LVSI - is it in my nodes?

Hi all. I just had my cone and thought it was going to be microinvasive finding and was hopeful my journey would have a light at the end of the the tunnel. But as with most of this journey that was not to be and I felt like I got hit by a truck when I got the results:

CERVIX, COLD KNIFE CONIZATION:

Invasive mixed squamous cell and adenocarcinoma arising out of background HSIL

Stromal invasion of 4 mm, middle third of stroma

Positive for perineural invasion

Suspicious for lymphovascular invasion

All margins free of dysplasia or malignancy

  1. ENDOCERVIX, CURETTINGS:

Benign superficial endocervical glands and stroma

Additional immunohistochemical stains are performed with good controls in an attempt to identify the potential lymph vascular invasion. Lymphatic spaces with tumor are highlighted by podoplanin, while negative for CD31. This is consistent with lymphovascular invasion.

Im having a hard time finding lots of info on LVI or LVSI and what I’m finding is definitely quite scary. I’m likely going to have a radical hysterectomy with lymph node dissection. I’m really nervous at what they might find/see when they open me up and how much the cancer may have spread. Any info, resources, stories, or encouragement would be appreciated. I feel like I’m in absolute hell right now and am having a hard time thinking of anything but being terminal and not seeing my next birthday.

Hi @Jportwo0

So sorry to hear you didnt get the results you had hoped for. I was in a similar position. My colposcopy results showed squamous cell with lymphovascular invasion present. I had a hyterectomy 8 weeks ago and unfortunately the pathology came back that 2 nodes were cancerous. I am now in my second week of chemorads and doing ok. Because of the lymph node involvement i was restaged from 1b1 to 3c1 but they are still treating to cure. Staging is very vague and each person’s situation is different so dont pay to much attention to different stages. Also, Lvsi is a precursor for node involvement but its not a definite. Feel free to reach out xxx

Hi @Jportwo0

So sorry you didnt get the results you were hoping for. I had LVSI present in the biopsy taken from my lletz and like you read some not very positive things on the internet. I got myself in such a tizz over it.

However as sarah1987 said and as i was told by my specialist nurse its a precursor, so an indicator of the possibility its in the lymph nodes and not set in stone that it has spread to them. When i had my hysterectomy there was no LVSI reported in the pathology of what they took out and it wasnt in any of the 17 lymph nodes they removed. So i know its easier said than done but try not to worry, its not a definite but an indicator of the risk.

Im now 18 months post hysterectomy for 1b2 adenocarcinoma/large cell neuroendrocrine and almost 12 months post adjuvant chemo (for the neuroendrocrine) and am doing well with regular checkups and 3 NED scans (they are scanning regularly for the rare neuroendrocrine hence why im having so many).

Honestly these consultants and nurses are amazing and there are so many experts involved in the MDT meetings that you can be positive any treatment plan they give you will be entirely personalised.

Hoping my story gives you some positivity, it is difficult to find many stories/experiences about LVSI.

Sending hugs x

Hi! Yes, thank you! Your story gave me lots of positivity and hope. Thank you for being so uplifting and supportive. It sounds like you have Been through so much in your journey! How has treatment been? Congratulations on NED!!! sending all the good thoughts and vibes that you continue on this path of good health. :heart:

1 Like

Thank you for sharing Sarah! I’m so sorry to hear you had node involvement, but it sounds like you still have a good prognosis with cure the objective. I’ll be sending lots of good vibes your way. How long will be doing chemo? Will you do radiation also?

I meet with my oncologist tomorrow to discuss my pathology results. I’m hoping I feel a bit more reassured after talking to her. Googling the LVSI has me in quite the panic. Even though I know Google is not the place to be!!

Hi,
I was diagnosed with stage 1b1 with LVSI. I had a RH with lymph node removal and lymph nodes were reported as clear.
I am 2 years on and although I am not due routine MRI scanning, I have requested it annually due to LVSI.
Wishing you lots of love on your journey and we all here for you.

Hi @Jportwo0

Glad to have sent some positivity your way. Treatment was ok, but i just knew i had to do it. I think we can surprise ourselves with how strong we are to get through the treatment even on the worst days. Hope your appointment goes ok x

Thank you for sharing @Nol. It is so encouraging to hear from so many women who faced a similar diagnosis. It really helps me feel not so alone. Congratulations on two years on the “other side.” All my hopes and wishes for your good health to continue on.

As an aside, have you been able to get approval for annual MRI screening?

@LBN2022 Thank you again for sharing about your journey and treatment and providing positivity and light. This forum is full of amazingly strong women who have bravely fought. I’m so thankful to have the support of women like you in this journey. It helps so much. <3

1 Like

Thank you so much.

Yes, each year I have had a chat with the doctor and they have ordered it for me. Some have been more open to it than others but you can certainly advocate for yourself.

I hope you get some clarity on your next steps soon.

Do keep us all updated and will be thinking of you x

I’m so glad to hear that you’ve been able to advocate for what you need! That’s great. And a good thing for me to take note of. :slight_smile:

I’ve got a pelvic MRI with iV contrast and abdominal/pelvic CT with oral contrast scheduled in about three weeks with a modified radical hysterectomy on June 4th. Today, I had a mini breakdown after I got off the phone with the scheduler about my scans. I’ve been holding up pretty well and doing ok, but for some reason yesterday and today I’ve been struggling and weepy. Fears that I’ve been able to manage ok are right back in the forefront of my mind - screaming all the what ifs at me. I know its ok to have days like this, and I know I will have more of them, but its just tough when they come up after so many good days.

I’m quite scared about the scans - both mentally and physically. Mentally, I’m terrified of what they may show. Physically, I’m such a baby when it comes to anything medical and the thought of an IV and the contrast, well, I’m just concerned about how my body will react.

Wishing you well.

Hi @Jportwo0, Hope my story will help and give hope. I had CC, scuamos cells, I did radical histerectomy + radical limph node. Histopalogic result show LVSI present plus PNi (perineural) but wasn’t any limph nodes affected, all clear, margins clear, my stage 1B2, 1B3 (Figo 2019) Because I had LVSI and PN I still need to do chimio+radio, all treatment. Plus because my type of CC was an angressive type, SCC grade 3, one oncologist doctor (the second opinion) recommended 6 sessions of chimio taxo+carbo.
LVSI - not need to be lymph node involved.
Why you will have the surgery in June ? You start radio+chimio firts ?
:hugs::hugs::hugs:

I had positive LVSI after my radical hysterectomy in 2018 for stage 1b1. Negative lymph nodes. Also Adenocarcinoma. Within 4 months, I had a recurrence and got chemo-radiation for it and a clear PET-CT scan in 2019. But within 6 months after that scan, I was stage 4, with local recurrence, a tumor on the abdominal wall and lung nodules in 2020. The expected survival was listed as “at least one year”.

It was found early because I had insisted on getting another PET-CT scan even though I had no symptoms. Finding it so early rather than waiting for symptoms, was crucial. I got 6 rounds of Taxol, Carboplatin and Avastin and was very very lucky to be NED. I then insisted on getting PET-CT scans every 3 months until I had 3 clear ones, then we reduced it to every 6 months.

I’m now in my 4th year NED and still get PET-CT scans every 6 months. After year 5, we’ll reduce it to once a year scans. I’ve also been on an alternative protocol of “repurposed drugs” or “Off-Label Use” that have anti-cancer properties. I believe targeting the stem cells is crucial and hopefully that’s what has prevented another recurrence, despite the aggressive nature.

Bottom line, especially if you have Adenocarcinoma and LVSI, even with negative lymph nodes, you must remain vigilant and get frequent scans to catch anything early. I’ve never had any positive lymph nodes throughout all my many scans. But it somehow got to my lungs.

Wishing you all the best in your upcoming surgery. I hope my story gives you some encouragement that even when things look grim, you never know. There’s always hope but you must always advocate for yourself.

3 Likes

In case you haven’t seen the posts today, Jo’s trust and the forum is closing immediately (23 May 2024).

I’m posting on other threads, so that as many forum users as possible are notified before the forum is taken down.

Where else will we get this kind of support?

Check out the posts about the closure and pass this terrible news on in case anyone can help.