r/endometrialcancer • u/Leapinglizzard75 • 3d ago
Waiting for the End? - High Risk Surgery - Feeling Hopeless and Helpless - Endometrial Cancer
I ended up in the hospital on 7/25 for hemorrhaging that I couldn’t control. I was given Provera and sent to my local OBGYN on 7/28 and had a biopsy. On August 1st at 1:04 am, I found out I had Adenocarcinoma of the endometrium, endometrioid type, FIGO grade 1. The wait has been agonizing.
My first appointment with the James Cancer Center in Columbus, Ohio, was on 8/22, which is exactly 21 days after I found out what happened. The dr ordered CT scans, but isn’t this wonderful, the insurance company said it can take 14 business days to approve them. On top of this, my surgery date is 9/10, and no one can get me in for a CT before this point.
On top of all the waiting, which only makes things worse for me, I am very weak. The Provera used to stop the bleeding puts me in a coma, and I’m only taking 10 mg instead of the 20 mg I am prescribed, or I would be out cold all day. I like my dr, but I am PETRIFIED.
First, I weigh 344 and have a BMI of 67, so I am a high risk patient. He told me he would try. He said the robotic procedure is the best chance because there’s little blood loss, and my hemoglobin is already low at 10, and less time under anesthesia. He told me they use the Trendelenburg method and I will be 30-40 degrees on my head so they can fill me up with gas.
Here's the problem. When they use the Trendelenburg method and you’re obese, they find that it shifts a lot of weight to your lungs and heart, causing further complications. He said that they may have trouble keeping my oxygen at a good level. So, he said if my oxygen drops, they will do a D&C and an IUD because it also treats cancer.
I am so upset. First, everything is about my weight, and I know I am a big girl. I have lost over 70 lbs as it is, so I am trying. I hate that I may have to just get an IUD and let this monster stay inside my body. While it says I am a FIGO 1, everyone knows it can be anything when they open you up. It could have started somewhere else and there are just so many variables.
The waiting game is so hard. I just keep thinking that I don’t want to leave this earth yet. My parents are older, and I don’t want to go before them, as it would crush them. I keep hearing about the risks, and they act like I am just at death’s door. I would love to hear from anyone else. I am tired of bleeding all the time, but I feel like I want to run away. I am 50 years old, and I have never had an operation in my life. I’ve never even taken a pain pill or more than one Aleve. Now they’re going to be giving me steroids, insulin, and all this stuff when I have such a hard time with meds anyway?
I could really use some encouragement because I feel like I am just waiting to die! ☹
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u/sanityjanity 3d ago
Your weight may make surgery more risky, but this is still something the surgeon does all the time. You are also allowed to seek a second opinion, if you want one.
Have you talked to the nurse navigator? Ask your team if there is a therapist with experience with cancer patients that you can talk to.
You are only 50, which is very young for a cancer patient. You're actually probably lower risk than a lot of their patients. There is going to be a good chance that surgery will go fine.
Mine did. I think yours will, too.
After your hysterectomy, you are going to stop bleeding, and then you are going to stop being anemic, and you are going to feel so much better. You're going have so much more energy, and you are going to get stronger and stronger.
I'm pulling for you.
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u/sanityjanity 3d ago
Have they run your hemoglobin? I had to get blood transfusions before surgery, and iron infusions afterwards. I didn't love either, but they both helped immensely.
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u/Leapinglizzard75 2d ago
Mine is 10.2 as of 1 week ago but he's had me doubling up on iron. Not out of the range for surgery, though they want it to be higher.
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u/Antique-Anteater-988 3d ago
Very sorry that you’re in this place but you’ll find lots of encouragement from many ladies in this community. No matter what your BMI is, the wait between cancer diagnosis and treatment is excruciating long.
At this point, you’re only a little over a week out from surgery, so I’d respectfully encourage you to focus your energy on post-surgery recovery. You’ll find copious amounts of posts on the hysterectomy sub.
I was fearful prior to my surgery as well as radiation. I found that my googling and watching YouTube of surgeries, etc was only feeding my fears and increasing my anxiety. I stopped looking online to preserve what was left of my state of mind.
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u/Ready-Sherbet-2741 3d ago
I’m in a similar spot to you, bleeding and waiting for my hysterectomy. When I got diagnosed I went into shock and got very scared. But here is the thing, I can only keep crossing each bridge as I get to it. So your next bridge (like me) is surgery. The doctors are going to keep you safe. Even if it means an IUD this time for you, you can work on trying again for the surgery. We both have to keep going. And yes we’ve slipped into the alternate universe of cancer with all that entails but the only way out is through. Hugs.
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u/Kitchen_Habit_7803 2d ago
Please send me a private message I’d love to tell you more about my cancer journey!! there is a light to the end of this tunnel 💓
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u/Ready-Sherbet-2741 2d ago
Thanks so much for the DM offer. I want to take you up on it but at the moment I promised myself not to think about any future stuff except the surgery. I have to get through another 16 days and I am determined to just tick them off. If I can I’d love to DM you post surgery. And thanks again for your kind offer.
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u/Leapinglizzard75 2d ago
Thank you so much! I need all the encouragement I can get. I will say a prayer for your journey as I am on my knees constantly about mine.
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u/Ready-Sherbet-2741 2d ago
I will be thinking of you too. I’m trying hard (so very hard) to be optimistic.
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u/no-user-names- 3d ago
Many women who have a Grade 1 have only an IUD for treatment because they are trying to preserve their fertility…
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u/Leapinglizzard75 2d ago
Yeah, no! I adopted my kids so this uterus did not a thing for me except give me grief. I just want her gone.
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u/no-user-names- 2d ago
I adopted mine!!!! YES: from being a teenager onwards my uterus has been nothing but an utter bleeding pain - literally and metaphorically!
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u/sparkle_llama 2d ago
I am a similar weight and was when I had my laparoscopic surgery last year. I came through just fine. Can they try a different med for the bleeding? I forget the one that helped me pre-surgery - something that starts with a T Acid.
Sending you so many good thoughts. This is not the end for us!
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u/Leapinglizzard75 2d ago
I am only a week away so I will stick with Provera. I am glad you had a smooth operation and pray mine is the same.
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u/Careless_Block8179 3d ago
I’m sorry you’re dealing with all this. It’s a lot and I get why you feel so anxious!
Step one is realizing that what you’re experiencing is just anxiety. Maybe it will go badly. Maybe the adenocarcinoma is worse than they think…Anxiety is real, but the things you’re worried about may never come to pass. So these feelings are good only as far as they help you, like making you ask questions of your doctor so you can feel comfortable and in control of your next steps.
This post brought me some comfort before my own surgery: https://www.reddit.com/r/hysterectomy/comments/193nuy5/some_surgery_info_from_an_or_nurse/
You can only make the next logical choice for what’s ahead of you. None of us control the outcome of any of the choices we make, we have to just choose the best thing and hope it works out. It sounds like the surgery is your best choice with the information you have. And what if it’s life changing? What if you go on to continue losing weight, improving your health, and living a beautiful life? What if this is a moment you look back on later as a very important turning point in your life? There’s a much larger possibility that this will improve your life than that everything will go wrong.
I would keep calling your insurance company. Explain the situation to them. Ask if there’s anyway to get this approval done faster. Same for the CT scans—you need them done before surgery, do they have any tips for how to get seen sooner? Could they put you on a cancellation list? Call them. I’ve had more help from normal ladies who work at medical facilities than many doctors I’ve seen, and they may know of other facilities that get people seen faster. If that fails, call the doctor’s office that ordered the CT scans and ask them what you should do. They may be able to pull some strings and get you in somewhere.
Obviously, this is all much harder while you’re medicated and super out of it, so if there’s anyone who can help make these phone calls for you, ask them to help you ask around and even set up an appointment. It might take some digging, but you never know who might be willing to squeeze you in or have you come in early for an unofficial time slot. Keep going, you’re doing great.
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u/Kitchen_Habit_7803 2d ago
Hi, if you’d like to private message me, I just recently had a hysterectomy at 26 and carry extra weight as well and I’d love to tell you about my experience
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u/ResentfulOreo 2d ago
Been there, it sucked. I bled like that for over 2 months, because I wasn't able to get in to oncology for that long and the meds they gave me didn't help.
Some things that helped me:
The level of bleeding does NOT mean anything about the severity of the cancer. Several people in my family have had endometrial cancer (thanks, Lynch syndrome!) and the others didn't have anywhere near as severe bleeding as I did. My family member had a checkup with her oncologist and told her about me, the oncologist said "just tell her heavy bleeding doesn't necessarily mean it's bad!" And it tuned out mine was the only one that didn't need chemo or radiation. Go figure.
You can certainly tell them that you want the hysterectomy, and do NOT want the IUD. They can suggest any plan they want, but they cannot override your consent. Have a discussion. If you'd rather have an open hysterectomy, even if that means a transfusion, tell your surgeon that. I'm also plus sized, and because of all the bleeding, my doctor told me that if they needed to convert to an open surgery I would probably need a blood transfusion, and they were prepared for that. Thankfully that was not needed.
Medications are not bad. They are tools. And this is the time to use the tools you have access to. Here's the thing about pain: It's much easier to keep it under control than it is to control it when you're in a lot of pain. So take the pain meds. Use the ibuprofen, or aleve, or whatever your doctor recommends, regularly until the pain is almost gone.
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u/Leapinglizzard75 2d ago
Thank you. The support from all you wonderful ladies has lifted my spirits today. 😁
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u/Scary-Height-5943 2d ago
I am sorry for your diagnosis. Tue doctor doesnt have to do the Trendelenburg position or laprascopic. He could do the surgery amdominally. As someone mentioned, see a 2nd option. Also, it is totally okay to have a CT post surgery. I did. Hang in there
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u/MeanMugginMin Stage IB 2d ago
I've been in this situation. I was 48. Ended up with 3 ER visits, bleeding to death. They also were going to do a D&C on me. It ended up not stopping the bleeding. I was on progesterone, a depo shot, and txa pill. I ended up with a massive saddle PE and dvts 3 days after the D&C, so back to the ER. I needed to be on a hep drip, good for clots, very bad for bleeding. I was told I needed immediate surgery to remove the PE or I would die, but I was already dying from blood-loss. I survived that surgery, and they did a uterine artery embolization while they were in there. The bleeding slowed, but not stop. They found another hospital to accept me (Stanford) and shipped me off at 1am for a long ass ride up to the bay area. Because my heart and lungs were mangled from the clots they couldn't do robotic. I had an open surgery with vertical cut. They took everything, plus a big tumor/cyst of 14cm. They really didn't know if I'd survive. I had adenocarcinoma, with 81% invasion. It was MISSED on an in office biopsy and the D&C. I was turned away from UCSF cancer program "because I didn't have cancer" Stanford stepped in last minute and accepted me. I am alive because of their gyn cancer program.
My large belly cut actually healed faster than the tiny cuts in my groin made during my clot removal and artery surgery that were done first! Maybe see if you can find a teaching university? It makes a huge difference. They literally told my mom that my survival was 'iffy' but they'd try their best. It sucked to be 5 hours from home, alone and that sick, but I'm certain I lived because the team was so talented.
Hugs from someone who's been there! Oh! It was also my first major surgery ever. I'd had the D&C a few days prior, but before that the most invasive thing I'd had done was a tooth pulled! I totally understand the terror.
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u/Leapinglizzard75 2d ago
Youre a walking miracle.
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u/MeanMugginMin Stage IB 2d ago
lol, I haven't figured out why I'm still here! I got 6 units of blood before my surgery, I was absolutely spewing blood. Before they sent me to Stanford, I was in the ICU, and my mom said I turned gray.
Before all this crap, I actually had a stroke. Left me paralyzed on left side. So that was an existing concern. I'd finally learned to walk again, then BAM, cancer. My late 40's have SUCKED, lol. But hopefully I'm done with all the bad stuff? 6 months of PT, and I'm walking again....like a frat boy on his first spring break trip, but I'm walking! lol.
Don't forget to advocate for yourself. Bug the office about getting in sooner. Cancer is urgent.
There's a bright side. I haven't bled a drop since! So so so glorious! I'd always been a heavy flow gal, but the last few years before my body rebelled...I was in diapers. Yeah. That's fun at work!
The instant menopause hasn't been too bad. The night sweats kicked my butt for a bit, because it was gross, but survivable. Hot flashes aren't a party either, here in cen cal, aka the devils armpit where it feels like it's 700 degrees on a good summer day, lol.
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u/Tneepon 2d ago
I was very similar to you in my journey. I was around 300 lbs at the time of surgery. The doctor had problems doing the hysterectomy and ended up making an abdominal incision and removing the uterus abdominally. I had a few other things come up during the procedure but was really thankful the Dr was able to pivot from the robotic surgery to the other surgery. I probably would have had a breakdown if they hadn't been able to do the surgery.
I did stay overnight one night at hospital and went home to heal the next day. I did have to have another surgery to fix the vaginal cuff which wasn't closed properly.
I don't mean to scare you with my issues, I just wanted to tell you how I got thru the process. Took one problem at a time and just had to put aside all the what ifs with cancer.
I also have aging parents and was single with no one else to support me. I tried to not ask things of my parents and did accept help whenever someone volunteered to help.
It's scary but you can do hard things! Just tackle one issue at a time.
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u/EdAddict 2d ago
I’m so sorry you’re having so much trouble with bleeding. Have they done an infusion? Or recommended any other drugs, like Megace?
Figo 1 is the least aggressive form, so there might be some comfort to take from that. As far as your weight, I weigh 300 lbs and my team performed a successful robotic assisted laparoscopic surgery on me with zero issues.
I was Grade 2, Stage 1b. Prior to surgery, I had to wait for my scans to be approved, the results to come back. It was agonizing, but I had had a colonoscopy and a lung scan the year before that were clear, so it wasn’t as bad. If they do find something on your scans, it’s likely very early if you haven’t experienced pain in those areas, reduced appetite, or unexpected weight loss.
It’s scary, from the first mention until it’s out. And even then, there’s a niggling worry in the back of your mind somewhere about that small chance of recurrence. But this Reddit sub and my cancer team have been amazing at keeping me grounded. You’ve got this!
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u/Leapinglizzard75 2d ago
Yes it's agonizing the whole process, but I am on a medicine to try to stop the bleeding. It works sometimes and other times not so well
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u/Ecstatic-Ad264 19h ago
I’m so sorry you are going through this. It’s terrifying when you first get diagnosed. Im almost five years out from my diagnosis and still fighting it. Good luck to you. ❤️
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u/Owl-Eyes-25 3d ago
Sending you hugs! That sounds all consuming and no wonder you’re feeling worried. The anticipation and waiting for answers. I hope you get what you need and soon!
I was shitting myself for the operation and my therapist told me to go in emotionally prepared. So I thought about how to connect with the room I was going into, the people working on me and I did some guided meditation and breathing exercises which really helped. I imagined being a tree and rooting into the ground and feeling steady. It was the only thing that I could control! And it really helped me.