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Endometrial Adenocarcinoma: Concerned I will feel sick with treatment

Posted by RefluxGoAway @njp515, Dec 5, 2024

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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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 19, 2024
In reply to @njp515 "Well, I had my first meeting with the oncologist last week which was both a consultation..." + (show)
@njp515

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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@njp515 Thank you for coming back and sharing what happened at your oncology appointment last week. It's good that you won't have to wait long for the hysterectomy as December 30 is so close in time. I'm hoping that the CT results for the hiatal hernia are informative for the oncologist and do not change your treatment plans.

Good news, too, on the results of the genetic testing. And now you wait for the CT results. Will you please let me know the results of the CT?

REPLY
1 reply
RefluxGoAway | @njp515 | Dec 23, 2024
In reply to @naturegirl5 "@njp515 Thank you for coming back and sharing what happened at your oncology appointment last week...." + (show)
@naturegirl5

@njp515 Thank you for coming back and sharing what happened at your oncology appointment last week. It's good that you won't have to wait long for the hysterectomy as December 30 is so close in time. I'm hoping that the CT results for the hiatal hernia are informative for the oncologist and do not change your treatment plans.

Good news, too, on the results of the genetic testing. And now you wait for the CT results. Will you please let me know the results of the CT?

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I just received the results of my CT Scan from last week. The bottom line is "No evidence of metastatic disease in the chest, abdomen and pelvis," and lymph nodes are clear. They did confirm that my hiatal hernia is "giant" and they also found a second umbilical hernia. They also found scattered atheromatous calcifications of the aorta and coronary arteries, so this will be the next battle to fight after this hysterectomy. But, it does look good so far. Next Monday for the surgery and then a few days later for the next set of biopsy results. Thanks for all your support!

REPLY
RefluxGoAway | @njp515 | Jan 3 5:42am

I had my robotic hysterectomy on Dec 30th, and spent one night in the hospital. I experienced not much pain, but plenty of discomfort especially the abdomen and lower back. The surgeon said it went very well and did not see anything new or alarming (not her exact words; I was groggy). I did not require any pain killers other than Tylenol every four hours. I started passing gas the day after surgery, and from then on it's been constant and noisy! I was surprised that they put me on a blood thinner (Eliquis) for two weeks to stave off clotting. I've really never had a problem with clotting, but they must have seen something in my pre-op blood tests that required them to prescribe it. I'm eating morsels, but not real meals. I have no problems peeing and have had two slightly uncomfortable but not strained BMs and only took Senna once, and showered multiple times. I am not having any noticeable discharge. I took one Oxy the night before last mainly to help me get some sleep but I don't think I'll need it again; it leaves me feeling foggy.

Now I'm starting my fourth post-op day, and I came down the stairs by myself, made my own breakfast, and cleaned up the kitchen a bit. I'm still pretty fatigued and need to rest frequently and wouldn't dare to lift anything heavier than a book. The five 'portholes' are still bandaged and starting to get itchy.
No additional information like the surgical report or final analysis has reached me, so I don't know what my Stage is yet or if I'll have to have any additional therapies. I have my post-op in about nine days, and I doubt I will hear anything before then.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 12 11:07am
In reply to @njp515 "I had my robotic hysterectomy on Dec 30th, and spent one night in the hospital. I..." + (show)
@njp515

I had my robotic hysterectomy on Dec 30th, and spent one night in the hospital. I experienced not much pain, but plenty of discomfort especially the abdomen and lower back. The surgeon said it went very well and did not see anything new or alarming (not her exact words; I was groggy). I did not require any pain killers other than Tylenol every four hours. I started passing gas the day after surgery, and from then on it's been constant and noisy! I was surprised that they put me on a blood thinner (Eliquis) for two weeks to stave off clotting. I've really never had a problem with clotting, but they must have seen something in my pre-op blood tests that required them to prescribe it. I'm eating morsels, but not real meals. I have no problems peeing and have had two slightly uncomfortable but not strained BMs and only took Senna once, and showered multiple times. I am not having any noticeable discharge. I took one Oxy the night before last mainly to help me get some sleep but I don't think I'll need it again; it leaves me feeling foggy.

Now I'm starting my fourth post-op day, and I came down the stairs by myself, made my own breakfast, and cleaned up the kitchen a bit. I'm still pretty fatigued and need to rest frequently and wouldn't dare to lift anything heavier than a book. The five 'portholes' are still bandaged and starting to get itchy.
No additional information like the surgical report or final analysis has reached me, so I don't know what my Stage is yet or if I'll have to have any additional therapies. I have my post-op in about nine days, and I doubt I will hear anything before then.

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@njp515, how is continued recovery going?

REPLY
1 reply
RefluxGoAway | @njp515 | Jan 12 12:50pm

It's been pretty easy so far. I'm surprised how little gas I had in my body after surgery. I went out for lunch for the first time yesterday, and although it was icy out, I managed to stay on my feet. Bathroom visits are regular and only a little uncomfortable. Belly button area is really sore. I'm able to sleep through the night, thank goodness, and even on my side with supportive pillows!

I finally received a copy of the surgical pathology report and it is mixed results. No evidence of metastatic carcinoma in pelvic sidewall, lymph nodes, fallopian tubes or ovaries, but 83% invasion into the myometrium and 3% into stroma. The pT category is pT2 and pN is pN0. I don't know what means for staging. I have to wait until Tuesday to see the oncologist.

Hoping for the best!

REPLY
RefluxGoAway | @njp515 | Jan 17 6:31am
In reply to @colleenyoung "@njp515, how is continued recovery going?" + (show)
@colleenyoung

@njp515, how is continued recovery going?

Jump to this post

I finally saw the oncology surgeon who did my hysterectomy. It was the first time I saw the surgical report. The tumor remains a grade 1 as I mentioned earlier, but because of the myometrium and stroma invasion the recommended therapy is pretty harsh, I think.

She recommends 8 weeks of radiation (I think beam), 5 days a week, with one day a week of chemo (4-5 hour session) -- just to START. I was floored. I don't understand why all of this is necessary if everything was removed as part of the hysterectomy. Does this sound excessively aggressive?

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