Lymphavascular Invasion (LVSI)

I was diagnosed stage 1B grade 2 with indication of lymphovascular invasion, lymphnodes clear, ovaries, cervix and tubes clear.  I also had a chest CT prior to surgery that showed a small nodule in my lung so a pulminary specialist was called to look at it and he visited me in the hospital. He said it was too tiny to do anything other than watch. I had post-surgery external radiation and brachy because of the lymphovascular invation. Was watched for the spot in my lung with CTs every six months and follow-up with pulminary doc.  I recurred in my abdomen 18 months after surgery verified by PET and biopsy, had surgery, recurred again in my abdomen verifies by PET, had chemo, recurred in my lung (that original tiny spot grew a bit more and was biopsied- same endometrial adenocarcinoma) had surgery and chemo. I've recurred again now and am awaiting genomic test results to see what options I may have at this time. So I don't know if radiation helped me or not. Maybe I would have recurred sooner, maybe not. It seems like much of cancer treatment is still a guessing game. 

Tamlen said:

My "suspected" LVSI was real

Elena -

My situation wasn't quite like yours, but not far off. After my TAH I was staged at II, no other signs of disease, all lymph nodes clear, grade 1 endometrioid adenocarcinoma. Pathology report read, "suspicious for LVSI" and my gyn onc dismissed it, said I didn't need to worry about it. Because of 99% myometrial invasion, tumor board recommended external radiation. Onc disagreed with tumor board but I pushed for a consult with a rad onc. I also requested a chest xray or CT scan after surgery because I'd had a cough before surgery and had read this cancer likes the lungs. Onc dismissed that, too, saying, "All in good time, there's no rush."

Almost three months post-surgery I was finally able to get in to see the recommended rad onc. He asked for my CT scan. I told him I didn't yet have one, despite my requests. He got me in the next day. And my lungs turned out to be "filled" with nodules. Not Stage II -- Stage IVB. It was confirmed as the same cancer via biopsy. It had spread via LVSI and it hadn't stopped anywhere else along the way but headed straight to my lungs. I found a new gyn onc after that.

I don't want to scare you, but it's worth knowing this can happen. When was your last scan?

Tamlen

 

How can a pathologist diagnose as"suspicious" for LVSI? I have 1a UPSC with LVSI, that showed microscopic cells. I was treated with chemo and brachy. It is my understanding either you have invasion or you do not. Cells are present or they are not. Can anyone with more experience please clarify? People are not upstaged if there is LVSI, but I believe it has the dreaded "poorer prognosis". The variability of treatment is pretty astonishing, as I had a baseline CT right after finishing treatment, and some docs don't suggest them at all. My orginal gyne thought that if I did have cancer it would be CURED, with just a hysterectomy, and was so blase about it that you would have thought he was talking about a hangnail. I know differently now.  I also have one lung nodule they are watching which was discovered post chemo. 

Ladies, the biggest take away I can think of is to educate ourselves as sometimes our doctors let us down. What I feel badly about is that many (like me) experience bad doctors  before or during initial dx and that is unfortunate. I feel like I am a one man band trying to educate my friends who are about my age about what to look for as there are no tests for uterine cancer. 

Denise 

Tamlen said:

Were you on any other treatments between recurrences?

I'm on an aromatase inhibitor. Did you receive any treatment between the recurrences, other than external radiation and brachy?

Yes, I was on letrozole but it made me severely depressed so I was put on anastrole. My depression did not go away and I developed worse leg pain. My doctor removed me from it. I did try it again last year but found I still could not tolerate it. I think I may be trying it again if I can take it with an antidepressant.

BluebirdOne said:

Tamlen

How can a pathologist diagnose as"suspicious" for LVSI? I have 1a UPSC with LVSI, that showed microscopic cells. I was treated with chemo and brachy. It is my understanding either you have invasion or you do not. Cells are present or they are not. Can anyone with more experience please clarify? People are not upstaged if there is LVSI, but I believe it has the dreaded "poorer prognosis". The variability of treatment is pretty astonishing, as I had a baseline CT right after finishing treatment, and some docs don't suggest them at all. My orginal gyne thought that if I did have cancer it would be CURED, with just a hysterectomy, and was so blase about it that you would have thought he was talking about a hangnail. I know differently now.  I also have one lung nodule they are watching which was discovered post chemo. 

Ladies, the biggest take away I can think of is to educate ourselves as sometimes our doctors let us down. What I feel badly about is that many (like me) experience bad doctors  before or during initial dx and that is unfortunate. I feel like I am a one man band trying to educate my friends who are about my age about what to look for as there are no tests for uterine cancer. 

Denise 

I went back to the pathology report and that's the exact language they used. Go figure.

My LVSI was “extensive”. I have UPSC Stage 1a. They told me 6 rounds of chemo with 3 Brachy sandwiched because of the grade of cancer and the LVSI. I am 1 year out from treatment and am waiting for a cat scan to see how I am doing. I worry about the”extensive”.

We've all had such different experiences with our cancers because doctors are kind of all over the place as to how they treat different types or stages. There is a "standard of care" and it's usually more conservative for lower stages and grades like your doctor has been treating you. It's a bit of a balancing act to weigh the risk/benefits of treatment or no treatment in early stages. Both chemo and radiation can cause permanent side effects that impact quality of life afterward, so they try to be judicious recommending it.

LVSI can be the game changer that can tip the scales towards risking treatment for some doctors and I think a lot of us lean that way now, too. I would tend to prefer chemo before radiation if it were me because it treats systemically what may be microscopic post-surgery. Radiation is only effective for what it's aimed at. There are probably studies out there that would contradict me, but that's my opinion. 

It won't be too late for treatment after a 2nd opinion. This is a slow grower. I would also put the thought of getting genomic testing done if you end up needing a biopsy. They could test your original tissue still, but there could be new mutations since then and newer tissue would be better, especially if your insurance won't cover the cost of it and you'd need to pay for it out of pocket.

Crossing my fingers, eyes, and toes for you that you're fears will turn out to be something else...but you have to find out one way or the other.

My doctor followed the 'Standard of Care' by the NCCN which has since been updated however prior to my total hyster I had asked for a CT or PET and was denied by the doc because I didn't meet the clinical need (we should have demanded it looking back) and then when my pathology came back stage 1A, Grade 2 , all nodes neg , pelvic wash neg (LVSI extensive which he never addressed),  he said ....'you are good to go see you in 6 months!!! I went back early at 4 months because of hip and rib pain and was dismissed as 'oh its probably just positional haha no it wasn't. So went to my wonderful gyn who ordered a CT and sure enough it was mets in my lungs, ribs and hips. So much for standard of care guidelines. I wish I had had better treatment back then but I was in Flordia. However I am happy to report I go to Comprehensive Cancer Center out here in CA and in much better hands with a team that knows what they are doing. In a clinical trial and doing ok praying this will stop the progression. All the best and please be an advocate for your care and push the doctor's if you don't feel the treatment is in your best interests. I am sorry I wasn't more assertive back when I was first diagnosed. xoxoxo 

As BlueBirdone posted here are the updated guidelines for reference....remember it is up to the doctor's and their clinical decision in the end!!! 

https://www.nccn.org/patients/guidelines/uterine/index.html 

Happy Weekend everyone! xoxo

Hello Ladies with LVSI

I understand the ticking time bomb feeling. ..

I had my hysterectomy in Dec 2020. I was told the frozen section showed less than 50% invasion and likely Stage 1. No sentinel node was located. I left the hospital thinking I may not need chemo at all. My next appointment was Dec 30th and everything had changed. My oncologist produced a sticky note uterine drawing with lots of tiny dots to both ovaries. He described this as extensive LVSI and said my invasion was over 90%, Stage IIIA. I was considered high risk for reoccurence and treatment was 6 rounds of carboplatin/ taxol, 6 1/2 weeks external radiation and 3 internal brachy. I eas in absilute shock.

My biopsy pathology showed 2cm tumor, grade 2. I know the LVSI upgraded my treatment plan.

I am doing well and feeling well. I have a second CT scheduled this week praying fir another NED.

Hugs to All.

Ribbons,

3 years NED is so wonderful. I am greatly encouraged by your success!

I love the way your doc described LVSI and I hope my LVSI cells. ready to merge onto the freeway, have their batteries die out first.

I found the 6 1/2 weeks daily radiation very very very taxing on my digestive system and my nerves. My mother died of Melanoma at age 30 and my father had a negative impression of radiation he passed onto me. Those impressions leave a mark on us, don't they? I don't think I would have made the last week w/o my friend taking me there. The brachy wasn't as scary as I imagined.

I see you love horses and dogs and live near a forest where you trail ride. That is awesome I am an apartment city dweller with 2 cats but I walk my local park daily.