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.

@naturegirl5

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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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.

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@odette

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.

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Odette, Thank you for your very thoughtful reply.

Like you, I'm a scientist (experimental psychology) although not in medicine or the biological sciences. The information about cancer is all new to me but as a scientist I want to know it all, and each question leads to another question Also like you, I cannot file the information away as some of the people I know have done. I had and have a healthy lifestyle and no history of gynecological cancers in my first degree relatives. Genetic testing of the tumor was negative. I don't have children but I do have a niece whose mother (my sister-in-law) died from from a digestive disease cancer two years after diagnosis of endometrial cancer. I don't know if my sister-in-law had genetic testing but I'm trying to figure out to get my niece who is only 30-years-old to follow up on her own health.

When I read the report on the positive peritoneal washings, I did a search on PubMed for peer-reviewed literature. Then, my husband who I mentioned is a pathologist and I talked about what we both read. I understand research design and statistics from my doctoral training. For many years, I did not know what frozen sections were when he was "I'm on frozen sections today" or what he did in tumor board. Now I do and I keep asking questions. How do you keep your focus on your own recovery and process your own emotions vs. the objective distance you have in your own work as a scientist? Will we continue to make ourselves even more anxious with our worrisome minds and questions?

Thank you for sharing on this thread, and I wish you good health and that you stay well.

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@naturegirl5

Odette, Thank you for your very thoughtful reply.

Like you, I'm a scientist (experimental psychology) although not in medicine or the biological sciences. The information about cancer is all new to me but as a scientist I want to know it all, and each question leads to another question Also like you, I cannot file the information away as some of the people I know have done. I had and have a healthy lifestyle and no history of gynecological cancers in my first degree relatives. Genetic testing of the tumor was negative. I don't have children but I do have a niece whose mother (my sister-in-law) died from from a digestive disease cancer two years after diagnosis of endometrial cancer. I don't know if my sister-in-law had genetic testing but I'm trying to figure out to get my niece who is only 30-years-old to follow up on her own health.

When I read the report on the positive peritoneal washings, I did a search on PubMed for peer-reviewed literature. Then, my husband who I mentioned is a pathologist and I talked about what we both read. I understand research design and statistics from my doctoral training. For many years, I did not know what frozen sections were when he was "I'm on frozen sections today" or what he did in tumor board. Now I do and I keep asking questions. How do you keep your focus on your own recovery and process your own emotions vs. the objective distance you have in your own work as a scientist? Will we continue to make ourselves even more anxious with our worrisome minds and questions?

Thank you for sharing on this thread, and I wish you good health and that you stay well.

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@naturegirl5 @odette @m1b1r9 Thank you all for sharing your journeys. It is valuable information. I agree that coming from a background of research, it can be overwhelming and daunting to look at your own cases clinically, without putting your Self into the equation. I had this experience while working in the court system, as there were sometimes cases that hit close to home. Fortunately I had a judge who would talk to me outside the presence of others, asking if I was okay to proceed.
I wish all good health, continued knowledge and sending wishes for desired outcomes.
Ginger

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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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@harriethodgson1 and @naturegirl5 Thank you so much for posting your stories and the strength you have shown. They give me lots of strength and hope for the future. I don’t have cancer (just a rare, annoying autoimmune disease). Your positive outlook gives me hope that I can face the future, too. Thank you!

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@becsbuddy

@harriethodgson1 and @naturegirl5 Thank you so much for posting your stories and the strength you have shown. They give me lots of strength and hope for the future. I don’t have cancer (just a rare, annoying autoimmune disease). Your positive outlook gives me hope that I can face the future, too. Thank you!

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Thank you for your thank you. Sometimes in life, we discover strength we didn't know we had. My mother used to tell me, "The Good Fairy isn't coming." She didn't say this to quell my belief in fairies. Instead, she said this to help me realize I had to rely on myself.

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I had a post-operative follow-up with my gyn oncologist last week at Mayo Clinic. She did a pelvic exam and reported that following the radical hysterectomy I had on August 5 that I am healing just fine. She gave me the Cancer Survivor packet and we talked about what symptoms to look for over the next while and how I will be followed (my next appointment with her team will be in 6 months). That's it, now. I'm a Cancer Survivor. What does that mean to me? A new life, a process, not an end point?

On the same day I saw my doctor, I had a nutrition consult with a dietician. I'm a Cancer Survivor. Nutrition is part of the process. I've been trying to change my eating habits and food choices for many years with limited success. The cancer diagnosis has changed my values and beliefs about my food choices and as a result my motivation has changed.

I'm thankful for all the support I get here. Your stories about your lives has been an inspiration to me.

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@harriethodgson1

Thank you for your thank you. Sometimes in life, we discover strength we didn't know we had. My mother used to tell me, "The Good Fairy isn't coming." She didn't say this to quell my belief in fairies. Instead, she said this to help me realize I had to rely on myself.

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@harriethodgson1 I like the "The Good Fairy isn't coming". I've been saying that to myself. We have to deal with what life throws our way and we decide what we can and cannot control. I had some risk factors for endometrial cancer that I could not control (no children, late menopause) but still, I'll never know the cause of the cancer. We rarely do. But I can rely on myself, like you said.

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Thanks for your comments naturegirl5 I, too, have had rechecks after my surgery and continue to be cancer free. Every day is a blessing.

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@naturegirl5

I had a post-operative follow-up with my gyn oncologist last week at Mayo Clinic. She did a pelvic exam and reported that following the radical hysterectomy I had on August 5 that I am healing just fine. She gave me the Cancer Survivor packet and we talked about what symptoms to look for over the next while and how I will be followed (my next appointment with her team will be in 6 months). That's it, now. I'm a Cancer Survivor. What does that mean to me? A new life, a process, not an end point?

On the same day I saw my doctor, I had a nutrition consult with a dietician. I'm a Cancer Survivor. Nutrition is part of the process. I've been trying to change my eating habits and food choices for many years with limited success. The cancer diagnosis has changed my values and beliefs about my food choices and as a result my motivation has changed.

I'm thankful for all the support I get here. Your stories about your lives has been an inspiration to me.

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Such a great post, @naturegirl5. I encourage you to start a new discussion in the Cancer group (https://connect.mayoclinic.org/group/cancer/) with that title "I'm a Cancer Survivor. What does that mean?"
I think many people with cancer experiences ask the same question. It would be great to here more from those who have walked the path before you as well as you sharing your first-hand experiences with this new normal.

You might also be interested in following the this group "Cancer: Managing Symptoms" https://connect.mayoclinic.org/group/cancer-managing-symptoms/ There are several discussions there about navigating cancer post treatment that may interest you. Feel free to start any topics of interest to you too, for example about nutrition. It would be great to hear what you learn from your consult with a dietician.

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@colleenyoung

Such a great post, @naturegirl5. I encourage you to start a new discussion in the Cancer group (https://connect.mayoclinic.org/group/cancer/) with that title "I'm a Cancer Survivor. What does that mean?"
I think many people with cancer experiences ask the same question. It would be great to here more from those who have walked the path before you as well as you sharing your first-hand experiences with this new normal.

You might also be interested in following the this group "Cancer: Managing Symptoms" https://connect.mayoclinic.org/group/cancer-managing-symptoms/ There are several discussions there about navigating cancer post treatment that may interest you. Feel free to start any topics of interest to you too, for example about nutrition. It would be great to hear what you learn from your consult with a dietician.

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Thank you, @colleenyoung, I will follow up with your suggestions. I asked for the consult with the nutritionist since I figured it was something I CAN control.

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