Metastatic colon cancer on the vaginal cuff

Hi @myjiggers1
Thank so much for your post🙂
I’m so happy to know you are doing well and all is under control! I am sure God is with with you 🙏🏼💗
I am still trying to process all the information I’ve been seeing.. it’s a lot!
It’s great to know how you’ve been treating this so that when I talk to my doctor I’m not lost.
I am being treated by MD Anderson. I went for a second opinion after a poor very fixed prognosis, and the doctors there came up with different perspectives. They have a very case by case approach and they ended up suspending my chemo because I was NED and was still receiving full Folfiri course of treatment!
It’s been a year they only monitor me every 3 months.
My Cea and ct DNA raised slightly in the last months, the doctors were monitoring closely and finally the PET scan showed activity in the vaginal cuff lesion. I have a few more “nodules” that tested negative for cancer (I have a history of fibroids and endometriosis too) but they are also monitored and they are stable.
The ct DNA shows a positive below analytical range" or "low positive" category which indicates a small burden of the disease.
All that said, I still have no idea what the plan is for me. I will try to push for a gynecologist oncologist to join the team (I have a crc and peritoneal specialist now) and will ask wether resection or radiation therapy before chemo is feasible in my case.
Anyway, I’m glad I have the opportunity to have these wonderful doctors monitoring me close and I believe that early detection is the key.

Let’s see!l what they say!

Thanks again for responding. Nothing like talking to someone who’s been in a similar situation!

Greetings from Texas!💗💗💗
Stay healthy! God bless you🙏🏼

@ferrazcri
I had not heard of ctdna before! My Dr does not utilize it… I too am NED, but was prior to chemo as well. I was asymptomatic and don’t follow normal CRC patterns. Sounds like you are similar. I don’t think you would need a onc gyn if its crc unless it requires operating. Then I would want a specialist in that girly area! Even though I am NED my dr is keeping me on a lower doseage of folfiri because it had come back so quickly after the first rounds of chemo had ended. She believes that due to the type and aggressiveness we should be on lifetime treatment until it stops working or my bone marrow stops producing white blood cells. We just took a 3 month break to give my bones a break from the udenyca shot (bone marrow booster to force wbc production) due to not being able to physically move or stand for a week without excruciating pain. My son had to assist me from room to room. She was against a break chemowise, but my body said stop in the name of love! Did they run a genetics test on you to see what other treatments were available or would work? Good luck tomorrow! I have to go to my onc gyn for a check up myself tomorrow ugh. Keep me updated!
Stacy in NY (the state, not the city!)

@ferrazcri

P.S.
Here are my stats if you want to compare or if your Drs do.
Stacy R Robinson is a 48 y.o. adult history of IDA in setting of irregular menses who was also diagnosed with endometrial cancer in March 2023 s/p hysterectomy and BSO on 3/31/23 (Dr. Dubeshter), FIGO grade 1, 3 cm pT1a on observation. She was then diagnosed with stage III C cecal adenocarcinoma, pMMR in August of 2023 s/p right hemicolectomy, pT4aN2b who completed adjuvant chemotherapy in Feb of 2024. She then developed abnormal vaginal bleeding in November of 2024 and had vaginal mass biopsy which was (+) for metastatic colon cancer in setting of normal CEA and labs. CT scans showed pulmonary nodules (too small to biopsy), vaginal cuff masses and bilateral obturator adenopathy.

Aldo, the hail mary when chemo flounders for me based on the pathology of mine are Cetuximab and Panitumumab.

@myjiggers1
Hi Stacy!
The ct DNA test I do is called Signatera.
My doctors use it to make decisions about the treatment, complementing scans, and other exams.
They paused my chemo based on my ctDNA that remained negative several months. They use it during and after treatments/ surgeries to lead their decisions.
The flag raised as soon as it became positive below range (0.06-0.09) which is very low, but positive for cancer cells in the bloodstream.
I understand. They will probably want to put me back on chemo, at least until the ct DNA becomes negative again. This is my guess.
I’m sorry to hear about your pain and I’m glad they gave you a break! 🙏🏼💗 Been there girl. I had leukopenia while on Folfox (my first treatment was Folfox and the second time Folfiri ) and needed the injections too…
As for other treatments, my doctor has mentioned Cetuximab in the past. I am also a good candidate for rebuking. Not sure what they will do now.
Thank you for sharing your doctor notes 💗
I saw your diagnoses and I thought it was interesting that I have a history of endometriosis, which is not the same than endometrial cancer, but you know, it’s a disease from the same nature. My gynecologist said endometrial cancer behaves like crc. Our bodies are so complicated.
Thank you again for reading my comments!
Sincerely,
Cristina
💗

PS: when my ct dna started rising, my doctor said we could try a mrd (minimal residual disease) clinical trial. These are for patients like us who may have microscopic disease remaining in their bodies.

@ferrazcri
I am going to being these up in my next appointment on the 10th and see what they say. In NY we have amazing insurance for people with lower income or disabilities and so far my treatments have cost me nothing but they won’t always cover tests like PET scans or things not on their approved lists. That could be why. But its worth looking into. We are our best advocates! ❤️

@myjiggers1
Stacy,
I found this, idk if it helps

“ JUNE 4, 2025
Natera Announces Medicare Coverage for Signatera™ Genome
Broad coverage, inclusive of all previously covered Signatera indications
AUSTIN, Texas–(BUSINESS WIRE)– Natera, Inc. (NASDAQ: NTRA), a global leader in cell-free DNA and precision medicine, today announced that its genome-based Signatera MRD assay is now covered by Medicare under LCD L38779.
This coverage decision applies to Medicare beneficiaries with colorectal cancer, breast cancer, bladder cancer, ovarian cancer, lung cancer, and pan-cancer immunotherapy monitoring, mirroring the pre-existing coverage for Signatera.
The coverage determination was supported by robust evidence on the validity of the genome-based assay, leveraging the extensive body of literature validating Signatera in over 100 published clinical studies.”
Hugs!🤗
Good luck in your appointment!🍀💗

@ferrazcri
Thank you! 🙏 You’re a doll! I will mention this to my team! Good luck with your next steps! Whichever way you go I hope its successful. I am so glad to have heard from you. I felt very lonely out here being the only cuff girl! Not that its wished on anyone! Ugh…. Bless you on your journey Cristina!

Stacy

@myjiggers1
Me too! Now I have another cuff girl to talk to! 💕💕🤩
Thank you!