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Rare cancer: ovarian clear cell carcinoma
Gynecologic Cancers | Last Active: Jun 18, 2023 | Replies (122)Comment receiving replies
I am so sorry to hear about your story and your battle with OCCC, but I am so happy to hear you are doing well. I sincerely appreciate your advice and guidance. I am still getting my 2nd and 3rd opinions as I am not sure I want to have my surgery at UCSD. So as of right now I have not settled on an oncology team. Plus only one pathology team has reviewed my tissue so I do want to get a second opinion on the diagnosis. As you well know it is a lot to take in and your life changes over night. Plus I am still in pain from surgery and recovering so it is a lot. I know once I have a plan, surgery date and course of action I will feel much better. May I ask you a personal question did you have an open incision for your surgery or a robotic surgery. They want to do open on me as the endometriosis has spread to other organs, but I would really rather avoid the open surgery with the huge incision down by tummy. Thank you so much and I am so grateful to have found this support group. A girlfriend sent it to me.
Replies to "I am so sorry to hear about your story and your battle with OCCC, but I..."
I just remembered that there is another lovely woman named Stacy who joined this site in January that I knew from other forum. She has OCCC stage 3A and went to the Mayo Clinic in Arizona for her care. I believe you can reach her at @azovercomer. She might be able to provide you with helpful information. She is very kind.
My surgery is scheduled for Tuesday, June 2. I had a PET scan done and it showed that my cancer has not spread from my uterus. The surgeon said she plans to remove my uterus, ovaries and fallopian tubes laparoscopically. She will make a few small incisions rather than one large incision. Still, I'm very anxious about the surgery. The surgeon isn't sure if she will keep me in the hospital overnight Tuesday. I plan to recuperate at my brother's home for a few days. Susan54
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I did not realize that you would need surgery again. I assumed that you had optimal debulking with your initial surgical procedure.What is this next operation? If you've not had the tumor removed, they will probably recommend an abdominal hysterectomy (so as to avoid rupture of the ovary) which I believe is typically done with a vertical incision. My incision healed quickly and is barely visible, but I know everyone responds differently (scar tissue, etc). I was postmenopausal at the time of my diagnosis so there was no endometriosis present other than the endometrioma/OCCC.
Getting a second opinion is essential and I admit that I have more confidence in the institutions that have a reputation for performing gynecologic oncology surgery regularly. I grew up going to the Mayo Clinic as well as working there so I have a great deal of respect for their care which is why I obtained a second opinion from them. Dana Farber, MSK, and MD Anderson are in the same league. Unfortunately, not everyone can access these medical facilities, but having an experienced gynecologic oncology surgeon is ultimately what is most important. OCCC is rare and really a very different disease than HGSOC which is the most common. It is often confined to the ovary and is associated with endometriosis. What was your CA-125?
I also consult ESMO research regularly as I mentioned previously. Their approach to early stage OCCC has been different than that of the United States until recently. But I do think that the research coming out of Asia is cutting edge because of the prevalence of OCCC.
I have lived in France many times and was hoping to go there this summer. Not happening now.