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Lymphavascular Invasion (LVSI)

calliegirl
Posts: 48
Joined: Jan 2018

Hello Ladies,

Happy Thursday!

I have a question and wondering if any of you got dx with lymphvascular invasion ? I had my hysterectomy and BSO on Dec 8 2017.

When I received my pathology results , & staging results , came back endometrial adenocarcinoma Stage 1 with LVSI. My gyno/oncologist told me that it was present and it was intermediate. However, because I was stage 1, and lymph nodes were not involved, the route of treatment was surgery and observation.

I'm now experiencing discomfort again,internal discomfort high up in my canal, same spot prior to my dx. Its a combination of pain and burning, then just pain. I am scheduled to see my onc, next week.

Why, wasn't I given say radiation? I read up on this and some doctors give it just to make sure everything is irradicated. I'm pleased and more than happy I did not need treatment , but now I'm worried it's back?? Can it be because my course of treatment plan wasn't right at the time? I'm frustrated...really because what happens I need radiation and or chemo...etc..and I was also told Stage 1 is such a low recurrence...yet LVSI worries me...

Anyone been in this exact situation? Similar? Any have LVSI, with low grade, yet also had treatments? If so, why?

Sigh...

Appreciate all the insight, advice.

Big Hugs

Elena

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

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

 

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

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's picture
Tamlen
Posts: 192
Joined: Jan 2018

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

jan9wils's picture
jan9wils
Posts: 50
Joined: Mar 2017

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's picture
Tamlen
Posts: 192
Joined: Jan 2018

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

jan9wils's picture
jan9wils
Posts: 50
Joined: Mar 2017

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.

barnyardgal
Posts: 197
Joined: Oct 2017

I'm on Letrozole. My Dr has me on Vitamin D as well as that is supposed to help prevent the joint pain. I don't have any bone pain so I guess the vitamin d is working.

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

After 3 months on anastrozole my joints hurt so much all the time that they felt like I'd just been in an auto accident -- every day. My onc switched me to exemestane and I'm tolerating that better so far. Still lots of joint aches, particulariy in knees, hips, and wrists, but better than on the anastrozole.

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

the treatments SUGGESTED for each stage and type, SUGGESTED is the operational word. https://www.nccn.org/patients/guidelines/uterine/index.html  

I had read this before right after my dx pre-surgery, and it is easy to read and very explanatory.  Now after surgery and post treatment, reading it again helps to review it.  But there is still a great deal of ambiguity in the treatments outlined. (For any newbies this is a very good resource, regardless.) 

Denise 

calliegirl
Posts: 48
Joined: Jan 2018

that my symptoms are due to surgical menopause..? like vaginal atrophy ? or something more...like a recurrence...

barnyardgal
Posts: 197
Joined: Oct 2017

I was initially suspicious for LVI , but further testing said I didn't have it. My Dr had two different pathologists take a look. She said even if I was stage1 I would have chemo and radiation if I had LVI. 

Wannabeatit
Posts: 97
Joined: Dec 2017

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”.

 

calliegirl
Posts: 48
Joined: Jan 2018

I just reviewed my pathology report, and FIGO grade 1, greatest dimension of tumor size 2cm, and LVSI present.

Also states, regional lymph nodes can not be assessed. Distant metastasis not applicable.

After reading all the above responses, im concerned if my course of treatment being " Observation" was correct? Especially because of LVSI.

Seeking a 2nd opinion? The thing is , even if I do , it probably would be too late to have treatment?

MAbound
Posts: 829
Joined: Jun 2016

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.

MoeKay
Posts: 196
Joined: Feb 2004

Twenty years ago, my case was a no-brainer as far as radiation is concerned.  I had extensive LVSI, a grade 2 tumor that had invaded approximately 80% of the thickness of the myometrium, was approximately 4 cm, and arose in the lower uterine segment.  I remember when I first saw my gynecologic oncologist before surgery.  He explained that after surgery some women needed no radiation, some needed internal radiation, some needed external radiation, and some needed both.  Given all my risk factors, I was one of the ones who needed both.  At that time, they were not prescribing chemotherapy for early-stage endometrial cancer, but had it been recommended, I would have likely opted for that also.  It appears that radiation for early-stage endometrial cancer is still an ongoing debate at least in some cases twenty years later. 

Have you considered first getting another pathology review at a different institution?  If another pathologist agrees with the first one, then perhaps getting another opinion on treatment might put your mind at ease. 

Wishing you the best of luck and health!

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

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

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