Connect
← Return to Recurrence of gynecological cancer
Discussion
Recurrence of gynecological cancer
Gynecologic Cancers | Last Active: Aug 8, 2023 | Replies (32)Comment receiving replies
My gyn-oncologist told me there was a 95% survival rate for my diagnosis over 5 years. I took that to mean the chances of recurrence was 5% or less - not the same as survival, I know. She also told me that if I had a recurrence it would most likely be within the first few years and would be found in the vaginal cuff on physical exam. This was in answer to my question of what would follow-up be like. Would I have regular scans? No, no scans on those initial follow-up exams. After the recurrence in 2021 I have a physical exam with a speculum and CT scan.
I cannot figure out why an oncologist (or gyn-oncologist?) would not do a physical exam with a speculum. It's so good that you were persistent with your request.
Like you I purchased different dilators than what I was given at Mayo after I finished radiation therapy. I use dilators that are soft and have a more natural feel to them. I have also used a few different lubricants and gels until I found one I liked. I use it two times a week and have "graduated" to a larger one over time. So I guess what I'm doing is working.
How are you doing overall, @jeanadair123? How are you feeling?
I hope this helps other women who read this. We absolutely must advocate for ourselves. Because no one else will do it for us.
Replies to "@jeanadair123 My gyn-oncologist told me there was a 95% survival rate for my diagnosis over 5..."
Hello,
I just found your Connect group, and you all are so helpful and full of wisdom!
I was diagnosed with endometriod adenocarcinom grade 1 2b
in April 2023, after postmenopausal bleeding, an ultrasound showing excessively thickened
endometrium, and a polyp (1.7cm) along the right posterior lateral junction of the lower uterine segment and cervix; and the biopsy of endometrium.
Freaked out.....not in my plans now or ever.
I'm in the Houston area, so I found a gynecological oncologist at MD Anderson the next week.
She said what all of you have said: if you're going to have cancer, this is a "good" one to have , because of early symptoms of bleeding.
Had my Robotic assisted total hysterectomy and bilateral salpingo-oopherectomy on May 17, 2023.
Healed for 6 weeks, and my Dr. said she wanted me to have 5 HDR vaginal radiation brachytherapy treatments. I had 1 treatment daily for 5 days. It was prophylactic; specifically targeted to the top of the uterine cuff, where cancer would possibly reoccur, if it would happen. I was a little tired after the treatments, but it didn't last to long. I will say, I enjoyed my nap times.
And then.....the dilator!
I hate it, but I do it 3 days a week for 15minutes. Last wednesday, I got my first UTI. I've never had one before. I think I was using the wrong soap to clean my "tool".
A few questions: I have asked my oncologist if I will have a CT scan at my 3 month checkup in September. She said, No, it's not protocol for your type of cancer. Which, they all say it is totally gone after the surgery and radiation.
But really, how do they really know. And I have read stories about recurrence.
So that worries me.
Right now, I'm still at the beginning of my journey, and hopefully it will be a good one with not too many bad hiccups. Thank you all for your wonderful information!
Connect
Overall very good. 😁 I do get occasion pains in my vaginal area and butt area but I am sure it is from the radiation. The radiation in my rectum caused severe bleeding and pain, it was really bad I used to scream when I had a BM.
Stanford gave me creams that didn’t help it wasn’t until I went to my urologist that he recommended nifedipine what a life saver, all those months of pain and I could have been using this.
The pain lasted almost for 2 years but got better as the months progressed. Now I am back to normal what a relief. Since I will be at my recurrence 5 years in March the doctors feel I only need a CT every year but a lot can happen in a year not sure how I feel about that having also had breast cancer.
I did have an MRI of my pelvis last year and a CT but the one thing I noticed later but forgot was that Stanford used a gel in ones vagina at the time of the MRI.
Can I asked what dilator you use now and what gel. All in all I am good. My gynecologist oncologist said my last visit with her will be March but I have a fabulous gynecologist who explains everything as she examines you so I shall continue to see her every 6 months. I find the worst thing is following up on everything and being so proactive it’s exhausting, plus my husband has had 3 cancers also, all of which we seem to have come through okay.
Have a nice day.