Lymphovascular space invasion

Hi Deborino . None of us are medical experts but we do learn a lot on this journey. I would give your CNS a call for more clarification of the referral letter if you can't contact your consultant.

FiGO staging is the acronym of the French name Fédération Internationale de Gynécologie et d'Obstétrique which is the worldwide organisation representing Gynaecologists and Obstetricians. Stage 1A means contained within the womb and penetrated less than 50% into the muscle which is good.

FNCLCC grades the Sarcoma so you're in the middle at 2 there (1 normal, 3 very abnormal)

Christie will take all this on board when determining your treatment plan so I know it's scary but sit tight and wait to hear from the experts. You'll get yourself tied up in knots. I know they have to send us copies of these referral letters but it just send our anxiety levels sky-high and we immediately consult Dr Google - DON'T do that !!

It'll all come clear very soon, in the meantime big hugs your way.

Barb xx 

Thank you Barb. I can't get hold of the gynae nurse or the consultants secretary. It's so frustrating when you get a bombshell like this on a Friday.

Hi Deborino. Sorry I'm a bit late replying. Yes that's Sod's Law. I phoned to try and get my Histology results on a Friday. All the Nurse would tell me was some abnormal cells had been found and I'd need surgery. I climbed the walls all weekend - mind you by the time I spoke to them on the Monday I was as calm as a cucumber!

Stay positive!

Big hugs, Barb xx

Hi DeborinoI was Stage 1a Grade 2 with Lymphovascular Space Invasion 4 years ago, and the treatment I had for that following the hysterectomy was 25 sessions of external radiotherapy and 2 sessions of brachytherapy.  I won't say it wasn't hard for me, as I have other health problems too, and I do have a couple of longer lasting side effects/damage but felt I had no option but to have the treatment to do my best to reduce the chances of recurrence.  It is all completely do-able, though very tiring.  I hadn't found this forum until I was booked for my radiotherapy sessions and had never heard of LVSI so of course Googled which isn't the best thing to do!  I am sure you will find lots of advice here.  Rest plenty and drink lots of water are both very helpful in going through the treatment if this is what you will be recommended when you see your Oncologist.

Hugs, Lesley 

Hi Lesley, thanks for your reply. How long did your treatment last? I feel like I can't make any plans for a holiday or family parties etc. How often do you have follow up appointments? D x

The treatment lasted about 6 weeks, usually Monday to Friday with weekends off!  The 25 daily external radiotherapy sessions were first and then when they were completed I had the 2 brachytherapy sessions a few days apart.  I had 3 monthly check ups for the first 2 years, which then extended to 4 months and then supposedly 6 monthly last year but due to Covid a couple of those were telephone consultations so no physical examinations.  The check ups usually last for 5 years, but I was told that sometimes they can continue annually for anyone who is anxious about not being kept an eye on - if that is the case I think I will do that.  I had my check ups at 2 hospitals alternately, my local one where I had the surgery and UCLH in London where I had the radiotherapy.  It is my local one that said check ups might be able to continue beyond the 5 years.

I had my surgery in the June (2017) and then the radiotherapy started in September and finished late October, they like to make sure it's done within a certain time following surgery.  You then really need a few more weeks as side effects can continue after treatments have finished. The tiredness should gradually subside as time goes on, but I have been left with a few bowel and bladder problems.  Some people do, some don't, unfortunately I have but nothing thats not manageable.

Hope that all helps!

Lesley x

Thanks for the information. I feel a bit more prepared now. How did they discover your cancer? Mine was just by luck as I hadn't had any symptoms.

Deb x

I had occasional spotting for a while and then one day what seemed like a light period and then went to the doctor.  I should of course have gone after the first spotting but it was so minuscule and hardly noticeable and I had a lot going on - both my parents died within 3 weeks of each other - that I dismissed it for a couple of months.

Lesley x

I'm so sorry about the loss of your parents. It's no wonder that you didn't take action immediately. I didn't have any symptoms except severe pain in my  stomach and back. The hospital thought it was a kidney stone and then appendicitis. Luckily they scanned me and found a mass on my uterus. While I was in A and E I had a tiny pale pink discharge but other than that I had no other bleeding until after my biopsy. I'm so lucky that the Christie hospital is so near us, I have lost confidence in our local hospital.

Take care, Deb x

Hi Deborino I was the same as . I'd had my menopause years before but a couple of days after my 67th birthday I noticed pink mucous like spotting on my undies a couple of days apart. I'd had no pain, bloating nor bleeding and was going to ignore it, didn't think it was worth bothering the GP.

Funny thing I could almost say it's thanks to Tesco! I normally wear Tesco's black full brief cotton undies. I wasn't able to buy any due to the onset of the pandemic and bought a multi pack of white ones. I might not have noticed the spotting as it was so light!

Sending hugs, Barb