1. < Gynecologic Cancers
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Rare cancer: ovarian clear cell carcinoma

Posted by odette @odette, Jul 18, 2018

Connect with others with ovarian clear cell carcinoma

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

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odette | @odette | Jul 21, 2018
In reply to @odette "I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I..." + (show)
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I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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I was hoping to hear from you. Ovarian clear cell is very rare and I finally decided to join Connect a few days ago. While I know other women with OC, their histology and circumstances are quite different. It is helpful to communicate with some one who is having a similar experience. I live on the east coast. My medical team has been very supportive...my family and friends as well. Although I am well physically, at times I am anxious, especially before appointments. I would be happy to share with you through Connect.

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odette | @odette | Jul 23, 2018
In reply to @hopeful33250 "Hello @odette Please take a look at the post from @kenwood1 above. Please feel free to..." + (show)
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Hello @odette

Please take a look at the post from @kenwood1 above. Please feel free to direct any questions or concerns to her. She might be able to offer you some information as well as encouragement since she has walked down this road as well.

As you can see, @kenwood1 joined a support group for those who have ovarian cancer. Have you looked into find such a support group in your area? If not, call the local American Cancer society office or go to their website and see what you can find.

Teresa

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I have gone to the ACS website many times during this process, but my medical team cautioned me about joining a group of survivors with OC. OCCC is so rare. I was delighted to join Connect and find others like myself. I hope to hear from Kenwood, but I know how difficult this process can be...one day at a time. I also wrote to Felicidad who "liked"my message. We share several things in common. I hope to hear bacck from her as well. Thank you for your encouragement.

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 23, 2018

Hello @odette

I am glad that you are reaching out to others, that is what Connect is all about! If you would like to direct a message to @kenwood1 just copy her user name at the beginner of your post and she will get a notification of it. Be sure and use the @ sign and then kenwood1 after it (with no spaces).

Teresa

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odette | @odette | Jul 23, 2018
In reply to @odette "I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I..." + (show)
Profile picture for odette @odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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Did you attend the conference? I am attending an event in September which I hope to find informative. I understand feeling anxious.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 23, 2018
In reply to @odette "I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I..." + (show)
Profile picture for odette @odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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Hello @odette

I would be interested in knowing more about the conference. When and where is it? Is it only for ovarian cancer?

Teresa

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odette | @odette | Jul 23, 2018
In reply to @odette "I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I..." + (show)
Profile picture for odette @odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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Yes, it is an informational meeting about ovarian cancer (east coast).

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 24, 2018
In reply to @odette "I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I..." + (show)
Profile picture for odette @odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

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@odette That sounds very good. Is it being sponsored by a hospital in the area? If I may ask, what city on the east coast?

Teresa

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odette | @odette | Jul 24, 2018
In reply to @odette "I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I..." + (show)
Profile picture for odette @odette

I was diagnosed with OCCC in May 2017. My chemotherapy treatments ended in September 2018. I go in every three months at this point. Physically, I am doing well. I struggle emotionally at times despite having a great deal of support. It has helped me to do research on this rare condition. Just recently, I joined Connect in hopes of finding someone else like me.

Jump to this post

I believe it is the NOCC in Boston.

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odette | @odette | Aug 1, 2018
In reply to @colleenyoung "Welcome to Connect, @odette and @kenwood1. I'm delighted that you found each other so quickly. Being..." + (show)
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Welcome to Connect, @odette and @kenwood1. I'm delighted that you found each other so quickly. Being diagnosed with a rare cancer, like ovarian clear cell carcinoma, it can be a challenge to find others like you.

Odette, when were you diagnosed? Have you started treatment?
Kenwood, Do you have more chemo to go or was 6 rounds the completed treatment at this time? How are you feeling?

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Thinking of you today!

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kenwood1 | @kenwood1 | Aug 3, 2018
In reply to @colleenyoung "Welcome to Connect, @odette and @kenwood1. I'm delighted that you found each other so quickly. Being..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome to Connect, @odette and @kenwood1. I'm delighted that you found each other so quickly. Being diagnosed with a rare cancer, like ovarian clear cell carcinoma, it can be a challenge to find others like you.

Odette, when were you diagnosed? Have you started treatment?
Kenwood, Do you have more chemo to go or was 6 rounds the completed treatment at this time? How are you feeling?

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My CT scan came back clear and all good! My blood work is getting better except my platelets went pretty low. I go back in 2 weeks to get it checked again! I’m feeling great though!

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