Doctors think I have uterine cancer: How to find a specialist?

I was in a similar situation 6 months ago, and my story has some lessons about what to and not to do, and what is realistic. I was having extremely light post-menopausal bleeding, and my last PCP was long gone, so I called the main patient phone number of local Hospital #1, and they made me an appointment with a 2nd year resident in internal medicine the next day (May 20). I told the resident my problem and she referred me for a transvaginal ultrasound and to see a gyn for a biopsy. The first appointment I could get at Hospital 1 for an ultrasound was in 2 weeks, and the first appointment for any gyn in their system was in mid-late September, so I took those. (The gyn I had seen before and liked wasn't available until Feb 2023). I really wasn't all that worried at this point, so I waited the 2 weeks for the ultrasound. The result of this was "Suspicious for endometrial carcinoma," which I figured meant there was a very high probability that that's what it was.

Now I was upset, so I messaged the resident through the portal and asked her to help me get an appointment for a biopsy ASAP, since September was obviously not acceptable. She tried, but we learned through extensive phone tag by both of us that the gyn oncology scheduler was on vacation until the following Tuesday (this was a Friday), so they said I could make an appointment when she got back. I stewed over the weekend, and on Monday called local Hospital #2. I called their main number and managed to say the right things to get to a nurse navigator. Nurse navigators get the thumbs up from me, so if you can talk to one of them, that may be helpful. My call got transferred through a series of four very nice ladies, and I ended up with an appointment with a gyn oncologist two weeks later. I didn't get to choose the doctor, and wouldn't have known who to choose anyway. The next day, the scheduler from Hospital 1, back from vacation, called, told me how understaffed they were, and made me an appointment with a gyn oncologist three days after the one I had already made with Hospital 2. They also put me on the cancellation waiting list. I figured I should keep both appointments for the moment, in case something went wrong with one of them (ie Covid cancellation).

So two weeks later, I went to see the gyn onc at Hospital 2, and he tried very hard, but clearly failed to get a biopsy, which he admitted. (In theory this is about the level of difficulty of a pap smear, but some patients have issues that cause problems.) But he did send a specimen for pathology, which he said could take up to 10 days (this really shouldn't take more than 2 days, but apparently there are nationwide staffing problems.) He said if that specimen was indeterminate, he would schedule a D&C. I made a mistake and didn't ask how long it would take to schedule the D&C. This guy also stated that he thought it probably wasn't cancer (based on him, a non-radiologist, looking at the ultrasound images), and that even if it was, it wasn't a big deal. In retrospect, I should have been more unhappy about this than I was at the time.

At this point I made another big mistake and cancelled my appointment with the gyn onc at Hospital 1 three days later. I figured if the first doctor couldn't get a biopsy, the second probably couldn't either, and I wanted to be considerate of the doctor's time and that of the other patients waiting to be seen. Before cancelling, I should have at least messaged him and asked if he thought there was a possibility that he would succeed with the biopsy where the first guy had failed. In part, I made this mistake because I didn't realize how long it would take to schedule the D&C.

The biopsy result actually did come back after 2 days and was indeterminate, but the gyn onc (at Hospital 2) was in no hurry to even put my D&C on the schedule. After a week of my frantically trying to convince his office to even schedule it, they put it on the schedule for a month later in late July. I cried to the scheduler over the phone, but at that point there wasn't anything I could do, since I had ruined my chance to get seen at Hospital 1. So I had the D&C as scheduled, and by the end of July I had a preliminary diagnosis of high-grade endometrial carcinoma, with the type remaining to be determined (this is quite bad news). I learned this from the patient portal, and I immediately messaged the office that I would like the hysterectomy scheduled ASAP. This time the Dr. himself called me. He was apologetic that I learned about this through the portal, which didn't really bother me (although I was absolutely livid that this process had taken so long). He made me an office appointment for about a week later, after which he would start thinking about scheduling the hysterectomy. I finally had the hysterectomy on August 17, about 2.5 months after I first contacted Hospital 2, already knowing the concerning ultrasound results.

The care I have gotten from Hospital 2 has been fine, and may be as good as can be reasonably expected in my location (Philadelphia). The only thing that I was really unhappy about was how long it took, and I'm not under any illusion that I would have done better at any of the other local hospitals.

I guess the conclusions from this long story are:

1) call the best hospitals that are in-network for your insurance and try to talk to a nurse navigator. Call multiple hospitals. I wish that I had remained engaged with Hospital 1 even after I had seen the gyn onc at Hospital 2. From reading this forum, I've gathered that different areas of the country have different availability, and it also sounds like Mayo (at least in Rochester) is quite fast.

2) Always ask how long it will take to get to the next step.

3) Potentially having cancer is an urgent crisis for you, but it is not for your healthcare providers. They're overworked, and probably wishing they had chosen a different career. They will not look at lab results or communicate with you in any reasonable time-frame. They will not schedule appointments and procedures unless you hound them to do so. Most of the time when relevant lab results showed up in the portal, I messaged my care team immediately to prompt them to go to the next step. But one time I waited a day to see if they would contact me--No. But I heard from them the moment I messaged them.

4) Ask your friends and neighbors. I wish I had talked to my next-door neighbor earlier. After this was mostly over, I told her the story, and she told me about how much she loved the doctor at Hospital 1 who I had cancelled the appointment with. (Not surprisingly, I had never discussed hysterectomies with her before.)

5) Doctors/hospitals do things in their own good time; there's not much you can do about it; and you should try to mask your feelings about them. I had (and have) a variety of negative feelings toward my surgeon/ gyn onc, but I'm stuck with this guy for the moment. I'm fairly certain he knows that I'm not a fan, but I wish he didn't.

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I am not sure where you are located but I am in California, I originally went to my gynecologist first, she examined me and did the biopsy in her office. From there I was referred to an oncology surgeon.
I would recommend Dr Mariani at the MayoClinic in Rochester, I had recurrence so I went to Stanford and the Mayo Clinic for a second opinion. I didn’t need a referral since I had a PPO. What exactly is the wait time for an appointment? What exactly do your doctors mean THINK you have uterus cancer is this your local GP.
How many specialists have you called? Are you on a cancellation list. The wait is scary I know. I wondered if you have been examined and if any blood work was done. Stay in touch.

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