Delay in diagnosis

Posted by chantal25 @chantal25, Jul 23 9:48am

I’m trying not to beat myself up but I had blood when I wiped back in December and attributed it to small stones in both kidneys which were shown on ultrasound as a follow up to a large stone. I had spotting in June and went to gyno, had ultrasound which showed thickening and then a D&C. Lab results showed endometrial cancer grade 1. I’m scheduled for a hysterectomy in a few weeks. Just feeling upset about my own decision to delay pelvic ultrasound. Anyone else have a delay to diagnosis?

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Profile picture for dlgbb @dlgbb

@tdfraze I did not have any tingling in my extremities, but did have some tingling in the groin area. I had 25 external pelvic radiation treatments. It is very normal to feel weak and tired - it took weeks for that to get better, and I still do not have all of my energy back yet. My biggest issue has been radiation enteritis/proctitis. The symptoms still come and go and are easily triggered, especially with alcohol. I had 1/2 a glass of wine a few weeks ago, and it set me right back to how I felt during treatment. I think I will abstain for about 6 months before I try again. I also just had some scanning done because of swelling on my left pelvic side. My family doctor suspected a surgical hernia, and my radiation oncologist suspected lymphedema. It turned out to be non-specific trace of free fluid. I am not sure if anything will need to be done about it or not, as I am waiting for another abdominal ultrasound and a colonoscopy. One thing I will say is that with every test, my anxiety goes up, but it is really important to keep going, have fun every day, and try not to worry.

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I dont drink alcohol, and I had 28 days radiation. I had severe blood clot damage in left leg, and that swelling weakness is very bad, but I think it's from the damage.
I haven't had my first scans yet. That will be Aug. 8th. Heard a lot about contrast they use if sugar based is not good for cancer. That makes me nervous as well, but I'm on many suppliments that fight cancer, help immune as well. I really want immunotherapy, read it's very effective on endometrial cancer, but I did not want chemo, and they won't give it at my cancer center without it. So , I looked into immune suppliments etc

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Profile picture for alohman08 @alohman08

Not in my case .. my uterine cancer was diagnosed bc of a funky Pap smear that led to a culposcopy , biopsy of cervix and uterus .. it was caught early but aggressive and high rate of recurrence! Continue to have routine Pap smears !! After age 65

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I agree, not to be on top of it, and preventative stage 1. Read on this site about those who Dr's dudvghst with, only gave hysterectomy and it camw back less then year, reoccurrence. Went to couple other areas, I think brain, and she was active on here, people tried checking on her, no response. I can't get that out of my mind, and to stay on the offense no matter what advisors say about caught early after reading that. The poor lady was very upset that she felt her cancer was not looked at as serious situation. Idk, but I felt so badly reading the thread. I pray she's OK, but she never responded after like 5-6 months later. I dont wanna live in fear, but I do wanna be wise, and looking out to stay on top of it all, not just take it lightly for sure. You can't always believe or know just 1 opinion

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Profile picture for tdfraze @tdfraze

I dont drink alcohol, and I had 28 days radiation. I had severe blood clot damage in left leg, and that swelling weakness is very bad, but I think it's from the damage.
I haven't had my first scans yet. That will be Aug. 8th. Heard a lot about contrast they use if sugar based is not good for cancer. That makes me nervous as well, but I'm on many suppliments that fight cancer, help immune as well. I really want immunotherapy, read it's very effective on endometrial cancer, but I did not want chemo, and they won't give it at my cancer center without it. So , I looked into immune suppliments etc

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The immune supplements sound like a very smart choice. it sounds like you have done your research! I was not offered chemo or immunotherapy. I have a POLE mutation, which is a very favourable thing to have! In many cases no further treatment is provided beyond the surgery. I did the radiation as a precaution, as the lymphovascular space invasion was substantial. I would rather be safe than sorry.

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Profile picture for alohman08 @alohman08

Not in my case .. my uterine cancer was diagnosed bc of a funky Pap smear that led to a culposcopy , biopsy of cervix and uterus .. it was caught early but aggressive and high rate of recurrence! Continue to have routine Pap smears !! After age 65

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what type of cancer do you have? was it contained to your uterus or do you have cervical cancer as well.
i have never come across someone who has endometrial cancer that has spread beyond the uterus that is considered early stage cancer. typically a spread to the cervix is stage II.

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Profile picture for dlgbb @dlgbb

I think it is so easy to look backwards and see signs that we didn’t notice at the time, or assumed were something else. Do not beat yourself up over it. I had signs that I probably should have picked up on and rationalized as something else, and didn’t get checked until spotting began. I am 3 months post radiation and 6 months post surgery now after grade 3 endometrial cancer, and finally starting to feel more energy. Focus on your recovery and the good days that wait for you on the other side! I am now back to biking, dancing, gardening, and preparing for my daughter’s wedding in 2 weeks! Always move forward. Best wishes to you.

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Thank you for your encouraging words.

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When I called my gyn about the bleeding she had me get a vaginal ultrasound and then saw me for an internal. She saw the spread of cancer on my cervix.

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Profile picture for NikkiWW @nikkiww7

I'm on the other side. Also ignored the signs - seemed more like spotting than bleeding and had no idea. Mine was also grade 1 and the least aggressive. Found thickening on a CT scan for my kidneys (golf-ball sized one due to come out in Sept now) - otherwise, who know how long I would have gone without finding out? Probably one of the few people happy to have a giant kidney stone.

At 30 days out from the radical hysterectomy, I now know I had a good result - it was caught so very early. I am now trying not to beat myself up about the other 2 issues (one of them long-term and irreversible) that I have to tackle. Those, I also ignored symptoms of. (caretaker/ husband died/ elderly mom with dementia still going strong). Grateful for the medical care I do have, and that I have a path forward. I am trying to learn to enjoy each day now, and trying to focus on the things I do have control of. (Lots of "trying to" in there!).

I hope this helps?

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Thank you for sharing your experience. I’m hoping for a good outcome since it’s grade 1 but of course I will deal with other treatments if needed. I had a 15 mm stone a year ago and had 3 lithotripsy treatments. Good luck with your stone.

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Profile picture for klue @klue

what type of cancer do you have? was it contained to your uterus or do you have cervical cancer as well.
i have never come across someone who has endometrial cancer that has spread beyond the uterus that is considered early stage cancer. typically a spread to the cervix is stage II.

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I was diagnosed with uterine serous carcinoma that was a tiny spot on the wall of my uterus.. had not spread anywhere no lymph nodes very early stage 1A but rare and aggressive was told high incidence of recurrence ..

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Profile picture for alohman08 @alohman08

I was diagnosed with uterine serous carcinoma that was a tiny spot on the wall of my uterus.. had not spread anywhere no lymph nodes very early stage 1A but rare and aggressive was told high incidence of recurrence ..

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you're lucky that it got picked up on a pap smear. that is a very early stage. i'm stage 1B and my pap smears were clean - zero indications.

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Yes I was very lucky because it is so aggressive that had it not been picked up as early as it was I probably wouldn't have survived. .. it has recurred twice since 2021... fortunately I am being treated with enhertu and doing well.. I feel very grateful for new drug therapies and I believe that I am in good hands at MSKCC.

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