Recurrence of gynecological cancer

I had exactly the exactly the same but stage 2. Doctor told me there was a 1% chance of recurrence. Is there such a thing when you are in the 1% group? Might as well be 100%.
I had robotic surgery same 2009 recurrence in 2017.
Never thought for a minute it would come back. I went to Sacramento, Stanford and the Mayo Clinic and decided to get my treatment at Stanford being the best treatment and location for me.
In March It will be 5 years. I had the original radiation at Stanford and was told normally if the cancer would recur it would be within 2 years. Things I have learned make sure you get a good gynecologist oncologist one who will listen. I had my original surgery in Texas, 5 years later we moved to California. Needing a new gyno oncologist I did my research, I went to three oncologist after the initial surgery none of these drs used a speculum, I just kept changing drs until one did and she even said that she doesn’t normally use a speculum but would, she was the fourth dr who found it. Had I not been so persistent, who knows where I would be today.
I am still using my dilator which I hope you are? I am now only using it 2 days a week which is great after everyday. I did get a couple of UTI’s at the beginning and one doctor said to try getting a shower before I used it that has helped no uti since. I also purchased different dilators the ones issues at Stanford were basic and very hard.I also used several gels before I found a good one.
Hope this helps. Just know you are not alone, through different groups I have found that a lot of women have had recurrence so maybe someone needs to adjust the stats for recurrence form 1%. Good luck. ,message me anytime if you have questions?

@jeanadair123

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.

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.

@jeanadair123 I'm so glad to know you are doing well. You do have a fabulous gynecologist. It's wonderful that she explains and educates during examination and does not rush you through your appointments. I agree that it's practically a full-time job just to follow through and keep up on appointments, and the exercises and rehab at home we are supposed to do. I keep saying I need an Excel sheet to keep myself organized but I haven't designed one yet. Hmm. That's a task for this week, I think.

My husband is having prostate symptoms and is in the process of evaluation. We don't know at this point if this is a benign enlarged prostate or prostate cancer. He will have an MRI in December and then meet with his medical provider for more recommendations. I'm happy to hear that your husband's cancers were successfully treated and that he is doing well.

I ordered my silicone vaginal dilators from Soul Source. They come in pretty colors too! I like this website as it has all kinds of information, resources, and products. I use a water-based gel (recommended water-based for these) for the vaginal dilators since I find that this works better for me than the lubricants. For now I'm using a generic KY gel that seems to be OK.

-- https://www.soulsource.com/collections

Happy Holidays to you

I had a total hysterectomy in Jan 2022 and staged at 1a. No treatment, just follow ups every 3 months. Follow ups are quick exams, no scans. I jus had a follow up June 1 all clear. 2 weeks later I started bleeding. CT scan showed mass in pelvis and 2 pelvic lymph nodes. It's 6 weeks since my 'all clear' exam and I'm starting chemo next week. My head is spinning. How did this happen so quickly? Was something missed at the check up? I feel like I need to be better prepared this time around but I don't know what I should be asking for or advocating for to make sure I'm getting the right treatment.

I was Stage 1C 2020. I had surgery and 6 rounds of CarboPlatin and Taxol. I had CA125 tests every year. In 2011 my CA125 went to 20 and they did a CAT Scan and I had a tumor on my ascending colon. I had surgery and started chemo again but went into anaphylactic s hock on 3rd chemo. They stopped chemo. In 2015 I had a recurrence, surgery and chemo with gemcitabine. I always had a yearly CA125 and PET Scan since then. I haven't had any recurrences since then. Did you do a yearly CA125? What is your CA125 now?
Did they do a hysterectomy where they took your omentum and peritoneum?
Physicals never found my cancer. It always took a PET or CAT scan.

Sorry, I was Stage 1c in 2000, not 2020.

@cialonel I so understand why your head is spinning. That’s how I felt when my nurse practitioner called to tell me that the biopsy on the little growth she found on my vaginal cuff was a recurrence of endometrial cancer. After my radical hysterectomy in 2019 I asked the GYNOncologist about follow-up exams and what these would include. She said I would return every 6 months for a pelvic exam. I asked about CT scans and she told me that recurrence of my cancer (endometrioid adenocarcinoma, Grade 1, Stage 1a) most commonly shows up at the vaginal cuff and a CT scan wasn’t called for unless something showed up on the physical exam. And for me, that’s exactly what happened.

If I had the “all clear” exam that you did and a few weeks later developed bleeding, I’d be asking myself the same questions that you are. What was missed? Was there nothing that showed up on the physical exam? Did your doctor tell you that this is a recurrence of the cancer you were diagnosed with last year? I too wondered if something was missed by pathology when my specimen was examined after my hysterectomy. But wondering and worrying about that did not help me handle my present situation other than cause more anxiety and worry. So, I decided to write my questions as they occurred to me, organize my list, and ask those questions when I saw my doctor. Did I advocate for myself? Yes, I think I did the best I could at the time. I also realized that my nurse practitioner advocated for me by consulting with the GYNOncologists in her department and that it was this collaborative model that offered me more confidence as I went into treatment (radiation therapy) for the recurrence.

Have you started a binder with all of your medical information related to the cancer? Will you start writing questions for your doctors and add these to your binder with their answers?

2 national sites to get more info on Ovarian Cancer are:
Ocrahope and Clearity Foundation. I am in Colorado and part of the Colorado Ovarian Cancer Alliance. Clearity has counselors that work with you as does the Colorado Ovarian Cancer Alliance. Also, ShareCancerSupport on the east coast is good and has many resources.

Thanks.. your reply is helpful and i do need to think forward and not focus on what might have been. I actually made plans today to go out to buy a notebook for questions and a journal. I feel like I will advocate better now...lesson learned. It frustrates me that because statistically 1a doesn't require more thorough exams, and that allows others to slip through the cracks. Maybe not an expensive scan but could a CA125 blood test have hinted something was going on before I was bleeding and the cancer was in the lymphatic system? And I think about all the people who can't advocate for themselves, understand what to look for or articulate what they need. Protocols based on statistics alone that are designed to reduce costs fail those all those people. Sorry for the rant. Still trying to get on top of what I'm feeling.