Gynecologic cancers: What do you wish you had known?

@janthetravlr Welcome. What a shock that must have been to notice that lesion that suddenly appeared. I'm very careful about what I say about my cancer diagnosis and recurrence (2019 and 2021 respectively). When I was in the middle of all of it I just felt I did not want to answer questions about why I had uterine cancer, what the doctors told me, or anything like that. It was just too traumatic for me. I know this is how one gets support but I also think it's important to pick these people carefully so that you do get the support you need.

What sorts of questions do people ask?

@kate14 I so agree with you. I continued to get pelvic exams after menopause and I've talked with my nurse practitioner who does my cancer surveillance exams. She agrees with me on this.

Got pet scan result this am. No call yet from doctor. Invasive vulvar cancer but no evidence of metastasis. Sounds more hopeful.

Post treatment: For me it was all about the goal of feeling “normal” and regaining stamina. Still day by day; often I fake the “normal” part. In the long term, there might be side effects from treatments, whether sooner or later. For me, some were unknown possibilities. Dr. Google has helped me to know that what I was dealing with wasn’t just random, but more than likely connected to my treatments.
This lack of communication and follow through is a failure of our medical system Psychologically, I live with fear of recurrence and scanxiety, while simultaneously being happy to still be walking this earth. It’s a roller coaster ride.

@janthetravlr @kate14. The prospect of what might happen to my body is and was way worse than what actually did happen. So, yes, I agree that with a clinic and surgeon that are both well respected and especially a surgeon with lots of experience in doing this procedure you can hopefully go forward.

Please keep writing here. There is so much experience and wisdom in our support group.

How are feeling today?

@kate14 This is good news regarding the PET scan. Thank you for sharing.

@naturegirl5
I am tired of the very slow healing and the need to use a donut wherever I go, including driving my car. I certainly don't need infection to add to my problems. For all of us, this is a physical and a psychological problem. It takes time and, hopefully, acceptance. I'm not there yet.

@kate14 unconscionable that these exams aren't routine. I'm glad you have good care.

Waiting for the results of my latest pap test that took place over a week ago. Even though I am 72 years old, I have requested a pap test every year when I have my annual gyn exam because one time the results came back abnormal. I also am waiting for the results of my follow-up pelvic MRI from earlier this week to see if my endometrium is stable or getting thicker. A diagnosis at this point is still up in the air because both an endometrial biopsy and D and C 6 months ago failed to get a sample due to extreme atrophy. The waiting game is just so nerve-wracking and I wish I had gone to a gynecologic oncologist sooner (it was difficult to get an appointment without a diagnosis of gyn cancer- but I haven't been able to get a definitive diagnosis)! She suggested an ultrasound-guided D and C as the next step if the MRI results are not favorable and i wish I had known about this option months ago!

@sle3364 I want to say that you are an excellent advocate for yourself and in turn for every woman in such situtions. Keep pushing for yourself to get the answers you need.

Are you experiencing any symptoms or pain?