Beyond belief!

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    • #5533
      Brenda R
      Participant

      I just called the office of Dr. Matthew Powell, who is listed on your site as one of the few specialists in this disease, and was told that if my insurance didn’t cover him, that they WOULD NOT see me, even if I self paid! So what is the point of his being on the team, if he won’t see patients? I am so mad!!

    • #5615
      Hawej
      Keymaster

      Hi Brenda,
      This is Jayne Hawe (Diane’s sister). This is very upsetting for us at the GCS team to hear. I am in the process of following up with Dr Powell’s office. If you could send me your last name I will discuss your specific experience with them. I was with my sister in December when we visited Dr Powell in St Louis. Our experience with him was very positive. He has significant expertise in GCS and was very interested in supporting research, and importantly, in supporting patients with carcinosarcoma. I am so sorry for your experience, this is not Ok.
      Thank you for letting us know and I will get back to you as soon as I hear back from them. I will be persistent.

      Jayne Hawe, Member of the GCS Board of Directors

    • #5619
      Brenda R
      Participant

      No, this is not acceptable, but I believe the problem may be with Washington University’s policy rather than Dr. Powell. I also was told that another lady had the same problem with his office a couple years ago, and never got to see him.
      I consider my self fortunate, in that when I related this to my current GYN Oncologist, she said that she knew Dr. Powell, and would call him herself. Thankfully, because of her, they have decided to change my Chemo to Ifos, and I’m waiting for my insurance to approve it.

      However, I don’t give his office a pass on this, and it should be addressed. Had my current Oncologist not known him personally, I would not have had the benefit of his input. I do hear he is a good, and kind doctor, but his office staff (or at least the one I talked to) needs to be coached on compassion. I was told by the lady that I talked to that ” if they did this for one person, they’d have to do for everyone”, meaning accept self pay. Please understand this was only a request to set an appt. for a consultation, and not for him to be my Oncologist, as I know my insurance would not cover him.
      However, I don’t see how the doctors in the GCS group are going to find out about us GYN Carcinosarcoma patients, and gather information, if we are unable to even confer with one of them.

      Thanks. I am sure that my Oncologist took this up with him too, although I hope you will follow up, and please let me know what he says.
      Brenda Rogers

    • #5603
      ann
      Participant

      That is very sad! Where are you located?

    • #5636
      Hawej
      Keymaster

      Hi Brenda,
      I was able to talk with Dr Powells office at length about your experience. You are right the problem is with Washington University policy. I talked with Dr Powells nurse Tracey and the practice manager Tina Caruso. They were very apologetic and will be relaying your experience to Dr. Powell.They currently have a team looking into all the insurance issues affecting their patients. They know this is a huge problem and are trying to come up with solutions. This doesn’t make things any easier for you and other patients with such a devastating diagnosis. Tina assured me she will be coaching and retraining their schedulers. She will also make them aware of the GCS project.We are so sorry that you had such a bad experience. The GCS team is committed to following up and hopefully making this process run much smoother.Tina Caruso the practice manager gave me her number and asked that I have you call her directly to see what else she can do to help. Her number is 314 747 3609. Also, if you would like to call me you can email me at hawej27@gmail and I can give you my number and we can talk. I was with my sister for the last 3 years. We went to almost every major cancer center in the country. We met with many experts.If I can answer any questions or help in any way I would be happy to do this and would love to talk with you about this.Again, I am so sorry for your experience and know this is the last thing you need right now. Wishing you all the best. Jayne Hawe (Dianes sister)

    • #5624
      Janet In LA
      Participant

      Isn’t there a list of all carcinosarcoma patients diagnosed in all countries?
      If not how would a list be started?

    • #6993
      Brenda R
      Participant

      To Hawej, Have you been able to find out if Dr. Powell’s office has been able to fix this? Can I now call for an appointment and see him if I self pay?

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