Endometrial Adenocarcinoma: Concerned I will feel sick with treatment

Posted by RefluxGoAway @njp515, Dec 5 1:26pm

Endometrial Adenocarcinoma, FIGO Grade 1, but no bleeding or pain

Does anyone else have this situation where the cancer was found almost by accident, as we were looking for the source of urinary double-voiding, and I had absolutely no gynecological symptoms whatsoever. An Ultrasound picked up the 15mm thickness of my uterine lining, and then colposcopy, D&C, and biopsies followed. It was a total shock when I was told I have endometrial cancer, because I am 70 yo and NEVER bled after menopause at 54yo.
I have Barrett's Esophagus, but it has been controlled for more than 15 years. I had fibroid embolization in 2006 with no complications. My August colonoscopy is clear. Blood tests are all normal. Mammo is clear. Urodynamic testing showed no abnormalities. My biggest medical problem is osteoarthritis in my feet!
My meeting with the oncologist is next week, when I am sure we will decide what type of hysterectomy I need to have.
I'm just concerned that I will start to feel sick after treatment starts, because I've been fine up to this point.

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@njp515 Do you mean Endometroid (not endometroisis) Adenocarcinoma FIGO Grade 1? That was my diagnosis when I was 67-years-old however I did have symptoms of spotting and eventually cramping which got me to the gynecologist. Considering the reasons that your doctor (gynecologist?) ordered the ultrasound and performed the D & C I understand why this diagnosis is such a big shock for you.

It's a good thing that you will meet with the oncologist next week. That's very soon. With this diagnosis it doesn't mean that you will feel ill with treatment as it's possible that the oncologist might suggest a radical hysterectomy with removal of ovaries, fallopian tubes, and cervix. When I had a radical hysterectomy the endometroid adenocarcinoma was staged 1a by the pathologist who examined the tissue removed during surgery and no other treatment was recommended at that time. I was fatigued for awhile after the surgery and I carefully followed all the post surgical recommendations from my GYNOncology surgeon. It could very well be that there will be no other treatments after your surgery too but the recommendations will depend on the pathology report indicates following your surgery.

Have you thought about the specific questions you would like to ask the oncologist next week?

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Oh dear, yes, I see that I typo-ed the title. It is endometrial cancer, not endometriosis. Thank you for your response.
I suspect that the oncologist will order more CT scans, but the hysterectomy is inevitable. I would love for that to be the full extent of my treatments, but who knows.

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@njp515 It's good that your appointment with the oncologist is coming up soon. The waiting is really difficult or at least it is for me. What day is your appointment with the oncologist? How are you feeling today?

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I was diagnosed with stage IIIC endometrial cancer and I too never have any symptoms. You will feel discomfort after a hysterectomy but that is fairly short-lived. I had a total hysterectomy and felt bloated. I experienced pain around the sutures but that was a minor inconvenience. It was a laparoscopic hysterectomy.
I did received chemo after and that was more of a challenge.

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Thank you very much for your reply. May I ask, do you remember what your Grade was before the hysterectomy? Also, did your oncologist require you to have more tests (MRIs, CTscans) before they would do the hysterectomy?

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Another voice here. I had post-menopausal bleeding (slight spotting, actually, the first time, a bit more a year later with some cramping). My cancer endometriod adenocarcinoma was found during a hysteroscopy about a month after the second spotting episode. No staging was offered at that point, as I was immediately referred to GYN ONC for surgery. At Mayo I underwent CT, chest x-ray, urodynamics tests and a colonoscopy prior to my surgery. I had a radical hysterectomy, bi-lateral oophorectomy, salpingotomy with sentinel node biopsies during which no further cancer was found, but several forms of precancerous tissues were identified by pathology. My staging then was listed as Stage 1a, FIGO grade I. During the same surgery, another team addressed my lifetime of urinary incontinence by placing a mesh sling behind my urethra. (I can say now that that was a VERY good choice.). So, my post-surgery period was a bit more involved, but, like Helen, I followed the prescribed post-surgery recovery and gradually moved past that. I benefitted from pelvic PT to address high time in my pelvic musculature.
I continue with a gym and home exercise programs and work with integrative medicine to try to reduce the chances of a recurrence. I hope I will be lucky enough to avoid what Helen and others of you have experienced with recurrences at the vaginal cuff and highly value my surveillance appointments, as they have given me reassurance each time. I hope that for each of you, too. At no time have I felt sick, but I have not endured radiation or chemo.

I hope you will have a clear plan soon, @njp515, and that the chemo you underwent, @cookercooker, has been effective in optimizing your health. Thank you so much for adding your perspective. I am always grateful for one more data point in the range of possibilities we might face and to hear how others have coped.

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@naturegirl5

@njp515 It's good that your appointment with the oncologist is coming up soon. The waiting is really difficult or at least it is for me. What day is your appointment with the oncologist? How are you feeling today?

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Well, in about 5 hours I'll have my first oncology appointment, and we'll see what my future holds. I'm hoping that she will order a PET scan, so that I can have some assurance that nothing else is lurking in my body, but I understand that getting this hysterectomy done is a priority. I'm also worried about morcellation during the hysterectomy, and I need to know if a vaginal procedure is safe for me (uterus is 6.9 x 4.1 x 4.6). I will update at some point after this milestone!

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@njp515 I hope that you get your questions answered at this appointment and that surgery is scheduled very soon.

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@njp515

Well, in about 5 hours I'll have my first oncology appointment, and we'll see what my future holds. I'm hoping that she will order a PET scan, so that I can have some assurance that nothing else is lurking in my body, but I understand that getting this hysterectomy done is a priority. I'm also worried about morcellation during the hysterectomy, and I need to know if a vaginal procedure is safe for me (uterus is 6.9 x 4.1 x 4.6). I will update at some point after this milestone!

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@njp515 Your appointment with your oncologist was last week? What did you learn at your appointment? Were your questions answered and is there a date planned for the hysterectomy?

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@naturegirl5

@njp515 Your appointment with your oncologist was last week? What did you learn at your appointment? Were your questions answered and is there a date planned for the hysterectomy?

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Well, I had my first meeting with the oncologist last week which was both a consultation and an exam. She then recommended a total hysterectomy done robotically, with one caveat. Because I have a giant hiatal hernia, she needs to see a CT Scan of the abdomen, so that was ordered and done today. At the same time, she scheduled the hysterectomy for Dec 30th. She seemed optimistic about the cancer being contained in the uterus lining, but could not be certain until after the hysterectomy. I will not have the analysis of the CT Scan for 3-5 days, but perhaps the oncologist will get it earlier than that and I'll know soon whether there are any changes in the course of action.
Meanwhile, I did get back the results of my genetic testing that the gynecologist ordered back in November. It was good news, I think, in that it summarizes as "Your genetic result was NEGATIVE"; This means that no clinically significant mutations were found in any of the genes analyzed as part of your testing. -- Frankly, this was a pleasant surprise, since there is deep history of cancers - breast, pancreatic, colon -- in my family.
So, now we wait and wait some more. There always seems to be one more hurdle to get over!

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