Endometrial Cancer: Noticing my blessings every day

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.

m1b1r9, I am so sorry to know that your cancer diagnosis was rare and aggressive. It's a blessing that you were able to go to MD Anderson for another opinion and are getting treatment at an excellent cancer center

I was diagnosed with endometrial adenocarcinoma, initially FIGO Grade 2 at my local hospital, and then Grade 1 by pathologists at Mayo (the slides were sent there following my referral). I also had positive peritoneal washing which caused me (and still causes me) stress and anxiety. My husband is a pathologist and between him and my surgeon, it was explained to me that the positive washings were likely due to the hysteroscopy I had at my local hospital a week prior to my surgery at Mayo. My surgeon said that she has seen this more frequently. Prior to 2009, my cancer would have been upgraded to Grade III, but the International Federation of Gynecological and Obstetrics (FIGO) standards have changed which opens a huge discussion about what these washings mean and so what the follow-up treatment should be. In my case, these cancer cells are not biologically viable in the pelvic cavity which is what I worried about.

Both you and I know a whole lot more about endometrial cancer then we ever wanted to know. I will keep you, your family, and your cancer care team in my prayers.

Naturegirl, what cell type was it?
I was also stage 1a, but had positive peritoneal washings, and it was diagnosed as serous cell type, which is rare and very aggressive. This was in Seattle.
Both chemo and radiation were recommended. I went to MD Anderson, and they diagnosed it as clear cell, and said only radiation treatment and no chemo. So, now I have metastatic spread and am diagnosed with peritoneal carcinomatosis.

Thank you for including my thread in the Gynecological Cancers group. I just talked with my doctor by phone yesterday. Since my endometrial cancer is Stage Ia, and because of my lack of other risk factors, I do not require chemotherapy or radiation. The cancer was less than .50 invasion into the myometrial tissue (uterine wall) and no invasion in cervix, fallopian tubes, or ovaries. Sentinel nodes were benign. I am so very grateful but realistically understand that this cancer places me at risk for other cancers. And, I need to be 5 years out from this surgery until I am considered cured. I am returning to Mayo for a post-operative consultation in a few weeks and will set up the future cancer checks at Mayo. I do not plan to follow up at my local cancer center and here is why. Our local hospitals and practices sold out to a for profit company about 8 years ago. This has affected the quality of care in our local community and so we take all of our speciality care to Mayo now. It's a long drive but totally worth it. Mayo typifies patient-centered care.

Hi @naturegirl5
You'll notice that I included your discussion thread in the Gynecologic Cancers group https://connect.mayoclinic.org/group/gynecologic-cancer/ so that other members, like @patricia5 @hhereford @bruges @glenda007 @7429, who also have experience with endometrial cancer can see yours and @harriethodgson1's stories and connect.

NatureGirl, what is your follow-up now? Will you need chemo or radiation? Will you return to Mayo for follow-up or go to your local cancer center?

This is exactly why I have changed primary care providers more than once. I became dismayed and annoyed at physicians and nurse practitioners (as a primary care provider) who made recommendations based on faulty reasoning. I had a primary care physician for 15 years who entered into discussions with me and often said - "you know your body better than I do". He retired. I haven't found anyone in my local area that comes close to the care I received from him. I'm still trying.

@naturegirl5 @harriethodgson1 Advocating for ourselves is critical, in all aspects of our lives. Not accepting what doesn't feel right in our gut.That is how I have had to be in my adult life, in my health concerns. This advocacy is what got the lupus diagnosis in 1988, and the cervical cancer in 1997, etc.Don't be afraid to change doctors to a team who will respect you.
Ginger

@naturegirl5 @harriethodgson1 This is exactly how I feel about Mass General Hospital. The care I received there before my liver transplant, during, and since then could not have been better. I am so thankful to have what was rated by US News as the 2nd best in the nation, on the heels of Mayo, just 55 miles down the highway, and “nationally ranked in 16 adult and 5 pediatric specialties and rated high performing in 9 adult procedures and conditions”, which is the most of any hospital in the country. I go there now for virtually everything except my PCP.
Even the doctors there admit that their food is pretty bad though. The last time I was in for a few days I don’t think I finished a meal!
JK

Yes, standing tall because you kept track of your symptoms and advocated for yourself.

Yes. thank you. I've changed primary care physicians more than once when I felt my voice and concerns devalued. While I have only seen specialists at Mayo, I am grateful that this has never happened to me in that setting.