1) I had Stage 4 uterine cancer & beat it. My story isn't pretty, but if telling it gets even 1 person diagnosed/treated, it's worth any embarrassment I might have from talking about the tumors on my uterus/clitoris/cervix.
2) Having been through 6 yrs of knowing that something was wrong with me, I can say that this taught me to listen to my body. You know your body better than anyone. Never let a doc blow off your concern. If you think there's something wrong, push to be tested, and keep pushing.
3) Maybe the test they did was the wrong one. My PAP tests came back normal, every year - including one taken the SAME DAY as the biopsy of my clitoris that found the cancer. I had CT scans that showed nothing - even after the tumors had been found.
4) Even just 5 years ago, a S4 diagnosis would likely have been terminal. I had a consult with a radiation oncologist who told me their goal was to make me "comfortable." I said my goal was to beat it, and he smiled sadly and patted my arm.
5) I 'm allergic to prednisone & benedryl, both commonly given to chemo patients. Although the allergies are listed in my chart, the 1st day of chemo, I was presented w/both to take, as if the allergies didn't exist. I refused the drugs & it threw the staff into complete chaos.
6) "We'll have to call the pharmacist!" I told them to go ahead. He came to see me, and we worked it out - Claritin instead of benedryl, no prednisone, & smaller doses of chemo drug paclitaxel more often, with a slow drip to compensate for the lack of steroids.
7) Even after that, they wanted me to say that they could give me cortisone, to which I am also allergic, "in the event of a life-threatening emergency." I refused. "If you give me cortisone, it won't be life-threatening anymore. I'll just be dead."
8) You are your own best advocate. If you aren't getting answers, demand them. Don't let them shut you up, shut you down, or take actions with which you disagree. Stand up for yourself and your needs as a patient. Change docs, if need be.
9) When I 1st noticed what seemed like, from my perspective, a painful swelling of my clitoris, I was healing from an unrelated surgery. I mentioned the swelling to 1 of the wound care nurses. She refused to look at it, or to bring it to a doctor's attn. Rather...
10) ...she told me that she had "gone through something similar" after the birth of her 2d child, that it was likely related to the surgery, and that it would pass. That was in April '18. It didn't pass. It got worse, but I wasn't able to get an appt w/an OBGYN until June.
11) By then, it was so obviously a tumor that the OBGYN took one look and said she'd take a biopsy, & 3 days later, I was in the oncologist's office, being diagnosed with endometrial adenocarcinoma, and being sent for an MRI - the only test to show my three tumors.
12) The tumor on my clitoris was excruciatingly painful. What started as a slight swelling got steadily larger and constantly stimulated the tissue to the point of pain. It was like having electric shocks every 5-10 minutes, over which I had no control.
13) When in the car, going over the slightest bump in the road could cause me to scream in pain. I had to take pain meds for 8 1/2 months, until chemo and a surgical resection did their work sufficiently and the tumor ceased to be.
14) The 2 internal tumors didn't hurt, except once. I had a pelvic ultrasound (externally). The wand apparently pressed directly on a tumor, & I cried out. The tech gave me a tissue but frowned. "Ultrasounds don't hurt!" she insisted, all evidence to the contrary notwithstanding.
15) The result of that test was to show "a slight thickening of the endometrial layer." Considering that my entire uterus was essentially 1 big tumor by then, that was a bit understated, I'd say. That was done in Dec '17. No further tests were done as a result of it.
16) People have asked me why I wasn't having annual exams. I WAS. Again, my PAP tests all came back *normal* - including the one taken the SAME DAY as the biopsy. I had asked several docs to do an MRI, & all said no. Until the biopsy showed that I had cancer, the ins co's...
17) ...regs indicated an MRI was an "unnecessary test." They wouldn't pay for it, so the docs wouldn't order it. As the MRI was the only test to show the internal tumors, if the cancer hadn't spread externally, it likely would never have been found. And I would likely be dead.
18) I have heard an argument for why insurance co's should be able to get away with having such regs that says the Constitution guarantees freedom of contract, and therefore, the insurer and doctor can contract with each other to do as they please.
19) Okay, but what about *my* freedom to contract? Why can't I contract with my doc to get the tests and services that I need, and with my insurer to pay for it, regardless of cost? Why isn't the consumer's freedom of contract important in this equation?
21) Too many people die because they can't get in to see a doctor because they don't have insurance, or their doc can't treat them effectively because the insurance co's limit what the docs can do. That's not hyperbole. That's fact.
22) It has to stop. The doctor/patient relationship has to be preeminent. Docs have to be able to do what they need to do to treat patients effectively. People have to be able to get in to see docs in time for it to make an actual difference.
23) I don't think the US has to go all the way to "socialized medicine" for that to happen, but I do believe that everyone should have the right to decent preventive care at a basic level. To be able to see a doc, be tested, & get treated for problems while those problems are...
24) ...still small in scope. In my case, running a simple blood test would have indicated the need for further testing,but my primary care doc kept saying it was unnecessary. Getting an MRI earlier might have shown the tumor in the uterus when it was still the only 1 I had.
25) People ask why I don't sue. Because docs have come to accept that anything the insurer doesn't want to pay for is "unnecessary," nothing in my story violates the "standard of care" of today's medicine. Therefore, there was no "malpractice," and the courts are closed to me.
26) Nothing my docs did, or failed to do, was anything out of the ordinary. Sad, unfortunate, but not an actionable "mistake." That's the reality of "tort reform."
27) Until we, as citizens, band together & demand better, nothing will change. But we *can* effect change. Remember when Republicans wanted to repeal the ACA & take back protections for pre-existing conditions, but so many stood up and said "no," that they couldn't? Now, they...
28) ...promise that even if the ACA is repealed, they will somehow protect that pre-existing condition coverage? They never quite explain how they'll manage that, but they promise it. Because we said they had to.
29) Sometimes, all it takes is 1 person, willing to stand up, and tell their story. I'm standing up. This is my story. I don't care if it makes someone uncomfortable. I hope to make change. Change IS uncomfortable.
30) I'm running for Congress in order to make a change. I hope I'll have your support. Thank you.
@threadreaderapp unroll, please
