Lymphovascular invasion (LVSI)

Hi Kira, and welcome to the group! Well done for having your hysterectomy and I hope your recovery is going well. I didn’t have LVSI, but I did have a restaging from 1a to 2 when my post op histology results came in, and so I can empathise with the shock and anxiety you felt and may still be feeling. Did you have your CNS with you when you got your results, or get the chance to see them afterwards for a chat? If not, I’d suggest phoning them on Monday to chat through it with you properly, as the shock element may have affected your ability to take it all in. For me I sat there frozen to the spot for quite a while afterwards and it took quite a while for things to settle. Was any adjuvant treatment mentioned at all? 

I recall that oldady and Poppysmum27 had LVSI, and hopefully they will be along soon to respond to you. I can’t tag at the moment or I’d tag them for you! There will undoubtedly be others too who can reassure you about this little hiccup with a scary name (like many medical terms!)

Just trying to see if I can tag using my iPhone : oldady and Poppysmum27 

Success! 

Hi Kira 

I had LVSI. After my 2nd op, I made the mistake of looking at the GP letter and googling. I thought aw well, not a good outlook. I asked my CNS about it and she was sort of dismissive, as if it's just part of my cancer.

Anyway, I've had treatment and am currently well and stable. My disease got to stage 4 so I'm incurable but chemo and radio have dealt with my cancer for now. I hope this helps and shows that LVSI is not the end as Dr Google would have us believe. Best wishes for your treatment,

A x

My surgeon and nurse both said to avoid Dr Google as can be alarming and info often out of date. 

Hi Kira, i was staged at 1a grade2 endemetriod adenocarcinoma with LVSI in 2015. Like you I had never heard of it and like other people here I googled it, not a good idea.! I had external RT and brachytherapy, followed  by checkups for 5 years and am now discharged.  Have you been advised as to further treatment yet?

Hi Kira  I was Stage 1a Grade 2  with LVSI in 2017 and like you, had never heard of it before and was completely floored that there were further problems after surgery.  I had the same radiotherapy and brachytherapy treatment as oldady at the same hospital a couple of years after, so reached my  5 years in October just gone.  As others have said, do not Google it.  I hadn't found this forum until just before I started radiotherapy so had no knowledge except what I Googled which wasn't helpful. 

Sending hugs,

Lesley xx

Hi Kira

I was stage 1b grade 3 with LVSI- for me this meant I had adjuvant chemo and radiotherapy. I believe hospitals vary but for me it was about making sure there were no stray cells anywhere that would be left behind. I took the treatment they advised and am clear of cancer and just had my first check up appointment. I have check ups for 2 years and then will be discharged. 

Hi thank you, I was told my results over the phone by my surgeon and was by myself. I have been refered to the Clatterbridge centre as I live in Liverpool. I was told I would get a letter or phonecall about my appointment within the next 2 weeks. I am finding it hard to get my head around that I was told I am the same stage that I was before my surgery and there is no cancer in the 2 lymph nodes they tested and that the tumour hadn't broken through my womb but then I was told they found some cancer cells around the lymph nodes they removed. In my little head I don;t understand that it hasn't spread but cancer cells have leaked through my womb which I would have thought if the cancer has gone outside the womb it has spread and would be higher than stage 1b. Hope this makes sense. I live along and have no family at all my beautiful mother died last year and not long in August 2022 I had the had the 2 week cancer referral. 

Hi thank you, I was told my results over the phone by my surgeon and was by myself. I have been refered to the Clatterbridge centre as I live in Liverpool. I was told I would get a letter or phonecall about my appointment within the next 2 weeks. I am finding it hard to get my head around that I was told I am the same stage that I was before my surgery and there is no cancer in the 2 lymph nodes they tested and that the tumour hadn't broken through my womb but then I was told they found some cancer cells around the lymph nodes they removed. In my little head I don;t understand that it hasn't spread but cancer cells have leaked through my womb which I would have thought if the cancer has gone outside the womb it has spread and would be higher than stage 1b. Hope this makes sense. I live along and have no family at all my beautiful mother died last year and not long in August 2022 I had the had the 2 week cancer referral. 

Hi Kira

I’m so sorry that you’re having such a worrying time, especially with it all happening so soon after the death of your lovely mum. I’m really thinking of you.

My understanding of LVSI is that the cancer hasn’t spread, but because cells have been found, either in the blood or lymph systems, then there is the potential for spread.  These cells haven’t attached themselves to any other organs in your body, which is what is meant by the cancer spreading, but there is a possibility that they could do this in the future, so your oncologist will advise you as to what they think the best treatment would be, to greatly lower your risk of this happening. This is how it was explained to me by my oncologist. I hope it helps.

Pippa xx