Sunday, May 06, 2007

Why I Have (Almost) No Faith in Doctors in My Area

I could write ad nauseam on this subject. In fact, I have. I have plenty of friends who've received the emails over the last five years, and some of them probably still have them to prove it.

I have also written my Congressman. Multiple times. His office has always responded, been polite, tried to help by making a handful of phone calls, but ultimately been of absolutely no help whatsoever. Not his fault; it's the system that's the problem.

I've also written all three of my Senators -- so glad the useless Fitzgerald retired; sadly, I must report Obama didn't bother to respond; to be fair, neither did Durbin (but Durbin's not running for President* now, either). For kicks, I even wrote to President Bush (you really didn't think he would respond, did you?). Also to Senator Clinton (nope, she's not really concerned about health care ... OR women's health care in particular ... just talking out the side of her mouth like politicians are wont to do), Senator Kerry (not from him either, though he was busy with the Presidential race and all ... ), numerous local and not-so-local newspapers and television news organizations (apparently, I haven't hit them on a slow enough news day yet, and postage is going up again ... along with gas prices, so I'm running out of money to continue going to my incessant doctor's appointments as it is, especially while continuing to fill my I-can't-count-that-high-with-just-two-hands number of prescriptions sent to me by mail).

Anyway, what's on my mind at the moment is the lump in my breast. I found it a little over a month ago. It worried me for a number of reasons.

Before I start, I should mention that for a year in graduate school I was a model patient for medical students for breast exams and pelvic exams for both the MD and the OD schools of medicine at Michigan State University. That means I've been paid $25 an hour to get naked in front of a bunch of pretty terrified medical students in order to assist their supervising doctors/professors in teaching them how to appropriately examine a female patient in a clinical environment. That means, looking back, that I was being recognized as the expert in the room -- as the expert at least on my own body, and to some degree as the expert on female bodies in general -- among a group of soon-to-be-doctors and at least one already-fully-qualified physician. I had no idea then, just how lucky I was to have that experience -- just how rare an opportunity it was. The best and most surprising thing about the experience, though, was how much I learned about my own body -- including plenty I had no idea I didn't already know, much less that I might be very glad to know it later. For instance, from then on, I've known when a gynecologist is able to locate my "shy" ovary or not; many just pretend to, thinking I have no idea. Fools. I'm here to tell you, ladies, that most of the gynecologists out there -- male or female -- are NOT regularly examining both of your ovaries because they have trouble finding at least one of them.

Now back to the lump. As soon as I found it, I knew it was different from the usual fibrous cysts my breasts are full of; these feel like hundreds of BBs. What I found was a different shape and size -- long and more uniform, a bit like a snow pea. I immediately looked for a matching lump in my other breast because if there were a matching lump, then there would be less reason for worry. No match. I noted that while all my usual BB-like lumps hurt (they always do; fibrocystic breasts suck), this lump does not hurt -- at all. Another potentially bad sign. I definitely knew I needed to have this lump checked out further by a qualified doctor.

Well, my annual exam was already scheduled for a week or so later, so I just waited. I decided not to mention the lump to my doctor. I wanted to see if he found it first himself before I mentioned it, as that would let me know, too, whether or not to worry. He found it immediately. He looked for a matching lump and found none. We chatted about it, and I told him I'd just found it about a week before in my regular monthly breast exam, explained how it felt to me to make sure he and I were talking about the same thing, and he said he thinks it feels cystic (which usually means benign), but he wanted me to have a mammogram and see a surgeon for a second opinion to be safe.

This is all still fine and just the way things should be. My primary care physician is an excellent doctor, so I gladly drive an hour each way to see him. It took me over three years to find him, though.

But oh, what I had to suffer through first! I had already been "terminated" by another doctor (Robert A. Brown, OB-GYN in Champaign-Urbana, Illinois) who was so offended when I refused to take a medication he prescribed for endometriosis (Lupron) because I read on the manufacturer's website that Lupron was NOT recommended for people with certain other health issues, one of which I had, that not only did he terminate me, but he convinced an entire full-service clinic (Christie Clinic) to do so as well. Dr. Brown was in the process of joining Christie Clinic, but then did not actually join them ... But he somehow convinced a clinic which he was never a part of, is not a part of, and has no plans to become a part of to terminate one of their current patients whom he didn't want as a patient. I had numerous doctors I saw regularly at Christie Clinic, and by regularly, I mean weekly in some cases. I'd been seeing doctors at Christie Clinic for two years and had long-established relationships with my physicians; not one doctor, to my knowledge, had ever made a complaint about me prior to Dr. Brown's ridiculous complaint. Yet suddenly, based only on the word of a doctor who had -- and still has! -- no connection whatsoever to Christie Clinic, without interviewing or warning me in any way, all my healthcare was suddenly terminated. I was notified by mail that my care with Christie Clinic was terminated. Period. I was not able to communicate with any of my now-previous physicians about the situation. I was not even ALLOWED to appeal the situation with Christie Clinic. Christie Clinic had decided to terminate me, their decision was final, and I was out of luck. I was without all health care whatsoever. It did not matter that I had insurance of any sort (my insurance covered THAT full-service clinic and no other). It did not matter that I had not only NOT done anything wrong, but in fact, had done EXACTLY what I am supposed to do: I had double-checked to make sure that a medication which had been prescribed for me was safe for me to take. And because I had done MY job as a conscientious patient, which may very well have saved my LIFE, I suddenly had no medical care at all! And furthermore, I had NO RIGHTS to fight that decision! It is now some three to four years later, and the situation with Christie Clinic remains unchanged. None of their doctors are ALLOWED to see me because I was "terminated clinic-wide." HOW IS ANY OF THIS EVEN LEGAL?

It is legal, though. I sent a complaint to the Illinois Department of Professional Regulation, and they sent an investigator (Steve Wagy) who drove four hours round-trip to my house from Springfield, Illinois in the pouring rain to YELL AT ME to drop the complaint! He told me any doctor can refuse to treat any patient for any reason INCLUDING THE COLOR OF YOUR SKIN, THE SMELL OF YOUR COLOGNE, and a bunch of other ridiculous bigotry I can't believe is legal but apparently is. That's what we get for OUR TAX DOLLARS AT WORK?

We've changed insurance companies several times, and they've tried to remedy the situation. Blue Cross/Blue Shield wasn't able to change anything with Christie Clinic with respect to my case, even though Christie Clinic is in violation of their contracts with BC/BS as far as denying me care. Currently, we are with Aetna and working on the same battle ... It's not even about whether I WANT to go to Christie Clinic at all; it's about what's right and what's NOT right. It's about principles. And if I can't get things fixed by going through the appropriate channels, then I can at least use my freedom of speech to say something about what's happened to me, to say that it's WRONG, and to say that it should not EVER happen to anyone else.

Sorry, I got sidetracked again. The problems with the medical community in my area make me so irate I do that a lot. Anyway, back to the lump. So my doctor ordered a mammogram and referred me to a surgeon.

I went for the mammogram, which was the usual -- squashed like a pancake (and COLD!) and not even offered my choice of syrup (I like blueberry or blackberry). The mammography technician could feel the lump, which is basically in the crease where my underwire would run ... not an easy spot to get on a mammogram. She marked the spot with a little sticker and tried several times, making me feel palpably more sore each time, but was unable to get that sticker to show up on the mammogram. The technician commented that I was able to tolerate the pressure very well; I replied that I could handle whatever she needed to do for a few seconds in order to protect my health -- also, I knew I would be feeling it the next day a lot more. She took the x-rays she got over to a radiologist, returned, and told me the mammogram was abnormal, so I'm immediately sent, carrying a paper clearly marked, "Mammogram-Abnormal," over for an ultrasound.

The ultrasound technicians (there were two) could also feel the lump. They were far gentler than any mammography machine could ever be. After having numerous ultrasounds on my ovaries for endometriosis and on my kidneys for kidney stones, I have found ultrasounds to be very painful in the past, but these two women were both supremely gentle, and I actually relaxed. They took numerous ultrasound pictures of the lump and both said they didn't see anything that looked to them like anything other than "normal breast tissue," but of course, they cautioned me, the radiologist and the surgeon would have to look at the pictures and reports.

A couple of days later, feeling completely out of proportion with my own body -- I mean it felt like my breasts had turned into bowling balls they hurt so badly, and whenever I wasn't in public I was walking around holding them up with my hands -- I went to my follow-up appointment with the surgeon. He told me the mammogram was normal. This was news to me, and I questioned him about that. "Nothing to worry about," he said. "Just a quick way to get you into ultrasound to look at a difficult area to view on mammography." So are you saying that the mammogram didn't show the lump in question? "Yes, that's a good way of putting it ... God was ... very generous with you." (Gee, thanks, and actually, I've always wanted to look into a breast reduction, but I suppose now is not the best time ... I have a feeling it might confuse him.)

Okay ... Now what about the ultrasound? "Well, I can't see anything on the ultrasound either." I asked what he meant by that ... Is the ultrasound not showing anything to worry about in the spot where the lump is? Or is the ultrasound giving a similar problem providing information on a lump in that particular area like the mammogram is? He hemmed and hawed a little but finally got around to, "This lump is in a really difficult area, and it is not showing up on mammograms or ultrasounds."

Fine, so the next step is a biopsy then, right? "Well, no, we don't want to hack you up needlessly." Uh ... well, I don't consider finding and removing a potentially malignant tumor to be 'needless hacking.' "Well, you see, if we can't see the lump on a screen, we can't biopsy it."

??? This next paragraph occurred only in my thoughts: Okay, now I'm stumped ... Am I a video game? It seems to me that since the lump is palpable by all who've tried to feel it, then it should be simple enough to LOOK AT IT WITH YOUR EYES as you pinch it between the thumb and forefingers of one hand while taking aim at it using whatever tool is appropriate with which to take a biopsy in the opposite hand. Apparently, this technique is now so far from the pinnacle of modern medical expertise that it isn't DONE ... or something. I decide to say nothing for the time being, having already established such an impressive termination record with doctors in this area.

Okay, then, what do we do? "Well, I don't think we need to do anything. I'm pretty sure it's a benign cyst. Most lumps in the breasts are." Yes, I know all the statistics, but if we all listened to those, none of us would have the lumps we find checked out, so why is that a good enough reason for me to not worry just because you're quoting the statistics to me? "Well, the area this is in, this could be a pimple, like from an ingrown hair."

??? More thoughts I kept to myself: Remember when I said this lump was about the size of a snow pea? That's pretty big. If it were a pimple, it would hurt. A LOT. Regardless of what were causing it. It doesn't hurt. At all. I'm not buying the pimple idea. Benign cyst I can buy ... I just want someone to give me solid proof, that's all. And I am NOT asking for too much in demanding that.

The surgeon encourages me to continue monitoring the lump and having annual mammograms (I haven't reached age 40 yet, so I've not yet started my annual mammograms ... this is my second one, though, after finding an odd lump ... the first one disappeared on its own) and to consult him "next year" if needed. He "reassure[d]" me that he "really didn't think this was anything to worry about, although [he] can't guarantee it." No, of course he can't -- that's why he's not paying me $25 an hour anymore to sit in front of him and eight to ten freaked out medical students. Now, it's practice, and I'm supposed to trust him as the expert -- and if I challenge his expertise, he might "terminate" me. Then, it was teaching, and I was one of the experts in the room.

It's not that I'm actually all that concerned that this lump is anything to worry about ... But how the heck is this kind of reaction called "early detection"? What if by "next year," this lump is stage 2, or 3, or 4 of something that could have been taken care of minimally invasively right now?

How many other women get the same kind of response I did ... and then die because of it? Even if I'm not one of them, this worries me. It isn't right. It shouldn't be happening.

When I live in an area where a multi-million (or is it multi-billion?) -dollar breast cancer center is being built, and the best answer I can get is "we don't want to hack into you needlessly," from a doctor incapable of doing a simple biopsy the "old-fashioned" way, I'm a bit concerned all that money contributed by some generous donor is being severely mis-spent.

Because my father-in-law was diagnosed with lung cancer in late November or early December (and has somehow miraculously ended up being one of the few lucky ones whom even his own doctors are calling "cured," but of course we all had our share of scares and tears along the way), I want my husband and his family to hear the words, "her biopsy came back benign." I've been trying to keep my husband out of this whole thing, barely mentioning at all that I found a lump, or that my doctor found it, too, or that I had a mammogram, and so on, because I knew he would be panicked. And he is ... and I have nothing to reassure him with other than, "Well, if they can't see it on a screen, they can't biopsy it." (Good grief ... how do people get pregnant in this day and age with thinking like that anyway? Or did Bush miss the boat on a form of birth control that could actually be effective?) Meanwhile, I haven't told any of my husband's family, or my own family either -- but why should I have to go through this alone? And now I'm stuck in something tantamount to limbo alone as well? Nope, that's just not a good enough answer for me.

I understand the size of my bosom has complicated the initial testing procedures; in fact, I suspected this would be a problem in the mammogram in the first place. However, this in no way makes the next step any less important.

Regardless of the fact that our world has become so reliant on technology and video games, it's intolerable for a surgeon to no longer know how to do a simple biopsy without the aid of a monitor and a joystick, a computer mouse, or some other technological equivalent. The fact is, I could do this biopsy in my own home with the help of an assistant who isn't afraid of needles; a syringe; and a lab technician willing, knowledgeable, and qualified to examine the sample. And my PCP's office will be hearing from me tomorrow about scheduling with a doctor who IS capable of doing a proper biopsy. It's my right to be able to do that much to protect my health NOW -- not after this lump gets big enough to reach a techno-reliant surgeon's radar screen.

(And if my PCP's not willing to listen ... Well then I'll be soliciting cross stitching friends -- because none of you are afraid of a needle like my poor 6'6" husband is -- and we'll manage to biopsy the darned thing ourselves. I surprised myself by getting a tattoo recently; I'm sure I can tolerate the pain of an unanesthetized biopsy. All I'll need then is a lab analyst. I bet there's a cross stitcher out there who does that for a living somewhere, too!)


*For the record, right now I'm trying to decide between Edwards (whom I did not think to write to previously; perhaps I will now) and Obama. What can I say -- they're both HOT! Actually, I really mean that (well, they are both HOT, too); they are the two current Democratic candidates by whom I'm most impressed at this point. There are things I like about Hillary (but she's not HOT, although I am liking her hairstyle lately) -- but the thing I've always liked best about Hillary is her husband (pretty HOT), and even had he always been a more faithful example of a husband than he has been, liking the spouse is not a good enough reason to choose the candidate.

7 comments:

m00se said...

Not to make you any more uneasy, but I'm also (way) under 40 and was ultimately diagnosed with breast cancer which was only visible via a breast MRI. Even then several radiologists debated whether or not the area of enhancement that showed up on the images could be cancerous. Not only were they, but the path report post my mastectomy revealed that there was DCIS all throughout my breast that none of the imaging revealed.

It's true - most breast lumps are nothing to be concerned about, but an MRI sounds like your next best option, even before a biopsy.

Best of luck to you.

Trish said...

I agree with m00se. See if they will do the MRI. If they can't see it on the mammogram or the ultrasound, but they can feel it and know it's there, then they shouldn't be issuing an "it's probably benign" statement.

As for the clinic issue, if it's a private clinic/professional association/practice/whatever it can choose to "terminate" its patients for whatever reason and there's not a whole lot anyone can do about it. Doctors in private practice can choose who they will treat and not even the insurance companies nor the government can compel them to treat someone against their will.

If the clinic was owned by the county or state, it would be a different story. But why would you want to go to doctors who've decided not to treat you anymore? If the ones you got along with aren't willing to go to bat for you, then they've chosen their side on this issue.

stitchwitched said...

I am going to look into the MRI (thank you both for that suggestion, which I was completely unaware of), especially as I had a CT scan about 9 months ago for kidney stones that also noted an "odd" spot that "should be monitored" in the "soft tissue" of the "chest area." (The doctors who got that report back told me not to worry about it further ... Ooops?) I don't remember which side that was on, but if it was on the same side as the lump, it sure makes me go, "Hmmmm."

Regarding the clinic issue, there are a number of reasons to pursue it. First, the doctors I used to see whom I got along with were never made aware of the situation. They were never given a CHANCE to go to bat for me. As far as they know, I moved or something because I just stopped coming to them. I tried to contact each of them, but I was not allowed to -- my letters were each forwarded to the clinic attorney. My phone messages were also forwarded to the clinic attorney. What else could I do to reach them? I did try finding home telephone numbers, which felt like a very invasive thing to do on my part, but I was unable to locate any so using them waa a moot issue.

Each of the insurance companies we've had to choose from has had a contract with that clinic under which that clinic CANNOT refuse to treat a patient. Therefore, the clinic is in violation of their contract with our insurance companies ... but I'm just the little guy with very tiny pockets, and the insurance company doesn't want to bother taking the clinic to court, which is what would have to be done to resolve it. So we keep changing insurance companies hoping for a different result, a more forceful lawyer on the insurance company's side, or whatnot.

There are two hospitals in our area. For an emergency, I can go to either. I go to the closer one, which is affiliated with a different clinic. I actually like that ER better, but I much prefer Christie Clinic doctors to the other clinic's doctors. Anyway, the problem is, since all of our insurance companies have covered Christie Clinic but not the other clinic, for me to go to the other clinic, I have to attempt to make an appointment with Christie clinic, be refused, report the refusal to my insurance company, have my insurance company go through their internal process trying to resolve and then documenting the problem, and then finally I'm granted permission to see a doctor at the other clinic. (For some stupid reason, the insurance company won't just make an across the board decision allowing me to go to the other clinic; that would solve this problem to a large degree.) This process can take two weeks or more. When I've had an ER visit, the ER wants me seen in less than 3 days, and I'm averaging about 5 ER visits per year. My continuity of care is non-existant because of this issue, and it's damaging my already fragile health even further. (Christie Clinic apparently cannot spell M-A-L-P-R-A-C-T-I-C-E very well.)

Patti said...

Heather

I am so sorry about what you have been going through. I only came here to tag you but on the other hand maybe not. Ummmmmm if you want to you can be tagged if you don't I will understand completely and totally.

If you want to then please consider yourself tagged. To find out what this means you have to visit my blog which is http://tapestry-of-dreams.blogspot.com/

But either way please write and let me know what is happening - the MRI sounds like a really good idea. Go for it girl.

Love
Patti x

stitchwitched said...

What do you want to know, Adana? I see you, you know, and the only reason I care is because you keep coming back to read THIS post. Is there something I can answer for you?

stitchwitched said...

Adana, when I get around to posting with an update regarding my health issues, I won't be putting it here in the comments section of an old post. I'll be making a new post where most people will be looking for it.

If you like this post that much, maybe you should print it out.

And I was serious. If there's something you really want to know, just ask. The worst I can do is say, "No, I'm not going to answer that," but I've shown myself to be very willing to disclose and discuss what most people would consider private in a last ditch effort to find assistance, so it's really quite unlikely I'll blow you off. I won't answer you in private because then the info won't get to the people who might actually care or know enough to help (because I do know you aren't one of those people), but I probably will answer.

Wanda See said...

Switchwitched, I just read your posts and those of the other folks here. I'm wondering what happened about your lump -- and about the Christie clinic. Geeez!

You mentioned that your lump felt like a snow pea and that it didn't hurt. Well, I have one that, as of last week, felt like a thumb -- same basic shape. Two mammograms failed to catch it. I had it checked out manually, and the gyno said he definitely felt it, too. So, this Friday, I'm due to visit a cancer specialist. I'm both frightened and annoyed, since they said something about my having yet ANOTHER mammogram. I'm going to try to get them to dispense with that and go onto the ultrasound.

There's no history of breast cancer in my family, so I'm not actually afraid of having that. I AM afraid, however, of having to have expensive stuff done to me that I'll have a hard time paying for. My insurance only pays 80% of ALLOWABLE charges. So I'm just going to tell them that upfront and see what they can do to reduce costs.

Please post an update on yourself. You're a fascinating lady!