Post-treatment follow up for clear cell endometrial cancer

Posted by ffr @ffr, Mar 16 12:44pm

Just wondering how your oncologists are monitoring you for recurrence of an aggressive cancer . I am two+ years post treatment with surgery, chemo, radiation & brachytherapy. I had metastasis to local & distant lymph nodes during chemo so I’m deemed chemo resistant.
-How often do you see your oncologist?
-Do you get CT scans & if so how often?
Is there concern for radiation overload?
-Is anybody using liquid biopsies? A blood test seems like a great way to monitor for cancer cells but my oncologist is not a fan.
I’m always worried about recurrence, so your experiences might be helpful.

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

@ffr

Thank you!!!
I will pursue these suggestions so that I am more aware. 👍

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Has your doctor ordered the blood test for the Human Epididymis Protein 4 (HE4)? It is just a clue and does not provide a 100% diagnosis.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8507549/#sec9-cancers-13-04764
I am not sure if this blood marker is used as a monitoring protocol or just used pre-treatment. Something you might ask your doctor. Are you doing anything to combat inflammation which is a driver of cancer? Best of luck to you, dealing with all of this daily is a head trip no one would willingly sign up for!

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@beebe

Has your doctor ordered the blood test for the Human Epididymis Protein 4 (HE4)? It is just a clue and does not provide a 100% diagnosis.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8507549/#sec9-cancers-13-04764
I am not sure if this blood marker is used as a monitoring protocol or just used pre-treatment. Something you might ask your doctor. Are you doing anything to combat inflammation which is a driver of cancer? Best of luck to you, dealing with all of this daily is a head trip no one would willingly sign up for!

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Thank you for this information. I never heard of HE4 and it’s certainly not on my lab scripts. Sounds like I have more “cancer homework” to do.
Re inflammation: improving my diet has been somewhat successful.
The cancer journey is indeed not a trip I would have self-selected, but it has reinforced the knowledge that women come to each other’s aid with grace and support.

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@val64

When my endometrial cancer recurred, I talked my oncologist into letting me get the Foundation Medicine liquid biopsy, because I was hoping to see if the new tumors had the same mutation profile as the initial tumor. I didn't manage to talk him into it until the day of my first chemo treatment, so I didn't actually get the blood drawn until right before the second chemo treatment. This test did not detect any of my tumor mutations AT ALL. When I had a CT scan after the third cycle, the tumors had only shrunk marginally, so it wasn't because the chemo had killed everything. I'm a molecular biologist, so I got Foundation Medicine to send me the raw sequence data, and there really was absolutely zero sign of my tumor in the data. So my personal experience is that liquid biopsies are not sensitive enough to be good for anything. But some tumors seem to shed more DNA than others.

Also, the people in the pancreatic cancer forum on this site have experience with the Signatera liquid biopsy, which should be more sensitive than FM. They seem to think that the Signatera test comes up positive well after their CA19-9 starts rising. So even that doesn't really live up to the hype.

Do you know if you have high CA125 when you cancer is present? Mine is only somewhat high, but I'm still finding the test very useful at gauging whether the clinical trials that I've been on are working. But my oncologist never would have ordered it himself. I asked for it. If I ever get to NED status, I'm going to try to get frequent CA125 tests.

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Signatera didn’t detect my anal cancer, before it was seen on mri, & was in lymph nodes & surrounding structures. I’ve been having scans every 3 months since 2021.

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Thank you for sharing your experience with Signatera and your scan schedule.
I wish you well.

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I was diagnosed with mainly serous cell endometrial cancer--the pathology report also noted possible clear cell but inconclusive from the slides. Stage is III3C1, but possibly C2 or even stage IV by now. My next CT scan should determine the stage. The surgeon wasn't able to remove all of the cancer during the radical hysterectomy, and likely for that reason the cancer spread to inguinal lymph and para-aortal right node, and a new tumor on left side of vaginal vault.
I had originally been given Paclitaxel/caborplatin (6 cycles). No radiation was given because I'd already received my limit back in 2012 for anal cancer.
After the six cycles CA-125 returned to normal but CA15-3 and CA19-9 continued to rise. Cancer began to spread and metastasize about 4-6 months after treatment ended. From this I conclude that I am platinum resistant.
Now I've started Enertu through a clinical study. This is a targeted therapy using the conjugate of fam-trastuzumab and deruxtecan-nxki (https://www.drugs.com/medical-answers/enhertu-chemotherapy-drug-enhertu-3549496/). It's had remarkable effects on HER2 receptor on cancer cells, and originally tested on breast cancer with up to 70% success on certain hormone types (HER2 positive, HER2 negative, etc (read the details in the link I provided)
Under strict monitoring, I receive CT scans every third cycle (every 9 weeks). Blood draws are taken frequently to see how the drug is affecting hematology and chemistry panels. The study doctor doesn't necessary place a great of weight on the cancer antigens (CA) without CT results to verify.
Hope this helps answer some of questions.

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Thank you for sharing and including these details. I am not HER-anything.
I was in the Ruby study for Keytruda when I was getting chemo, but got kicked out because I had metastasis before the last infusion. Still unsure if I was getting the drug or placebo. Either way, the results were mixed, with no benefit for my particular EC. I hope that Enertu will bring the desired results for you. Participating in a clinical trial is hope for us and a good deed for the women who are diagnosed after us.

Thank you to all who have responded to my post.

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@ffr

Thank you for sharing your knowledge and viewpoints.
Though I’ve been NED these past 2+ years, I know enough about the aggressive nature of my CCC to know that another recurrence is more than likely and that there isn’t really anything out there for me.
The 3 month CT scans were reassuring in a way and I’m having trouble with doubling that time frame. It’s something I will have to learn to live with.
And I guess I misunderstood Signatera because I thought that it would pick up the presence of cancer cells in the blood even before a scan would find something.
I’m always learning.
Here’s to better detection and treatments. (And a cure!!)

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The reduction in surveillance is because recurrance is highest in the first 2 years. The reduction of surveillance is what research says is most effective. But the problem with clear cell and serous is that they are rare and not studied. I will be very nervous about the reduction.
I'm another topic but one I am interested in is lifestyle approach to cancer prevention. You haven't had a recurrance and for me is so hopeful. I want to know more about what you are doing to stay healthy and cancer free. Do or have you made lifestyle changes such as diet complementary therapies, exercise?

I kind of dispute to find a path forward.

Denise

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You are right about clear cell and serous being understudied and it is because of the aggressive nature of my cancer that I posted about the after-care plan in the first place. Do I think that my lifestyle has much to do with cancer recurrence? Having had metastasis while undergoing treatment, it’s highly debatable.
I have not really changed my lifestyle. I am not a beef or pork eater and I fight my sweet tooth daily. Exercise is random and not particularly intensive. (Pelvic radiation has further ruined my osteoporotic bones.)
Alchohol consumption is rare.
This is the same lifestyle that I had before diagnosis.
I wish I could share something more positive with you and I wish that a cure for cancer would have already been found.

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@ffr

You are right about clear cell and serous being understudied and it is because of the aggressive nature of my cancer that I posted about the after-care plan in the first place. Do I think that my lifestyle has much to do with cancer recurrence? Having had metastasis while undergoing treatment, it’s highly debatable.
I have not really changed my lifestyle. I am not a beef or pork eater and I fight my sweet tooth daily. Exercise is random and not particularly intensive. (Pelvic radiation has further ruined my osteoporotic bones.)
Alchohol consumption is rare.
This is the same lifestyle that I had before diagnosis.
I wish I could share something more positive with you and I wish that a cure for cancer would have already been found.

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It's all information. We all have to come up with a path to live with the knowledge that recurrance is probable

Denise

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