Not having heard from you in awhile, I thought I would just check in hoping to find you doing well. I haven't seen you on Inspire either. In these times of uncertainty, everything seems so much more complicated.
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My husband was diagnosed with WPW many years ago. Although it doesn't affect him often, it is frightening when it occurs. No treatment has ever been proposed. Should our children or grandchildren be concerned about this condition? Is it a genetic heart disorder? Thank you.
I would suggest you look at the NCCN (National Comprehensive Cancer Network) guidelines for ovarian cancer. There is a patient guidelines booklet online. These are the standards for treatment used at all of the cancer centers in the U.S. While OCCC research shows resistance to platinum-based chemo, it is relative. Until you know your staging, you will not know how to proceed. Have you been provided with this information? Unless you are stage 1A and observation is an option, chemo will be recommended. Everyone responds differently. If chemo is recommended for you, your team will prepare you in advance. Hair loss is typical, but some women are now using cold caps which may or may not be covered by insurance. The effectiveness varies.
Glad to hear from you. I've been thinking about you.
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.
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.
Dear Stacie, I'm so sorry that you've become a member of this "group" as no one expects this to happen. I was absolutely stunned myself as I was very healthy and had no risk factors to my knowledge. In fact, I had had an endometrioma about 18 years prior to my diagnosis which they didn't seem concerned about and had reassured me would never develop in to ovarian cancer, my concern at the time They did inquire as to whether or not I had been diagnosed previously with endometriosis. In retrospect, I did have a history of many of the symptoms, but they had always been dismissed by doctors. However, all of the women in my family have endometriosis and consequently various health problems (infertility, etc.). I also had the few recognized "protective" factors.
Ovarian clear cell is very rare although I am in touch with several women online with similar diagnoses. You may want to join Inspire which has a group of women with OCCC. You are correct in that it is more prevalent in Asia and consequently much of the research originates there, especially Japan. I have done exhaustive research myself over the past three years. I also consult research out of Europe (see ESMO) as I, too, have lived in Europe many times and have confidence in their research. Canada also has a different approach to treatment, especially for early stage OCCC. Your staging will be very important in determining your treatment. In the United States, the standard for care and treatment is the NCCN which you can go to for information although I've not found the recent changes regarding OCCC as helpful.
This is a terrifying experience and I understand your fear. It is also a very challenging time to be dealing with such an ordeal. If you can communicate with your surgeon/oncologist sooner than three weeks, it might help you. My surgeon contacted me with pathology and cytology results as soon as he received them. Your team will be there to support you. I lost weight and had no appetite, too, as I was overwhelmed and in shock. I hope that you have a support system in place (family, friends) who can go to appointments with you. It is important to have another set of ears and someone who can record info, help with questions you've written prior to the appointments. Try to eat well and exercise. The exercise helped me not only physically, but emotionally. Yoga and meditation were helpful to me as well as massage.
I had my treatment at Dana Farber in Boston, MA and additional advice from the Mayo Clinic. I would wait for the results so you can think more clearly about how to proceed.
Have hope. Many of us with OCCC are doing well. I will be happy to help you.