Endometrial Clear Cell Cancer: Looking for survivor stories and info

Thank you for responding. I am new on this forum and I’m not sure what or how to ask for support. It just feels good to have someone in a similar situation to listen to my fears and worries. I appreciate your positive words of encouragement. I’m glad to hear there are others who are doing well. Can I ask more specifically how you reached a counselor? Were you referred to someone special, do you go in to meet with them or talk on the phone or online.? I’m off on my last camping trip and won’t be able to check back here for another week

I’m sorry you are not getting the support that you need. I did change doctors in the beginning. My daughters with with me at the first oncologist meeting and that doctor and her staff did not follow through with getting my surgery scheduled for over two months out and they knew it was cell clear endometrial cancer so my daughters encouraged me to switch to Mayo and I am so grateful that I did. I actually had my surgery, recovery time and my first round of chemo before the date scheduled for my surgery at the other place. So that’s my good experience with finding the right team.

@teechur89 I see that you went to Mayo Clinic for your cancer care. Do you live near the Mayo Clinic where you went? If so, you can send a note via the patient portal to your GYN-Oncologist and ask for a referral for counseling at Mayo Clinic.

Do you have a preference for in-person vs. virtual sessions? Depending on where you live and your community you can ask your primary care provider for suggestions or a referrals for a therapist who specializes in working with cancer survivors. While that speciality isn't a must it can be very helpful to talk with a therapist with that speciality. There may be such a therapist at your local medical clinic or hospital.

I live in a small community and so if I was looking for a new therapist I'd ask my friends and people in my religious community. In the last several years we have quite a few private practices that have opened up. The majority of the therapists where I live are social workers with the master's degree in social work - MSW. There are a few doctoral-level (Ph.D. and Psy.D.) psychologists where I live which would be my preference but that is up to you.

You can also check on the website Psychology Today.

Psychology Today-Find a Therapist:

-- https://www.psychologytoday.com/us/therapists

Do these ideas give you a few options?

I don’t live close, about an hour and a half away from Mayo. But I do sing their praises for caring. The big hug I got from the team on my last chemo treatment day meant the world to me. I have an appointment next week with my primary I can ask then. Thanks for the helpful info.

Last night my doctor called me. I really like him. He said to just call or message him. Cut the staff out.
I told him might have over reacted. He said no you didn't you have cancer and it's scary and you needed answers. He does call me that was his 5th call to me in 9 weeks.

@denisestlouie Good news that he called you back. It's great too that he validated that you did not over react and that it's a scary diagnosis and contacting him was the right thing to do under the circumstances.

I've had similar conversations with my doctor in the past who tells me to bypass staff and just contact the doctor directly. One time I wound in the Emergency Department when I could not get through the front desk staff to my doctor (that was a long time ago and not cancer-related).

Hi Helen and all, I forgot to say I was mixed endometrial, I call it regular and clear cell, it was also in one lymph node. Very grateful to be at this place over 3 years after treatment. Also on a positive note, I was received the diagnosis on Friday at 8pm of Labor day weekend. I realized last monday I didn't even think of it at all that weekend! I am due for a follow up 6 months from my last with exam, blood work and CT scan. I had to talk them into 6 months, they were trying to move me to a year. Very frustrating that something so high risk would be just moved further apart. very much determined by insurance. I have not found any uterine clear cell specialists so that makes it harder. I got another post treatment opinion from a lovely doctor who is a breast specialist. She said I had a 20% risk of breast cancer and should be scanned 2x a year. That makes no sense to have breast scans more often than for clear cell. Very frustrating.

I hope you enjoy your camping trip! I found the counselor at the cancer center where I was treated. They also have support groups but I am working and cannot go during the week. It would have been helpful during treatment but it was during covid so not available. I would ask where you are being treated or even through the Mayo clinic online if you were up for that.

@ejohn Three years out from diagnosis is wonderful. Like you I wouldn't want to be seen annually only three years out from a mixed endometrial (regular and clear cell) uterine cancer. I wonder if insurance will pay for 2 mammograms each year even with the risk your breast cancer physician talked with you about. This makes no sense. It's a good question to ask your gyn-oncologist.

My initial diagnosis came to me late on a Friday afternoon during the last week in July of 2019. Like you I had to "sit" with it all weekend until I could see my doctor again. My doctor called me so at least I didn't see the diagnosis on a portal.

@denisestlouie I thought I would check back in with you. Your second opinion consult will be next week, is that right? How are you feeling?