i'm scheduled for pre op appt

good morning,
i had the same surgery 3 weeks ago, but i also had HIPEC. ( a hot chemo into my belly just after surgery- Not everyone is a candidate for this and it is not performed at every hospital)
I was in the hospital for 4 nights. I had an abdominal block for surgery, which made things very manageable for the first 4 days. The days in the hospital were rough at times, getting out of bed the first time, and back into bed was hard. PT helped with that, just make sure they have PT be able to help you get back to bed from the chair the first time. My nurse failed at it, and made me cry. Once I got the hang of it, it was OK. Let Physical Therapists help for sure. I walked the next day after surgery, around the nurses station. Getting up and moving is your friend. I was not prepared that I could not take care of my own bathroom needs ( could not turn my body to wipe), nurses were so helpful, even though i was mortified. And when I got home, first few days my husband had to help. That was worst thing for me. I used pain meds for about 10 days total. I am using tylenol now. I am sleeping with a wedge pillow and body pillow and other pillows around me. Hard to sleep on my back for the first 10 days or so. i am 23 days out, and can sleep semi on my side.
I am walking now in my neighborhood, i am up to 3/4 mile each day. I wear an abdominal binder which was provided by hospital. (ask if they do not offer). That helps when you have pain/discomfort.
I still do not feel "normal". It is a slow and steady recovery, that you will just have to accept. I still have discomfort, and not ready for my own bed. Your insides are learning to adjust to a new normal. It takes time.
Oh, and gas. UGH. I had horrible gas pains even up to my shoulder while in the hospital. and it was impossible to lay on my left side to try to pass gas, walking was best for that. Good luck to you. Go easy on yourself.
A good pillow to hold on your incision when in car, and even in house at times (when you sneeze or cough) will help.

Hello @mommacandy - Congratulations on your upcoming surgery. I had my total hysterectomy w/ BSO in January 2024. One of the best things I ever did for myself. I can't really help w/ pre-op questions because my gyn/onc surgeon has been doing this forever and really took care of imparting necessary info via printed material and pre-op consults.

I had robotic/laparoscopic surgery. Nothing was done but female organ removal since we already knew I had stage IV endometrial cancer (lung mets); no lymph node exploration. The surgery itself lasted about 3 hours because surgeon had to delicately but forcefully scrape my uterus away from her neighbors - she was hanging on for dear life. Post-op recovery was gradual, with chicken parm for a late lunch (obviously hadn't eaten in like forever). Eventually operation narcotics wore off and I was in severe pain. Nurse took care of that right away with more narcotics, and that was the last time I needed prescription meds. Ever after meds were industrial strength ibuprofen and Tylenol, for about 4 days after surgery. They did the trick.

My surgeon wanted surgery to be in and out in a single day. I asked for hospital overnight, and he acknowledged that Medicare would pay for 24 hours (i.e., overnight) in hospital. And it did. My overnight stay was billed the same as if I had been discharged the previous day. So that might be something to ask about if you are interested. I really appreciated the nurses helping me with those first few toilet visits.

After discharge I had a friend stay with me for 3 days/nites. She was a great help the 1st 2 days and by the 3d day we were able to enjoy a real visit and get out of the house with her driving. She did not need to help me at nite, but during the day she brought me stuff and helped me get up and down. I could have done it myself, but it was really nice to have someone else do the heavy lifting (literally).

As instructed, I walked every day, and it really helped with abdominal gas and encouraged all those remaining organs to settle down and find their new forever homes. The shoulder pain from the gas introduced during surgery was more intense and lasted longer than I was advised (several days), but it wasn't horrible and mainly kicked in when I tried to get up from a chair or bed. Constipation and diarrhea lasted weeks. I felt normal after 3 weeks.

I drove myself after 8 days. I was then able to go to the store alone, but it took me forever to unload the car because almost every product got its own trip into the house. (No Costco runs for 3 weeks!)

The bottom line is it wasn't terrible, and in fact was pretty great because my uterus and her buddies had been causing me horrible pain and at last they were gone. I would do it again in a heartbeat. I hope you have an easy time. Good luck

PS This is what they are saying will be done...
ABDOMEN, RESECTION OF OMENTUM (OMENTECTOMY)
UTERUS, LAPAROSCOPY, XI ROBOTIC ASSISTED TOTAL HYSTERECTOMY; WITH REMOVAL OF TUBES
thats copied directly from mychart....

I went through that almost exactly two years ago. Luckily one of my sisters was with me because you are a bit laid up at first but not in any huge way. I didn’t have a lot of issues with pain post surgery. I’m 72, so they sent me home with a walker but I never needed it. I’m sure you know to ask all the typical questions about hospital length, recovery, and after care. I had two things occur that I hadn’t been forewarned about.

Before surgery, my surgeon showed me a photo of what he thought my abdomen looked like with all the tumors. I don’t know if yours did that? In my case, they were everywhere. Tons of little white tumors spread all over the abdominal tissue. So what I didn’t ask about is specific locations and perhaps you really can’t. But after the debulking surgery, I ended up with several tumors that he couldn’t remove because of their location. He said that he thought that I’d end up with huge bowel issues for the rest of me life if he tried to. But he thought the chemo would get rid of them. In my case, it didn’t. I don’t know whether they can tell from the scans the exact locations of the tumors and let you know anything like that beforehand? For most women, I don’t think that’s an issue. For me, because of my failed response to chemo, it was.

Another thing that ended up being a big issue for me is that awhile after surgery, the abdominal incision opened up in first one place and now two places. The incision openings are very small. They’re internal and not on the surface where you can see them. But I now have a large hernia on my stomach. I’m not severely obese but I’m overweight. The surgeon didn’t think that my weight had contributed to the incision opening but what I read online says that it does.

Anyway, I can’t have surgery to repair the hernia because I’m on Avastin for the cancer which is a blood thinner. I have a hernia belt and I probably need to wear it all the time because now the incision has opened in two places. They’re just small opening but in my case, I now have a large bulge on my stomach that is made up of fat cells and some intestine.

I’m saying all that to explain that this may be something to ask about. I imagine that you will end up with a long incision from right below your breast to your crotch line? I wonder whether I could and should have been given a hernia belt to wear for awhile as the incision healed and I started doing more. Would that have avoided the incision opening and getting what’s called an “incisional hernia”? Besides being funny looking, the hernia does cause me pain, especially after I’ve done something more physical. The hardest part is that because of Avastin, it can’t be repaired.

The last thing I’d say (and don’t let this worry you please because we’re all different) is that my oncologist was using my CA125 number too much afterwards. It was over 1700 when I was first diagnosed, but after all my chemo treatments and surgery, it went down to right around 19-20, which is in the normal range, and stayed there. After chemo ended, I remained on Avastin infusions and after about a year of Avastin treatment and months of low CA125 numbers, my oncologist declared me cancer free. He was going to stop treatment and I asked for a repeat PET scan before he did that. It ended up that the group of tumors that surgeon had left weren’t eradicated by the chemo. Their size hasn’t increased and so far, the Avastin is still keeping them at bay.

My cancer surgeon and oncologist were both shocked by that. #1 that the chemo hadn’t eradicated the tumors he’d left. But #2 that for me, the CA 125 number wasn’t an accurate measurement for my ongoing cancer. I don’t know if I’m unusual, but if your oncologist starts really using those numbers as a measure, be careful. They are now giving me CT scans to track the remaining tumors and I think if my oncologist had just done that along the way, he wouldn’t have led me to believe that I was cancer free.

But I hope you recognize that we’re all very different and our bodies respond to all of this very differently. We can tell our stories and tell you things to perhaps ask about and watch out for, but because something negative, such as tumors having to be left during the surgery and the chemo not eradicating them, happened to one person. That doesn’t mean it’ll happen to you. In fact, I think I’m a rarity.

In all, for me, the surgery wasn’t awful at all. My pain was very manageable without heavy pain meds and I got back on my feet in what I consider a pretty short period of time. All my best to you on this journey. 🙏🏽

PS. I hope while being given the primary chemo medicine, (carvoflaxin?) that you’re icing your hands and feet diligently. Try to avoid the neuropathy side effect if you can.

@jo72 yes they have showed me the initial images and i'm sure on Wed they will show me the most recent...i've read the CT scan reports as well...according to what i understand from the CT scan report, basically the remaining tumors are the ones on the ovaries etc...but it says the following...
"The previously seen very large pelvic tumor burden is decreased by greater than 90% total volume. Very roughly on the previous exam the right ovarian mass measured at least 8.3 cm by 5 cm in maximum axial dimensions and currently the right ovary measures closer to 5 cm by 2.3 cm in maximum axial dimensions. Similar decrease in volume of the left ovarian mass. The bulky tumor surrounding the distal large bowel in the
uterus is nearly resolved although there is residual abnormal soft tissue between the rectum, distal sigmoid colon, and the posterior margin of the uterus. There has been significant interval reduction in previously seen peritoneal tumor burden. Interval resolution of ascites. Previously seen relatively large hepatic capsular tumor
implants are nearly completely resolved with minimal residual soft tissue residing along the medial portion of the hepatic capsule. Bulky tumor in the right lower quadrant is decreased by greater than 95% volume and
residual abnormal soft tissue is essentially only seen on the appendix and is minimal."
this was after 3 sessions of chemo...so i'm pretty happy about all this...and i'm really grateful for everyone that is chiming in...

Awesome, MommaCandy, high five! I hope your surgery goes smoothly.

Met with surgeon, they are VERY happy, have said will be on June 3rd... 3 small incisions for the robotic parts and one small incision about 3" to remove the omentum as long as it all looks good once they go in...i did however have to get 2 units of blood before leaving for home...my blood levels were extremely low...
i'll be honest, i'm starting to get a bit nervous...esp considering the news we got about my best friends (his story is in the pancreatic group)... i'm just holding onto the fact the drs are really happy with my results...btw they told me i'll have 3 more sessions of chemo before another CT scan....