Has anyone had a recurrance of endometrial cancer to lung?

Posted by gaylepc @gaylepc, Sep 23 9:32am

had stage 1a grade 1 endometrial cancer 9 years ago. I had a full radical hysterectomy, and the Dr.s felt there was virtually no chance it would return. No chemo or radiation was suggested or offered. Nine years later I started to cough blood and after loads of tests, it has been determined that I have an endometrail tumor in my lung. It is not operable due to the position it is in, so they are looking at radiation, if my lungs can take it ( I have moderate emphysema), and chemo. I have been told it is not curable but treatable, and the impression I have at this point from every Dr. that is involved is that I likely have years to live, but will always be a cancer patient.

Is there anyone here who has been through this, or is livin with a similar diagnosis? I am scared, sad, and angry all at the same time. This was not supposed to come back.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Helen, Volunteer Mentor | @naturegirl5 | Nov 11 5:36pm

I looked up the Signatera test. Here is what I found for uterine cancer. There are more studies for colorectal cancer but this is the one description and study I found for uterine cancer . I want to add a caution to the study. Most of the authors are employed by the company (Natera) that manufactures the Signatera test. That is considered to be a very serious bias in the science world so we should not accept these results as valid. We will need to wait for an unbiased study that is not funded by or has anyone associated with Natera involved in the study.

Endometrial Cancer Recurrence Blood Test:

-- https://www.femtechworld.co.uk/news/study-validates-endometrial-cancer-recurrence-blood-test/

Study on post surgical ctDNA molecular residual disease detection:

-- https://www.sciencedirect.com/science/article/pii/S0090825823016311

riverland889 | @riverland889 | Nov 12 6:44am

Responding to naturegirl,

Yes, saw radiologist on Oct 21; advised strongly against further radiation bc of possible damage to bladder, rectum; so now I am on immunotherapy. Had one treatment so far, a week ago, and ok to date. I just hope it works. Will be followed up with monthly Signatera tests.

jeanadair123 | @jeanadair123 | Nov 12 11:19am

In reply to @riverland889 "I had endometrial cancer and radical hysterectomy 4 years ago; no radiation or chemo; then last..." + (show)

I had exactly the same thing happen to me. I was hoping that the last radiation and brachytherapy would be it, now I wonder seeing the comments. Did they say where it might recur? Damn it’s so hard being on this journey just when you think it’s okay. Let me know how you are and good luck. 😍

riverland889 | @riverland889 | Nov 12 3:06pm

In reply to @jeanadair123 "I had exactly the same thing happen to me. I was hoping that the last radiation..." + (show)

Thank you!! I am doing fine, thank goodness, but I am now taking it day by day. I'm not going to worry because if the immunotherapy just keeps it from spreading, then that's a good result for me. Mine recurred in the vaginal cuff which is where it surfaced March 2023. (Hystero was Aug 2020 and Dr created the cuff at that time). So it came back in the same spot. I think it was never fully gone from the radiation; probably just a few cells left, so it didn't show on the post-radiation Signatera tests. But now it is bigger, thus the positive Signatera.

jeanadair123 | @jeanadair123 | Nov 12 3:42pm

In reply to @riverland889 "Thank you!! I am doing fine, thank goodness, but I am now taking it day by..." + (show)

I had my hysterectomy for uterus cancer in 2009 and it recurred in 2017. We moved back to California from. NEw Mexico in 2013 I saw 4 drs before I finally saw one that would use a speculum. Their response was there is only a 1% chance of recurrence. That’s fine as long as you’re not in the 1%. How did they know yours returned?

riverland889 | @riverland889 | Nov 12 3:58pm

In reply to @jeanadair123 "I had my hysterectomy for uterus cancer in 2009 and it recurred in 2017. We moved..." + (show)

I noticed a clear discharge that was getting worse and I didn't know what was causing it, so Dr did a pelvic and saw some tissue that didn't look right. She biopsied it and voila ... this was last year.

jeanadair123 | @jeanadair123 | Nov 12 4:23pm

In reply to @riverland889 "I noticed a clear discharge that was getting worse and I didn't know what was causing..." + (show)

I had my radiation and brachytherapy at Stanford but I had severe rectal bleeding, hopefully the radiation got rid of any cancer? One can but hope we just have to be proactive, I see my gynecologist every year and my gynecologist every year so every 6 months I see someone. Thanks for letting me know it’s always nice to know of systems that might appear in the future.

Helen, Volunteer Mentor | @naturegirl5 | Nov 12 5:03pm

In reply to @riverland889 "Responding to naturegirl, Yes, saw radiologist on Oct 21; advised strongly against further radiation bc of..." + (show)

@riverland889 Thank you for letting me know. This sounds like a good plan. How are you feeling with the first dose of immunotherapy?

riverland889 | @riverland889 | Nov 12 8:42pm

In reply to @naturegirl5 "@riverland889 Thank you for letting me know. This sounds like a good plan. How are you..." + (show)

Normal, first night I had a temperature of 99.5 but fine next day. I always get a low fever after injections, though

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