Endometrial Cancer: Noticing my blessings every day

Posted by naturegirl5 @naturegirl5, Tue, Aug 20 8:35am

I was diagnosed with Endometrial Cancer, FIGO Grade 1 in late July. I live in the Upper Peninsula of Michigan and asked for a referral to Mayo. A few days after the referral, I met with my GYN-Oncology team, and a few days after that I had a radical hysterectomy at Methodist Hospital. The surgery was two weeks ago today. I am grateful that I had the means to go to Mayo Clinic, for my surgeon and her incredible team, and that I am now back home on this gorgeous day surrounded by support and love from my family and friends. (The cancer was staged Ia – caught very early and no other treatment is recommended). My life is a gift for which I am very grateful.

My experience is the same–endometrial cancer and surgery. My cancer symptoms didn't quite match the ones on the Mayo website. Fortunately, my primary care physician listened to me, believed me, and took action. Cancer surgery last year, open heart surgery this year. I'm still standing, thanks to Mayo.

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@naturegirl5 and @harriethodgson1

I am so happy for you both for the help you received at Mayo. Thanks for sharing your amazing stories. May you continue to "still stand" and be grateful!

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@harriethodgson1

My experience is the same–endometrial cancer and surgery. My cancer symptoms didn't quite match the ones on the Mayo website. Fortunately, my primary care physician listened to me, believed me, and took action. Cancer surgery last year, open heart surgery this year. I'm still standing, thanks to Mayo.

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Harriet, I booked in with a gynecologist after I noticed post-menopausal bleeding. Like you, he took my symptoms seriously. We really must be persistent in working with medical providers who listen to us. Cheers to you and your experience. I was scheduled for a total hip replacement in mid-September. I just received a phone call from Orthopedics to change that date to mid-November. Still standing. A new expression for me. I like it.

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@naturegirl5 You bring up an important idea of continually advocating for your own health needs. You and @harriethodgson1 are great examples of advocating for yourself.

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@naturegirl5

Harriet, I booked in with a gynecologist after I noticed post-menopausal bleeding. Like you, he took my symptoms seriously. We really must be persistent in working with medical providers who listen to us. Cheers to you and your experience. I was scheduled for a total hip replacement in mid-September. I just received a phone call from Orthopedics to change that date to mid-November. Still standing. A new expression for me. I like it.

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We aren't just still standing, we're standing tall.

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@hopeful33250

@naturegirl5 You bring up an important idea of continually advocating for your own health needs. You and @harriethodgson1 are great examples of advocating for yourself.

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I think each person needs to take some responsibility for their own health. I kept track of my symptoms, how long I had them, and realized something was wrong.

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@hopeful33250

@naturegirl5 You bring up an important idea of continually advocating for your own health needs. You and @harriethodgson1 are great examples of advocating for yourself.

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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.

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@harriethodgson1

I think each person needs to take some responsibility for their own health. I kept track of my symptoms, how long I had them, and realized something was wrong.

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

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@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

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@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

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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.

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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?

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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.

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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.

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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.

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