Connect with others with ovarian clear cell carcinoma
Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.
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.
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?
Jump to this post
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
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.
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In