Endometrial cancer: How do I advocate for better care?

Posted by pinkfish66 @pinkfish66, Apr 29 4:35am

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!

A red blood cell count of 6 is what I meant not ," a good count of 6"

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I am sorry you are going through this. It does sound like you need to see a different doctor. There are health insurance advocates in each state who are supposed to assist you with navigating your insurance and getting the help you need. It does sound like you should have radical hysterectomy as a first step. Can you call the office and ask why that hasn't happened or message in the portal? that way you will have the answers written down and make things clearer. I wish you success on the next steps. Eileen

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Hi @pinkfish66, welcome to the Gynecological Cancers group. I can certainly understand your concern and agree with @ejohn's suggestion of seeking the help of a health insurance advocate. It is really important to have trust in the doctors and care you're receiving.

Am I understanding correctly that you were originally diagnosed with Atypical Endometrial Hyperplasia and about 1 year ago the diagnosis become Endometrial Cancer? Since that diagnosis you have not yet received any treatment? Do you know what stage of endometrial cancer that you have?

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@colleenyoung

Hi @pinkfish66, welcome to the Gynecological Cancers group. I can certainly understand your concern and agree with @ejohn's suggestion of seeking the help of a health insurance advocate. It is really important to have trust in the doctors and care you're receiving.

Am I understanding correctly that you were originally diagnosed with Atypical Endometrial Hyperplasia and about 1 year ago the diagnosis become Endometrial Cancer? Since that diagnosis you have not yet received any treatment? Do you know what stage of endometrial cancer that you have?

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Yes I was diagnosed with Atypical hyperplasia,complex, and sent straight to
a gyn/oncologist from my ob/gyn. The gyn/oncologist told me from the
biopsy labs it showed squamous modular metaplasia also. Then she said she
was going to do a total radical hysterectomy, oophorectomy salpingo ,
lymphadectomy, release of ureter, appendectomy, and etc. because I have
cancer. She would stage me with surgery. And today I went to see her and
was 15 minutes late because my son drove an hour away to take me. So she
wouldn't see me because I was late. Am I crazy or is this doctor failing me
in immediate care I should have received a year ago?

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This appt was today april 29 2021. My son was so upset because he's been watching his , mom normally strong and hard working nurse, slip away and become weak and depressed. He and I need answers! Thanks for the advice and letting me vent ! I'm so glad I stumbled on this site cause it feels like I'm being heard and possible solutions are given. Thanks!

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I have IEHP DIRECT in California.

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I did have my GP refer me to another ob/gyn and after I got there they looked at my file and told me they couldn't help me cause there was some kind of flag on my file. And to just go back to that doctor(oncologist) ?? It's gotta be the grievance that had them scared probably. And I did talk with the ombudsman who arranged for my appt today that I got turned away from! I don't what my next step should be,but I am scared I will die due to shotty care ! Anything else anyone thinks I could possibly do , I would greatly appreciate the advice. Thx.

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@ejohn

I am sorry you are going through this. It does sound like you need to see a different doctor. There are health insurance advocates in each state who are supposed to assist you with navigating your insurance and getting the help you need. It does sound like you should have radical hysterectomy as a first step. Can you call the office and ask why that hasn't happened or message in the portal? that way you will have the answers written down and make things clearer. I wish you success on the next steps. Eileen

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Thank you for your response and advice. If you read my subsequent entries here, you'll see I have done those things you suggested. Iam at my wits end. Maybe I could switch to another insurance ? I don't know but if the Dr. Could tell me I definitely have cancer, then why no stage number?

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Also, sorry for the chattiness, I have developed high blood pressure after getting a cortisone shot in my hip. It was 203/120 two days ago! I'm getting ready to have a heart attack probably? It felt like I couldn't breathe. It hasn't gone below 168/112

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@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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@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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