Post Hysterectomy Recovery

Posted by PaisleyBandit @kristinfloyd1, May 13 10:00am

Good morning,
I had my hysterectomy/debulking surgery 4/23. I have stage 3 HOSOC. My amazing surgeon was pleased with how things went. She indicated "I got it all" after surgery. No liver, colon, diaphragm involvement. I had 3 chemo prior to surgery that shrunk things well, and my Ca125 was normal prior to surgery. (403 at diagnosis). I am recovering at home, I am walking 1/2 mile each morning (worked up to this). I take tylenol and sometimes the muscle relaxer, but not regularly. I still have a "not right" feeling in my abdomen. Like my insides do not know what to do or where to go. Laying on my side is next to impossible, but sleeping on my back also produces very little sleep. I had my omentum removed, along with ovaries, fallopian tubes and uterus. I would say the most pain is my lower belly, but on occasion under my right breast. It almost feels like a broken rib. Anyone here comment on recovery post this surgery. I am only 3 weeks out, but I am 53, used to bouncing back quicker.
Also curious, for those of you who had 3 rounds chemo after this, how long after surgery did you have Chemo #4.
I am trying to give myself grace here, but I also want to get the chemo over with. (PS, constipation is under control with senna)
Thank you all.

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@kristinfloyd1 I don't know if the type of the uterine cancer makes a difference in how quickly one recovers from a hysterectomy. I do have a question. What is HOSOC? I haven't seen that acronym before and I couldn't figure it out with a search.

Your surgery was more extensive than what I had since your omentum was removed in addition to ovaries, fallopian tubes and uterus. Was your cervix also removed? What procedure did you have? Mine was laparoscopic so although I was fatigued for about two weeks I had very little pain. I was 67 years old at the time of my surgery and by 3 weeks I felt my energy was almost back to normal. However, I did go back to the gym and weightlifting until after my 6 week follow-up appointment because my surgeon told me not to lift anything heavier than a grocery bag. I did walk every day as you've been doing. I did not have chemotherapy before or after my surgery but others here in this Support Group will have more on that.

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I had my hysterectomy on 4/26, including both ovaries, fallopian tubes, omentum removed, a vertical incision from lower belly past belly button, closed with 33 staples. Diagnosed with stage 3 cancer. My chemo starts next
week. No prior chemo. I sleep on the back, lying on my side does not feel good, so I don't do it. I do not need pain medication, no pain from the belly, I have to be careful how i stretch or reach for things or I might feel a sharp pain. I do have discomfort on the right side, near the lower bottom rip cage, similar to your experience, which I had prior to surgery. I do not need medication for it. I do some walking, maybe 1/2 mile during the day but not in one
stretch. If you figure out what causes the pain on the right side, please let me know.

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@charlotte12

I had my hysterectomy on 4/26, including both ovaries, fallopian tubes, omentum removed, a vertical incision from lower belly past belly button, closed with 33 staples. Diagnosed with stage 3 cancer. My chemo starts next
week. No prior chemo. I sleep on the back, lying on my side does not feel good, so I don't do it. I do not need pain medication, no pain from the belly, I have to be careful how i stretch or reach for things or I might feel a sharp pain. I do have discomfort on the right side, near the lower bottom rip cage, similar to your experience, which I had prior to surgery. I do not need medication for it. I do some walking, maybe 1/2 mile during the day but not in one
stretch. If you figure out what causes the pain on the right side, please let me know.

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I was prescribed a blood thinner for 28 days.

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@naturegirl5

@kristinfloyd1 I don't know if the type of the uterine cancer makes a difference in how quickly one recovers from a hysterectomy. I do have a question. What is HOSOC? I haven't seen that acronym before and I couldn't figure it out with a search.

Your surgery was more extensive than what I had since your omentum was removed in addition to ovaries, fallopian tubes and uterus. Was your cervix also removed? What procedure did you have? Mine was laparoscopic so although I was fatigued for about two weeks I had very little pain. I was 67 years old at the time of my surgery and by 3 weeks I felt my energy was almost back to normal. However, I did go back to the gym and weightlifting until after my 6 week follow-up appointment because my surgeon told me not to lift anything heavier than a grocery bag. I did walk every day as you've been doing. I did not have chemotherapy before or after my surgery but others here in this Support Group will have more on that.

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Thank you, Helen. Typo on my part, it should have said HGSOC (High Grade Serous Ovarian cancer). I had debulking surgery with total hysterectomy. Not laproscopic, i have a 15 inch incision, midline. I did talk with my doctor, and it seems I am doing well, all things considered, just have to go easy on myself and be patient with the slow but steady improvements.

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@kristinfloyd1

Thank you, Helen. Typo on my part, it should have said HGSOC (High Grade Serous Ovarian cancer). I had debulking surgery with total hysterectomy. Not laproscopic, i have a 15 inch incision, midline. I did talk with my doctor, and it seems I am doing well, all things considered, just have to go easy on myself and be patient with the slow but steady improvements.

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@kristinfloyd1 Thank you for the clarification. It's good to hear that your doctor is pleased with your progress. With an abdominal incision and the surgery I would think that your recovery progress would be longer than laparoscopic. Keep up the walking and your slow and steady improvement.

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You have cancer and just had major surgery. Could usually bring very active be possibly causing you to push yourself too much? I’m much older and wasn’t as active so I might have been more patient with my situation. Sorry, I didn’t have your more severe pain issues.

Like you, my only comfortable position was on my back, I’m a side sleeper but I was able to sleep on my back. But I sometimes use sleeping bills because of another medical condition. I can’t remember if I was using them at that time to help? Are you or your doctor totally against using a sleeping pill? I’m sure you know this but sleep is really important to healing and your brain and emotional health. I use Ambien when needed and for me, it’s worked.

I started chemo 4 weeks after my surgery.

Lastly, I want to add that after my last chemo, my oncologist focused too much on my CA125 number. He didn’t use other methods like CT or PET scans to see if I was cancer free. My CA 125 was low for months and months and he declared me cancer free and was going to stop treatment. I insisted on a PET scan first and I wasn’t cancer free at all. My surgeon had to leave a group of tumors because of their location. He though the chemo would get rid of them but unlike most other people, chemo hadn’t been fully effective for me. And for me, the CA 125 wasn’t an accurate measure either. I hope your oncologist is better than mine and after your chemo ends, he/she tracks your cancer status much better than mine did. It’s nice to see a low CA 125 but use other measures as well.

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@jo72

You have cancer and just had major surgery. Could usually bring very active be possibly causing you to push yourself too much? I’m much older and wasn’t as active so I might have been more patient with my situation. Sorry, I didn’t have your more severe pain issues.

Like you, my only comfortable position was on my back, I’m a side sleeper but I was able to sleep on my back. But I sometimes use sleeping bills because of another medical condition. I can’t remember if I was using them at that time to help? Are you or your doctor totally against using a sleeping pill? I’m sure you know this but sleep is really important to healing and your brain and emotional health. I use Ambien when needed and for me, it’s worked.

I started chemo 4 weeks after my surgery.

Lastly, I want to add that after my last chemo, my oncologist focused too much on my CA125 number. He didn’t use other methods like CT or PET scans to see if I was cancer free. My CA 125 was low for months and months and he declared me cancer free and was going to stop treatment. I insisted on a PET scan first and I wasn’t cancer free at all. My surgeon had to leave a group of tumors because of their location. He though the chemo would get rid of them but unlike most other people, chemo hadn’t been fully effective for me. And for me, the CA 125 wasn’t an accurate measure either. I hope your oncologist is better than mine and after your chemo ends, he/she tracks your cancer status much better than mine did. It’s nice to see a low CA 125 but use other measures as well.

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Thank you for taking the time to respond. I am definitely not over-doing it. I saw my doctor this week, and they say everything is normal that I am experiencing. I agree with you on sleep. I am taking magnesium now with tylenol pm, and that seems to be allowing me to sleep for longer chunks of time. I have also been able to get a nap in on a couple days.
And, thank you for the advice on the PET scan/CT/ Ca125. It seems all doctors do things a bit differently.

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@jo72

You have cancer and just had major surgery. Could usually bring very active be possibly causing you to push yourself too much? I’m much older and wasn’t as active so I might have been more patient with my situation. Sorry, I didn’t have your more severe pain issues.

Like you, my only comfortable position was on my back, I’m a side sleeper but I was able to sleep on my back. But I sometimes use sleeping bills because of another medical condition. I can’t remember if I was using them at that time to help? Are you or your doctor totally against using a sleeping pill? I’m sure you know this but sleep is really important to healing and your brain and emotional health. I use Ambien when needed and for me, it’s worked.

I started chemo 4 weeks after my surgery.

Lastly, I want to add that after my last chemo, my oncologist focused too much on my CA125 number. He didn’t use other methods like CT or PET scans to see if I was cancer free. My CA 125 was low for months and months and he declared me cancer free and was going to stop treatment. I insisted on a PET scan first and I wasn’t cancer free at all. My surgeon had to leave a group of tumors because of their location. He though the chemo would get rid of them but unlike most other people, chemo hadn’t been fully effective for me. And for me, the CA 125 wasn’t an accurate measure either. I hope your oncologist is better than mine and after your chemo ends, he/she tracks your cancer status much better than mine did. It’s nice to see a low CA 125 but use other measures as well.

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your comment on CA125 as measure about cancer status is valid. When I was first tested for CA125, I was told that the high number may not indicate cancer, the exam of tissue gave the proof.

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Jo72, I had a similar experience with PET scans. CT looked normal, but there were several hot spots on the PET. The biggest one was about an inch across. I plan to insist on PET scans from now on! And I encourage all cancer patients to consider requesting them, too.

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@lathomasmd

Jo72, I had a similar experience with PET scans. CT looked normal, but there were several hot spots on the PET. The biggest one was about an inch across. I plan to insist on PET scans from now on! And I encourage all cancer patients to consider requesting them, too.

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Thank you for that information. 🙏🏽 I’m currently getting Avastin infusions and my oncologist is using CT scans every 3 months to track my tumors. I wonder if that’s enough? I’ve only had 2 PET scans, one at diagnosis and one when he thought I was cancer free because of my CA125 and wanted to end treatment.

I wonder how often Medicare will approve a PET scan?

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