Mayo Clinic Connect
Connect with others with ovarian clear cell carcinoma
I was diagnosed with stage 1 OCCC in Feb of this year. I just finished my 6th round of chemo and have lab work and CT follow up scheduled in a few weeks.
Liked by Teresa, Volunteer Mentor
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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I am done with my chemo. I only needed 6 treatments. I am feeling good, getting my energy back. I have a CT scan and bloodwork scheduled for Aug 1st
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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.
@odette, please meet @kenwood1, who has OCCC as well. I hope the 2 of you will connect. Kenwood just finished chemo.
Hello @odette and @kenwood1.
I would also like to add my welcome to you both as you have recently joined Connect. While I have not had ovarian cancer such as you have, I have had a rare form of malignancy (neuroendocrine tumors). After the third diagnosis and surgery, I also joined Connect. Before joining Connect I did not know of others who were dealing with this type of cancer and it was very helpful to post with others who had this experience and had walked the same path I was going down. I understand that dealing with rare cancers can be a lonely road.
I am glad that you have found each other and Connect! I wish you both well as you wait for results of upcoming scans and I look forward to hearing from you both again.
I would very much like to communicate/share with others with this very rare form of OC. Although I am nearly a year past treatment, I still hope to connect with others who understand the "isolation" one feels at times despite having tremendous support. Please do contact me.
Hope to hear from you.
I start my 3 month appt check ups in 2 weeks. I will be nervous each time, right now it feels good to have all my energy back knowing that I don’t have another round of chemo ahead of me. I live in AZ and have been in touch with the local chapter of the ovarian cancer society. They have several support groups I am thinking of joining. They also are having a conference this week end at a local resort to meet other survivors and get lots of new information on new treatments etc.
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.
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.
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.
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).
Did you attend the conference? I am attending an event in September which I hope to find informative. I understand feeling anxious.
I would be interested in knowing more about the conference. When and where is it? Is it only for ovarian cancer?
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