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could 3 surgeons have missed ovarian cancer???
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desperate37 posted:
Hi to anyone on here. I'm 37yrs old, long story short, i went to my now former obgyn b/c of abdominal knife like pain and 24/7 nausea that started at exact same time, out of no where, while sitting in a chair in may 2011. He did ultrasound and found "very suspicious complex 5cm ovarian cyst." He was adamant it be biopsied and removed. Long story short, he said it was an endometrioma(JUST recently learned it actually popped and tissue he sent for biopsy wasn't enough to be biopsied and he also found a partially collapsed serous cyst in fallopiantube (he sent small part of the wall to be biopsied and it came back a benign serous tumor, but he never told me or my family about that at all,,,, he just told me/diagnosed me with stage 4 endometriosis (even though i did not have ONE symptom of endo, still don't, and I know you don't have to have symptoms to have it at all). He talked me into hysterectomy to "cure" my stage 4 endometriosis, but I didn't trust him so I went to an endometriosis specialty surgeon b/c several doc's chalked all of my symptoms up to that stage 4 endo diagnosis I was given in may 2011...still have an ovary(don't ask), current quickly growing "suspicious complex ovarian cyst, gained 15 lbs in a week recently, even though i haven't really eaten much in a year b/c of constant nausea, i'm now so bloated I look 8 months pregnant (not joking)...weight gain and major bloating all occured in last 2 weeks. My lower back started killing 3 months ago, latest obgyn said it's "most likely" just endometriosis and not to worry. Most recent ultrasound also showed my bladder was full with a LARGE amount of blood and debris, on top of growing complex ovarian cyst....was 1.8cm 2 months ago...1 month ago it is now 4cm. I'm so bloated it's hard to breathe. It took a lawyer to obtain most of my med records...I know that is NOT normal. in early 2010, my former obgyn had me go to ER on a Sunday night b/c i had horibble abdominal pain and low grade fever....they gave me enema, did CT scan and discharged me with paper work saying i had: constipation. I now have that CT scan that shows 2-3cm cysts in both ovaries, small amount of free fluid in pelvis and endometrial canal, "could be physiologic, but should be followed by ultrasound in 4-6 weeks." my obgyn was copied on that report, i was NEVER told about it and just learned about it after attorney friend got my records recently. That ct scan was in 5/2010, next ultrasound was not done until i switched obgyn's in may 2011 (a YEAR later). I feel physically awful. A friend of mine works at Dana Farber Cancer Institute (part of Harvard) and is adamant I come there for thorough 2nd opinion, regardless how physically weak I am. I know I need to. Anyone have any POSITIVE stories on Dana-Farber Cancer Institute? I can't handle more negative info (from docs, family..."if you had cancer, they would have figured it out by now and you would be hospitalized, etc." so desperate for HOPE. Since hysterectomy, which was supposed to cure my symptoms, almost all obgyn's in my city avoid me like plague, once they read my chart b/c they assume I'm going to sue(b/c of former obgyn's mistakes). I just want to know what's wrong so i can try and get well....no energy to sue! so fatigued, short of breath, 24/7 abdominal pain, nauseated, lower back pain, so bloated! I know my body and every doc hates that i educate myself and question them, but listening to them has only gotten me worse off! In tears now b/c this has been going on for 14 months , but recently escalated. GI issues, but normal colonoscopy, normal appendix, normal gallbladder, liver enzymes are elevated at times and so is estradiol, but no doc in my city seems to care. They haven't even done one blood test for any cancer. Any demand I make, they refuse! I'm 5'9, have always had fast metabolism and normal weight is about 124....in last 2 weeks it is now 142 lbs.....so nauseated for a year, i force one bowel of cereal down a day. Thoughts?? thank u!
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Jane Harrison Hohner, RN, RNP responded:
Dear desperate: If you can concerning symptoms, and already have a large body of knowledge about your prior care (including chart notes, operative report, biopsy results), you may want to seek a consultation with an expert. If you have an attorney, they can hire a GYN oncologist to review your records. You could also choose to see a GYN at a well known medical center--or even a team that specializes in chronic abdominal pain (pain for greater than six months duration).

You deserve a work up that you can believe, and that may take an out of town specialist to accomplish. ... Hopefully you are also still seeing someone who will follow your 4 cm complex ovarian cyst to be sure that it is not continuing to grow. They can evaluate for the presence of abdominal fluid given the 20 pound weight gain in two weeks accompanied by abdominal distention.

In Support,
Jane


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