Ovarian Cancer: Anyone have trouble getting diagnosed?

Posted by shesmikey @shesmikey, Sun, Jun 2 12:39am

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.

Hi @shesmikey, welcome to Connect. You must be concerned. Getting tests is exhausting, especially when it is unclear what they are looking for. It's a challenge to be the driver when you're feeling unwell and vulnerable, but you have to persist and be your own advocate. It looks like you've already set up a good next step – an appointment with an OB GYN. Be sure to mention the lung nodule as well as the gyne issues.

Here is some information about lung nodules; according to this article by Mayo Clinic “most lung nodules are noncancerous (benign). Lung nodules — small masses of tissue in the lung — are quite common. They appear as round, white shadows on a chest X-ray or computerized tomography (CT) scan." Read more here:
http://mayocl.in/2hf0oJm

You might also find the tips that members share in this discussion to be useful:
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

I hope you get an appointment soon and will report back what you learn.

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I'm a 42 year old with family history of colon cancer (maternal grandmother in her early 50's) I also believe my paternal grandmother passed from cancer as well (not 100% sure though). I did test positive for BRCA in my DNA. In 2009 I had polyps removed during a colonoscopy and have not gone back for another scan.
Four months ago, I started feeling ill (lower back pain, hurting to pee, etc). Couldn't pinpoint an exact symptom, but I did go to ER where I was diagnosed with UTI and sent home with antibiotics. About 3 weeks later, I ended up in the ER again for same issue, told I had UTI and sent home, more antibiotics. Three weeks after that is when the nausea just hit me like a ton of bricks. Had a KUB scan which only found 5mm nodule in base of right lung,. I was Dx'd as having kidney infection, given yet stronger antibiotics and sent home. Urinalysis had come back with blood in urine, but not an infection.
During that time, I had had a period that lasted over a week (which was very unlike me). The following period after that was about awful. The clotting was extreme and lasted only 24 hours. Also had bleeding/pain during intercourse. Now, I'm also noticing I'd been feeling weakness and extreme fatigue. Went to my GP where some labs were done and a referral was given for OB Gyn. During this time, I'm noticing these symptoms are persistent. Good days had become a thing of the past and now this severe bloat has me looking like I'm about to deliver. But this bloat seems to have started to mess with my shoulder, breathing is in short breaths.
So I have my appointment with OB where he suggests a hysterectomy, gets my CA 125 along with CBC. The CA 125 cane back 22 and now the last three cbcs have come back with elevated WBC/lymphs absolute. Dr sent me home to take provera in case of endometriosis, but before I could even start that, I started my period 2 weeks early. I also had a seizure with this one. It has been 2 years (longest ever) since I had a seizure, was Dx epilepsy (catamenial) at age 14.
I then get a call from Dr stating I needed to go in and then told me my hysto was off the table, that he believes he will be finding something and do this week just be exploratory laparoscopy.
Last night, was in ER again for my extreme bloating. Was told they only drain for person's with liver failure. Have me a CT with contrast.

All scans have pretty much clear. A transvaginal showed an ovarian cyst but that was normal

My question is:. Can CTs miss ovarian cancer, or could I have colon cancer and be missing it? Also, if it's actually in my colon, would Dr be able to recognize it during laparoscopy if it's not in ovaries? My quality of life lately is in the toilet and I just want to start feeling human again.

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@shesmikey

I'm a 42 year old with family history of colon cancer (maternal grandmother in her early 50's) I also believe my paternal grandmother passed from cancer as well (not 100% sure though). I did test positive for BRCA in my DNA. In 2009 I had polyps removed during a colonoscopy and have not gone back for another scan.
Four months ago, I started feeling ill (lower back pain, hurting to pee, etc). Couldn't pinpoint an exact symptom, but I did go to ER where I was diagnosed with UTI and sent home with antibiotics. About 3 weeks later, I ended up in the ER again for same issue, told I had UTI and sent home, more antibiotics. Three weeks after that is when the nausea just hit me like a ton of bricks. Had a KUB scan which only found 5mm nodule in base of right lung,. I was Dx'd as having kidney infection, given yet stronger antibiotics and sent home. Urinalysis had come back with blood in urine, but not an infection.
During that time, I had had a period that lasted over a week (which was very unlike me). The following period after that was about awful. The clotting was extreme and lasted only 24 hours. Also had bleeding/pain during intercourse. Now, I'm also noticing I'd been feeling weakness and extreme fatigue. Went to my GP where some labs were done and a referral was given for OB Gyn. During this time, I'm noticing these symptoms are persistent. Good days had become a thing of the past and now this severe bloat has me looking like I'm about to deliver. But this bloat seems to have started to mess with my shoulder, breathing is in short breaths.
So I have my appointment with OB where he suggests a hysterectomy, gets my CA 125 along with CBC. The CA 125 cane back 22 and now the last three cbcs have come back with elevated WBC/lymphs absolute. Dr sent me home to take provera in case of endometriosis, but before I could even start that, I started my period 2 weeks early. I also had a seizure with this one. It has been 2 years (longest ever) since I had a seizure, was Dx epilepsy (catamenial) at age 14.
I then get a call from Dr stating I needed to go in and then told me my hysto was off the table, that he believes he will be finding something and do this week just be exploratory laparoscopy.
Last night, was in ER again for my extreme bloating. Was told they only drain for person's with liver failure. Have me a CT with contrast.

All scans have pretty much clear. A transvaginal showed an ovarian cyst but that was normal

My question is:. Can CTs miss ovarian cancer, or could I have colon cancer and be missing it? Also, if it's actually in my colon, would Dr be able to recognize it during laparoscopy if it's not in ovaries? My quality of life lately is in the toilet and I just want to start feeling human again.

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@shesmikey, great questions. I think you should repeat these questions to your OB Gyn as well. It sounds like you are getting all the tests that are used to detect ovarian cancer. See the American Cancer Society's list here:
https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/how-diagnosed.html

I'm also bringing in @starko @lynann99 @rochellewisner @odette and @susu2 to this discussion as they may be able to share their experiences about diagnostic testing and questions to ask.

Shesmikey, it's important that you feel confident in the care that you're getting. Keep asking questions and don't forget that you can also ask for a second opinion. Are you home now? How are you feeling?

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@shesmikey

I'm a 42 year old with family history of colon cancer (maternal grandmother in her early 50's) I also believe my paternal grandmother passed from cancer as well (not 100% sure though). I did test positive for BRCA in my DNA. In 2009 I had polyps removed during a colonoscopy and have not gone back for another scan.
Four months ago, I started feeling ill (lower back pain, hurting to pee, etc). Couldn't pinpoint an exact symptom, but I did go to ER where I was diagnosed with UTI and sent home with antibiotics. About 3 weeks later, I ended up in the ER again for same issue, told I had UTI and sent home, more antibiotics. Three weeks after that is when the nausea just hit me like a ton of bricks. Had a KUB scan which only found 5mm nodule in base of right lung,. I was Dx'd as having kidney infection, given yet stronger antibiotics and sent home. Urinalysis had come back with blood in urine, but not an infection.
During that time, I had had a period that lasted over a week (which was very unlike me). The following period after that was about awful. The clotting was extreme and lasted only 24 hours. Also had bleeding/pain during intercourse. Now, I'm also noticing I'd been feeling weakness and extreme fatigue. Went to my GP where some labs were done and a referral was given for OB Gyn. During this time, I'm noticing these symptoms are persistent. Good days had become a thing of the past and now this severe bloat has me looking like I'm about to deliver. But this bloat seems to have started to mess with my shoulder, breathing is in short breaths.
So I have my appointment with OB where he suggests a hysterectomy, gets my CA 125 along with CBC. The CA 125 cane back 22 and now the last three cbcs have come back with elevated WBC/lymphs absolute. Dr sent me home to take provera in case of endometriosis, but before I could even start that, I started my period 2 weeks early. I also had a seizure with this one. It has been 2 years (longest ever) since I had a seizure, was Dx epilepsy (catamenial) at age 14.
I then get a call from Dr stating I needed to go in and then told me my hysto was off the table, that he believes he will be finding something and do this week just be exploratory laparoscopy.
Last night, was in ER again for my extreme bloating. Was told they only drain for person's with liver failure. Have me a CT with contrast.

All scans have pretty much clear. A transvaginal showed an ovarian cyst but that was normal

My question is:. Can CTs miss ovarian cancer, or could I have colon cancer and be missing it? Also, if it's actually in my colon, would Dr be able to recognize it during laparoscopy if it's not in ovaries? My quality of life lately is in the toilet and I just want to start feeling human again.

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I am going out on a limb here because I am prejudiced in favor of Mayo Clinic. At the very first signs of ovarian, my husband and I traveled 2500 miles to get the best care possible, rather than accept what care was available locally. Within the 1st week, after giving Mayo only a few hours noticed, I had multiple tests, labs and surgery scheduled. The healing had begun!
Not sure where you live but you must do whatever is necessary to get the most accurate diagnosis possible and the quickest. Go now to the best there is! You are way too young to “live life in the toilet”.

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@colleenyoung

@shesmikey, great questions. I think you should repeat these questions to your OB Gyn as well. It sounds like you are getting all the tests that are used to detect ovarian cancer. See the American Cancer Society's list here:
https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/how-diagnosed.html

I'm also bringing in @starko @lynann99 @rochellewisner @odette and @susu2 to this discussion as they may be able to share their experiences about diagnostic testing and questions to ask.

Shesmikey, it's important that you feel confident in the care that you're getting. Keep asking questions and don't forget that you can also ask for a second opinion. Are you home now? How are you feeling?

Jump to this post

I think it would be wise to pursue care at a high-volume cancer center if you have access to one. My care was provided by one of the top four centers in the country with a second opinion from one of the others. I feel confident in their advice. You are very young and you should be looking for the best care possible. Write if you have questions. My particular diagnosis is associated with endometriosis and is a rare ovca.

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@odette

I think it would be wise to pursue care at a high-volume cancer center if you have access to one. My care was provided by one of the top four centers in the country with a second opinion from one of the others. I feel confident in their advice. You are very young and you should be looking for the best care possible. Write if you have questions. My particular diagnosis is associated with endometriosis and is a rare ovca.

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Well this past week I took a trip to the ED and this was the first CT I had that actually picked up bulky uterus. My eosinophils and lymphs absolute were off the charts high. I will know exactly what this is in Tuesday but the not knowing right now gives me great anxiety. Nausea, fatigue have me in a bad way

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A "bulky uterus" meaning they found a mass? I'm glad that you are seeing someone on Tuesday, but waiting even that long is difficult when you are feeling so miserable. Do you have someone to go with you, to support you during this process? It is extremely helpful to have another person with you to listen to the doctor as it is such an emotional experience. I'm sorry you are feeling so uncomfortable. It can be overwhelming!

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@odette

A "bulky uterus" meaning they found a mass? I'm glad that you are seeing someone on Tuesday, but waiting even that long is difficult when you are feeling so miserable. Do you have someone to go with you, to support you during this process? It is extremely helpful to have another person with you to listen to the doctor as it is such an emotional experience. I'm sorry you are feeling so uncomfortable. It can be overwhelming!

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Yes I believe it's a mass. I had gone in for my bloating, hoping they'd drain, but they'll only drain if I'm in liver failure. I was supposed to be having a hysterectomy Tuesday but my Dr called me in to tell me all that is off the table. So this is strictly exploratory/biopsy.

More than anything, I wish my mom would've wanted to be by my side throughout this, but she won't. I have a severe autistic teenage son with extreme behavior and she is scared to death of him. Luckily, I have a friend taking two days off work for me, but other than that, it's just me and my son.

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@shesmikey

Yes I believe it's a mass. I had gone in for my bloating, hoping they'd drain, but they'll only drain if I'm in liver failure. I was supposed to be having a hysterectomy Tuesday but my Dr called me in to tell me all that is off the table. So this is strictly exploratory/biopsy.

More than anything, I wish my mom would've wanted to be by my side throughout this, but she won't. I have a severe autistic teenage son with extreme behavior and she is scared to death of him. Luckily, I have a friend taking two days off work for me, but other than that, it's just me and my son.

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I am glad you have a friend supporting you. I always write down all of my questions in advance and my caregiver would actually record the answers from my gyn/onc surgeon or oncologist so I could just listen. Admittedly, it is very hard to stay calm under the circumstances so it really helps to have another set of ears. After the appointment I could review all of the information that had been provided. I could then make decisions when I could think more clearly.

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Hi, request a CA125 blood test. It’s a test that helped diagnose me.

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@maryeq1516

Hi, request a CA125 blood test. It’s a test that helped diagnose me.

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Good idea. I get a CA125 every two months, plus a HE4,S, which my gyn/oncology surgeon believes is still more accurate.

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I said for 2 years that I had ovarian cancer but the doctor just brushed it off. I would throw up after eating if I moved to fast as the food couldn’t get down all the way in a normal time matter and sat in my throat. Lower back ache had been there for a few years but nothing done about it. Then when I would sit down it started to feel like someone shoved a knife up inside of me. They tested for UTI and of course it wasn’t. Finally about 3 months later at my yearly physical the doctor felt something when he pushed on my abdomen. That started the blood tests and x-ray. Blood test showed cancer and I got sent to Oncology. In a whirlwind of 3 weeks, I had biopsies, MRI, CT scan, and PET scan. Then sent to Rochester to see a surgeon on a Friday. He said he already had me scheduled for surgery the following Monday. I had stage 3C ovarian cancer. Surgery done and then 4 months of chemo in my hometown area. I saw the surgeon a year after the initial life saving surgery and he told me that he honestly didn’t expect to see me again due to how many organs had cancer in them and the number of tiny tumors that he had to leave in me. But here I still am 7 years after surgery. Get the doctor to give you a CA-125 blood test. It isn’t always accurate but is the starting point to check for gynecological cancers. Good luck to you.

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I was diagnosed last November with stage 3c low and high grade ovarian cancer. Years of complaining got me no where! It took a cyst (that I didn’t know about) rupturing and not being able to void to have an ultrasound ordered. From there, it moved fast! I’m fortunate enough to work for a large health care system, and got in with our head of our gyn/onc department 2 days after my ultrasound. Stat bloodwork and CT scan done that same day, surgery scheduled 6 days later. Just finished my frontline chemo June 7th, and was just declared NED last week! My only regret is that I wasn’t more persistent, and that I did things the proper way. I’m a nurse, and could’ve had any one of the doctors I work with order me more test, but I think I was just hoping it was menopause (I had a uterine ablation years ago, so no menstrual changes for me)….plus, I had very vague symptoms. Weight gain, hair loss, extreme fatigue…could have been several other issues, even though I knew OC was a potential, I blew it off, as cancer hardly runs in my family, and absolutely no female cancers!

I would definitely ask for a CA125 and an ultrasound (including transvaginal). Just keep in mind, the CA125 is elevated for several other things besides cancer. Also, not every women’s CA125 is elevated, even with cancer. Unfortunately, there is no one test to detect OC, just a handful of tests together, the only definitive way is through pathology, which means surgery. Best of luck!!

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@dswiney

I was diagnosed last November with stage 3c low and high grade ovarian cancer. Years of complaining got me no where! It took a cyst (that I didn’t know about) rupturing and not being able to void to have an ultrasound ordered. From there, it moved fast! I’m fortunate enough to work for a large health care system, and got in with our head of our gyn/onc department 2 days after my ultrasound. Stat bloodwork and CT scan done that same day, surgery scheduled 6 days later. Just finished my frontline chemo June 7th, and was just declared NED last week! My only regret is that I wasn’t more persistent, and that I did things the proper way. I’m a nurse, and could’ve had any one of the doctors I work with order me more test, but I think I was just hoping it was menopause (I had a uterine ablation years ago, so no menstrual changes for me)….plus, I had very vague symptoms. Weight gain, hair loss, extreme fatigue…could have been several other issues, even though I knew OC was a potential, I blew it off, as cancer hardly runs in my family, and absolutely no female cancers!

I would definitely ask for a CA125 and an ultrasound (including transvaginal). Just keep in mind, the CA125 is elevated for several other things besides cancer. Also, not every women’s CA125 is elevated, even with cancer. Unfortunately, there is no one test to detect OC, just a handful of tests together, the only definitive way is through pathology, which means surgery. Best of luck!!

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@dswiney, welcome to Connect. What a relief to get the news of no evidence of disease (NED), especially after such a long rough path to getting diagnosed. It's so easy to look back and say what one could've, should've done and outta have known better. I think ignoring vague symptoms is something many of us do. What is your follow-up schedule?

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@colleenyoung

@dswiney, welcome to Connect. What a relief to get the news of no evidence of disease (NED), especially after such a long rough path to getting diagnosed. It's so easy to look back and say what one could've, should've done and outta have known better. I think ignoring vague symptoms is something many of us do. What is your follow-up schedule?

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Thank you! I didn’t necessarily ignore my symptoms, but 3 separate practitioners weren’t concerned…
It is such a relief to be done!! I am going to have CA125 levels drawn every three months, starting in September, when I will be 3 months post chemo! I’ll do that for 2 years, then every 4 months for 2 years, then every 6 months for a year!

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