In the fall of 1999 I had been having some recurring right-sided abdominal pain. One event was so bad that I had to go to an ER; but nothing was discovered. I was given Ibuprofen and told to call my primary on Monday. At that time, I was not under the care of Froedtert & The Medical College of Wisconsin. My primary gave me a cursory pelvic exam and told me he assumed that a cyst had ruptured — there was no history of a cyst — and not to worry. When I pressed him about a referral to gynecology, he seemed miffed and said, “Well, if you don’t think I can handle those needs…”
This approach didn’t feel right to me so I called the office of the by-then-retired obstetrician/gynecologist who had delivered my kids. I found out I could get in to see his replacement on short notice. This specialist’s very thorough pelvic exam revealed a mass on my ovary and an ultrasound confirmed it. I was scheduled for a follow-up consult in his office later that week.
What are the teaching messages in this part of the story?
- An ER is going to assess for immediate danger and refer you to your own doctor. Just because nothing is discovered in the ER does not mean that something isn’t wrong.
- Any kind of a cursory exam is unhelpful. Many conditions require the expertise of a specialist, and it is not an insult to a primary care physician to ask for a referral to a specialist.
- “Go with your gut.” If something doesn’t sound or feel right, it probably isn’t. With the right doctor, things started to go right.
I realized that this follow-up consult was critically important and that I would have to thoroughly understand what was being proposed so that I could make appropriate decisions. I brought along a dear friend — a nurse — to act as my second set of eyes and ears; to take notes and ask additional questions. My friend took extensive notes about what was discussed and decided during that visit. She typed up the notes and e-mailed them to me along with a few links to ovarian tumors and ovarian cancer. I pored over the information. For me, knowledge is power. I really understood what was going to happen and how the medical staff would proceed.
Teaching message? Bring someone with you to important clinic appointments. At some point in our life, we should bring someone with us to all clinic appointments. It doesn’t have to be a spouse if that person will be too upset or distracting or unable to contribute medical history or to take notes. Or if the spouse offers the moral support, a child or friend can offer the informational support.
Reading and re-reading those clinic notes was crucial as it turned out. I was scheduled for surgery on Wednesday, Nov. 10. Unexpectedly on Sunday, Nov. 7, I was rushed to the ER in crippling pain with a plummeting blood pressure. My ovarian tumor had ruptured and torqued my ovary. Emergency surgery was imminent. Despite the pain, the trauma, the drama, I remembered the extensive notes my friend had taken. Part of the plan had been that during my surgery, if cancer was found, my gynecologist and a gynecological oncologist would meticulously search through my intestines to see if any tumors existed there. That would require a clean colon. I knew my colon wasn’t clean, and I knew that it would be next to impossible to have the gynecological oncologist available at such short notice. I asked the ER doc to speak to my gynecologist and advocate for surgery the next day when both my colon and the correct surgeon would be available. I said that if the pain could be controlled, “GoLYTELY®” would do the rest. I don’t recommend postponing emergency surgery, but in this case, that’s what happened.
Monday morning the news was good and bad. The tumor had been malignant. It was starting to attach to the wall of my uterus. That meant it was staged as Stage II. But there was no doubt that it had not spread further. There was no evidence of tumors in the intestines. Most ovarian cancer isn’t caught until Stage IV when it has metastasized throughout the abdomen. I was very lucky to have had symptoms. Most women do not. I was also lucky that finally someone listened to my symptoms. Had I not insisted on following through with the original plan for surgery, I would have still had only Stage II ovarian cancer. But no one would have really known that. I would have waited and waited for that possible recurrence elsewhere in the abdomen. Knowledge is power.
After a course of chemotherapy, I have had no recurrence. This is a long and dramatic story about the importance of having someone with you on a clinic visit. It’s not my favorite story but it is the best story I know on the subject. Other tips to make your clinic visit productive are as follows and apply specifically to the Neurology Clinic here at Froedtert. In most cases these are good guidelines for most clinic visits.
- Arrive on Time. Allow enough time to park and find the clinic. More than 15 minutes late may result in being rescheduled either later that day or another day.
- Bring, or send in advance, medical reports and records related to the condition for which you will be seen.
- Bring images related to this current condition. Bring/send the CD’s or films themselves, not just the reports.
- Bring a list of your medications including strength, dosing, prescribing physician, how long you have been taking it and what the medication is for. Include over-the-counter and herbal medications and energy drinks.
- Wear comfortable clothing — nothing too fussy or complicated to remove including stockings. Bring any assistive devices you use — canes or walkers.
- Bring another person that knows you and your condition well. Another person can supply some of the medical history that you may not remember; they can take notes; they can ask questions you may have forgotten.
- Bring the completed Medical History Form if one was sent to you.
- Know what your goal is for the visit: a diagnosis, a second opinion, less pain, a cure, medication refills. Tell the doctor what is particularly important to you.
- Be prepared to give a clear history. This can be written down or given by your spouse/child/companion if you are not able.
- Bring a list of questions. The doctor will review it but will probably only be able to answer your top two to three questions.
- Bring the information about the pharmacy you want to use. If you have a mail order pharmacy, you might also want to list a local pharmacy for any emergency prescriptions. To reorder medications, call your pharmacy and they will contact us.
- After the visit you should call the office if you have questions about a new medication, medication side effects, new symptoms, the results of lab work or a study or if you thought a study or therapy were going to be scheduled. You will be calling the doctor’s nurse or administrative assistant. They will convey your concerns to the doctor, get an answer, and call you back. After hours and on weekends your call will be returned by the on-call resident.