Pelvic washings for uterine cancer

[Snazzyto]

Has anyone had early stage, low grade (1 or 2), endometrial cancer (adenocarcinoma) with no lymph involvement and no lvsi and no myometrial involvement and still had positive washings? If so, did the doctor add anything to your treatment? Did your doctor tell you how this adds to risk for recurrence? Anyone have a good source for understanding the significance of the washings? I know it used to be part of FIGO staging but not anymore.

[Fulana]

hi;

I had same cancer , but I never heard nothing about it.

[Seaglass57]

Hi there-

I was diagnosed state 1-B uterine cancer in 2016 and had positive washings. Because of that I had chemo and internal radiation. I was told that surgery could not have taken all the cancer out, so chemo was necessary. I had lymph nodes removed, but all were clear. My oncologist did not discuss with me that the positive pelvic washings would increase my chances of a recurrence, but in 2019 I did. More chemo and more radiation, but.......this is the good news, I currently am on an estrogen suppressor and have been cancer free since finishing treatments in 2020. I am sorry, but I am not familiar with the abbreviations you listed: lvsi. What is that?

My understanding is that I had a recurrence because I had very high estrogen levels, not so much because of the postitive washings, though who can be sure? The positive washings were the reason for chemo & radiation, because with my low staging, surgery should have been sufficient. Does this help? I'd love to continue this discussion because though I am in a support group for gynological cancers, no one else has had positive washings.

[Snazzyto in reply to Seaglass57]

LVSI is lymphovascular space invasion and is considered a high risk factor for cancer spreading. Cancer spreads through the lymph system or blood system or by growing in to surrounding organs and tissues nearby. So if it is seen invading in certain areas, this is a risk. There's usually a comment on it in pathology reports. It is listed in staging charts too as indication for different treatment.

Was your cancer hormone driven, endometriod or adenocarcinoma? Or higher risk cancer such as sarcoma, clear cell, high grade and others. What was your grade?

I ended up 1a grade 2. No myometrial invasion. No LVSI. 7 lymph nodes removed all clear. But then there were positive pelvic washings. No additional treatment for me. Now they believe studies do not show added treatment improves outcome in situations like mine and may have serious side effects. Though I have read they still add treatment for higher grade or higher risk types of this cancer. Which is why I asked what type of cancer and what grade you had. But that positive finding gives me anxiety regardless of what the studies show.

Also, cells can be found as a result of pre surgery procedures as well as due to the use of the uterine manipulator tool in laproscopic and robotic minimally invasive surgeries. D&C and hysteroscopy can apparently cause these cells to get loose. I only had a biopsy. Not sure if a biopsy can cause this too. So the most likely reason I was positive was because of the manipulator. Since my tumor was only in the endometrium, seems like the surgical procedure was the most likely cause. However, you never really know. Just like you said.

I have heard from a few other women like you who had chemo. I think they were higher grade though. Also, my particular molecular subtype of my tumor is one that usually doesn't respond to chemo well in advanced cases. So that would probably be the wrong call for me.

It's just unsettling. . So much of this is still experimental and we don't really know everything. They used to include washings in staging but stopped back in 2009 I think. There wasn't enough consensus on what the washings really indicated. Especially given the increased frequency of minimally invasive surgery. But they still do it and record the info and I believe it still influences treatment in more advanced cases or higher grades. It also just gives me a lot of anxiety due to the uncertainty in my situation.

I'm sorry you had a recurrence and I am glad you are doing well now. What were your symptoms for recurrence? I'm trying to better understand what to look out for. I'm only 6 weeks post op and still trying to process this all. I had a lot of pain and some "concerning " features on a CT scan, including enlarged lymph nodes, pre surgery. So I thought it had advanced. Apparently I also had undiagnosed endometriosis and that was the source of my very large cysts. Doctor thought scar tissue from endometriosis could have been part of my pain too. I should be so happy right now that it didn't spread. But I feel this cloud of anxiety still looming over me because of those washings. I'm trying to leave that cloud back in 2023 now.

Thanks for sharing your experience. I hope my explanations make enough sense.

[Merma Moderator in reply to Snazzyto]

Hi there,

I was stalling in answering you because I wanted to see what somebody else said first and am hesitant to share my experience.

DX 2015 with Stage 1 B, grade 3 endometrial cancer - adenocarcinoma. ER+ PR+ HER2-. Hysterectomy and preventative brachytherapy. Many lymph nodes were removed and checked.

18 months later - recurrence in 2 pelvic lymph nodes - the drs felt it was minimal residual decease (not big enough to see the first time). Had external beam radiation and chemo. Followed by taking anastrozole, an aromatase inhibitor. Basically, aromatase takes the fat and turns it into a form of estrogen.

Here’s the part that may relate to you. 6 months after chemo, (2017) I had another tumor show up on my left rectus abdominus muscle, near a scar from the original, laparoscopic, robotic hysterectomy. At first they called it metastatic disease. But it was happened due to a comtamination from the original surgery. The chemo did not kill it and anastrozole did not hold back the cancer either. They treated the tumor with brachytherapy (not fun at all).

In 2017, I started taking a drug designed for ER+ PR+ HER2- breast cancer called IBRANCE. I will be on some systemic treatment for the rest of my life or until there is some more effective.

To stay on top of this kind of cancer, you must get regular scans and gym check ups. The research is in metastatic breast cancer. You need to follow the innovations there.

I am sorry if my story is scary, but I am basically healthy and live with the fact that the cancer will return and be treated with a different med combo.

Best wishes to you.

[Snazzyto]

Thank you. I've heard plenty of scary and plenty of advanced stage successes too. So you're not scaring me anymore than I scare myself worrying about it. Unfortunately too, the internet algorithms send me all kinds of scary info too. I was recently reading about tumors caused by surgery because of a random article fed to me. Do you know what molecular subtype your cancer was originally? I have read mismatch repair deficient cancer is not very responsive to chemo. So I was curious if that could be the case with you.

They have me doing no additional treatment and originally said follow up every 3 to 4 months. Then changed it to 6 months. Claims bloodwork and scans not indicated. Studies haven't shown it to help. All this makes me uneasy.

[Snazzyto in reply to Snazzyto]

And I mean they changed their mind about 3 to 4 months and instead 6 months for year one of follow up. Not 6 months after the first or second year.

[Merma Moderator]

Immunotherapy works with mismatched repair - not as well as microsatelite stable or tumor mutations low. My mutations are ctnnb1, pik3CA, pten, SPOP.

I really recommend looking at the recent SHARE webinar “Understanding Uterine CancerTreatments” and another one from SHARE “Not All Uterine Cancer is the Same” (which came out last July). In October SHARE MBC had one called “Understanding Progressions:How to identify and treat ESRI mutations in HR+ MBC”. NCCN also had a very good webinar on current treatments for endometrial/uterine cancers. The big problem is that the research in hormone positive cancers is not widely used in other areas besides breast cancer.

I also strongly recommend that you stop looking at people’s experiences in YouTube. If it causes you anxiety, then it’s not helping. You need the basic info so you can ask your doctors better questions. Keep a file, either on your computer or on paper. But don’t live there.

Then, you have to live your life. Do the things that are important to you and what you like. Cancer is often a chronic condition that can be managed.

[Snazzyto in reply to Merma]

I'm not looking at you tube. Webinars through Cancer orgs like this and online reading from cancer orgs or medical orgs.

Looks like you had a much more detailed molecular type analysis than I did.

Thanks for the webinar recommendations.