Need Sage Advice
I've posted my story here elsewhere, but as is somewhat expected in my life, nothing is ever straight forward. Summary—mammogram —> tomosynthesis and US —-> stereotactic biopsy = DCIS, Estrogen and Progesterone +, HER2 -, NG 2-3.
I was referred to a general surgeon from a local suburban hospital. As we are in Pittsburgh, however, I chose to seek out a highly regarded breast surgeon. Background—Pittsburgh has two major health care providers, Highmark BCBS and UPMC (which is hospital and facility specific). I have Highmark. The only way you can cross networks is with a cancer diagnosis. The reasons for that are complicated, but basically, when the providers split (UPMC hospitals wanted to only accept UPMC insurance),the govenor of PA put in a stipulation regarding the cross network coverage, as most of the cancer resources at the time were centralized within the UPMC network. The stipulation gives patients until 2019 to cross networks with a cancer diagnosis, at which time the expectation is that the other hospitals not in the UPMC network will have had time to bulk up their resources.
So...I made the appointment out of network. Before even seeing me, they ordered a bilateral MRI w and w/o contrast, and I had to hand deliver my pathology slides and films. My actual appointment with the surgeon was scheduled for Oct. 23. With me so far? Here's where it gets complicated.
The preliminary MRI report comes back to my PCP. They wanted me to come in for the results, but I convinced the nurse to give them to me by phone. She told me there was lymph node involvement detected on the MRI. I fell apart, left work and headed for home. I asked my husband to go to my pcp office and grab a copy of the MRI report. By the time he got there, the final report had been faxed to them, so that's what I received. Not only was there no lymph node involvement (the final report called the cortex thickening 'likely reactive'), they also reviewed the pathology slides and downgraded my diagnosis to ADH. Fast forward through a long sleepless night to this morning. I took off work to try to sort through what's next.
At 9:20 am this morning, I received a phone call from the breast surgeon's office. As the diagnosis was downgraded, I can no longer see that surgeon without paying out of pocket. Basically, I was told I needed to go back in network, where the diagnosis is remaining DCIS. So...in network I have cancer, out of network I have ADH
WHAT NOW? Do I see a general surgeon who is going to have to choose between diagnoses? Do I seek a third opinion? I am so distraught over this nonsense that I am damn near dysfunctional. I just feel like I want this taken care of YESTERDAY, but every step forward is two steps back. I work in a stressful job that requires 100% concentration, something I just don't feel like I can give right now. What is wrong with me? This should be good news, the downgrade in the diagnosis, and I know this, but the doctors who believe that downgrade are beyond my financial grasp without insurance.
If you've made it this far, bless you. Any suggestions??
Comments
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You might have your slides sent for a tie breaker on the DCIS / ALH if they haven't already done that. My initial biopsy was ALH /ADH by one pathologist, DCIS\LCIS by another. The tie breaker at Vanderbilt said ALH\ADH. From what I've seen on the boards most breast surgeons are general surgeons who specialize in breast surgery. I personally would not have a problem with the general surgeon. So sorry for the angst. This is definitely a hurry up and wait game.
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Wow, I am so sorry. That's terrible trauma. So this was in the Pitt system? What may have happened with the "preliminary report" is that it was generated by a Radiology resident and then changed when reviewed with an attending. I used to see that when I worked in a place with Radiology residents.
Here are some things you can do, but honestly I don't think I can give a coherent response about the whole of the problem:
1) Don't panic. Neither diagnosis needs an emergency-fast response. There is controversy about whether DCIS is even "cancer" as the word means colloquially.
2) Find out whether either of the Pathologists who "read" your slides specializes in breast cancer. I remember very clearly my Oncologist looking for the signature on my path report to make sure it had been a certain doctor, and the MD Anderson breast Pathologist did not change anything to her reading.
3) Post this in the DCIS discussion area. There are some women on these boards who are very, very knowledgeable.
I'll think on this one.
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Yes. Go get your slides, reports, and original films. Take them for another opinion from a breast specialist at Highmark. While you're at it, you probably ought to have a face-to-face with your PCP--it is unconscionable that they would give you the results of a PRELIMINARY report, not to mention that those results were COMPLETELY different from the final results. They caused you unnecessary grief and anxiety. Incidentally, this is exactly why most reputable physicians will not give out preliminary results over the phone.
Getting a second or third opinion is never a bad idea. You need to have full reassurance about your health, cancer or not.
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Mustlove brings up a good point. Are you sure it was a nurse you were talking to?
Many offices allow nurses as well as doctors to give out information over the phone, but if it wasn't definitely a nurse your PCP needs to know.
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That's crazy. Can certainly understand all the emotions you are going through. Personally I'd want to know for sure that my slides are being read by a breast pathologist and want be followed/evaluated by a breast surgeon whether its DCIS or ADH.
I know I have read many posters on here who have sent slides out to have them looked out. I'm sure you will get more feedback from other posters who have done just that.
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Thank you all for taking the time to respond. It was the nurse at my PCPs office who gave me the preliminary, and I am taking the advice here and making an appointment to speak face to face with my PCP. As for the third opinion, I called the Allegheny Health System Breast Care Center here in Pittsburgh. They have this new “same day specialist appointment” program, but since I called too late today, they said they will call me tomorrow morning with (hopefully) that promised same day appointment. It will mean another day off work, but the peace of mind one way or the other is worth it. I am so discouraged, but your words of support have meant the world
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