Reacurrance of vaginal cuff cancer

Jeannie123 said:

Cuff

can I ask you where you had your surgery?

Yes, my cancer started in my appendix - you can read my story if you click on my name.  It was spewed throughout my belly.  

My colorectal surgeon, who performed my prior surgeries for my appendix cancer, did my surgery, accompanied by a Plastic Surgeon and a Urologist (the tumor was entangling one of my ureters.)  Now I'm on watch and wait for my next recurrence, which we now know will just keep happening.  It was 9 years before my first recurrence.

Jeannie123 said:

Thanks

mine was 8 years. I went to three gyn oncologists until I found someone who would use a Speculum For some reason they figure that if your cancer has not come back in a couple of years you are low risk.  It's so hard to be proactive all the time? I had a breast biopsy they missed that the first time and it was cancer. Sounds like you have a good team behind you?

With Appendix Cancer as Primary, we all knew from Day 1 that recurrences occur up to 20 years later, so they were pretty sure I would be monitored for life. That said, my dr commented just before my 2016 recurrence was found (and I was on 18 month scans) that he figured one more scan, and then he'd discharge me from follow-up (at 10 years cancer-free) as he'd never seen anyone with my tumor type have a recurrence at this point.  And then he got back the results of my 9 year scan...  Now it's scans for life.  If I can be of help, PM me and I'll send you my email.  

Alice

Hi Jeannie:

I have several soft tissue masses.  I know have one that is attached to my vaginal cuff.   They are unable to determine what it is although it did have irregulr borders.   I did have a recent rectal EUS and they did a biopsy, but the biopsy was in the perirectal region and I don't think it was at the cuff.   I most recently had a PAP smear and am still waiting for the results.  I meet with my oncologist regarding the EUS results on Thursday.  I will let you know.

Kathy

Two months after my total hysterectomy, I grew 34cm of new tumors in multiple locations. 
I had a 5.1cm tumor on my vaginal cuff/outer rectum. This is a frequent site of metastasis as
this is where the surgeon makes the vaginal cut. Lots of loose cancer cells floating
around. This happened before I even began my initial chemotherapy. I had no radiation.

I also was put on the drug metformin after 2 chemo infusions by my integrative oncologist. Within 6
months, I was completely cancer-free. The 5.1cm tumor on the vaginal cuff took the longest to go
away, along with a lesion on my spleen. I only had a total of 6 chemo infusions and have remained
cancer free. It is over 3 years now.

A couple questions.  What grade is your cancer?  You mention you are Stage 1? I think the grade matters
more as it tells you how fast the cancer is growing.  You are more at risk for a recurrence if you are a
high grade (I was Grade 3). 

I would suggest you do genomic profiling through Foundation One on your original tumor.  Your surgeon
can send it in to them.  It will tell you what is driving your cancer. Something makes your body grow cancer
and you need to determine what that is.  The results of your gene mutations will give you more information
to make an informed decision.  It took about two weeks for me to get the results.

Doctors always say they got everything.  My doctor said the same thing to me. Doctors never know
if they got everything because cancer cells are invisible. When you get cut open, you release more 
cancer cells into your system and if your body is still a fertile ground to grow cancer, it will. I 
grew more cancer after surgery than before surgery.  But everyone has to make their own decisions.

Takingcontrol58