Post-treatment follow up for clear cell endometrial cancer
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.
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!
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.
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.
Thank you for sharing your experience with Signatera and your scan schedule.
I wish you well.
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.
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.
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
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.
It's all information. We all have to come up with a path to live with the knowledge that recurrance is probable
Denise