Newly diagnosed, question regarding scans prior to surgery

Momschooling
Momschooling Member Posts: 112 Member
edited April 2022 in Uterine/Endometrial Cancer #1

Hi,

I was on the prostate cancer board previously for my husband, now 2 yrs later I am here on csn for myself...This has all happened so quickly, one moment I was feeling normal and the next not at all :( I am 48 yrs old (have regular periods, no abnormal bleeding) and at the end of August developed extreme pelvic pain which was thought to be a UTI (it wasn't). I then went in for a pelvic exam and pap smear which was normal, but my dr sent me to have an ultrasound due to the pain. That showed loads of small fibroids and one very large, also 16mm lining and an enlarged uterus. She then did an endometrial biopsy, that came back as complex atypical endometrial hyperplasia and I was sent to gynecology oncology. Today I had my appointment and set up the hysterectomy for early January (trying not to freak out, I am a baby when it comes to surgery) and was also surprised to see the second look at my pathology for the biopsy, which came back as CAH with foci suspicious for endometrial endometroid carcinoma FIGO grade 1.

Now here's the question... I explained all my awful pains/pressure I have been having and asked for a CT scan/MRI etc to make sure where the pain was coming from, in case this was metastatic (I probably read too much into my circumstance due to my husbands cancer, which was metastatic), but she insisted that those are only done post surgery and that she thought my pain wasn't due to the CAH or cancer and probably fibroids or simply unexplained pelvic pain. Is this common, drs not wanting to do scans prior? This is a good place I am going to, they are the best in our state but I was a bit baffled why drs wouldn't want to check out things more prior.

 

Also, I am starting megace while waiting for surgery, has anyone else done this?

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Comments

  • MAbound
    MAbound Member Posts: 1,175 Member
    edited November 2021 #2
    Second opinions

    I had both a PET scan and an MRI after positive biopsy showed a Grade 3 endometrial adenocarcinoma. The point of it was to help my gyn oncologist have a good idea of how far he needed to go to do my surgery. I ended up having an open abdomen radical hysterectomy which is basically "the works" because of the size of my uterus (robotic surgery not an option) and what lit up on my tests. I also was on Megace for 10 days before I was diagnosed to see if it would stop my "period", but that didn't help at all. Megace can impede cancer, but it won't cure it.

    The cancer that showed up on your biopsy is a grade 1 which means that your tumor has more normal cells than cancerous (grade three indicates mostly cancerous cells and a need for more aggressive treatment after surgery), but you have an enlarged uterus that could make the robotic surgery option more challenging. Different doctors have different opinions and practices as to how they want to proceed, so perhaps because you are a grade 1, they might not feel those expensive tests are needed. If you have concerns and questions regarding what is being proposed for you, it might be beneficial to get a second or even a third opinion so that you can proceed with some degree of confidence. This cancer does not grow fast, so you have time to do this. 

    Good luck!

  • Forherself
    Forherself Member Posts: 1,018 Member
    edited November 2021 #3
    Welcome to the board

    it is hard waiting for answers.  There is lots of information here on what to expect and how to prepare for your surgery.  I had both an abdominal incision and robotic puncture wounds, but my recovery was remarkably easy.  I did take pain pills for 3 days and kept moving.  You can read everyone's story by clicking on their name.  I can comment on scans before surgery.  My local pathology report was endometrial intraepithelial neoplasm.  A precursor to endometrioid cancer.   BUT I was referred to the U of Washington for surgery and they redesignated my pathology slides to serous endometrial intraepithelial carcinoma.  I had to rush in and get CT scans of my entire abdomen just days before my scheduled surgery.  So maybe they are not scanning you because you have precursor cells for endometrioid, which is a slower growing type of cancer.  Early stage endometrioid cancer oftentimes does not require any further treatment. CT scans have a lot of radiation so they are not done unless needed.  

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #4
    Thank you, the way you put it

    Thank you, the way you put it makes more sense. I was guided to the preferred hysterectomy plan of treatment however she did talk about hormonal with constant biopsies if I was against surgery, but considering I am already dealing with fibroids that require a hysterectomy and I don't want any more children, this seemed the safest way to go. I will not be having a robot surgery, I will have the hope of a laparoscopy with a wider incision around my belly button, however if my uterus is too large even for that, I will get the abdominal. She is planning to remove everything except ovaries, but when she gets in there if things look bad, those will go to. When I signed the paper there were so many possibilities during surgery I had to sign off for in case the cancer is much worse, and regardless they will be testing my lymphnodes.

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #5
    This gives me hope, I am very

    This gives me hope, I am very worried about the pain but you did really well. Supposedly if it ends up being just laparoscopy then I go home the same day, which seems both a relief and scary  (I live in a town home with two long flights of stairs) If it turns into abdominal then I have to stay several days. 

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    edited November 2021 #6
    Sorry you have to be here

    Sorry you have to be here but I'm glad you found the board.  My surgery was robotic and late afternoon/early evening, so I went home the next day.  Less than 24 hours was still considered the same day.  I have one flight of stairs and the surgeon told me I could go up at night and come down in the morning, but not to be going up and down them all day.  I didn't need any pain medicine other than the ibuprofen afterwards. 

    They diagnosed my cancer by way of a D&C, but did not do any scans prior to surgery.

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #7
    How was the initial getting

    How was the initial getting up the stairs? When I enter our home, I immediatley have to come up very steep stairs just to get to the living/kitchen area, but then an additional set to the bedrooms. I am considering camping out in the recliner on our main floor the first 24 hrs so I won't be climbing 2 sets of stairs. How long before going up and down as normally was not a problem? That's great news about the pain meds!

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #8
    Should I be okay alone after

    Should I be okay alone after a few days? My husband can work from home probably for the first several days, I am thinking to have my son fly out and stay another several, if he can take off or work from home. I am hoping to be okay without help but I want to plan ahead.

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited November 2021 #9
    Stairs were ok for me

    I had laparascopic and went home 15 hours after surgery. I took one ibuprofen after getting home, never needed more, and was surprised to find the stairs were no problem at all. I know it's different if you're not able to have the laparascopic -- a family member who lives on the third floor of a 3-floor walk-up had about a week where going up and down the stairs was difficult; she limited it to once a day and then after that found things were ok. I hope all goes well for you.

    Tamlen

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited November 2021 #10
    My husband went back to work

    My husband went back to work two days after my surgery, at my insistence. He checked in with me a lot and I was supremely careful about not lifting over the 10-lb weight limit, but things were fine and I was happy to have some time to myself ;) For you, it will probably depend on how surgery goes.

    Are you planning on having your husband stay with you after the surgery, even overnight if needed? Many hospitals do that now. My husband stayed with me and I was really grateful not just for his company, but for the notes he took from doctors and nurses when I was still too drugged to remember what they said later. Plus, I was determined to get out of the hospital ASAP and having him there to walk with me around the halls was really helpful, so I didn't have to wait for a nurse to be available, and I think it helped me get mobile faster.

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #11
    Yes, I want him with me the

    Yes, I want him with me the entire time lol and I hope it will be allowed. With covid so many thing have changed, but I know he can stay with me at least during the day time. I have read a lot of horror stories regarding this surgey, but am very pleased to read these positive experiences!

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    edited November 2021 #12
    Stairs

    For me, the stairs really weren't a problem.  My husband escorted me up and down at first and was agitated that I went down one step at a time (both feet on each step) but I told him I always come down that way first thing in the morning because of my bad knee - nothing to do with the surgery.   I think I was told to limit it to one trip up and down for a week and then see how I felt.  But I did have the robotic surgery so only the small incisions.

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    edited November 2021 #13
    It's good to plan ahead

    My husband worked from home for a few days, but his home office is in a separate building from the house.  He was available, but I was fine in the house alone.  He did stay with me in the hospital overnight, for which I was grateful, as I wanted to eat ice chips.  My left arm was strapped to a board so I needed some help with it. 

  • MAbound
    MAbound Member Posts: 1,175 Member
    edited November 2021 #14

    The recliner can be your best friend after this surgery whether you have laproscopic or abdominal surgery, so go ahead and set everything you think you'll need around it before you go to the hospital. Just be sure to have Gas X on hand and get up and walk around a lot on that floor while awake to help minimize the gas pains that can otherwise be quite uncomfortable after this surgery. You'll be glad you did!

  • Dak82
    Dak82 Member Posts: 109 Member
    edited November 2021 #15
    Welcome—even though it’s a club you’d rather not join

    I found this board a few weeks after my surgery in Dec 2020. I live in Utah and am so lucky to be getting treated at a Top 10 Cancer Institute--Huntsman cI in Slat Lake City affiliated with the University of Utah. My gyn could tell at my appointment that my case wasn't good. When your doctor says things like "this is not what I was expecting" it gives you cause for concern. My biopsy came back as 3c1 grade 1 which was changed to 3c2 grade 3 after surgery. I was much more advanced than you although I wasn't feeling any pain really. Doctors do the scans to make sure their proposed course of treatment is correct especially if it looks complex! I've had so many scans in the past year, when I expressed concern to my radiation oncologist he just looked at me and said "I think exposure to radiation is the least of your problems" and I have to agree. I don't know if I've updated my story lately but suffice it to say I'm a fan of scans due to my situation but if your doctor is confident in the initial diagnosis they may not have to.

    Best wishes and I sure hope the simplest path bears out!

    Deb

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #16
    I agree, we have a nice

    I agree, we have a nice recliner from when my husband had his cancer surgery and it's been amazing for him! I plan to use that for sure, and thanks for the gas x tip.

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #17
    I agree, I really need to

    I agree, I really need to come up with a plan and also buy items I might need beforehand.

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #18
    You seem to be doing amazing

    You seem to be doing amazing considering all you faced! I am concerned about my pain but the drs so far aren't...I guess it's a good and bad thing, good if it's true but bad if it turns out to be something much worse. The oncologist didn't seem that concerned (like I was the typical kind of case) she told me to take a few weeks to think about it regarding going hormonal treatment vs surgery but I did not and signed the papers for the surgery right away. 

    My husband has had too many scans to count with his cancer and no one ever mentioned any concern about radiation. 

     

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    edited November 2021 #19
    Doctors Downplay Uterine Cancer...sometimes

    My initial oncologist (cue the villain music, the da da DA!!!!) was very casual about my initial diagnosis, and mentioned that many women with my (low) grade of cancer put off their surgeries for months, in order to go to Europe, for example. NOT kidding. I thought, "What the hell. He doesn't really know what's in there until it's out," and sure enough, once it was out and tested in the lab (biopsied, etc.) and they had specifics, he had a grave face and said, "I was surprised, and I don't like surprises." Cue the "wow, I was wrong" music.

    Anyway, don't go to Europe. I pushed my gyn onc to schedule my hysterectomy (salpingo oopherectomy, etc) ASAP, and then I struggled and suffered as they kept rescheduling and pushing my surgical date further into the future. I truly thought I was going to have a mental collapse. Fortunately, I had CBD/THC gummies, and I don't care who knows it. I had NO good support from ANY doctor during that time, and I was not doing well. I got through it, but my results included two poor prognostic factors that make me a High Intermediate Recurrence Risk. Don't let those doctors pretend they know with certainty what's in there until it's out.

    Hope I'm not rocking your boat, but I have lost a lot of faith in doctors, surgeons, oncologists, and if I could give any advice, it would be to avoid male oncologists, and try to find a superior facility for your care. 

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #20
    Thank you so much, this board

    Thank you so much, this board seems to be very supportive and I plan to update once I have the surgery. I lurked here for a while when I started to feel pain, and learned a lot about this type of cancer over the past 2 months from reading posts.

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited November 2021 #21
    I understand about not

    I understand about not putting all your faith into drs these days, I feel the same way (my husband's initial dr said he was 95 percent sure he had bladder cancer, even when I questioned why his tumor was mainly in his prostate, he almost seemed annoyed when the biopsy showed it indeed was prostate cancer) and I am just trying to prepare myself mentally for what comes my way.... I hope you are doing much better? I am btw considering cbd to help me after surgery if needed, I have a horrible reaction to heavy duty pain pills, I can't take them so I am thinking of others ways to help myself. My dr said early January was the soonest available  for surgery:( She did prescribe me Megace after I asked if there was any type of treatment I could do while waiting, but after reading the side effects I am too scared to try it out. I am working on getting myself as healthy as possible for surgery, I lost about 15 pounds since this all started and am focusing on losing more, plus I have to get a tooth extraction prior and my bp is already borderline high, so that medicine seems risky to my overall health? I will ask her opinion on my taking it or just waiting for the surgery, I am very confused what would be best...

     

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