Endometrial Cancer: Noticing my blessings every day

Posted by Helen, Volunteer Mentor @naturegirl5, Aug 20, 2019

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.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@m1b1r9

Hi Naturegirl!
Thanks for asking.
Yes I am getting treatment at MDA, 2 new drug combination that was recently approved for metastatic endometrial CA
in Sept of this year.
Lenvatinib and keytruda. It has significantly decreased quality of life as the lenvatinib has many side effects. I will try it for 2 cycles, and get a scan in about 4 weeks, and decide if it is worth taking.
How are you doing? Hope all is well.

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Hi m1br1r9, I'm recovering from my surgery in August and have some aches on occasion. At times I worry about recurrence or secondary cancers but realize I cannot live my life under that shadow. My first follow-up with my cancer team (at Mayo) will be in February, 2020. Does anyone ever ask you what caused your cancer? I've been asked that a few times and find it distressing. Yes, I had some risk factors that I could not control (no children, late menopause) but it's not as if I had been lax in health screenings or self-care. I think that others who ask this question are projecting their own fears so I just leave it at that when I answer "no, I don't know and honestly the risk factors for gynecological cancers are complex and varied".

I'm wishing you all my best, naturegirl5

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Not to scare anyone but always insist you get a speculum exam in the future. I had uterus cancer and a hysterectomy no radiation just regular exams, that was in 2009. I insisted on an examination with a speculum in fact I went to 4 doctors during a 2 year period who just did an examination without a speculum. The fourth doctor finally used a speculum in 2017 and found that my cancer had returned in my vaginal cuff, 25 external radiation treatments and brachytherapy. Had I not insisted the doctor use a speculum my cancer would have been missed. One has to be really proactive these days. I forgot to add that the reason the doctors did not want to use a speculum was because there was only a 1% chance of recurrence.

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@jeanadair123

Not to scare anyone but always insist you get a speculum exam in the future. I had uterus cancer and a hysterectomy no radiation just regular exams, that was in 2009. I insisted on an examination with a speculum in fact I went to 4 doctors during a 2 year period who just did an examination without a speculum. The fourth doctor finally used a speculum in 2017 and found that my cancer had returned in my vaginal cuff, 25 external radiation treatments and brachytherapy. Had I not insisted the doctor use a speculum my cancer would have been missed. One has to be really proactive these days. I forgot to add that the reason the doctors did not want to use a speculum was because there was only a 1% chance of recurrence.

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Dear jeanadair123, Thank you for this reminder. I'm returning to Mayo Clinic for my cancer appointments. When I had my surgery follow-up six weeks after surgery, the surgeon did use a speculum. I will make sure that all of those subsequent appointments include the use of a speculum. Dr. Kumar (my gyn oncologist at Mayo in Rochester) told me that all of my future checks will be complete pelvic and rectal exams. For this endometrial cancer, I won't have any imaging studies (CT, MRI or PET) or labs unless I report symptoms or they find symptoms during the physical exam. Yes, we all must be proactive with our medical providers. I have found that when I do this and receive arrogance, ego or pushback (which I have for other medical issues), I decide that is not the provider for me.

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I have clear cell cancer of the uterus (endometrium). I had a hysterectomy and I just got the pathology report. My cancer spread from my lower uterine segment to my cervical stroma, which makes it FIGO Stage II. There was some myometrial invasion (40%); pelvis lymph nodes were negative. I have to have six sessions of chemotherapy now (one session every three weeks), which will be followed by external and internal radiation. After I go through all of this, the cancer may return. I feel like I've just received a death sentence. Susan54

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@stparker54. My heart is breaking for you. I felt like you when I first received my cancer diagnosis. I was in shock and my thoughts kept returning to how much time I had left. My treatment was at Mayo Clinic-Rochester and they have a huge support network for cancer survivors. I'm not sure what they have online right now but I'm thinking much of what Mayo Clinic has in group support and with therapists has gone online. Are you located in an area with a cancer center? What resources are available to you? I hope you have support from your loved ones and friends however I also hope you have or will have a therapist you can talk with. I will keep you in my prayers.

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Just started my first round of chemo this week and am feeling very weak. So much so that my brother had to walk my dog this morning. Now as I look at my dog, I'm trying to muster up enough energy to take my dog for his second walk of the day. And to make matters worse, it's raining outside. A hurricane has hit the Texas coastline. I live outside of Houston. Also have lost my appetite. My brother bought me some Ensure. I'm hoping this will restore some of my energy.

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@stparker54

Just started my first round of chemo this week and am feeling very weak. So much so that my brother had to walk my dog this morning. Now as I look at my dog, I'm trying to muster up enough energy to take my dog for his second walk of the day. And to make matters worse, it's raining outside. A hurricane has hit the Texas coastline. I live outside of Houston. Also have lost my appetite. My brother bought me some Ensure. I'm hoping this will restore some of my energy.

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@stparker54 Susan, be gentle on yourself. Eat what appeals to you, do what you can. If your brother needs to take your critter for the second walk, that's okay, right? You need to learn how you will adjust to all this new procedure. Have you been able to check into a support group, yet?
Ginger

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@gingerw

@stparker54 Susan, be gentle on yourself. Eat what appeals to you, do what you can. If your brother needs to take your critter for the second walk, that's okay, right? You need to learn how you will adjust to all this new procedure. Have you been able to check into a support group, yet?
Ginger

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Ginger : thank you for the kind words and advice. I have not joined a support group. I have gotten a lot of support from this group, as well as practical advice about what to expect with this cancer and how to deal with side effects of chemo. Most importantly, listening to women who are surviving give me hope.

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@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 have a question for all the women who have undergone chemo. How did you survive it? I just finished my first treatment and I'm weak, experiencing nausea and lhave lost my appetite. It's like the Perfect Storm hit me all at once. I have five more treatments to go. Is the First treatment the worst, or can I expect this with every treatment?

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@stparker54

I have a question for all the women who have undergone chemo. How did you survive it? I just finished my first treatment and I'm weak, experiencing nausea and lhave lost my appetite. It's like the Perfect Storm hit me all at once. I have five more treatments to go. Is the First treatment the worst, or can I expect this with every treatment?

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Hi. I survived multiple chemo treatments. What really helped was when I felt the worst I got on the treadmill for at least half an hour. It is amazing how that helped ease the discomfort. Also, I lost my appetite. Best to regain energy by eating protein, absolutely no sugar, avoid carbs and red meat, stick to healthy vegetables and fruits. One year later I am having a problem keeping my weight down and have a vigorous appetite. The first treatment is the worst! You will get used to it and you will survive! It will all become a memory in no time at all!

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