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Experience voicing concern about medical care

pipscout
Posts: 24
Joined: Jul 2010

I wanted to share what has happened with me about a concern with my medical care. I have been quite surprised and pleased. I wanted to share in case anyone else has concerns about your doctor's decision making. I was diagnosed with endometrial cancer in May of this year. When I had my surgery it turned out it was Grade 3, and I've had chemo and will need radiation.

Also, by the time I was diagnosed I was critically anemic and required two blood transfusions. I had been feeling uncomfortable for a couple of years about my doctor's "wait and see" message when I had continued bleeding issues. She had done a couple of endometrial biopsies since 2005, but the past few years hadn't suggested them. She said I wasn't a good candidate for elective hysterectomy (because of my weight) and that I would probably just continue to have bleeding episodes until menopause (I'm 50). I sort of went along with this because I figured she wasn't worried about it so maybe I shouldn't be. Although by the time I went in last May I was feeling desperate because the bleeding was affecting my life and my work so much. She did another biopsy after not doing one for about two and a half years and that's when the cancer was diagnosed.

I have a difficult time making a complaint because it feels like it's "not nice". However, I've had this strong feeling that I would have avoided the anemia and maybe the serious grade of cancer if my doctor had tracked more closely, or had been more troubled by the continued bleeding. I decided last month to talk to the customer service at my health plan. Since then I've had some really positive and reassuring calls back from their quality assurance department, their medical malpractice person and the clinical director of the gyn/onc clinic. My file is going through an internal review and also one with external doctors. If the external review determines there was an error then they will talk with me about a settlement. I didn't even think about that or ask for it when I made the complaint but knowing it's possible is nice since I've had to put so much debt on my credit card for copays etc. I consulted with a lawyer and he said it would also be good for me to get a copy of my medical record. Also, to wait to talk about a settlement until I am done with treatment and know how my prognosis looks.

Beyond the possible settlement it has just felt really nice to feel HEARD and to hear that the clinic will work on their approach with women who have hyperplasia to ensure that they're getting proper screening and treatment. Of course I wish I had been a better advocate for myself earlier and not just gone along with things. I think having a major health issue has made me a lot more informed and with a list of questions for the doctor etc. This list helps me with that too.

I hope if any of you have an issue with your care that voicing your concern turns out to be positive thing and you get the response you need.

paris11
Posts: 160
Joined: Oct 2010

Hi Pip,

You are so right on. We must be ever diligent. We must voice our concerns and question, question, question.

Oncologists are incredibly stretched and overworked. Mistakes happen. Although, personally, I am for tort reform and against about 99% of med-mal cases.

Connie

sedonavision
Posts: 2
Joined: Nov 2010

I say good for you. If it takes a court case to get more attention for women's health issues then so be it. So many times doctors do not listen.

I was in the ER the other night for excessive bleeding, not just dripping blood, but gushing vaginal bleeding. They would not listen as they kept moving me to the next "station" for evaluation and check-in. I finally told again, the 5th person, you people need to listen to me, I am bleeding and will bleed to death if you don't do something. At the very least I needed to be laying flat, not sitting in a wheelchair. Finally, the 5th person said Oh they didn't tell me that. Duh?!!!

I had a transvaginal ultrasound, then a biopsy the next day and am waiting for the results. I hate this waiting.

I just had a bilateral mastectomy for breast cancer in June and would still have the cancer if I hadn't found it and insisted that they listen to me.

Please be proactive. Keep yelling until somebody listens.

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