LVSI

*My womb

Hi KT89

I'm sorry that you you are unfortunate to find yourself here, but I just wanted to say WELCOME! 

I'm sure more people will come to say hi. 

I had a total laproscopic hysterectomy back in 2021 followed by chemotherapy, so I don't have experience of pelvic radiotherapy, but again there will be others to share their experiences with you.

Meanwhile, make sure you have plenty of rest, this is a major operation you've had so don't overdo things.

Wishing you all the best! Hope

Hi KT89, welcome to the group and to this roller coaster ride. I had my hysterectomy in Jan 2022, and my histology results showed grade 1 stage 2 - nit from LVSI but from stray cells on top of my cervix. I had 25 x radiotherapy and 2 x brachytherapy, finishing in May 2022. There’s a dedicated pinned thread for Radiotherapy so I’d recommend checking that out and asking any questions you like either here and on that thread or on both. Here’s the link: community.macmillan.org.uk/.../radiotherapy-support-thread-inc-brachytherapy

Thank you for replying so quickly. Best wishes. 

Thank you that is really helpful. 

KT89. I’d like to add that when I was first told it was stage 2 and needed radio (instead of the stage 1 and no treatment that I’d been expecting) it hit me like a ton of bricks and I could barely move or speak. The staff were very good and caring, but eventually had to take me into a side room to try and get my head back together. I was a wreck up till I had my first oncologist appointment and she was so confident and matter of fact that she inspired me - it turned things around for me totally. 

1. Thank you MarmiteFan59  for sharing that. Things can change with our diagnoses can't they and it is a whole new world. I feel very tired and a bit numb to it all at times. Deep down I feel thankful that it is a relatively early grade and stage. But realism sits alongside that, and surprises may occur along the journey. This site is already helping me. Mainly because I don't feel on my own. Best wishes to all of you.

Hello KT89

Welcome to the Online Community. I am sorry to hear that you have had a diagnosis of Womb cancer. I hope that your recovery from the hysterectomy is going well. 

If you click on my name you will be able to see my profile, but I also had LVSI and because of that I also had chemotherapy and external beam radiotherapy. This was last year and I am now a year from treatment finishing and am doing ok. There does seem to be a bit of variation between hospitals as to what further treatment is recommended. They will also look at all you circumstances and in detail at your post op pathology.

It was a shock to me to be told I would need further treatment as I had been expecting the hysterectomy to sort it and I can remember the consultant saying it was unlikely that I would need any follow up and if I did it would likely be radiotherapy only. When LVSI was found he said that because cancer cells were found in the vessels it meant I needed chemo to prevent systemic recurrence (whole body) and the radiotherapy was to prevent local recurrence. 

I do not regret having either treatment, as although not easy at the time, both were doable and I know that I have done everything possible to avoid any of those cancer cells that got into the vessel, travelling around my body and setting up somewhere else. With LVSI, any following treatment, is sort of a mop up of any minute cells that could have got out. 

I think at the time, I just had to put my trust in my consultant and I was happy to follow his advice, knowing that they would not put me through further treatment if it was not needed. I can remember my GP phoning me and saying that LVSI was the first stage of cancer trying to spread and although I was only stage 1b he recommended I do all the treatment offered. 

At around 6 weeks post op, I was given an appointment to come into hospital to discuss the recommended treatments and to go through any side effects etc. Hopefully you will soon be given an appointment to confirm your treatment. 

In the meantime if you need anything else, please do ask.

Jane

Thank you jane2511 for sharing that. That does kind of make sense the way you have described it. I understand that each area may have their own protocols and I have to have faith. I don't feel quite so alone with this. I am a bit scared tbh.

I remember being really scared when I was told that I needed more treatment but in reality my fears of what would happen did not match my experiences. The hardest part for me was that the treatment made me feel more unwell than the cancer/hysterectomy but looking back I had surgery in the April and treatment ended at the end of September- so in the grand scheme of things it wasn't that long. I remember at the beginning feeling overwhelmed when they said how long the treatment would last an in particular the 5 weeks radiotherapy- I thought I would never be able to get to the end of that-  but I tried to break it all down into steps so as not to become to overwhelmed- I did cycle by cycle of the chemo, got that out of the way and then with the radiotherapy- I crossed off each day on the calendar. 

I did not have brachytherapy (internal radiotherapy) as it was not recommended to me as I had no cancer cells in my cervix but if that is recommended to you there are lots of ladies on here who have had it.

Never feel alone with it- once you know for sure what the following treatment(s) are- there will be someone on here who has been through similar. Don't forget you can always contact your CNS with any questions.

In the meantime if there is anything you need or want to ask, we are here

Jane