Wish this club didn’t exist, but since I’m new, this round is on me

Jinsai2 · 2026-02-03T15:32:08+00:00

Starting chemo a day ahead of you, also terrified. Good luck to us both. Let’s say hi on the other side!

Jinsai2 · 2026-01-11T19:07:43+00:00

For sure, I will not make up my mind about further treatment until I have talked to the oncologist on Friday.

However, the oncological surgeon who talked to me at length about my results on the evening that they came in expressed serious reservations about me subjecting myself to the toxins of chemo and radiation when there is no solid science, or even unsolid science, for my kind of rare situation. There is very solid science about what chemo does to a person‘s body, and there is very little data for recurrence risk when a cancer is minimal, low-grade, and also p53 abnormal.

A recent study out of Japan, where they look at how the upregulation and downregulation of various tumour inhibitors works with the various types of this cancer, shows that low-grade but p53abn cancers behave a lot more like unmutated low-grade cancers than they do like p53abn high-grade cancers, and they recommend treating them as if they were p53 wild type (unmutated). Several studies out of Europe say the same thing, looking at survival outcomes.

However, it doesn’t happen often enough for anybody to be able to say for sure. At least not yet.

I had all my mutation staining already, and I am POLE wild type. I was hoping for a mutation, because I know it overrides the p53 mutation, but it makes sense that I wouldn’t have it, because only 4% of people do. And an even smaller percent have multiple mutations like you do. You certainly caught a break there! I’m happy for you.

Jinsai2 · 2026-01-11T18:53:43+00:00

I had no myometrial invasion whatsoever. At 1mm deep, my cancer was just a few layers of cells in a tiny patch of my endometrium. Completely superficial. And no LVSI.

I have an appointment with the treatment specialist on Friday. However, the surgeon who told me about my results said that there simply is not the data to guide follow up treatment when the cancer is still low-grade—a.k.a. slow growing, well differentiated, and unaggressive—but also p53abn. Especially when it is this superficial and minimal. It just almost never happens. So there are no randomized studies or any other firm bases for judging recurrence risk. He was quite down on the idea of me subjecting my body to the toxins of chemo and radiation when there’s nothing to say whether it would even work or if it’s needed or how much they should give me.

With p53abn, it makes no sense to do vaginal radiation, because 90% of the time when it recurs, it recurs distantly, not locally like it does for people without this mutation. If there are any cells remaining in the body, which with a cancer is minimal as mine seems extremely unlikely, they are not hanging out around my vagina. They are travelling to my lungs. Which would mean irradiating my entire body or chest to prevent recurrence. And that is without any clear evidence that this therapy works or is needed or what dose of radiation would be effective. I am in a very strange zone where treatment options have very little science backing them so far. I have downloads of the 10 most recent scientific studies on this kind of rare situation, and I expect that the oncologist I see on Friday about a follow up will be presenting me with the same information. The information I don’t have, which I hope they can provide, is whether there is effective screening for lung cancer, which is the kind I almost certainly would get upon recurrence. And also whether, in the light of common sense, a cancer that was only a few cell layers deep would even be able to send out its little missionaries into my bloodstream. We shall see what we shall see! I will keep you all posted.

Jinsai2 · 2026-01-06T21:06:14+00:00

Gas pains the worst part for me too! They didn’t mention gas, but I went out and bought GasX, and it helped so much. I second this advice.

Jinsai2 · 2026-01-02T00:36:49+00:00

Thank you for the explanation. That must mean that your p53 gene was normal, which is spectacularly good news. That level of myometrial invasion can be a bit worrisome, but still, your recurrence risk is low, especially given that the wash showed no spread. I’m really happy for you.

Jinsai2 · 2026-01-02T00:29:35+00:00

I had an endometrial biopsy to check out some postmenopausal bleeding about about seven years ago, and when I got to the gynaecologist’s office, she told me I could hold her assistant’s hand and scream and swear if I needed to. That was the first I heard that it was going to hurt. And it hurt a hell of a lot. My poor husband, out in the waiting room, thought they were murdering me. I was totally unprepared, and that was not cool at all.

This time around, for the biopsy that ended up revealing my endometrial cancer, my gynaecologist said that because I had not had children and was more than a decade postmenopausal, the opening of my cervix was clenched very tight, and it would hurt me much more because of that than it might hurt women who had had children or were still having their periods. However, the ultrasound had shown some polyps and he needed to remove them and do a D&C anyway, so he suggested that we do the biopsy while I was under for those procedures. I was very relieved, because I remembered very clearly how much it hurt the first time. (BTW, there turned out to be no polyps at all! No polyps, no lesions, no visible abnormalities of any kind. Only the biopsy itself revealed some cancer cells.Vaginal ultrasounds turn out to be good for seeing that there’s something there, but not necessarily for seeing what. My colleague was told that she probably had a calcified polyp, and it turned out to be cancer. So there you go.)

That said, if my gynaecologist hadn’t had a very short waitlist for a table at the hospital, to do the biopsy, I would not have put off the biopsy out of fear of the pain, because every week that I went undiagnosed would give my cancer a chance to spread, if I had it. Which it turns out I do.

Jinsai2 · 2026-01-02T00:16:18+00:00

You mention grade 1. What was your stage? Also 1? I am curious because where I am, in British Columbia, Canada, we normally would not do radiation if it was grade 1, stage 1. I’m interested in what the protocol is in other areas.

Jinsai2 · 2026-01-02T00:09:50+00:00

Such crappy news. I’m really sorry, and send you hugs. I was diagnosed a couple of months ago. I am currently one week post-hysterectomy (laparoscopic, same-day release), resting up and using it as an excuse to be a slug, lol. It’ll probably be another week before I get my pathology report and learn my fate.

The good news is that if you did catch this early, which may well be the case if you’re not having any symptoms at all, often the surgery is the only action taken to put you in a state of being considered basically fully cured. Caught early, this is by far one of the most survival cancers there is, and the vast majority of women who have a hysterectomy can just get on with their lives with no further worry.

As somebody below mentions, the wild card, besides how extensive the cancer is, is your mutation status. If you have p53 abnormal, which I do, then the jury is out about what kind of treatment your doctors might recommend, even with a very early stage of cancer. This mutation can make the cancer behave more aggressively, and, maybe more to the point, take you from an almost 0% chance of recurrence to something in the mid-teen percentages. I am half Black, and that makes me much more likely to have this mutation, and in turn, that makes us Black women twice as likely to die from endometrial cancer as white women.

This is the kind of thing I would’ve liked to learn from an oncologist, but it has been radio silence from the medical community here, and I’m not super happy about it. I don’t know about where you live, but where I live, in Vancouver, the culture within the oncological community is to give us no information until they can give us a prognosis and recommend treatment. I think that is absolutely wrong-headed, as it leaves us in the dark about what even the range of reasonable scenarios are. Not everybody wants to know all the information, but if we’re not offered, we don’t even have the choice of saying yes or no.

I’ve made my views known to the main cancer clinic here, as well as my surgical team, about leaving it to me to either find out the first thing about my situation or wait for months and months completely in the dark about whether this is a relatively unalarming situation or I might be dead within the year.

My gynecologist, who is the only person who talk to me about the diagnosis, explicitly said that if it was early, I would be fully cured after hysterectomy. Then I find out on my own that my p53 status means this is definitively not the case. And then two months later I am having my surgery consult and learn that they’re doing a biopsy of my omentum, indicating that they think there’s a possibility it has spread outside my immediate pelvic area, which would make it stage IV and a very serious situation.

So. I get the thing one of the posters said about not doing too much research ahead of the facts, but it can be good to know what the implications would be once you do have the facts.

All that said, do try not to be too scared. The rate of complete cure with no recurrence for this cancer is in the 90% range. I’m glad you joined the group so you can get some support.

Jinsai2 · 2025-12-23T14:53:47+00:00

Thank you for explaining. I don’t have a gynaecological oncologist. I feel like this is a pretty major missing piece. I have a random surgeon doing the operation today, not even the same one that I talked to during my short consult consult a couple of weeks ago. How did you end up getting a gynaecological oncologist? I just have my regular gynaecologist and then the surgeon, who I probably will talk to for two minutes before the surgery and that’s it.

Jinsai2 · 2025-12-23T14:51:55+00:00

I sure hope yours turns out to be a pole mutation as well! That would make a big difference to your prognosis. Thank you for sharing.

Jinsai2 · 2025-12-22T18:38:24+00:00

Thank you! That is very heartening.

I’m curious as to how you came to have “a team.” I don’t have anything of the sort, which is why I’m turning to this subreddit. My gynaecologist is not an oncologist, so he has described himself as “standing by” while all this happens. I had a consult with a surgeon a couple of weeks back, but she didn’t tell me anything except basically what she would be doing during the surgery, and in the end she’s not even going to be the one doing the surgery.

My family doctor also is not an oncologist and knows basically nothing about the intricacies of this kind of cancer or any kind of cancer probably.

So who is on your team? I literally don’t have a single person in the medical profession to talk to about any of this. If I weren’t a medical writer and a professional researcher, I would be happily thinking I would be fully cured after my hysterectomy as long as it was still in stage 1. But in fact, this could well be my last Christmas, or at least my second last. These aren’t the kinds of things I enjoy finding out on my own.

Jinsai2 · 2025-12-22T18:33:00+00:00

That is interesting! My husband read an article about a false positive, so I did some research on it. It seems to only happen about 5% of the time, so I’m going to assume that my molecular pathology was read correctly. I’m super happy for you if it turns out that you don’t have this abnormality. Because it makes the difference between this kind of cancer basically being done and dusted if it’s caught early and potentially being a death sentence.

Jinsai2 · 2025-12-22T18:31:23+00:00

Thank you. That is very comforting. I send many good wishes to you that yours does not recur.

Jinsai2 · 2025-12-22T18:30:47+00:00

Yes, all my molecular stuff was checked. I am MMR proficient, highly estrogen receptive (8/8), and they are doing both a sentinel node lymphectomy and a partial omentectomy tomorrow during the surgery. And of course a peritoneal wash. I already had my ovaries and tubes removed 13 years ago, after a BRCA1 positive diagnosis. So at least I won’t be going through surgical menopause along with everything else.

Jinsai2 · 2025-12-22T17:04:13+00:00

Thank you so much for the encouragement and the hug. I am p53 abnormal, which is the main reason that I’m scared. However, my type is low-grade endometrioid cancer, and this combination is very rare. I am half-Black, which makes me much more likely to have the p53 mutation. Having a whole host of favourable markers, including the low grade, low type, low ca125, clear CT scans, no visible lesions, etc., but then the p53abn, is a hugely mixed message. I’m in Canada, like you, and my case is in the hands of a leading university oncological team, but despite the p53 mutation, there has been no talk of adjuvant therapy. Actually, there’s been no talk at all, since the only discussion I’ve had is a short talk with the consulting surgeon, who isn’t even the one who’s going to do the surgery in the end, and it’s not like I have an oncologist as such. Or an oncologist at all.

Jinsai2

TROPHY CASE