Sorry for the rambling but I wanted to see if anyone has any experience with this as I know I have read quite a few stories and we have some medical oriented members here on the green screen. I would like to find out what direction we can go, if any?
Back story is my wife had breast cancer diagnosed 10/2010 and she was treated at MD Anderson in Houston. Chemo, surgery, reconstruction, radiation and lots and lots of follow up visits. She's doing great and was transferred to the Survivorship Clinic, for all images, tests and health issues. She is no longer in the Breast Center. All visits are with a Nurse Practitioner and been so for a while. Thankfully she has had no real issues. She does take Tamoxifen daily to reduce the risk of recurrence.
The problem at hand is that we both feel that anytime she deals with the Cancer Prevention Center, she turns into a test subject. We have been over there 3 of the last 4 weeks for testing. We are 99% sure it's nothing but she's been through the ringer. It started out as a simple well woman test. She did mention she had cramping. The next week the NP calls with the negative test results and says shes got to return for an ultrasound as soon as possible. She's a teacher and wanted to wait until Spring Break but NP was adamant it had to be the next week. After our own research and her not having any symptoms, she decided she wasn't going for the US and tried to cancel the visit twice via the online system. The NP called her and talked her into the ultrasounds. She does the US and there was nothing found of concern, just thickening which is normal on the med she takes. We meet afterwards and NP says she needs to do a biopsy the next week, not a big deal but a 30% chance it was cancer in her uterus. NP said it was a simple in office procedure that would take 15 minutes. We show back up last week, we both go back and they ask her to prep for the procedure, out of her clothes and wait on the NP to arrive. We are then notified that the "final" Radiology reports stated to follow up in 3-6 months if necessary. NP says we should go ahead with the biopsy, we are here, she's undressed and ready to go but it's my wife's decision. She goes over the risks, asks her again, says we can follow up in 90-180 days with another Ultrasound or we can do this and be sure and the wife says "I'm here, I am ready, let's just do it." Nothing had prepared her for the pain she endured, definitely was unexpected. She knew it would be uncomfortable but it was bad. She's tough and a fighter but this brought her down, she did some screaming and the NP wanted to stop and start over and she told her just to finish it. She finished and then said she would like to do it again really quick and took another sample. She was green when she came out and I have never seen her that colorless. She also said the NP made the comment, "I don't think I got enough tissue for a good sample."
We are waiting on those results now. Since last Thursday, some of the clinic notes have posted to her online account. The NP wrote in her notes in January that if the cervical test was negative, follow up in 5 years. Whereas instead, she insisted that she return for Ultrasounds. When the Radiology notes populated, it said all findings are consistent and follow up in 3-6 months if needed.
It's evident that she has been overtested without a doubt. The last time she complained of constipation(a side effect of Tamoxifen), she wound up with a colonosopy 2 weeks later.
We have good insurance but it will still cost us a couple of thousand and I am not balking at that money, as long as she is healthy. It sure seems like her patient ID number is more like a debit card at this point,,,,
Someone mentioned a Patient Advocate but I think that may be for second opinions? Does anyone have any experience with a situation like this? We did complete a satisfaction survey yesterday that came for the initial appointment. My main issue is that she has lost her confidence in that department and doesn't trust any of the results or guidance and that is not a good thing. She said she always felt confident when she left an appointment knowing they were giving her the best care possible and that is not the case anymore.
Again, sorry for rambling, any advice would be appreciated.
Back story is my wife had breast cancer diagnosed 10/2010 and she was treated at MD Anderson in Houston. Chemo, surgery, reconstruction, radiation and lots and lots of follow up visits. She's doing great and was transferred to the Survivorship Clinic, for all images, tests and health issues. She is no longer in the Breast Center. All visits are with a Nurse Practitioner and been so for a while. Thankfully she has had no real issues. She does take Tamoxifen daily to reduce the risk of recurrence.
The problem at hand is that we both feel that anytime she deals with the Cancer Prevention Center, she turns into a test subject. We have been over there 3 of the last 4 weeks for testing. We are 99% sure it's nothing but she's been through the ringer. It started out as a simple well woman test. She did mention she had cramping. The next week the NP calls with the negative test results and says shes got to return for an ultrasound as soon as possible. She's a teacher and wanted to wait until Spring Break but NP was adamant it had to be the next week. After our own research and her not having any symptoms, she decided she wasn't going for the US and tried to cancel the visit twice via the online system. The NP called her and talked her into the ultrasounds. She does the US and there was nothing found of concern, just thickening which is normal on the med she takes. We meet afterwards and NP says she needs to do a biopsy the next week, not a big deal but a 30% chance it was cancer in her uterus. NP said it was a simple in office procedure that would take 15 minutes. We show back up last week, we both go back and they ask her to prep for the procedure, out of her clothes and wait on the NP to arrive. We are then notified that the "final" Radiology reports stated to follow up in 3-6 months if necessary. NP says we should go ahead with the biopsy, we are here, she's undressed and ready to go but it's my wife's decision. She goes over the risks, asks her again, says we can follow up in 90-180 days with another Ultrasound or we can do this and be sure and the wife says "I'm here, I am ready, let's just do it." Nothing had prepared her for the pain she endured, definitely was unexpected. She knew it would be uncomfortable but it was bad. She's tough and a fighter but this brought her down, she did some screaming and the NP wanted to stop and start over and she told her just to finish it. She finished and then said she would like to do it again really quick and took another sample. She was green when she came out and I have never seen her that colorless. She also said the NP made the comment, "I don't think I got enough tissue for a good sample."
We are waiting on those results now. Since last Thursday, some of the clinic notes have posted to her online account. The NP wrote in her notes in January that if the cervical test was negative, follow up in 5 years. Whereas instead, she insisted that she return for Ultrasounds. When the Radiology notes populated, it said all findings are consistent and follow up in 3-6 months if needed.
It's evident that she has been overtested without a doubt. The last time she complained of constipation(a side effect of Tamoxifen), she wound up with a colonosopy 2 weeks later.
We have good insurance but it will still cost us a couple of thousand and I am not balking at that money, as long as she is healthy. It sure seems like her patient ID number is more like a debit card at this point,,,,
Someone mentioned a Patient Advocate but I think that may be for second opinions? Does anyone have any experience with a situation like this? We did complete a satisfaction survey yesterday that came for the initial appointment. My main issue is that she has lost her confidence in that department and doesn't trust any of the results or guidance and that is not a good thing. She said she always felt confident when she left an appointment knowing they were giving her the best care possible and that is not the case anymore.
Again, sorry for rambling, any advice would be appreciated.
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