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2 days ago · Endometrial Cancer: Noticing my blessings every day in Gynecologic Cancers

I rarely write messages, but I found your comments very thoughtful. I was diagnosed with stage 1A ovarian clear cell carcinoma (very rare) in May 2017. Although I was considered asymptomatic, a physician I was seeing for an unrelated problem encouraged me to have a CT scan and a CA-125 test. Fortunately, I had access to one of the top cancer centers (as well as being able to obtain a second opinion from another). At the time, the NCCN recommendation was chemo despite my being told it was likely a surgical cure. As a scientist by training, I had very strong reservations about following this course of action (international research found chemo ineffective ten years ago for OCCC). In the end, my treatment was very modified as a result of developing PN. In less than two years time, the NCCN has changed their recommendations to "observe" as an option for this histology. I now live with the concerns about the long lasting effects of treatment.
At the institution where I received care, germline testing is done as well as genetic testing of the tumor. I was grateful to be able to tell my daughters it was a somatic mutation. However, it is a histology associated with endometriosis which afflicts all of the women in my family.
I continue to do research on ovca (so heterogeneous) with a focus on OCCC. It is a time of rapid change in this area.
Being educated about this disease is very important to me, but I struggle with wanting to do "something" to help other women and feeling helpless. For me, the emotional/psychological aspect of recovery has been the most trying. I focus on being healthy (although I always had a very healthy lifestyle) and my family and friends. Sometimes I wish I could just file this whole experience away as some of my friends have managed to do, but at the same time I feel compelled to pursue my understanding of this dreadful disease.
I hope you stay well. And thank you for your contribution to this site.

Fri, Jul 12 9:33pm · Ovarian Cancer: Anyone have trouble getting diagnosed? in Gynecologic Cancers

I am glad you have a friend supporting you. I always write down all of my questions in advance and my caregiver would actually record the answers from my gyn/onc surgeon or oncologist so I could just listen. Admittedly, it is very hard to stay calm under the circumstances so it really helps to have another set of ears. After the appointment I could review all of the information that had been provided. I could then make decisions when I could think more clearly.

Fri, Jul 12 5:20am · Ovarian Cancer: Anyone have trouble getting diagnosed? in Gynecologic Cancers

A "bulky uterus" meaning they found a mass? I'm glad that you are seeing someone on Tuesday, but waiting even that long is difficult when you are feeling so miserable. Do you have someone to go with you, to support you during this process? It is extremely helpful to have another person with you to listen to the doctor as it is such an emotional experience. I'm sorry you are feeling so uncomfortable. It can be overwhelming!

Fri, Jul 12 5:05am · Ovarian Cancer: Anyone have trouble getting diagnosed? in Gynecologic Cancers

I think it would be wise to pursue care at a high-volume cancer center if you have access to one. My care was provided by one of the top four centers in the country with a second opinion from one of the others. I feel confident in their advice. You are very young and you should be looking for the best care possible. Write if you have questions. My particular diagnosis is associated with endometriosis and is a rare ovca.

Fri, Jun 14 7:16am · Video Q&A about Gynecologic Cancers in Gynecologic Cancers

Hi Miyong, I am sorry it has taken me so long to respond to your message. Thank you for writing to me. I have been very busy in the past six weeks following the birth of my first granddaughter. A baby brings such hope and happiness to a family. My four grandchildren are truly a highlight in my life…and a wonderful distraction.
To answer your question, I am not on any maintenance therapy since chemo. I do take an 81 mg aspirin daily. It has been recommended for OC and specifically clear cell.
I, too, eat a mostly plant based diet. Exercise is a regular part of my day…running, walking, biking, yoga. This seems to really help me emotionally.
Although I am retired, I am a scientist by training (not in CA research though) and I follow the latest research on OCCC (SGO, ASCO, major medical journals, etc.). I have attended a meeting at the institution where I received my care and the physicians/researchers have been very responsive to my questions. A large percentage of women with OCCC have/had endometriosis (as do all the women in my family) so I try to study that aspect as well. I had germline genetic testing at my clinic to determine if there was a mutation other than a somatic one. I am also in a few ongoing studies which have provided me with information which helps me in my pursuit of understanding this disease. However, I must limit my time on these efforts and focus on my daily life.
I hope this finds you well. Do stay in touch. Enjoy the summer!

Fri, Jun 14 6:38am · Have you ever had hiccups with or after chemotherapy? in Cancer

I responded "no" to the survey as I rarely have hiccups and I did not have them during my treatment. As recommended by friends who had undergone cancer treatment, I kept a journal for a year following my initial diagnosis. I was very specific about not only physical symptoms but psychological symptoms as well. It was actually quite helpful to record my thoughts and feelings during this time.

Wed, Jun 12 5:18am · Have you ever had hiccups with or after chemotherapy? in Cancer

Hi Colleen,
I was more than happy to respond to the survey, but I am curious as to why this question is being asked. I am involved in several ongoing studies (genetic, etc) and I am always interested in any information that may be available as a result. As a scientist by training (certainly not in this area of research), I am very involved in studying the etiology of my disease which is an LCOH (consequently less funded/researched) for women with whom I share this rare condition (I've met a number of women online). Thank you for your ongoing efforts to support this community of women with OC.

Mon, May 20 12:15pm · High Risk Mutation (ie. BRCA, ATM, RAD51D) in Breast Cancer

I agree. I would highly recommend genetic testing following the diagnosis of ovarian cancer.At the institution where I received my primary care, they advised me to have germline testing. In addition, I participated in a study that provided genetic information about the tumor itself which I have found helpful in my understanding of my specific diagnosis. It was also helpful to me to provide my daughters with this information for their health and well-being.