Mayo Clinic Connect
Connect with others with ovarian clear cell carcinoma
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).
Liked by Teresa, Volunteer Mentor
@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?
I believe it is the NOCC in Boston.
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?
Thinking of you today!
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!
Liked by Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
I can't tell you how happy I am that all went well for you. You have been on my mind since Wednesday. I know the feelings of anxiety leading up to an appointment. Each step is a step in the right direction…a step forward. Write whenever you feel like it.
I haven't heard from you in some time and I am hoping all is well. I have made contact with some other women on other sites that also have a diagnosis of OCCC. One woman is very positive and encouraging….and is a ten year survivor! I am now hearing stories about women who have done well for 15 and even 20 years. I find that most encouraging. Recently, I had my three month appointment and all went well. I must admit the anxiety leading up to my exams can be overwhelming at times and I try meditation, yoga, and so on to help myself. I was hoping to meet people on the Mayo Clinic site as I received a second opinion from them prior to my treatment and I worked there as a young adult. My confidence in their care is tremendous! Thinking of you.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
Hello @kenwood1 I was thinking about you, along with @odette. I hope that your platelets are coming up and that you are doing well. If you are comfortable sharing more, please update us on how you are doing.
Hi! Yes I am doing well! My platelets came back. I feel good and getting back into swing of everything. I have more bloodwork for my yearly physical his week. I will have my cholesterol, thyroid and triglycerides tested. I’m cutinto see how chemo has effected these!
Liked by Colleen Young, Connect Director
Good to hear from you. I'm glad that everything is getting back to normal for you!
Did you attend the conference? I am attending an event in September which I hope to find informative. I understand feeling anxious.
Have you attended the September conference yet? I would be interested in knowing if it was helpful to you.
Glad to hear you are doing so well. I have a physical coming up soon, too. Hopefully, everything will be normal for the both of us. Have you been attending meetings with your local chapter for ovarian cancer? Did you attend the conference at the local resort? I hope you are getting support from family and friends. Take care. Hope to stay in touch.
Not yet. I have mixed feelings about attending because I anticipate it will focus on HGSC and may not touch upon OCCC as it is so rare. Actually, I have been in touch with a number of researchers that work on OCCC which I find very helpful. I've also connected with several women who also have OCCC. Thank you for your encouragement.
I would be interested in hearing what reaearchers say about OCCC. I just signed up for a walk to support ovarian cancer in PHX on Dec 2nd.
When I was first seen and then diagnosed, I signed up to participate in several research studies at the medical facility where I received care. I also had genetic testing done and am now part of an ongoing study there as well. I read medical research articles on-line and I contact doctors/researchers with questions. People can be very responsive. It helps to be informed.
Liked by Teresa, Volunteer Mentor, kenwood1
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