Just diagnosed with Endometrioid Adenocarcinoma: What to expect?

Posted by rose53 @rose53, Oct 21, 2021

I was just diagnosed with this uterine cancer. I am 68 and I'm so freightened. Waiting to see doctor for hysteroctomy. This is all I know. I had a biopsy done and this is the result. Anyone please let me know what ro expect and do before hand and any suggestions are embraced. ❤

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@naturegirl5

If not a support group then maybe a mental health clinician?

You wrote that some days you feel more like your old self and other days you're confused. And you have trouble sleeping and cry a lot. I know personally how awful all that is. It's the rollercoaster of emotions that go with what we're going through. Some days or hours we feel up and somewhat happy and other times we're down. I don't know about you but I'd like a smoother ride as I've never been a fan of roller coasters.

You shared that you're menopausal since the surgery. Is this something you can add to your list of questions for your doctor? Or see your gynecologist?

I was referred to a Women's Sexual and Health Clinic at Mayo in Rochester after my surgery. The Clinic is filled with knowledgeable and supportive providers, including a psychologist, who gave me information and suggestions that have really helped me. Like you, I live in a remote area and there is nothing like that here. Is there such a clinic or practice near you?

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I am no fan of roller coasters either. I will definitely be speaking with my oncologist/surgeon about this. I spoke with my GP today and she said she would prefer he make those decisions as to what would be best considering my diagnosis.

I will certainly ask about support groups and or a clinician if not. I know that this isn't something I was prepared for. I don't know that anyone ever could be. I certainly hope we can quickly deal with the insomnia as I know that rest is vital to recovery and I just don't rest well. On average I may sleep 4 hours a night and may lay down for a while in the afternoon but never fall asleep.

I don't know of any clinics around with the resources you have described but I will ask about that as well.

I have a few more weeks off work and I can imagine that will not be an easy transition since right now just dealing with daily life is a challenge.

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@cmb2022

No, this isn't a major university or medical center, although it is one of the best in our remote area. I will ask about a support group at my visit. I think that would be so beneficial.

I will consider asking my sister to accompany me, but I prefer not to have the distraction, so that I can concentrate on the news and info myself.

This is very stressful. I don't sleep well, and feel like I cry a lot..
Somedays I feel a little more like my old self and somedays I feel so confused.

Thank you again for being there. It means so much to me.

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Hello @cmb2022 your appointment is coming up soon. You have been present in my thoughts. How are you feeling today?

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@naturegirl5

Hello @cmb2022 your appointment is coming up soon. You have been present in my thoughts. How are you feeling today?

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@nature girls
I am feeling pretty good. I have had a couple of days that I have been a little energetic and overdone it, so that has slowed me a bit. Still struggling with insomnia and occasionally with crying. I am working on my list of questions for my appointment also. Thank.you so much for checking on me.

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@andrea69

Good morning Helen,

Thank you so much for your reply. I spoke with a physician yesterday, who is filling in for my doctor who is currently on vacation. She told me that she had already sent a referral to the GYN/ONC department, so hopefully I will be speaking with them soon. I do have a copy of the pathology report, and it is indeed quite confusing in spots - especially the marker terminology, so I will def. have questions about the terminology.

I wish I could have children, but they told me I was walking a fine line between being menopausal and post-menopausal. One of the biggest risk factors I have right now is obesity. I have been told that I am indeed a candidate for robotic/laparoscopic surgery, but it seems whenever I breach the subject, they shy away from it. I am going to strongly press for it now. I am conscientiously dieting and have lost a fair amount of weight, and my goal is to lose at least 10-20% of my overall weight. Hopefully they will see that as an indication I am serious about getting this surgery and that I am doing everything I can on my end to get this excess weight off.

I will give the GYN/ONC today to get back to me. If I don't hear from them, I will give them a call tomorrow. I keep reminding myself that my doctor did tell my husband that "she got it all", and that the muscle underneath the concerning area was clean, pink and without discoloration or erosion. It did sound positive, so I am hoping that is an indication of everything as a whole.

Many, many thanks and blessings to you. I will report back when I have some more info.

Andrea

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Hello, @andrea69 I have been thinking about you and wondering how you are doing. Is there anything new you'd like to share?

Blessings to you.

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@cmb2022

@nature girls
I am feeling pretty good. I have had a couple of days that I have been a little energetic and overdone it, so that has slowed me a bit. Still struggling with insomnia and occasionally with crying. I am working on my list of questions for my appointment also. Thank.you so much for checking on me.

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@cmb2022 Your appointment is this week, is that right? Can I help you with anything such as your list of questions for the physician?

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@naturegirl5

@cmb2022 Your appointment is this week, is that right? Can I help you with anything such as your list of questions for the physician?

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@naturegirl5
Yes, thank you it is later this week. I would love help with my questions. So far I have follow up (frequency, tests to expect, duration), Results of MSI (I think it is called) genetic test, best diet to follow, chance of reoccurance, support group availability, how to get relief from insomnia, crying, moodiness, etc. And when I can return to work. Anything else I am missing?

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@cmb2022

@naturegirl5
Yes, thank you it is later this week. I would love help with my questions. So far I have follow up (frequency, tests to expect, duration), Results of MSI (I think it is called) genetic test, best diet to follow, chance of reoccurance, support group availability, how to get relief from insomnia, crying, moodiness, etc. And when I can return to work. Anything else I am missing?

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Hello, @cmb2022

At my followup visit after surgery, my GYN/ONC surgeon gave me a Cancer Survivorship Plan. The Plan has my diagnosis, cancer staging, background information, cancer surgeries and recommendations for my wellness. It also had the follow-up recommendations and signs and symptoms of recurrent cancer. So here are some questions that could be answered before you ask them - that happened to me but being prepared is always good.

1. Will you give me a Cancer Survivorship Plan?
2. What is the survival rate for my diagnosis and cancer stage (typically stated over 5 years).
3. What are the signs and symptoms of cancer recurrence for me?
4. Who will I see for my follow-up appointments, and how often? (My plan had that information for my cancer care team).
5. What tests are done at follow-up appointments and/or physical exam?
6. You have menopausal symptoms so who will help you with these symptoms? Is there a Women's Menopause and Sexual Health Clinic or doctor where you can go?
7. Help with diet. Referral to a nutritionist who specializes in cancer.
8 Genetic testing results.
9. Ask for a copy of your pathology report.
10. Any restrictions for when I return to work?

I repeated some of what you wrote in your note and added a few things. If I think of anything else I'll add it in another post.

I'll be thinking of you this week and hope that you get the information you need and want at your appointment. Will you come back and let me know how it goes?

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@naturegirl5

Hello, @cmb2022

At my followup visit after surgery, my GYN/ONC surgeon gave me a Cancer Survivorship Plan. The Plan has my diagnosis, cancer staging, background information, cancer surgeries and recommendations for my wellness. It also had the follow-up recommendations and signs and symptoms of recurrent cancer. So here are some questions that could be answered before you ask them - that happened to me but being prepared is always good.

1. Will you give me a Cancer Survivorship Plan?
2. What is the survival rate for my diagnosis and cancer stage (typically stated over 5 years).
3. What are the signs and symptoms of cancer recurrence for me?
4. Who will I see for my follow-up appointments, and how often? (My plan had that information for my cancer care team).
5. What tests are done at follow-up appointments and/or physical exam?
6. You have menopausal symptoms so who will help you with these symptoms? Is there a Women's Menopause and Sexual Health Clinic or doctor where you can go?
7. Help with diet. Referral to a nutritionist who specializes in cancer.
8 Genetic testing results.
9. Ask for a copy of your pathology report.
10. Any restrictions for when I return to work?

I repeated some of what you wrote in your note and added a few things. If I think of anything else I'll add it in another post.

I'll be thinking of you this week and hope that you get the information you need and want at your appointment. Will you come back and let me know how it goes?

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@naturegirl5

Thank you so much! I have updated my questions and requests and think I am ready for my appointment. I am looking forward to it and yet dreading it at the same time. I am apprehensive to return to work and I really don't know why, but honestly I am not sure of anything anymore. Anyway, thank you for your help and I will update after my appointment. Thank you you have been so helpful! ❤

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@cmb2022

@naturegirl5

Thank you so much! I have updated my questions and requests and think I am ready for my appointment. I am looking forward to it and yet dreading it at the same time. I am apprehensive to return to work and I really don't know why, but honestly I am not sure of anything anymore. Anyway, thank you for your help and I will update after my appointment. Thank you you have been so helpful! ❤

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@cmb2022 I can relate to the feeling of anticipation along with the dread. I think you know yourself very well.

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@naturegirl5

@cmb2022 I can relate to the feeling of anticipation along with the dread. I think you know yourself very well.

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@naturegirl5

I had my appointment and it went very well. Most all of my questions were answered (I forgot to ask a couple small details), but that was my fault. I will be seeing my oncologist every 3 to 6 months for the next 5 years. I received copies of my diagnosis, genetic study, etc. We spoke in detail about the symptoms I have been having and if and who should treat those. He prescribed something and I will start it today. I left feeling hopeful, grateful and relieved. I will be returning to work next week, so I am not sure how that will play into my recovery, but I am thinking maybe having my mind on other things may be a good thing. I can't thank you enough for your help. It has meant so much to me!!!

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