Ovarian cancer worries with negative tests
Hello, I'm 39 years old with really no medical history at all to speak about. I have never had gynecologic problems. I have never experienced any of the problems below, it's all very new and very abnormal for me.
In the first week of December I started having what I would call bladder aching, I thought I was getting a bladder infection (never have had a UTI but figured that's what it would feel like). My period was two weeks away still so didn't think that would be a reason for cramping. My period ended up starting a week early with intense left sided pain between my hips, that caused pain also in my left hip and down my left leg. I had about 5 hours of this pain, crying, fidgeting, just trying to get comfortable. I don't even always have cramps with my period but if I do they're normal, manageable even without modalities and usually only on day 1. I'm an ED nurse and I ran through the emergency possibilities and knew it was not an emergency so waited it out. The pain as never gone away since, I continue to have central pelvic pain thats exaggerated on the left side and into my hip only it's less intense than that one episode. Both hips ache, upper buttocks/lower back aching. Since mid December I have abdominal bloating, since the beginning of January it has been unreal, like I'm 5 months pregnant (I've had 4 kids), I'm a tall thin build so the bloat is very obvious. And also bladder irritability, like my bladder is full but then when I go there isn't as much in there as I would have thought. I'm so uncomfortable.
I've been in to see my PCP and an OBGYN. I've had a vaginal panel that was all negative, a Transvaginal Ultrasound that was negative except for some free fluid in my pelvis (which they disregarded as being pretty normal), negative for UTI, negative for pregnancy, normal pap one year ago and always before that etc. PCP wanted to treat me for PID even though there is no medical reason to diagnose me with that, the OBGYN diagnosed me with Endometritis, again with no real medical reason except for sensitivity of my uterus on manual exam. I agreed and have been on the antibiotics for a week and a half with no improvement in my symptoms. She wants to prescribe pelvic floor therapy for me if the antibiotics don't work.. again, no real medical reason as far as I understand except for some sensitivity she noticed on my manual exam.
I am advocating for myself in doing my research and I'm finding that there are a lot of people who this kind of thing seems to happen to and then they end up finding out they have OVCA. In all my research I feel sure that they are ignoring my symptoms because 1)"there's no mass or abnormality on the Transvaginal US and 2)I am literally probably the lowest risk out there for OVCA. I don't even have my fallopian tubes anymore (taken out 10 years ago as birth control choice). I realize that but if I were playing a medical diagnosis matching game I would choose ovarian cancer as the one that this all points to the most but no one wants to consider that. I'm scared that I will be ignored until I'm really sick.
I guess im wondering two things: do I need to press towards a legitimate diagnosis? And if so, how? I feel so frustrated and discouraged.
Any other helpful advise/cautions/information/education etc is very much appreciated.
Comments
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Have you had a CA125 blood test? If not, I would ask for that next. A number over 35 could indicate OVCA or other problems. You should also ask for an MRI. Keep pushing for a satisfactory answer.
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I agree with Rochmarmay. Push for MRI and CA 125. You definitely want to rule out OVCA. Good luck with everything!
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No, I have not had that blood test and an MRI hasn't even been considered in the future by either of the Doctors I've seen. Do you think I should go back in to my PCP or the OB to request those things? Neither seem concerned. I'm not used to telling the doctors what to do, I'm used to taking their orders.. so do I just tell them, "this is what I want" or do I just continue to try to convince them that something isn't right? Thank you for your suggestions, I felt very alone until you responded to my post. Thank you for taking your time to respond 🩷
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Okay Gayle 😬, this is an interesting approach for me. But I am bolstered by all your guy's encouragement. I'm going to make an appointment to see my PCP and I will tell her I want those things.
You said an OBGYN oncologist? Should I go find one now and cut the corners? Or see my PCP first? Will an OBGYN Oncologist see me without a cancer diagnosis and all negative tests?
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I think it depends on your insurance. I don’t have to have a referral. It probably would be quicker to ask your PCP if they can order that test. My OBGYN did.
I’m in Winston-Salem NC and we have a teaching hospital and two excellent medical centers. Depending on where you are, you might ask your PCP about recommendations for about OBGYNs who treat cancer.0 -
I’d find a gynecological oncologist and request a CA125 and some type of imaging such as CT or MRI. I found that neither my PCP or the medical oncologist treating me for breast cancer were very familiar with ovarian cancer in spite of my genetic mutation which increases my risk. I found a GYN Onc and had a TVUS and CA125. Neither indicated ovarian cancer. However a prophylactic BSO found cancer in both fallopian tubes, both ovaries and pelvic washings.
Please note that CA125 is not accurate for everyone. My CA125 has never been above 7 yet I have ovarian cancer.
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Yes,tell them you want them to eliminate the possibility of OVCA. They need to at least do a CT scan and see what things look like in your pelvic area. My tests in order were CT scan, MRI, blood test. I have a very large mass on my right ovary and medium size one on the left ovary. Full hysterectomy happening on 2/6. CA125 was 672. They still haven’t said with certainty that I have OVCA but it sure seems that way. I had no unusual symptoms which is pretty common for OVCA, so that might bode well for you, since you’ve had so many symptoms. Honestly it sounds like endometriosis to me but there’s surgery for that too. Has that been suggested?
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Hi, thank you for your comment. I had a TVS that didn't show any masses so Im being told by some that there's no way it's Ovarian cancer because by the time I have symptoms they would be able to see a mass. Endometriosis was another dx I was thinking of as a possibility.. I don't think that shows up on Ultrasound. I would really like a CT just to be sure there isn't something else going on that wouldn't be visible on an Ultrasound but we will see what the OB says. I messaged her this morning to let her know I'm almost done with the antibiotics they prescribed and there is no change in my symptoms. So we'll see what she says. Thank you, I pray your surgery goes well. How old are you if I may ask? And you said you didn't have any symptoms with masses that large on both?
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I’m 64, 14 years post menopausal. No symptoms that aren’t easily attributed to indigestion or gas, back ache etc. larger growth is 14cm. The size of a large grapefruit.
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Hello Amb
In 2019 My Oby doctor found a large tumor in my uterus it was broken in pieces and removed vaginally all test pointed to a benign tumor. for two year’s I followed up with a urologist because I was certain I had bladder cancer or something was wrong with my bladder my symptoms we’re feeling of pressure and lower abdominal pain as well as some erratic lack of control it was all attributed to constipation. on February 2024 I overdosed on Benadryl (not on purpose ) fell down and hit my head
In the ED they decided to do a ct scan because I was sleeping the whole time and found several tumors when I visited an OB oncologist he gave me 3 months to live as I had ovarian cancer that had spread to the lymph nodes, stomach, lung. Please make sure they do an MRI or CT Scan with contrast and without. Insist on a diagnosis that makes sense to you. I am still fighting.
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Hi: My first symptom was also difficulty urinating. It was very uncomfortable to be unable to pee or fully empty my bladder. I had a CT scan for lower back issues that showed a slipped disc and what they thought was a benign uterine fibroid (I am 67). Through months of various tests (CT-scan, MRI, CA-125) and MD appointments (PCP, GYN, Uro-Gyn, Gyno-Onco) in both FL and NYC), Ovarian was not flagged (leiomyosarcoma was flagged in a trans-vag US, then ruled out with MRI). Everyone thought it was a big fibroid pressing on my bladder. I did not think OC, just that something was very wrong. Only after my hysterectomy (total, vaginal) and after the pathology came back positive for grade 2 OC, stage 2 was I diagnosed. I finished chemo in December. I am very lucky that it was caught fairly early and my long-term prognosis is good.
This is a long-winded way to say that it is really, really hard to diagnose OC. Listen to your own body and advocate for yourself. The OC symptoms - if there are any - are so easy to dismiss as 'nothing'. Oh, it's just PMS, or menopause, or UTI, or that taco you had for lunch but maybe GERD - take TUMS, or women who have given birth have to pee frequently, or lots of other everyday, nothing-to-worry-about symptoms that come and go…
Talk with your MD, but from my experience, I would seriously consider a total hysterectomy. For me, it was the only way they were able to diagnose OC. And my urinary problems are now gone.
Hugs and good luck.
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Your symptoms are very similar to the ones I was having. I am active (went skydiving 20 days before my diagnosis) and started having the pain on the lower left side of my abdomen. Also bloating that was squishy and very abnormal for me. I exercise daily with emphasis on core work. It wasn’t until I thought I had pneumonia that I went to the doctor and he thought I might have diverticulitis and pneumonia but ordered an xray and CT scan. My scan revealed fluid in my abdomen and on my lungs. The following day I had a CA125 test and the number was 1,170. It is supposed to be 0-35. I was diagnosed with Stage IV Ovarian Cancer.
Advocate for yourself. Insist on 1) CA125 blood protein test, 2) CT scan. A gyn onc is great (mine did my hysterectomy) but I also have an oncologist who directs my chemo treatments. I am in Chicago if you need a referral near there.
If it feels abnormal, it is. It is your body and no one knows it better than you. All the back, leg and abdominal pain is your body sending warnings to you. I hope you do NOT have Ovarian Cancer, but if you do, don’t fret. There is an army here to support you.
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Im grateful for your post and the posts of others. I have an appointment with my PCP again on the 21st (so Friday, wow that came fast). I plan on talking with her about my concerns since I saw another NP in her office the first time I went in with symptoms. I have done the round of antibiotics that they wanted me to do with no changes, I am working on orchestrating the pelvic floor therapy they want me to do so that when I go in I can let her know I've done what I was supposed to do and I don't believe pelvic floor therapy is going to help but I will go ahead with it AND would like a CT and /or blood work to be sure there isn't something else going on in my abdomen/pelvis (because something is clearly going on).
May I ask how old you are? Did they see masses on your scans? I don't really feel comfortable scheduling myself to see an OB Onc without any clear reason... Did you get connected with one after your scans showed something?
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I had issues too! For a few years and all my docs said Endo or my blood disorder. Well my labs all normal everything except my CT - O needed a stat colonoscopy and they found the first tumor then. Then CT later I was in stat sx for 7 tumors in total! Keep fighting bc I did
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