Diagnosis of Hyperplasia with AtypiA. Need Advice

May 9, 2017 8:12 AM

In early March I was diagnosed with Hyperplasia with AtypiA. It's now May, and I still don't have any more information than I did then.

I'm in my late 50s and have been post-menopausal for 8 years. In early March I started spotting. I didn't think much of it until it went on for a week or so. I contacted my OB/GYN and was scheduled for an exam. Let's just say that didn't go well. It was Very painful and they couldn't complete the exam. I was scheduled for another similar exam but this time with pre-exam medication. An Ativan (at my request) and a med that would soften the cervix. While still painful, at least they were able to complete the exam. Let me add that after the first exam the NP made a point of telling me to be sure to keep the second appointment because the spotting *could be pre-cancerous or cancerous cells. Not what anyone wants to hear, but I was already aware due to my own research. It was over 3 weeks between appointments, and another week before the definitive diagnosis of Hyperplasia with AtypiA was given. The NP told me that she'd be referring me to a surgeon because the recommended 'cure' was Hysterectomy.
Two and one half weeks later I had a consultation with the Surgeon, which was one week ago. He first wanted to do a D&C to confirm if Cx cells were present, or not. That took place last Friday.
The Dr told me last Tuesday that I would receive the results of the D&C "on Monday or Tuesday". That seemed reasonable to me.
Prior to the D&C I was prescribed one more Ativan, Hydrocodone for pain, and the cervix softening tablets again. I was given, and paid for, 4 of the cervix tablets even though only 2 were needed prior to the procedure and it's not something I'll likely ever use again. So, yesterday AM I emailed my Dr about the 2 extra pills and how I would go about getting a refund for them. I still don't understand why they were Rx'd when only 2 were needed, but right now that's not my biggest concern.
I immediate got an OUT OF OFFICE reply in response to my email. It said that Dr X would be out of the office until May 15th. Excuse me?? He never mentioned this during the consultation OR after the procedure! He didn't say that he'd be out and Dr So&So would be covering for him and relaying your results. He's just gone. As the daughter of an MD I *know this is not how absences should be handled!
So, I called the office to both ask about the Rx and Dr X's absence. No one could answer any of my questions, AND I was told that it would be a WEEK OR MORE before my test results would be in!
This puts in me in the 3rd month of this process, which is Way Too Long if the possibility of Cx exists! The NP put that on the table back in March, and it's now May. When I mentioned to Dr. X during the consult that I thought things were moving too slowly - literally weekS between appointments - he agreed with me and said he would have liked to have seen me sooner!
Now, having to wait yet another week for the results that will show if I have Cx or not has pushed me over the edge! I do NOT think I'm being unreasonable wanting things to progress as if there is *some sense of urgency where there is actually none. *I* have called and asked if any appointment cancellations were available so I could get in sooner. Nope. None.

So, now I'm here to learn what others have experienced when it comes to the possibility of a Pre-Cx or Cx diagnosis. Did you have to wait WEEKS between appointments, and then a full week or more for test results? Is 3 months standard in this situation? Help, please. I'm seriously frustrated and confused and upset by all of this.

posted by SoftSummerBreeze to Health & Fitness (3 answers total)

I wonder if circling back to the NP in your OB/GYN's office would be helpful. She is a health care professional who referred you and is involved in your care. She should be able to find out what the holdup is on the pathology/cytology. It's possible that part of the delay is because the pathologist has not finalized the results. While still frustrating, that would not be the fault of the surgeon. The surgeon's office definitely wants things to go smoothly when patients are referred - referrals are his bread and butter.

I agree that the surgeon should have mentioned the potential for delay because of his absence, but it is also possible that this was unscheduled. He should have someone covering for him regardless. The NP might be able to speak to the covering doctor on your behalf and explain the many delays you've experienced. The covering doctor has NO IDEA of this, so please don't hold him or her accountable for that.

I'm a nurse and post-hysterectomy myself, though not for cancer, and I experienced plenty of delays and interactions with NPs, while appointments with surgeons were arranged, all while bleeding myself down to a short-of-breath hemoglobin of 8.1. I feel your pain.

And unfortunately, I don't think it's legal to have a refund on a dispensed prescription. Once it's accepted by the patient meds can't be returned or refunded, at least in my state.
posted by citygirl at 9:23 AM on May 9, 2017 [1 favorite]

I'm so sorry things are moving at such a slow pace. My own experience with a hyperplasia diagnosis is that because it's endometrial, people don't feel much urgency. Endometrial cancer is typically slow-growing and very easy to treat. {I'm not saying you shouldn't freak out. I freaked out. It's just that the people whom are treating you see this all the time, plus hyperplasia is considered pre-cancer, plus they are a slow-moving behemoth, so they are not freaking out.}

Do the doctors in this practice have a support person or medical assistant? Where I am, you can call and ask to talk to Dr. X's "team," and that would be a person to whom you could express your worry and remind them that you're waiting to hear about a potential cancer diagnosis and that you need them to light a fire under people. Or, wait, can't the doctor covering for your doc give you the results?

As for the meds, I find doctors tend to give you a few more pills than you need "in case."
posted by Ink-stained wretch at 9:44 AM on May 9, 2017 [2 favorites]

My own experience with a hyperplasia diagnosis is that because it's endometrial, people don't feel much urgency. Endometrial cancer is typically slow-growing and very easy to treat.

Yes, this. I'm 52, got diagnosed with hyperplasia with atypia a couple of years ago. It did take a few weeks between the original biopsy and my consult with a gynecological oncologist, and it was worrying to learn that I was going to oncology!

However my oncologist is great and very supportive. He really wanted to do a hysterectomy, because that's the standard/conservative treatment (given that 27% of women with hyperplasia end up with endometrial cancer). For a variety of reasons, we came up with an alternate treatment (I got a Mirena to balance out the hormone fluctuations from perimenopause, with periodic biopsies), and that seems to be working.

All that said, nobody at my HMO has been wound up about it, or expressed any sense of urgency. This is not a fast-moving cancer and from what you said, they found hyperplasia but maybe not actual cancer yet.

I'm sorry your doctor's office is not as responsive as you would like; for you this is very stressful and upsetting, but for them it's just another Tuesday. Sigh.

Please treat yourself kindly, and be reassured that as these diagnoses go, this is among the most common and easily-treated.

If you like, there's a website called HysterSisters, which is a very supportive forum for women who are getting or have gotten hysterectomies for a variety of reasons. There are many posts by women with hyperplasia, and reading their stories might help you.

Best of luck.
posted by suelac at 11:31 AM on May 9, 2017 [2 favorites]