1. < Gynecologic Cancers

The beginning process of diagnosing endometrial cancer

Posted by tishie58 @tishie58, Jun 27, 2024

Hi, I have had a positive UTI 5 times in 6 months. Along with increasing discomfort in my lower pelvis and lower back. It feels like my insides want to fall out. I had a CT scan and it said, suspicious for endometrial neoplasm. I am waiting for upcoming urgent GYN consult.
I'm so scared. Age 66. Anyone experience this and where are you in the process now. Thank you so much for responding.

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | 22 hours ago

@nikkiww7 Welcome to our Gynecological Cancers Support Group. Your pathology findings are the same as mine in 2019. I was stunned as I'm thinking you may be also. Still, you did indicate that the diagnosis explains symptoms you'd had for over 2 years.

When I had one UTI after another it was finally discovered that I had a "staghorn" shaped ureter kidney stone. I know how long it takes to diagnose these stones. For me, that was 30 years ago. My treatment was in-patient and outpatient lithotripsy. Was your kidney stone removed?

How fortunate that the testing you had for the kidney stone turned up endometrial cancer in the least aggressive kind. When I received my endometrial cancer diagnosis I was in my home area in the Upper Peninsula of Michigan. My gynecologist sent a referral to Mayo Clinic and I got in quickly at Mayo Clinic in Rochester, MN.

My experiences at Mayo Clinic have been this. Whenever there is a referral, follow-up, or testing, the system works efficiently and quickly. Which Mayo Clinic will you go to for your gyn oncology consult?

REPLY
NikkiWW | @nikkiww7 | 1 day ago
In reply to @naturegirl5 "@tishie58 I understand the fear and I felt that during the process of gynecological exams, a..." + (show)
@naturegirl5

@tishie58 I understand the fear and I felt that during the process of gynecological exams, a D & C, and then the pathology report that told me I was diagnosed with endometrial cancer. However, here is something that can be reassuring. Radiologists who read CTs and ultrasounds need to use the words « suspicious for » because it alerts the referring physician that it « could » be cancer. « Suspicious for » isn’t a diagnosis. It’s a supposition that what is found should be follow up on. My husband is a pathologist (now retired) who explained this to me.

I hope that the above can be reassuring. Your CT scan is suspicious for cancer. Or it may not be cancer. Ask yourself this question - what if isn’t cancer? Then your doctors must keep following up to figure out what is going on and how to treat this ongoing pain.

I had repeated UTIs 25 years ago. Then I had a fever. Repeated doses of antibiotics worked while I was taking them but once I finished the course of antibiotics the symptoms returned. I was diagnosed with a huge kidney stone that was was infect and was lodged in the upper part of my left kidney. This isn’t to say that your symptoms are those of kidney stones although I’m thinking your doctor was looking for that.

Referrals sometimes can take time. If you don’t hear back in a few days I recommend that you call the gynecologist’s office and press for an appointment very soon. Will you do that?

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Helen, Interesting - I've just gotten the info from my Mayo Gyn that my pathology report came back with the "Endometrial endometrioid adenocarcinoma, FIGO grade 1" finding.

It was discovered because of the abnormal thickness of the endometrium - that "endometrial stripe" showed up on my renal scan - which was to find out if I had/ when my golf-ball sized kidney stone (L) showed. I, too, had multiple UTIs (4 in 8 weeks), so it was a daisy-chain of events that led to the discovery.

I had not known that I was having were symptoms of the endometrial cancer - in retrospect, possibly for over 2 years.

Waiting for my consult with gyn oncology (learned of the path report results yesterday).

I was just struck by the similarities, and how blessed I feel to have the kidney stone as I would have continued to ignore those symptoms otherwise...

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wendymy | @wendymy | Jul 20, 2024
In reply to @colleenyoung "@wendymy, how did the ultrasound go? How are you doing?" + (show)
@colleenyoung

@wendymy, how did the ultrasound go? How are you doing?

Jump to this post

No results from the ultrasound or the biopsy yet. 🙏🏻 Thanks for checking in!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 20, 2024
In reply to @wendymy "I just started having bleeding yesterday, so I'm behind you. My gyno is sending me for..." + (show)
@wendymy

I just started having bleeding yesterday, so I'm behind you. My gyno is sending me for an ultrasound on Thursday and I'll have a biopsy in her office on August 2. I'm 56 and started HRT within the past year. I feel crampy too. I'll be praying for all of you who have posted. Originally from NJ, we are dual citizens now, living in Canada. Also a marathoner runner and still weigh what I did when I got married at 23. It seems that little is known about uterine cancer - we need to fix that!

Jump to this post

@wendymy, how did the ultrasound go? How are you doing?

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1 reply
tishie58 | @tishie58 | Jul 13, 2024

Good it's the same organism, that helped with the plan on putting me on Methenamine. I too felt I was doing something wrong, that unclean feeling each time I tested positive drove me nuts. But I am clean and it happens as we get older. Doctor said hopefully this breaks the cycle. We certainly don't need this along with everything else!

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jeanadair123 | @jeanadair123 | Jul 13, 2024
In reply to @tishie58 "I'm so sorry Jean for all you've been through and are going through. I had my..." + (show)
@tishie58

I'm so sorry Jean for all you've been through and are going through. I had my urology consult right after the endometrial biopsy on Thursday. He put me on an antibiotic prophylactically for the next year! Methenamine
It's called. It's specific to uti prevention. Not a broad spectrum antibiotic which is harder on the body. I also have scripts to get urine tested when I feel symptoms. Are your uti's caused by the same organism? I hope all the best for you. Trish

Jump to this post

Your comment was so interesting to me, I thought I had one coming on yesterday my doctor got me right in and did a urine sample all was good. However he gave me a prescription for nitrofurantoin and phenazopyridine so I could get it filled. It appears to be the same each time lately. Not sure how I get it I shower everyday, use a clean towel and facecloth. I am even overly anal about washing my dilator after use. I hadn’t seen my urology specialist in 3 years so I called and made an appointment for September. I will ask him about the methenamine though infact I will even ask my doctor when I see him next week and to get a prescription for the urine test although he is always great about seeing me but he won’t give me a prescription when I have one unless I go to the office for my urine test. Thanks so much that was so helpful. I hope you also are headed in the right direction. 😍

REPLY
tishie58 | @tishie58 | Jul 13, 2024
In reply to @wendymy "I just started having bleeding yesterday, so I'm behind you. My gyno is sending me for..." + (show)
@wendymy

I just started having bleeding yesterday, so I'm behind you. My gyno is sending me for an ultrasound on Thursday and I'll have a biopsy in her office on August 2. I'm 56 and started HRT within the past year. I feel crampy too. I'll be praying for all of you who have posted. Originally from NJ, we are dual citizens now, living in Canada. Also a marathoner runner and still weigh what I did when I got married at 23. It seems that little is known about uterine cancer - we need to fix that!

Jump to this post

Hi Wendy,
I'll be praying for you as well as all the women on this most helpful forum. The waiting for each step has not been easy.
Be patient with yourself, there is no right or wrong way to deal with any of this. Praying for all the best for you. Please let me know how you are doing. Trish

REPLY
tishie58 | @tishie58 | Jul 13, 2024
In reply to @angierivas1 "Trish, I was diagnosed with Lynch syndrome before my biopsy, so I was filled with fear..." + (show)
@angierivas1

Trish, I was diagnosed with Lynch syndrome before my biopsy, so I was filled with fear when finding out I had endometrial cancer.
The gynecologist who performed the procedure knew me from my yearly checkups. She was kind and showed compassion towards me.
I was in tears because of the uncertainty. My mom has been battling the same cancer for the past six years.
The doctor’s assistant held my hand during the biopsy. That was comforting.
I'll pray that you encounter angels today and that the results return negative. 🙏💓

Jump to this post

Thank you Angie for reaching out. I'm so sorry for all you are going through. The doctor that did my biopsy turned out to be very sensitive to my needs. Now waiting for the results.
I definitely believe and feel surrounded by my angels. I appreciate all the beautiful women that have contacted me on this site as well!!! Thank you
Trish

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wendymy | @wendymy | Jul 13, 2024

I just started having bleeding yesterday, so I'm behind you. My gyno is sending me for an ultrasound on Thursday and I'll have a biopsy in her office on August 2. I'm 56 and started HRT within the past year. I feel crampy too. I'll be praying for all of you who have posted. Originally from NJ, we are dual citizens now, living in Canada. Also a marathoner runner and still weigh what I did when I got married at 23. It seems that little is known about uterine cancer - we need to fix that!

REPLY
2 replies
tishie58 | @tishie58 | Jul 13, 2024
In reply to @jeanadair123 "I have had a uti every month for 4 months, it is wearing me down but..." + (show)
@jeanadair123

I have had a uti every month for 4 months, it is wearing me down but the fact I hate keep taking antibiotics. I had uterus cancer in 2009 and recurrence in my vaginal cuff in 2016. I also get nausea and lower back pain but I keep up on my tests CT, MRI for breast since I have had breast cancer also. Pet scan and my blood tests I also see my gynecologist oncologist annually and my regular gynecologist annually. They are aware of my trust issues since they missed my cancer before. Just be proactive that’s all you can do and try and get through a day when your thoughts are not about cancer, it’s hard. Some of my friends think I am paranoid and a hypochondriac I don’t care.

Jump to this post

I'm so sorry Jean for all you've been through and are going through. I had my urology consult right after the endometrial biopsy on Thursday. He put me on an antibiotic prophylactically for the next year! Methenamine
It's called. It's specific to uti prevention. Not a broad spectrum antibiotic which is harder on the body. I also have scripts to get urine tested when I feel symptoms. Are your uti's caused by the same organism? I hope all the best for you. Trish

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