Metastatic colon cancer on the vaginal cuff

@myjiggers1: so distressed to read your post and wish I had answers. If I were you I would contact the closest CancerHospital and get my local Dr to get me immediate referral for 2nd opinion on which treatment to pursue. It sounds like time is an element that requires persistence and perhaps intervention by your doc to insurance providers and Cancer Center’s scheduling. Stay hopeful!

I was stage IV colon cancer that hard spread to vagina cuff among several other areas. I was referred to the Mayo Clinic in Rochester ,MN. I am now 3+ years in remission. I am not back to normal and I may never be; but glad to be alive and getting stronger each day and staying positive. You’ve got this. Keep fighting.

@myjiggers1, I hope you saw the post from @twin71 who also has experience with colon cancer spreading to the vaginal cuff. Twin71, your 3+ years of remission gives hope!

Myjiggers, have you had further testing done to confirm if the cancer on the vaginal cuff is indeed metastatic colon cancer or a new primary cancer? How are you doing?

Hi twin71!

So glad to hear you are 3+ strong! That does give me hope! May I ask what your regimen was? They are going to hit me with radiation down there to stop the bleeding. Then Folfiri I think as chemo. They found some lymph nodes in the surrounding pelvic region affected and a part of my left abdominal wall. Was your initial colon cancer on the right side as well? Its not in my blood or bones or major organs yet so I am grateful for that. 😍 Thank you so much for reaching out!!!

Hi Colleen! Thank you so much! I don’t feel so alone in this and now know there is some hope in the outcome! They did pathology for it when we got the biopsy at my oncologist gynecologist visit when I went for the visit to see why I was bleeding and hoping it was a tear in the cuff. Then they biopsied me hoping it was the uterine. Then when we found out it was metastatic colon, sigh, we sent it out to Gardant for more testing to see if we could possibly have other cancer markers in addition to colon to see if another treatment could be a more aggressive battalion! I don’t know what the results of that are as of yet. So far we are doing radiation in the pelvic area in the location of the bleeding mass and if there are no other markers I am set to start folfiri chemo Friday after Christmas. They are moving so fast my head is spinning. Thank you for asking! I hope you have an amazing Christmas and bless you for organizing this support group. It helped get me thru the first round and hopefully the next. 🙂

I had Folfox for chemo, followed by radiation and then 2 major surgeries. Mine was central but a little on the left side as well.

Folfox is what I had first go when I had 3c… Because I didn’t tolerate the oxaliplatin well due to an allergic reaction we are gonna try folfiri. Wish me luck!!! 🍀 thank you!

Hello!
I hope you’re doing well!
I just learned from my biopsy that I have crc recurrence in my vaginal cuff (in 2024 it landed in one of my ovaries, that’s why the hysterectomy).
I’ve been googling since last night and the only report similar to mine I found was yours! It got me thinking, are we unicorns? 🙃
Well, I am talking to my doctor on Monday and I will try to stay put until then. I don’t know if I ‘ll have surgery or they will go straight to systemic therapy.
But I was wondering if I could learn something from you about your experience so that I could have an idea.
I read about brachytherapy and chemo and/or surgery. But everything is syill blurred and I am so confused .
Hopefully things will fall into place.
Thank you!!

@ferrazcri girrrrlll! I was so confused that it could even go in those places! Its very rare! We are special! Also sounds like you have chemo brain too eh? Mine is awful!!!! So…. We did radiation on that spot. 5 rounds. Scary… but super easy. It took about a couple months to clear away totally in conjunction with Folfiri. I have right sided crc which makes it aggressive and hard to treat with anything other that chemo and radiation. There is a hail mary medicine they will try when this stops working, but I am basically on a maintenance regimen now. Every 3 weeks at a lower dosage than the full on treatment. I had a partial hysterectomy in 23 due to a pre cancer from hpv. They found stage 1 uterine while doing that. When my iron levels didn’t increase we did a colonoscopy endoscopy and found the crc. Did Folfox for 12 rounds (only 3 rounds of the oxaliplatin due to allergic reaction with full body numbness and breathing problems) then 8 months later I saw bleeding. Was soooo hoping for a collapsed wall and then the onc gyn tested and we were then hoping for the uterine recurrence…. But nope! CRC. Stage 4. I have been on folfiri immediately following the results and then radiation 1 month into the symptoms. I just had my first 3 months break from chemo and still have beautiful CT scans. I am feeling optimistic. Its been since August of 2023 with the diagnosis. My Doctor says its a miracle it hasn’t gone anywhere else yet. I agree! God is on my side! I am so sorry you are going thru this all! I would love to hear more of your story and how you make out! Prayers coming your way!
Stacy

@ferrazcri
P.S.
The radiation was localized. They measured my body (so embarrassing) then tattooed (little dots) where the lasers had to go to target the exact location. Then you literally lay down in a machine and relax in your mold they made of your shape while it moves around you. No pain. No side effects. They did a PET scan to get the location of the tumor.