed pillows under my legs and laid blankies on me...it was quite snuggly. Then they handed me a plastic ball that I could squeeze if I got freaked out or if the i.v. started to hurt (which it didn't.) They also placed a microphone in my ear so that they could talk to me while I was in the tube.

The slid me in. I was quite comfy and that's when the noise started. Loud noise. Thank God I had the microphone in one ear and was laying on the other. There were two different sounds. The first would last for about six minutes. (They tell you how long it will be. You can't wear a watch or jewlery in the tube.) This noise sounded kind of like a cross between native American drumming and Tibetan monks chanting "ommmm."

The next noise - much shorter duration, about a minute or so - reminded me of a bass guitar from an 80s hair band and a duck quacking. Yes, it was a little odd.

30 minutes later, I'm out of the tube. First question the gal asks me is, "Are you premenopausal?" No, I tell her....now, my mind's racing...did she see something that tells her I am? This is bad. I still want to have children!

She says, "Well, you marked premenopausal on your chart." Oops. Whew.

Then she asks me about my period. I tell her when it was...

"If I had know that, I wouldn't have done the MRI."

WHAT??

"Yeah, anything over 7 to 14 days in the cycle can cause a false positive for breast cancer."

AAGGHHH! So, I just went through all this and spent two weeks fighting with my insurance company for nothing?!

She said she would mark it on my chart so that the person reading the pictures would know, but now if they find something, I'm going to wonder if it's really there or if it's because of the time of the month that the test was done. Maddening - because there were also mix-ups with my biopsy.

So, the question I ask is, "Why didn't someone ask about my cycle when I made the appointment? Am I supposed to magically know this?"

Lesson for you: If you're scheduled for a breast MRI...be aware that your cycle affects the testing. You need to be between the 7th and 14th days in order not to affect the validity of the results.

I get my results next week. Fingers crossed.

In Sickness and Prevention

This article is a wonderful idea regarding the health insurance crisis. Definitely a must-read. In light of recent battles with my health insurance company, this sounds like an idea that would be a real solution rather than a band-aid on the overflowing dam that is our current health care system. I certainly don't have any brilliant ideas for a solution, but these guys do. Check it out.

http://www.washingtonpost.com/wp-dyn/content/article/2006/10/16/AR2006101600880.html

These gentleman are at least offering some newer thoughts on an old and increasingly problematic issue.

To see my story on the battle for preventative care, click here.

Breast vs. Board of insurance

After a week of explaining the situation and asking repeatedly why they'd let me go ahead and develop cancer rather than catch it before it had a chance to get entrenched, they just say it's not covered...I even asked why they'd want to wait and let me develop a potentially deadly disease when the cost of care would be more expensive than prevention. The response: Just because we're saying we won't cover it, doesn't mean you can't have the treatment.

So, Friday, I made the appointment, planning on paying for it myself. (I had gotten the go ahead from the facility where I am to have the MRI. Their radiologist seemed to think it was a good idea...and he didn't have to think about it very long.)I consider myself fortunate because I'm able to pay cash if necessary. Boils my blood to wonder how many other people have health care coverage and can't get preventative treatment.

I got a call today telling me officially that they weren't going to cover the MRI. (My breasts and I were going to lose this one.) They said, "We only cover MRIs if you have cancer." Now, maybe it's just me...but doesn't it make more sense to get the cancer before it's full blown and hard to control? Hey, maybe it's just because I'm personally interested in the case and that's affecting my judgment in this matter....a few thousand dollars vs. my life and health. Might not be that much to the insurance company, but it sure does mean a lot to me!

I managed to maintain my composure - no crying, not stunned...I'm becoming numb to the insanity, I think....so, I explain again my situation and that they're looking for a cancer that may be underlying what they've seen so far...She takes all the information and says it must go to the "higher ups."

I finally got approval late today. It had to go up the health care food chain. Then, one of their medical people called my doctor's office today and said he just didn't understand why this was necessary! - She explained once again the current danger and family history, and she, too, questioned him about why they'd want to let me get sick rather than keep me healthy.

Seems that even if you have insurance, you can't use it to keep from becoming sick. Seems you have to be really sick to use it. Maybe they make more money that way...not sure how this works. I'm baffled. Healthy is good, right?

First use of word "bra"

The word "brassiere" - where we of course get our word "bra" - was first used in an American publication in a 1907 copy of American Vogue. The original French term meant "support" but hadn't been used for quite some time. They used the word soutien-gorge which translates literally as "support" and "bosom or breast". It translates better as simply "bra" or "uplift"- definitely what I'm looking for. Well, that and a little padding! - Okay, a lot of padding...

Referral Hell

So, yesterday, I resigned myself to the fact that I am having a lumpectomy. I even manage to look on the bright side and say, "Hey, I'm one of the lucky ones - at least they caught mine and caught it early. Others aren't so lucky."

Today, I'm trying to get permission to make the MRI appointment so that I can then go ahead and have the surgery, and I'm told that this won't be covered. They cover MRIs for all sorts of other reasons - even to look for something ruptured in the breast - but not to see if there is cancer lurking in the dark corners of my boobs! I was stunned - I'm stunned a lot lately.

What I wanted to do  was scream into the phone, "What do you mean you won't cover it?!!" But all I could do was mutter, "uh-huh" and fight back the tears. In addition to being stunned, I seem to cry a lot lately, too - and I'm far from being a cryer.

I talked to yet one more insurance person who, after reading that the request was indeed marked urgent, it was still going to take the requisite 72 hours for approval and that there was no actual timeline for approval - the 72 hours was the earliest it would be approved, or not, in this case.

It is beyond my comprehension that anyone would deny a person access to technology or treatment that could be lifesaving. The gentleman I spoke to said, "Well, just because we don't approve it, doesn't mean you can't have the treatment." Yeah, and I have to pay for it myself. I have insurance for a reason! And actually, I'm lucky because I can afford to pay for it myself. What about others who can't? Now we're talking life, death, and the almighty dollar...Makes me sick.

Now for a phone call back to the doctor's office to see if they can do anything on their end. I need to just put their number on speed dial. Would save some time.

Size doesn't matter

At least when it comes to milk production. Did you know...that the milk producing structures are the same in all women? i.e. Just because one woman's boobs are bigger doesn't mean she would have or make more milk.

Here's an interesting slide show on breast anatomy from the Mayo Clinic.

Questions Answered

I talked to my primary care doctor today. I feel better - not because I got good news, but because I understand better what's going on.

She said that she just went to a conference last week on breast MRIs. She thought it was an outstanding idea for me to get that done. She also said that she learned that recent studies have shown that patients with "atypical ductal hyperplasia" usually develop breast cancer in 6 to 8 years.

There's my answer.

The Navy insurance won't pay for any plastic surgery, but she said that another woman had the same thing done three weeks ago for the same reason and that her breast tissue had filled in...I was picturing having a big hole in my chest. The scar doesn't bother me so much...I grew up in the south and the mosquitoes loved me. I couldn't keep from scratching them, so I have a few scars!

Titty Twilight Zone

I got back from the doctor – my second opinion, and certainly not the opinion I wanted to hear…Actually, I didn’t hear much after the word “lumpectomy.” That’s the first time any of the doctors had used that word. After hearing it, any intelligent questions I had vanished…as it seemed would soon be happening to a portion of my left boob.

It’s several hours later, and I’m still stunned…Mostly because I don’t have cancer.

Yep. You read that right. I DO NOT have cancer. So, why the lumpectomy?

That’s what I’m asking…rather, it’s what I should have asked earlier today. It’s why I went for a second opinion. You see, I had a stereotactic biopsy in August after some new calcifications were spotted on a mammogram. A week after that biopsy, the results came back negative, everything benign – no sign of cancer. I celebrated and breathed a huge sigh of relief. Finally, my husband and I could go back to trying to make babies…which I was told to “put on hold” until this matter had resolved itself, and we knew what we were dealing with.

I got a call a week later saying, “I’m sorry, what we said before….well, that’s not completely true.” I’d like to say that I asked intelligent questions and kept it pulled together. But, I didn’t. I stayed calm long enough to hear that they wanted to do a “needle loc biopsy.” – i.e. they wanted to take another sample – a bigger sample, about the size of a flat quarter – in order to see what it is.

Then, I fell apart. All I understood them to say was that they’d made a mistake, and that I did, indeed, have cancer.

It seems on a closer look, under magnification, some atypical cells showed up – atypical ductal hyperplasia and flat epithelial atypia. (I’m working on installing a dictionary on the side here. After spending the better part of the last few months with my nose in a medical journal, these words roll off my tongue, and now my fingers, as if I had been speaking “medicalese” my whole life.)

The Breast Care Coordinator then explained it to me like this: This surgery would be kind of like removing all the suspicious moles from your body before they have a chance to become cancer.

Still, I decided to research - nobody was going to be cutting on me until I had a decent understanding of what the heck was going on. I called the original doctor, peppered her with questions from my research, and asked her point blank, “Do I have cancer?” Her reply, “No, you do not have cancer.” Whew, another sigh of relief from yours truly.

Then she added, “But there’s always the possibility that I could have under diagnosed.”

Just great.

So, I made an appointment with the surgeon. At this point in my research, I wasn’t terribly convinced that surgery is necessary, and at that point, I was still under the impression that the surgery was an effort to positively identify, without any doubt, what was seen in the biopsy.

After hearing my family history, the first doctor decides that it needs to come out. When I ask him how much he’ll be taking, he says, “Oh, nothing larger than a golf ball.”

If you could see my boobs, you’d know that in the area where they’re talking about, there isn’t a “golf ball size” available. I have the kind of boobs – small – that slope, with the top portion being flat and the bottom being fuller….yet even at the fullest part on the bottom, a golf ball size would leave a huge hole.

It should have occurred to me right then and there that, “Helloooo! They’re talking lumpectomy!” But, I swear, when people start talking about removing pieces and parts, the ability to reason disappears, at least temporarily. What did I do? I numbly filled out the information for the surgery, and let them schedule it. I left the hospital in a mental fog, got really angry and cried. Once I calmed down again, I started investigating a second opinion…and how to deal with the insurance in order to get the second opinion, etc, etc.

Eventually, I found a doctor for a second opinion and was sure, or was hoping, that she’d recommend something more reasonable…at this point the removal of a quarter-size piece is sounding like an appealing option.

She began taking my medical history and upon hearing that three of my aunts were diagnosed before, or at, 40 years of age, this doctor says, “Oh, it definitely needs to come out.” (One of those aunts died at 29. One in her early 40s. The other made it many years after the 6 month prognosis she was given.) So, I can understand why they're being careful. Even though I understand, it doesn’t mean I’m not depressed and scared at the prospect.

Now that I’ve calmed down again, I have a couple more questions to ask tomorrow, and they’re written down this time…thought I had learned my lesson about writing the questions down. Guess not, but I hadn’t expected to hear the word “lumpectomy” which the Breast Cancer Book, by Dr. Ruth Grobstein, describes this way:

“Excisional biopsy,” “wide excision,” “lumpectomy,” “partial mastectomy” – these terms are all different names for the same procedure. Each mean removal of the cancerous tissue in your breast as well as a surrounding rim of normal tissue.

So, thus the feeling of being in the “Titty Twilight Zone.” No diagnosis of cancer, yet I’m getting a cancer “treatment.” I'll just have to call back tomorrow and get some more answers.

Don’t want to sound like I’m whining. I’m grateful to have my health, and I want to keep it. Even with all my research, it seems there was a huge misunderstanding on my part. Still, I can’t complain – or I shouldn’t – I should be grateful to have doctors that are careful. One of my aunts wasn’t so lucky…she actually had a lump, and her doctor kept telling her it was nothing. Nothing turned out to be a very aggressive form of cancer, and it was much too late to really do anything.