Wednesday, May 21, 2008

Bad Doctoring

Later today I have yet another doctor's appointment to try to figure out what is going on. So far, my experience has been a lesson in bad medical care.

Several months ago I noticed a small swollen lymph node in my left groin area. It didn't hurt at all. It was just enlarged and hard. I wasn't sick and hadn't been sick and I didn't have any infected cuts or other infections. I forgot about it, figuring these things happen once in a while and it would go away in a week or so. Last month I realized that the node was still there and it was joined by a friend. Both were hard and painless. I figured it was probably time to get it checked out.

Since we moved here three years ago, we have not had a primary care doctor. We haven't been very sick and just haven't needed one. I see my OB/GYN and a urologist regularly and so I went to my OB/GYN to get the nodes checked out. I ended up seeing the nurse practitioner and she put me on a round of Doxycillian and said that usually takes care of the problem and if it didn't they would send me to an Internal Medicine doctor. The antibiotics had no effect and I called my OB/GYN's office to get the referral. Here's where things got screwed up.

The receptionist at the office gave me the name and number of a doctor and I made an appointment for the next day. The doctor was a very nice woman about my age. She felt the nodes and we went through all the possibilities. Usually reactive nodes are painful. These are painless. Usually reactive nodes are soft. These are hard and fixed. Usually reactive nodes resolve in a week or so. I have had these for months now. And I have not been sick or had anything that would cause a node reaction like this. The only other symptoms I had at that time were fatigue and a constant backache in my lower back, right behind the nodes.

At this point, the doctor said that we have to look at cancer as a possibility. She also said that it could be that the nodes were reactive at one point but have calcified permanently. The nodes are a little smaller than often seen in Lymphoma patients, but they could be just getting started. She took blood work and said she wanted to send me to a surgeon to get a biopsy. I went home and immediately started researching Lymphoma and Hodgkin's disease, the most likely culprits. Turns out that I am the perfect picture of an early case of Lymphoma.

I immediately called my in-laws because my father-in-law is an OB/GYN. He offered to set me up for a fine needle aspiration the following day. We had it done but the pathologist was unable to get enough cells to send through cyto flow and so it was inconclusive. I was thankful to my father-in-law, however, it turns out the fine needle aspiration is not used to diagnose Lymphoma. They need to see the node in its entirety. Back to square one.

A few days later, my blood work came back normal, We had hoped the blood work would show some infectious disease or reason for inflammation, but no suck luck. The doctor sent me to a general surgeon. The surgeon, also a woman my age, proceeded to tell me that she thought I could just feel the nodes because I am thin. She said she can feel her nodes too. I pointed out to her that the nodes on the other side are not palpable and that I knew the enlarged nodes were not there 6 months ago. She didn't have much to say, just that she thought everything would be fine and we should just wait and see. The surgeon also questioned why my doctor had not done some preliminary imaging, as is typical.

After having been told I might have cancer and finding out I did indeed closely resemble a Lymphoma presentation and knowing that a biopsy is the only way to know for sure, I was not too pleased that the surgeon did not want to do a biopsy and also not pleased that we had not done the imaging. I went back to the doctor to see if she could at least set up an MRI or CAT scan. While waiting to see the doctor, her nurse asked what I thought of the surgeon. I said she seemed fine and asked if they worked with her often. The nurse replied that no, they didn't know her at all. The nurse just picked her name off a list of general surgeons. The doctor doesn't know her at all. Not a good sign.

When the doctor came in, I explained what had happened and asked what we should do next. This time the doctor seemed a little confused. In a total turn around, she said the nodes were probably OK and we could just leave it alone and see what happened. I think that she is just very new and does not have a working relationship with other doctors in the area and was not confident enough to push a surgeon for a biopsy. She said she didn't send me for imaging because it was expensive and she figured a biopsy would be easier.

I was obviously none too happy with all this. I have been lucky to always have really great medical care. My parents see the best doctors back in Nashville and therefore, so have I. My urologist is one of the best in the country and my OB/GYN is the chief of the OB/GYN department at the University of Tennessee Medical Center. I have always seen doctors who are aggressive in diagnosing and treating illnesses and I have always trusted their judgment because I have know that they are the best in town. It was obvious now that this doctor was not up to snuff. I was about ready to just go back to Nashville and see our doctor there even though our crappy insurance would not pay for all of it.

I went back to my OB/GYN and saw the nurse practitioner again. I explained the situation. Turns out that the office should have never sent me to the other doc in the first place. She is just a family practitioner. They meant for me to go to an Internal Medicine specialist at UT hospital. The NP spoke to my OB/GYN and he agreed that he wanted a biopsy and imaging and he told her he wanted them to get me in to see a colleague at UT immediately. This was Friday. That day, his nurse tried to get me in, but was told that they had no openings until August. Great. On Monday, another nurse called me at home and told me that my doctor himself was going to get me in as soon as possible and she would call me back that morning with an appointment day. She called back 10 minutes later and told me the appointment was for today, Wed. May 21.

So, finally, today I am hoping to get some real help. In the three weeks that all this has happened, I have two new enlarged and hard nodes in the area and one is developing on the other side of my groin. One of the initial nodes has grown. My backache has continued. I have also had several episodes of night sweats, another symptom of Lymphoma. I am hoping that these new developments will result in an immediate biopsy. In fact, I am going to pretty much demand a biopsy. I'll keep you posted.


Missybw said...

You are in my thoughts and prayers.

KAM said...

Mine too, lady. Please let us know that you are in good hands now, when you get back today. Tell Ladybug to let them have it, nothing to shame incompetent folks like a child giving them what for...hugs and positive energy...

InTheFastLane said...

I hope you at least get some answers. I am sending some prayers that they are positive answers.

Magpie said...

Oh, what a runaround. I hope you get good answers, soon.

Queen Mommy said...

I don't even know what to say about the run around. Total nightmare comes to mind.

I hope that NOTHING is wrong and that the doctor is fabulous!

Keep us posted.