I have had a recurrence of endometrial cancer in the form of a polyp.

I told the doctor when I met him that I had atrophy. The cylinder did hurt at the simulation. It felt like someone put a whisk in there! I got a call on Thursday asking me to come in an hour later than I was scheduled, so I could speak to the doctor, and also because they need to redo the simulation and scans. Now I'm a nervous wreck and my treatment will be delayed another week. It's already been 8 weeks of waiting. I wasn't told I have a tumor. I had a polyp.

@dianavl I don't have a medical degree and so I don't know how the amount of radiation is calculated and how it's targeted. Like you, I had external beam radiation therapy (EBRT) and I didn't experience any effects that you did. I've heard from others here about burns from radiation.

Here is what I experienced as a patient who had a recurrence of endometrial cancer. I had EBRT for 25 sessions. When I went in for the simulation my radiation oncologist was present as was the medical physicist. My radiation oncologist told me that the work of the medical physicist is to work out those very delicate calculations needed for radiation therapy.

After the 25 sessions of EBRT I had 2 sessions of vaginal brachytherapy (VB). My radiation oncologist worked with me to determine the size of the device that was most comfortable for me and so I didn't experience pain during the VB. Again, I don't know how the radiation was calculated, only that the radiation oncologist was present during the entire procedure both times.

Before the VB, the radiation oncology nurse spent about 30 minutes with me discussing what I needed to do to lessen vaginal atrophy. She gave me dilators and lubricant and showed me how to use them.

I'm very mystified why your cancer care team did not talk with you about the use of dilators after radiation. The radiation oncology nurse told me that sometimes the scarring of the vagina after pelvic radiation and especially after VB will make it difficult for vaginal exams after radiation. I do have some scarring at the vaginal cuff from the VB and shortening of the vagina from the hysterectomy because my cervix was removed. My nurse practitioner who does my follow-up exams said that she is able to use the speculum she used prior to radiation therapy.

Anyway that's a long story of my experience.

@dianavl Having to redo the simulation and scans is just awful. Eight weeks is a long time to wait to start treatment. It's no wonder you are very anxious. When is your appointment? Will you take someone with you to your appointment when you talk with the doctor (the radiation oncologist)?

Yes, I agree about 8 weeks being a long time to wait, which will now be 9 weeks because the appointment this Tuesday 5-28, was supposed to be the start but instead, has turned into a redo. There is no one available I can bring to the appointment. My roommates husband is who is driving me, but I'm not comfortable with him being in the appointment, although we are friends as well.

I only heard about using a dilator from my current care team. My gyn is able to get a speculum in, but barely, and it's painful and I bleed after, every time. It sounds to me like you had an awesome care team.

@dianavl How long as it been since your initial radiation therapy? I'm wondering if it's possible to use a dilator at this point in time? You can ask your current team that question. Maybe it's a question to ask your gynecologist? My radiation therapy was 2 years ago and my nurse practitioner that I see for my follow-up exams asks me if I'm still using my dilator. The answer is yes although less often.

Yes, I feel fortunate that I had a good cancer care team for the initial diagnosis (and surgery) and then the recurrence. I could have done the radiation therapy for the recurrence closer to home but I live in a rural area of Michigan where I don't think the level of care for specialities is very good. I was fortunate that I have Traditional Medicare (and a supplement G) and so I could go to Mayo Clinic in Minnesota. I had to scramble financially to figure out how to live in Rochester (8 hour drive from home) for the 6 weeks of radiation therapy but I'm glad I did that.

@dianavl I don't have a medical degree and so I don't know how the amount of radiation is calculated and how it's targeted. Like you, I had external beam radiation therapy (EBRT) and I didn't experience any effects that you did. I've heard from others here about burns from radiation.

Here is what I experienced as a patient who had a recurrence of endometrial cancer. I had EBRT for 25 sessions. When I went in for the simulation my radiation oncologist was present as was the medical physicist. My radiation oncologist told me that the work of the medical physicist is to work out those very delicate calculations needed for radiation therapy.

After the 25 sessions of EBRT I had 2 sessions of vaginal brachytherapy (VB). My radiation oncologist worked with me to determine the size of the device that was most comfortable for me and so I didn't experience pain during the VB. Again, I don't know how the radiation was calculated, only that the radiation oncologist was present during the entire procedure both times.

Before the VB, the radiation oncology nurse spent about 30 minutes with me discussing what I needed to do to lessen vaginal atrophy. She gave me dilators and lubricant and showed me how to use them.

I'm very mystified why your cancer care team did not talk with you about the use of dilators after radiation. The radiation oncology nurse told me that sometimes the scarring of the vagina after pelvic radiation and especially after VB will make it difficult for vaginal exams after radiation. I do have some scarring at the vaginal cuff from the VB and shortening of the vagina from the hysterectomy because my cervix was removed. My nurse practitioner who does my follow-up exams said that she is able to use the speculum she used prior to radiation therapy.

Anyway that's a long story of my experience.