r/endometrialcancer • u/Thin-Break-3079 • Feb 16 '25
Current Figo staging
Hi all, I put together a post with the current Figo staging. The current staging is much more specific than the older staging. I hope this is helpful.
The information came from the International Library of Obstetrics and Gynecology.
Stage I
IA1: non-aggressive histological type of endometrial carcinoma limited to a polyp or confined to the endometrium
IA2: non-aggressive histological types of endometrium involving less than 50% of the myometrium with no or focal lymphovascular space invasion (LVSI) as defined by WHO criteria
IA3: low-grade endometrioid carcinomas limited to the uterus with simultaneous low-grade endometrioid ovarian involvement
IB: non-aggressive histological types involving 50% or more of the myometrium with no LVSI or focal LVSI
IC: aggressive histological types, i.e. serous, high-grade endometrioid, clear cell, carcinosarcomas, undifferentiated, mixed, and other unusual types *without any myometrial invasion.
Stage II
IIA: non-aggressive histological types that infiltrate the cervical stroma
IIB: non-aggressive histological types that have substantial LVSI
IIC: aggressive histological types *with any myometrial invasion.
Stage III
IIIA: differentiating between adnexal versus uterine serosa infiltration
IIIB: infiltration of vagina/parametria and pelvic peritoneal metastasis
IIIC: refinements for lymph node metastasis to pelvic and para-aortic lymph nodes, including micrometastasis and macrometastasis.
Stage IV
IVA: locally advanced disease infiltrating the bladder or rectal mucosa
IVB: extrapelvic peritoneal metastasis
IVC: distant metastasis.
The performance of complete molecular classification (POLEmut, MMRd, NSMP, p53abn) is encouraged in all endometrial cancers. If the molecular subtype is known, this is recorded in the FIGO stage by the addition of “m” for molecular classification, and a subscript indicating the specific molecular subtype. When molecular classification reveals p53abn or POLEmut status in Stages I and II, this results in upstaging or downstaging of the disease (IICmp53abn or IAmPOLEmut).
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u/hobbit_whxre Stage IIIC Feb 17 '25
Hey thank you for posting this. It's still so confusing but seeing it like this helps!
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u/Thin-Break-3079 Feb 17 '25
No problem. I myself had no idea there was a newer staging and was shocked to find 2c on my surgical report. I was able to read the above document and understand why (before my post op appt).
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u/hobbit_whxre Stage IIIC Feb 17 '25
I'm gonna try to avoid MyChart until I hear from the oncologist. I'm so nervous. Haven't had surgery yet but I'm assuming it will be scheduled soon after meeting the oncologist. How far post-op are you?
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u/Thin-Break-3079 Feb 17 '25
I hope you get a surgery date quickly! I felt immense relief knowing everything was out of me, even before reading the pathology report.
I unfortunately tend to read everything on Mychart as soon as it pops up. I had to force myself to avoid google before the surgery as it only made me panicky.
I’m 15 weeks post op and feeling almost 100%. Recently found out my tumor showed a Pole mutation, which is apparently has a more favorable prognosis for a high grade tumor.
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u/hobbit_whxre Stage IIIC Feb 17 '25
I do the same thing honestly. I'm so nervous about the surgery because I've never had major surgery. Just my wisdom teeth when I was 17. Do you have a treatment plan or just surgery?
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u/Thin-Break-3079 Feb 17 '25
I had 3 rounds of brachytherapy last month, to reduce risk of localized return. I haven’t had any side effects. This was recommended due to the high grade of my tumor. No other treatment at this time.
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u/Unlikely_Pie7418 Feb 17 '25
Smart plan I lost 2 days of spiral and it only ended because my doctor saw it was posted when he reviewed Monday morning and called me right away.
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u/Gryphtkai Mar 05 '25
Yeah my doctor called me yesterday afternoon. She didn’t want to tell me over the phone but she really didn’t want me seeing it in MyChart.
So now waiting to be referred to an oncologist. All the report says re biopsy Endometrioid carcinoma, FIGO Grade 1.
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u/dawndsquirrel Apr 01 '25
That sounds similar to me. 1A by older system, and IIc by the newer one, given p53abn (high grade), no observable spread, clear pelvic washes, clear lymph nodes, 39% myometrial invasion, and focal LVSI present.
I also have a POLE-mutation, which by my reading is indeed good news. I see in your other comment that you also have POLE-mut and had the brachytherapy. I've been stuck in a decision loop around doing that because I've had some familial experience with radiation that had very bad outcomes indeed. So I'm extra nervous.
Did you also have p53abn? Having both the POLE-mut AND p53abn (or MMR-deficient) is apparently only 3-6% of EC cases. The good news is that it seems from very limited data that the POLE-mut is dominant in these "multiple classifier" cases, which leads to better outcomes.
Sounds like you are about 19-20 weeks post op now, and had no side effects from the brachytherapy. How are you feeling? I'm about 6.5 weeks PO, and I won't start brachy till at least 8 weeks. Recovering, but nervous. I'm glad to hear of your success, though. Gives me hope!
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u/Thin-Break-3079 Apr 02 '25
My tumor was negative for p53abn, but was grade 3. I have my first follow up with my gynonc this month during which I plan to discuss the POLE mutation. I will also have bloodwork done for genetic testing.
I feel almost 100% now. Getting back on my treadmill, even just for a short walk, was huge in helping me feel strong and lowering my anxiety.
The brachy was not bad for me. I had 3 treatments, 3-4 days apart. I did have some soreness that slowly improved. My partner was able to attend the appointments with me (aside from the actual radiation part), which was very comforting.
If you choose to go through it, staying calm/relaxed as much as possible. Also, having a full bladder can help reduce any GI side effects. Did your family members have the same radiation treatment or external? My understanding is that external beam is much, much harder on the body.
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u/dawndsquirrel Apr 29 '25
Thanks for the response. I'm still debating. Have put it off and put it off, and now we are at "do it, or it's too late per the guidelines." I would be looking at 3 treatments, about 1x/week.
The familial experience wasn't for EC. My dad had squamous cell carcinoma in his cheek, surgery, then radiation treatment. The radiation caused a necrosis in the brain, which resulted in him getting a partial pre-frontal lobotomy. He wasn't much older then than I am now. The surgery saved his life, but it was completely life-altering. He couldn't hold a job, and eventually ended up in an assisted living facility because he could no longer manage his emotions. Medications helped, but he was literally missing that part of his brain. It wasn't all bad. After the surgery, he learned to tell us that he loved us and appreciated us, which was something he couldn't do before that. So that was a precious gift. He lived an additional 22 years after the surgery, till he passed just over a year ago from sepsis following acute myeloid leukemia.
So, yeah. That's not a common occurrence. And we won't be irradiating near my brain. But I've had a long journey to get to the place that I can have good, not-painful sex, and I worry about that being taken away. I'm also concerned about bladder and other issues, with a family history that includes someone -- fortunately fairly far removed -- with bladder cancer. Plus I've had UTIs much of my life, so I'm prone to them.
The genetic picture is incomplete, fuzzy, and only of limited use. There are no double blind studies on outcomes with multiple classifiers, and in many cases people like me with multiple classifiers were EXCLUDED from the data sets. What data there is seems to follow people who all had some sort of radiation. So it's reassuring that they -- people who had POLEmut + p53abn didn't get recurrences (like, zero!), but the fact that the vast majority of them did some sort of radiation pushes me back towards doing it. I'm just... stuck in the middle with my decision.
How long did it take you to recover from the brachy soreness? Have you tried having sex and if so, how did it go? Glad you are feeling almost 100%! Yay!
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u/Thin-Break-3079 Apr 29 '25
It took a good couple of months before I could use the dilator or have sex without bruise-like pain. I ended up using the dilator more frequently than the 2-3x per week they recommended because I found it to be less painful if I used it every other day. Now I do the minimum recommended and don’t have pain.
For me, the pain post hysterectomy was worse than the pain post-brachy. I still get some twinges on my right side, but they told me I have some minor scar tissue on that side and everything looks good. I just had my first surveillance visit and got the all clear 🥳
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u/dawndsquirrel Apr 29 '25
Yeah, the "dilator forever" thing has me pretty spooked. But so does "oops, it came back and now we have to do external beam too!" :( I did pretty well with the pain post-hysto. Still get the occasional twinge if I try to move in a particular way getting out of bed, for instance. But otherwise, I'm good there.
Yay for your all-clear!
Thanks for your responses. It's been helpful to talk to someone else in a situation more similar to mine. Much appreciated!
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u/Thin-Break-3079 Apr 29 '25
Happy to help. It’s such a nightmare for all of us, any advice/similar experiences can be a huge help.
If you do go forward with the brachy get a silicone dilator. I bought a set on Amazon. They’ll probably give you a hard plastic one, which is super uncomfortable. I was told the silicone ones are fine or any “toy” of similar size. I was also told it’s not necessarily forever, but at least 1 year depending on how the exams go. Good luck with whatever you choose! 🍀
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u/dawndsquirrel Apr 29 '25
Good tip on the dilator. I am amused at the thought that I may end up with a prescription to have sex, essentially. My partners (I'm poly) are standing ready to help whenever they are given the go ahead! LOL
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u/CABB2020 May 31 '25
Did you have to request testing for the POLE mutation result or was it part of your standard pathology reports?
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u/Western_Assumption_2 Feb 17 '25
Thanks for this, my Dr had told me 1A2 and I was having a hard time matching to what others were saying, this helps a bunch!
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u/octopusglass Feb 17 '25
mine just says stage 1A, I wonder how to find out if it's 1A1 or what?
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u/Thin-Break-3079 Feb 17 '25
I think if you have the pathology report you could read through and see which applies. Grade, myometrial involvement, LVSI, etc.
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u/Glittering_Hurry236 Feb 17 '25
So, would I be downgraded now to 1A1?
It was a singular polyp removed during a polypectomy and D&C; Figo 1 endometriod carcinoma.
Path from hysterectomy, Stage 1A, 0% invasion of the myometrium, pelvic wash clear, two lymph nodes on each side clear and sentinel node clear.
"Endometriod carcinoma was contained to polyp 11 mm." Also in report.
Nothing about pole or pn etc., in my report.
When did this new grading system happen? I was dx last April, hysterectomy May 29, 2024.
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u/Thin-Break-3079 Feb 17 '25
I believe this was published in 2023, but not sure when it was put into practice. Maybe yours was staged before things changed? I just thought it would be helpful to have the document here for quick reference.
Pole testing is strongly associated with higher grade tumors. If yours was grade 1, they may not have tested for it.
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u/Glittering_Hurry236 Feb 17 '25 edited Feb 17 '25
Probably didn't test for it. I asked the ONC at my two weeks post op if my "cancer was Er+ or Pr+," and he said we didn't test your polyp because it was removed during the polypectomy and we Don't test anything that small and it was gone with the operative hysteroscopy so I was always so confused - they took The cancer polyp OUT 6 weeks before my hysterectomy - so why did I need the hysterectomy -- and sometimes I think was that even cancer. I asked my oncologist at my last check up was I stage zero and he said no you're not stage zero because stage zero is just a cellular change. You had an actual tumor the polyp 11 mm that had endometrial carcinoma, which is endometrial cancer.
But - then sometimes I think why did I even need the hysterectomy if they already took the polyp out during the operative hysteroscopy. And the GYN said you have to because where there's one there's gonna be more and they could be worse and you have to get everything gone.
And I said I just feel like I'm stage 0 and he says. Your aren't. But you are no evidence of disease during the hysto and that's the best news.
My hysto being last year with the new staging changed. I think I'm the same A1 or 1A1. I'll take it !! 🙏🏻🙏🏻 no more !!
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u/JamesHashTagCoffee Feb 17 '25
my mom has distant lymph node metastis but everything else confined to pelvis. Cancer on outside of some pelvic organs. She is 4b, but that might be a stretch
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u/karasaray Feb 23 '25
Thank you for posting this. I’m still confused because I seem to be Stage 1A2 but I had one lymph node (out of 5 taken) which had tumors cells. I’m having Brachytherapy for it but If anyone on here can explain this to me I’d be so grateful.
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u/Aware-Locksmith-7313 Feb 16 '25
So a former 1A grade 3 (clear cell) with 33% myo invasion, negative cytology, negative lymph nodes, no LVSI, clean cervix is now what???
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u/Thin-Break-3079 Feb 16 '25
It is my understanding that Aggressive type with any myometrial involvement would today be staged at 2c.
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u/TrustTheGoat1 Feb 24 '25
Just FYI this has not been widely adopted. Gyn oncologist also find it confusing. I’ve not seen a clinical trial using this staging system as inclusion criteria. Most are using 2009 staging.
My take from it is that there is a subset of stage III cancers with isolated ovarian metastases that likely do very well compared to other stage III cancers. Another take is that molecular profiling is important. But we’re still waiting on prospective trials that validate defining trial arms by molecular profiles.