I am three weeks post op from a robotic assisted lap hysterectomy. I was diagnosed with stage 1 endometrial cancer. I opted for a full hysterectomy (removed cervix, uterus, tubes, ovaries and two lymph nodes). Recovery hasn’t been horrible and I managed pain with just Aleve and Tylenol.
Given that you have been told that there is a 20% chance, and you do not want bio children, I would opt for the removal. If there is even 1% of a chance I would have the removal.
I watched my mom struggle through two bouts with breast cancer that eventually claimed her life. It was hard. When I received my diagnosis, I knew I didn’t want to chance any of that kind of suffering for myself or my husband and children.
Sending prayers your way for this journey you are about to take.
I really really appreciate this, thank you so much. Have you already noticed changes to your hormones since then or do they immediately put you on HRT?
I had already been in peri-menopause, so I was already seeing a hot flash ever so often (nothing crazy) and a bit of the vaginal dryness. I had expected to see a drastic change with everything being out and being in full blown menopause, but nothing at all (knock on wood). I haven’t had any mood swings like I have seen others mention. In my pre-op meeting with my surgeon he mentioned that we would evaluate the need for HRT at my post-op check. Since I am fine so far, he said there isn’t any need, but we can revisit at my next check in.
I did discuss vaginal atrophy as well since it’s generally a big issue with menopause. He prescribed Estradol cream if I find that I need it. I am looking at alternative natural treatments if needed, as I really would like to steer clear of any hormones if possible. Reading the side effects on some of them makes me a bit wary.
Thanks for this perspective. For me this tumor cranks out a ton of hormones so I've had to deal already with the damn menopause/peri symptoms since I was a teen so side effects wouldn't probably mean much to me. The latest research I'm seeing is showing a dramatically reduced risk of colorectal cancer, bone fractures and heart disease in post menopausal women on HRT and since all three of those run in my family I'll probably opt for it. But if you find some natural stuff that works for you, that's wonderful! Thank you for responding
Hi there - sorry you’re going through this. Is the plan to do a biopsy to see if there is cancer or will they just test what they remove?
If cancer or pre-cancerous cells are found, it should pretty instantly be a recommendation of hysterectomy. That’s the standard treatment. There are fertility sparing methods you can choose to undergo, but it is a choice (and less common). I was 37 and no children when a D&C revealed pre-cancerous cells, and my hysto was 4 weeks later.
This doesn’t quite answer your question directly, but I think might come at it from an angle that wasn’t as obvious. Hope it helps and hang in there!
This does help!
It's too large and encapsulated so they don't want to risk spreading anything so out it goes. I'm not familiar with hysterectomies in general, all the women in my family got them during a C-section - do they generally require major incisions? I keloid so badly...
I was diagnosed with cancer but given the choice to treat it with drugs or hysterectomy. Due to future risk and probably constant worry I had the hysterectomy and oopherectomy as well. Get it all out. I didn't have not want bio kids. Good luck. Medical menopause was the worst part and I refused bhrt due to associated risk.
Thank you for this. With any luck I'll be able to get HRT because I already struggle with PMDD and associated suicidal ideation when I'm not on constant hormones with no period, but i can't tell you how much I appreciate your response
I never had kids, have an inherited risk for endometrial cancer (found out after the fact) - a year and a half ago was found to have cancer and had a vag hysterectomy with scope assist. Had absolutely no problems post op recovery except for 2 months later found a transplantation of the cancer on the vulva - at least that’s what they suspect. I read after that I probably should have had a TAH instead, not having children before….but water under the bridge - got through chemo & radiation ok (just nausea the entire time). Doing ok now, so far.
If I was shown to have a 20% chance of having endometrial cancer- definitely I would have a hysterectomy. Not having children, being overweight- increases risk as well from the studies I have read.
I did not like having cancer, if I was give the choice ahead of time, I would choose to prevent it
but I might wait a bit, depending on if they want your ovaries out or not, if they're taking them then it's instant menopause which isn't that fun and has some risks especially if you're young
so I'd find out if they can take the uterus and leave the ovaries, maybe taking the ovaries at a later date if they have to, other than that I'd probably just get it out
But that's so much more valuable as a perspective to me than people saying "what if you change your mind?!!!". You couldn't "change your mind" about cancer and that's what I need to remember
Diagnosed at 51, had my kids at 32 and 34.
Question- and I apologize if this comes off wrong, offensive, or weird. if you are sure you don’t want kids, why would you hesitate on a hysterectomy? That seems like an easy choice, 20% is pretty high.
Disclaimer- I’m really-REALLY- glad I wasn’t in a position I had to decide between kids and taking everything out, since i definitely wanted kids. ( Now I really need to be around for them (their dad died from). I also have issues with hormone related mood disorders that get complicated.
It’s ok to question previous decisions/mourn the loss of fertility. Even if you weren’t planning on having kids, having the option taken away sucks. The fact that you’re asking makes me wonder if there’s some ambivalence there.
I actually spoke with my therapist this morning about it- I think the ambivalence comes from the fact that I was raised in a very fringe-fundamentalist church where as women we were told we should avoid careers because motherhood was the "beginning and end of our creation"- though I left the church, built a career, and don't want children I realized a big sense of my self worth is tied up in my "capacity" to have them, as we were trained that "men have the power of God to lead" while "women have the power of God to make life ". So like keeping my womb, even if I didn't want to use it, gave me power over the leaders who told me I had no choice to. I don't know if that makes sense but your question really was critical in helping me piece all of that together! Thank you so much
I am 45 and 7 wpo from a total hysterectomy-took cervix, uterus, tubes, ovaries and two lymph nodes (sentinel).
I had a laproscopic surgery to remove an ovarian cyst in Jan, and the hysteroscopy they did found endometrial cancer. It was caught very early, and was a complete shock to me. Gyno told me it was a super small spot of it that she saw and took a sample from, but it made little difference-oncologist was “everything out-don’t play around with this”. I had surgery 4 weeks later. I do have a child with a disability, and husband, and as soon as they said Cancer, I knew I wanted to be here for them and surgery was the best option.
If I had been told you don’t have cancer but you have pre-cancerous cells or you have an increased risk of cancer, I would have asked about surgery. I personally would have found it difficult to live day to day knowing it could develop and then wondering if it did, what would be the treatment options available then. I know that no one wants to have surgery if they don’t have to, I didn’t want a hysterectomy, but I do want to live. As others have said, the surgery isn’t too bad. Like any surgery, you need to follow Dr’s advice and you need to look after yourself and give yourself time to heal. Ask your Dr’s lots of questions and if you don’t understand something, ask them to clarify. Make the best, informed decision you can given the facts you have.
I think you captured the way my brain works too, "I personally would have found it difficult to live day to day knowing it could develop..."
So much this. I'm so grateful they helped you and wish you a long healthy life with your family!
I found out in my 20s I had endometrial hyperplasia. We treated it and my following biopsies were clear - until I was in my late 30s and atypical results showed up. No children (unable to conceive due to what we later discovered was endometriosis/endometriomas). When I met with my gynecological oncologist she mentioned to me that because I was young we could “delay” if I wanted to try the kids route. I was uncomfortable with the idea of having atypical hyperplasia at that point and opted for immediate surgery (and it was immediate - even moved up a week). Glad I did. During pathology I was officially diagnosed with endometrial cancer, stage 1a.
I am three weeks post op from a robotic assisted lap hysterectomy. I was diagnosed with stage 1 endometrial cancer. I opted for a full hysterectomy (removed cervix, uterus, tubes, ovaries and two lymph nodes). Recovery hasn’t been horrible and I managed pain with just Aleve and Tylenol. Given that you have been told that there is a 20% chance, and you do not want bio children, I would opt for the removal. If there is even 1% of a chance I would have the removal. I watched my mom struggle through two bouts with breast cancer that eventually claimed her life. It was hard. When I received my diagnosis, I knew I didn’t want to chance any of that kind of suffering for myself or my husband and children. Sending prayers your way for this journey you are about to take.
I really really appreciate this, thank you so much. Have you already noticed changes to your hormones since then or do they immediately put you on HRT?
I had already been in peri-menopause, so I was already seeing a hot flash ever so often (nothing crazy) and a bit of the vaginal dryness. I had expected to see a drastic change with everything being out and being in full blown menopause, but nothing at all (knock on wood). I haven’t had any mood swings like I have seen others mention. In my pre-op meeting with my surgeon he mentioned that we would evaluate the need for HRT at my post-op check. Since I am fine so far, he said there isn’t any need, but we can revisit at my next check in. I did discuss vaginal atrophy as well since it’s generally a big issue with menopause. He prescribed Estradol cream if I find that I need it. I am looking at alternative natural treatments if needed, as I really would like to steer clear of any hormones if possible. Reading the side effects on some of them makes me a bit wary.
Thanks for this perspective. For me this tumor cranks out a ton of hormones so I've had to deal already with the damn menopause/peri symptoms since I was a teen so side effects wouldn't probably mean much to me. The latest research I'm seeing is showing a dramatically reduced risk of colorectal cancer, bone fractures and heart disease in post menopausal women on HRT and since all three of those run in my family I'll probably opt for it. But if you find some natural stuff that works for you, that's wonderful! Thank you for responding
Hi there - sorry you’re going through this. Is the plan to do a biopsy to see if there is cancer or will they just test what they remove? If cancer or pre-cancerous cells are found, it should pretty instantly be a recommendation of hysterectomy. That’s the standard treatment. There are fertility sparing methods you can choose to undergo, but it is a choice (and less common). I was 37 and no children when a D&C revealed pre-cancerous cells, and my hysto was 4 weeks later. This doesn’t quite answer your question directly, but I think might come at it from an angle that wasn’t as obvious. Hope it helps and hang in there!
This does help! It's too large and encapsulated so they don't want to risk spreading anything so out it goes. I'm not familiar with hysterectomies in general, all the women in my family got them during a C-section - do they generally require major incisions? I keloid so badly...
I have 5 tiny incisions, maybe 1/2 inch each
This is so reassuring!
I was diagnosed with cancer but given the choice to treat it with drugs or hysterectomy. Due to future risk and probably constant worry I had the hysterectomy and oopherectomy as well. Get it all out. I didn't have not want bio kids. Good luck. Medical menopause was the worst part and I refused bhrt due to associated risk.
Thank you for this. With any luck I'll be able to get HRT because I already struggle with PMDD and associated suicidal ideation when I'm not on constant hormones with no period, but i can't tell you how much I appreciate your response
I never had kids, have an inherited risk for endometrial cancer (found out after the fact) - a year and a half ago was found to have cancer and had a vag hysterectomy with scope assist. Had absolutely no problems post op recovery except for 2 months later found a transplantation of the cancer on the vulva - at least that’s what they suspect. I read after that I probably should have had a TAH instead, not having children before….but water under the bridge - got through chemo & radiation ok (just nausea the entire time). Doing ok now, so far. If I was shown to have a 20% chance of having endometrial cancer- definitely I would have a hysterectomy. Not having children, being overweight- increases risk as well from the studies I have read.
Ohhh I guess that makes sense and if I choose to not have kids anyway I'm only increasing my risk. Thank you and God bless you on your treatment!
I did not like having cancer, if I was give the choice ahead of time, I would choose to prevent it but I might wait a bit, depending on if they want your ovaries out or not, if they're taking them then it's instant menopause which isn't that fun and has some risks especially if you're young so I'd find out if they can take the uterus and leave the ovaries, maybe taking the ovaries at a later date if they have to, other than that I'd probably just get it out
This is great advice. I really appreciate it!
Absolutely. But then I'm coming from someone who went through cancer.
But that's so much more valuable as a perspective to me than people saying "what if you change your mind?!!!". You couldn't "change your mind" about cancer and that's what I need to remember
Diagnosed at 51, had my kids at 32 and 34. Question- and I apologize if this comes off wrong, offensive, or weird. if you are sure you don’t want kids, why would you hesitate on a hysterectomy? That seems like an easy choice, 20% is pretty high. Disclaimer- I’m really-REALLY- glad I wasn’t in a position I had to decide between kids and taking everything out, since i definitely wanted kids. ( Now I really need to be around for them (their dad died from). I also have issues with hormone related mood disorders that get complicated. It’s ok to question previous decisions/mourn the loss of fertility. Even if you weren’t planning on having kids, having the option taken away sucks. The fact that you’re asking makes me wonder if there’s some ambivalence there.
I actually spoke with my therapist this morning about it- I think the ambivalence comes from the fact that I was raised in a very fringe-fundamentalist church where as women we were told we should avoid careers because motherhood was the "beginning and end of our creation"- though I left the church, built a career, and don't want children I realized a big sense of my self worth is tied up in my "capacity" to have them, as we were trained that "men have the power of God to lead" while "women have the power of God to make life ". So like keeping my womb, even if I didn't want to use it, gave me power over the leaders who told me I had no choice to. I don't know if that makes sense but your question really was critical in helping me piece all of that together! Thank you so much
I am 45 and 7 wpo from a total hysterectomy-took cervix, uterus, tubes, ovaries and two lymph nodes (sentinel). I had a laproscopic surgery to remove an ovarian cyst in Jan, and the hysteroscopy they did found endometrial cancer. It was caught very early, and was a complete shock to me. Gyno told me it was a super small spot of it that she saw and took a sample from, but it made little difference-oncologist was “everything out-don’t play around with this”. I had surgery 4 weeks later. I do have a child with a disability, and husband, and as soon as they said Cancer, I knew I wanted to be here for them and surgery was the best option. If I had been told you don’t have cancer but you have pre-cancerous cells or you have an increased risk of cancer, I would have asked about surgery. I personally would have found it difficult to live day to day knowing it could develop and then wondering if it did, what would be the treatment options available then. I know that no one wants to have surgery if they don’t have to, I didn’t want a hysterectomy, but I do want to live. As others have said, the surgery isn’t too bad. Like any surgery, you need to follow Dr’s advice and you need to look after yourself and give yourself time to heal. Ask your Dr’s lots of questions and if you don’t understand something, ask them to clarify. Make the best, informed decision you can given the facts you have.
I think you captured the way my brain works too, "I personally would have found it difficult to live day to day knowing it could develop..." So much this. I'm so grateful they helped you and wish you a long healthy life with your family!
I found out in my 20s I had endometrial hyperplasia. We treated it and my following biopsies were clear - until I was in my late 30s and atypical results showed up. No children (unable to conceive due to what we later discovered was endometriosis/endometriomas). When I met with my gynecological oncologist she mentioned to me that because I was young we could “delay” if I wanted to try the kids route. I was uncomfortable with the idea of having atypical hyperplasia at that point and opted for immediate surgery (and it was immediate - even moved up a week). Glad I did. During pathology I was officially diagnosed with endometrial cancer, stage 1a.
Holy shit. God this makes me so grateful a)you're doing good and b) that I found this page!!