Results today

Hi Tashton 

I can relate to this completely. When I was told I had some LVSI I looked it up and read some research papers online. I had a natural and understandable curiosity. The reason I did this was the paucity of detail from the CNS - I just wanted to know more and I still do. No-one can answer my questions until I see my Consultant next in April. They have my notes after all. 

I have a list of questions I will be asking at that next appt (I completed 27 pelvic radiotherapy sessions 3 weeks ago). I am one of those people who likes lots of information and the most up-to-date and relevant answers will come from your team who are caring for you. 

1. Sorry but does this mean it wasn't explained to you when that suggested your treatment?

They said I had LVSI. They said what it stood for and why adjuvant treatment would be beneficial. But there was much more I wanted to know about LVSI generally and so I did some reading up as I was curious.

When I have my next appt I will ask to see my pathology results in more detail. I have some other questions too now that the treatment is over.

As someone who feels better for knowing as much as possible about my health, I can relate and empathise. I’m not at all excusing possible failure to give info by any member of our medical teams, but I do think that maybe they struggle sometimes knowing how much to say and how much not to say as some of us don’t do so well when we know more, especially when it comes to medical terms. I also think there’s a fair amount of “educated guesswork” goes on with our diagnosis - well, probably a lot more than guessing, but decisions made to the best of their knowledge given the sometimes limited evidence, info and research results available. I think there’s probably a fair bit that is not fully known. I think they are also sometimes unsure as to how much of it all to communicate to us, and also when, even when we appear to want to know. I noticed this when this all started for me, and almost had to prompt them to tell me more than just the very basic almost platitude-like info.

Hi MarmiteFan59 

I agree 100% with everything you've said here and thank you for replying to me.

When my histology came back, they told me that, as well as the few stray cells found on top of my cervix, making me a stage 2, they’d found something “unexpected” and “rare”, and that they “didn’t know what to do about it”. (This was the pre-cancerous stics in my fallopian tubes that if not discovered would have moved up to my ovaries and caused high grade cancer that would likely have been hard to treat or untreatable). How they told me freaked me out, as when have something like this we want someone else to know better than us and to know what to do about it, but, once it had had time to settle in my mind, I learned from it - which is that cancer diagnosis and treatment is an ongoing and ever evolving thing, which is why they need funds for research. This is one reason why, if we have genetic testing during our cancer time, they ask us if they can keep our samples/results notes on file, in case there are any new future developments. I didn’t test positive for Lynch or BRCA, but there’s a possibility that my stics may be a genetic thing that they just don’t know about yet. That’s scary but I have to just accept that and move on. When I mentioned the stics to my oncologist at a later appointment, the response basically was that she’d hope that the radio had covered anything that might have remained in my system from that. She didn’t know for sure, and couldn’t know. So I couldn’t expect her to say. 

I can only imagine how you felt when you heard that news MarmiteFan59  

Your point "cancer diagnosis is an ongoing and ever evolving thing" is really helpful. If you add your point to the different Trust policies; Consultant preferences; our individual circumstances and any preexisting health issues we all have; you can see what a varied selection of treatment experiences we all have - and talk about on this forum.

Some similarities yes, but no one size fits all treatment programme. 

I have noticed that the majority of people similar results to me with LVSI are offered EBRT and I have seen information on an NHS site suggesting this.  I know it may sound silly but my main worry is that they won't offer me this, just the brachytherapy and I would feel more comfortable having the external 

Some are, some aren’t - treatment plans are tailored to the individual and consultant preferences. Your CNS should be able to tell you now what they’re planning to offer you so I’d suggest you give them a call tomorrow morning to ask otherwise you’re just going to be worrying until your appointment next Monday, and for all you know you could be worrying totally unnecessarily! Sounds to me like they may be erring on the side of not telling you more than they think you need to know, to stop you worrying, and may be totally not aware that not knowing is making you worry more! 

Really need Monday to come so I know what's going to happen. I did ask like you suggested and she thinks they may suggest internal radiotherapy but not 100 per cent sure.  This worries me greatly as most people I've read about get given external due to the LVSI and I can see hawthorn you were given chemo.  She said my grade not high enough for that but same grade as you?   I just can't get my head around it.  I don't want to be under treated