1. < Gynecologic Cancers

Ovarian Cancer: Anyone have trouble getting diagnosed?

Posted by shesmikey @shesmikey, Jun 2, 2019

Hello, I'm hoping to get some advice on how to get my Dr to run the proper tests? I'm 42 years old and am going through who knows what. It started a few months ago with irregular bleeding. Just figured hormonal changes in body. Then, had a UTI which turned into severe kidney infection which both were treated with antibiotics within just 3 weeks of each other. Right now, no infection, but am constantly nauseated, my lower back pain is a constant nag, last months period lasted over a week and this months period sent me to ER thinking I was going to bleed out. That only lasted one day. Pain and bleeding with sex, and I just feel really crummy all the time. I've had uterine ultra sound which came back normal. Then only thing that did not come back normal was a single 5mm nodule found on bottom right lung. No one seems to know what is wrong with me. I have been referred to OB GYN. Still waiting for referral approval.

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jbickler | @jbickler | Oct 15, 2022
In reply to @jbickler "Well said, you truly have to be your own advocate and be persistent no matter what...." + (show)
@jbickler

Well said, you truly have to be your own advocate and be persistent no matter what. My chemo and surgery was almost a year ago this month and I am a. Zejula daily to help with the recurrence. I pray every day for all of us that is on the journey of this terrible disease. 🙏🏻

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Does anyone know of any new studies out there for the recurrence of ovarian cancer? We just need to stay updated all the time, if anyone knows of anything new out there please keep us all aware…Thank You Thank You!!

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vtnanny209 | @vtnanny209 | Oct 15, 2022
In reply to @katycot "I hope whatever is going on will be found to be something minimal and easy to..." + (show)
@katycot

I hope whatever is going on will be found to be something minimal and easy to address. Dealing with this on top of those floods cannot be easy, I am so sorry.

I am glad you are seeing a gynOnc for this, specialties really seem to matter in our case. If they have not yet done CA125 and HE4 perhaps ask for one to have at least for your baseline.

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No I haven’t had those blood tests. I didn’t ask the oncologist about them but did ask my GP and he said those are done after the definite diagnosis to stage the cancer. So I didn’t ask the oncologist and he didn’t offer them either. I’m anxious about the surgery. It scares me.

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1 reply
Carrie | @katycot | Oct 15, 2022
In reply to @vtnanny209 "No I haven’t had those blood tests. I didn’t ask the oncologist about them but did..." + (show)
@vtnanny209

No I haven’t had those blood tests. I didn’t ask the oncologist about them but did ask my GP and he said those are done after the definite diagnosis to stage the cancer. So I didn’t ask the oncologist and he didn’t offer them either. I’m anxious about the surgery. It scares me.

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I personally would insist on Ca125, it’s a simple blood test and could be helpful. It’s one of the first things my gynOnc ordered.

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1 reply
vtnanny209 | @vtnanny209 | Oct 16, 2022
In reply to @katycot "I personally would insist on Ca125, it’s a simple blood test and could be helpful. It’s..." + (show)
@katycot

I personally would insist on Ca125, it’s a simple blood test and could be helpful. It’s one of the first things my gynOnc ordered.

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Thank you for the info I will definitely seek to have this done.

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meandmsjones | @meandmsjones | Oct 16, 2022
In reply to @katycot "My goodness yes and yes again! I was first diagnosed in 2004, during a standard hysterectomy...." + (show)
@katycot

My goodness yes and yes again! I was first diagnosed in 2004, during a standard hysterectomy. Leading up to this I had 5 years of vomiting, unpredictable periods, and bowel issues. I saw multiple doctors of various specialties and had ultrasounds and scans that showed oddities without diagnosis; everyone felt it was diverticulosis until a fibroid was detected and they ordered hysterectomy. Nobody would run CA125 until I was in surgery.

Took chemo and went into remission until 2022. Symptoms started to return in 2016. My CA125 was slowly rising at a steady upward tick, but still considered normal. I was still accessing gynOnc at university cancer center (with an active ovarian cancer specialty and screening program) to report concerns and requesting PET scan which I had never had. PETs were not provided, only CT and medical team continued to reject the concerns of recurrence with diagnosis of IBS.

Fortunately I moved to AZ and new doctors were concerned with rising CA125 that had finally exceeded normal, to 50. Connected with Mayo where PET was immediately ordered to discover metastasis to multiple abdominal locations, and to diaphragm where I had been reporting pain.

This is not a silent cancer, I feel the women are the ones being silenced by standard practitioners and those not highly specialized and laser focused on ovarian cancer symptoms and treatments.

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I am so sorry this happened to you; your last sentence is soooo powerful. I am having my hysterectomy tomorrow and ovary removal. I have pre-cancerous atypical cells in my uterus. I will be 50 in a month. I was hesitant to have my ovaries removed, but weighed all of the risks. I am still not thrilled to lose my ovaries, but know its for the best. I was ignored by doctors for a year as well; I had backpain (lower right back, stabbing) and a lot of bloating. I too was told probably GI issues, GERD, even though I have zero symptoms of GERD.

Sending much love to you.

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1 reply
Carrie | @katycot | Oct 16, 2022
In reply to @meandmsjones "I am so sorry this happened to you; your last sentence is soooo powerful. I am..." + (show)
@meandmsjones

I am so sorry this happened to you; your last sentence is soooo powerful. I am having my hysterectomy tomorrow and ovary removal. I have pre-cancerous atypical cells in my uterus. I will be 50 in a month. I was hesitant to have my ovaries removed, but weighed all of the risks. I am still not thrilled to lose my ovaries, but know its for the best. I was ignored by doctors for a year as well; I had backpain (lower right back, stabbing) and a lot of bloating. I too was told probably GI issues, GERD, even though I have zero symptoms of GERD.

Sending much love to you.

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I will be thinking of you tomorrow and hoping for best outcomes and speedy recovery. I don’t miss my ovaries one bit, they were nothing but trouble!

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