Endometrial cancer: How do I advocate for better care?

Posted by pinkfish66 @pinkfish66, Apr 29, 2021

Okay, I'm new. 55 year old . So I've always had heavy long periods. Well, last year it was July 2020 and I found myself have breathing problems. So, on July 3rd, I wound up in the ER and on oxygen, getting x-rays, 2 blood transfusions , a lady putting a thing inside my , you know. I was in a whirlwind nightmare! I had been bleeding for a couple weeks with clots shooting out of me that were the size of my hand!! I don't know how I survived losing that much blood everyday all day long. So, they admitted me. For 2or 3 days they took a lot of blood and told me I had a good count of 6 and it's supposed to be 12 or 13! Hence, the two blood transfusions. My red blood cell count that low could have killed me and almost did! So, they then did a vaginal biopsy and that was a bit painful. So, I found out that I have Atypical hyperplasia of the endometrium? Complex I think. Anywho, I was referred to an oncologist?!!! What? I was dumbfounded! So, it turns out that the EAH turned into endometrial cancer!

Every visit I had with the oncologist I always left feeling confused no real answers and wanted to be told exactly what my deal here is!!! I just needed some kind of treatment right? Well didn't and still haven't had the hysterectomy total n radical , with lymph node removal, appendix, ureter release and all organs removed ! It's going on a year and not 1 freaking kind of treatment whatsoever! I could have stage 4 by now from going untreated like this! What's wrong with our healthcare system?? Oh and my insurance says I have to go back to this same oncologist even after there was a grievance filed against her for me! I don't want a someone doing surgery on me that probably has a grudge against me now, WOULD YOU?? PLEASE HELP!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@colleenyoung

@pinkfish66, I'm so sorry to hear about your trials and tribulations in trying to advocate for your care. I think you are doing the right thing with contacting the ombudsman. Please contact them again and tell them what happened yesterday. You need medical attention. Can you reschedule your appointment with the oncologist? Or ask the ombudsman to mediate with another oncologist?

Staging requires different pieces of information. It is common that staging is not assigned until after surgery or a biopsy, along with other imaging studies and tests.

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Yes I've had the tests vaginally but no blood work or anything else. I also am agoraphobic and she knows how hard it is for me to trust let alone leaving the house to go to her office. I woke up today having blood pressure of 171/121! This is all getting too real and frightening!! Thanks for your attention to my story ! It actually feels like somebody cares. I wish people around me were more aggressive in helping me . I really feel alone and like something bad , like a heart attack, will happen before I get this oncologist to do her job! Thanks for letting me vent ,AGAIN!

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