After your diagnosis of uterine cancer, how was your experience with the healthcare system?

[Kathy_SHARE]

I was diagnosed in 2015 with Stage 1A, serous endometrial cancer. My gynecologist made the diagnosis after a suspected diagnosis of endometrial polyps. She performed a D&C with biopsy and made the diagnosis. Fortunately, she was on staff at a highly ranked university medical center and was able to arrange an appointment for me with an oncologist within a few days. Within 2 weeks of my diagnosis, I had a robotic assisted hysterectomy with removal of tubes, ovaries and multiple lymph nodes. When the pathology report came back, I was diagnosed with Stage 1A, which was confined to the uterus. However, since it showed serous features, my oncologist recommended chemo and brachytherapy. Not what I was expecting, but I wanted to hit this thing with everything available to reduce my chances of recurrence.

I know there are women who have been diagnosed with uterine cancer and, sadly, have not been as fortunate in their experience with the health care system. I was lucky to have a team of physicians from my gynecologist, who I truly believe saved my life, to my oncologist, radiation oncologist and others who provided me with the best care I could have imagined. My treatment plan was seamless, was shared with me, all my questions were answered. I received chemo/brachytherapy over a 3 month period and CT scans at regular intervals over about 3 years.

At this point I see a gynecologist for regular annual visits and have been cancer free for nearly 8 years.

I am grateful every day.

[SariKexp]

In terms of my diagnosis and healthcare experience, my experiences with the system and my care team were nothing but positive, even though the diagnosis itself (Stage IIIC) was a wallop like I've never felt. What my doctors had hoped were fibroids or cysts ended up being a 12 cm tumor that had already metastasized to my lymph nodes. This all happened last fall, and I received expeditious and caring treatment at every step. I'm now NED and just started immunotherapy. My oncologist and I are full partners, and every nurse and MA at my hospital are angels on earth. The only treatment-related setbacks were having a couple of delayed chemo cycles due to neutropenia. I did not expect that and did not take it well the first time they sent me home (felt like I had failed a high school math test or something.) 🙃 I have a background in cancer research and have worked in health systems, which helped tremendously.

[Kibb Ambassador]

I started working full time in January so I am a bit behind with my reading. I hope my experience helps someone.

By the time brachytherapy started, I had already figured out the best way to get through it was to learn to completely relax in a brightly lit room with 2 or 3 semi-strangers poking around. Luckily, I was a master at self-pleasuring and I had been doing mindfulness sessions throughout chemo and radiation. My care team was “impressed” at how smoothly my 3 sessions went. I do advise the regular use of a vaginal dialator as soon as you are cleared to use one if you have any concerns about brachytherapy because it will help you get used to the insertion of an unnatural object.

The worst part of radiation therapy was drinking so much water beforehand and hoping I didn’t have an accident while waiting for the treatment to start. Then laying I an overly full bladder during each session. Had I been working at the time, leaving work every day for 5 weeks would have been stressful.

[Kibb Ambassador in reply to Kibb]

I forgot to mention that you should ask for a lubricant to be applied to the appliance, not lidocaine or something similar. Just on a whim I asked what they were using the first time. They said, ‘A pain killer - lidocaine.’ I asked them nicely to remove it. Lidocaine temporarily deadens nerves but it is also a constrictor. Constriction of your vaginal wall is the last thing you want happening before the insertion of an appliance. I suggest you bring your own lubricant. Lay back, relax, and enjoy the ride!