Hoping hysterectomy is going to be enough but doubts creeping in

Morning Seffie 

I can understand why you’re still concerned about the LVSI being present and why you’re worried about something being missed. Obviously you’re looking for stage 1 post hysterectomy ladies to reply so I’m not in that category, but I hope you’ll hear from others who are. It’s such a shame you have so much worry about everything in your recovery from the op.

Sarah xx

Thanks Sarah, i need to understand better their decision not to offer radiotherapy i guess so i know i need to talk to them really x i didnt meet the criteria for it but just need more details re: that decision x have been doing well but just stuck on this atm, thanks

I absolutely understand your need for further explanation-LVSI can be one of several factors which can impact on potential recurrence so your consultant should justify why radiotherapy is not recommended in your case. Ultimately it will be a clinical decision, but you deserve to know why.

Sarah xx

Well at my appointment i asked him about the LVSI and he said the other 2 factors they look at were negative, i think its DSI and tumour size, so thats how they decided, he also said these were intermediate risk factors not high risk ones. Maybe other factors too like grade 1 and everything being removed at the first LLETZ? I will definitely discuss my concerns and see if i can get more info and reassurance from them for some peace of mind if nothing else. i’m only 6 wpo so it coukd still be an option but i guess they have to weigh up risks vs benefits

Hi Seffie 

It’s Louise. Although I can’t reply with the experience you’re looking for as I’m about 4 weeks behind you (currently a week and a half after surgery for me so waiting for my appointment in a couple of weeks to find out about histology and any further treatment), I thought I would reply to say that I have similar thoughts in my head: although I don’t exactly want to go through radiotherapy, I’m concerned about recurrence and whether the chances of this would be reduced with radiotherapy. The consultant has said throughout that they expect/hope that ‘just’ surgery will be required in my case (a very big ‘just’ to describe surgery there!) but I obviously won’t know until I have my appointment. Sending some solidarity and hugs. x

I know the tumour grade can be a factor, the level of invasion (the DSI) and what the histology has shown. It sounds like your consultant is comfortable that your risk of recurrence is not high but that won’t help with your worries, I know. 

I hope if you do get further reassurance, you won’t let worry about possible recurrence dominate your thoughts if radiotherapy is deemed not necessary. I think everyone who has had a cancer diagnosis does worry at some level about recurrence but I know from my own experience how difficult it is to move on if you focus on that possibility.

Sarah xx

Thanks Louise, much appreciated! its a strange one because its good that they dont think radiotherapy is needed but then after the relief wears off you get to thinking is this enough? the LVSI is the issue for me, without that i would feel more positive but surely they are the experts arent they?! i hope your recovery is going well and all the best for your post op appt, let us know how it goes x thanks again xx

Yes well one of the hardest parts for me has been the realisation that the fear of recurrence will probably always be there so its learning to live in a way that doesnt spoil the very life you’re trying to save but thats a work in progress, the whole thing still hasnt really sunk in, still find it hard to take in that this is happening to me, sure we all go through that. I’ll call the nurses next week as they are very good and see what they say, thanks x

I have found you can live with it, but my original diagnosis was nearly 7 years ago and I’ve already had one recurrence so I’m looking at things from a different perspective.

I know my options are very, very limited if I have another recurrence and it would not be treatment to cure as that wouldn’t be possible so I don’t want to spend any time worrying about it when I am well for now. It’s absolutely nowhere at the forefront of my thoughts.

Sarah xx

Hello Seffie, 

I totally understand about the doubts creeping in after the initial relief at results and being told No further treatment needed. In my case I was worried about the tumour size 1B2 when prior to surgery had been told 1B1. I did have a Consultant follow up 6 weeks after surgery when he went over results and that helped. I believe the decisions on treatment are made by a few Senior Doctors who have vast experience. My Consultant seemed to find it reassuring to know that the Radiotherapy option was 'in the Bank' so to speak if needed.

I have read on Cancer Research site that the majority of ladies who have radical hysterectomy don't have further treatment. I also spoke to a very kind helpful nurse at The Eve Appeal who said the same. (hope ok to Mention, I have no affiliation)

I appreciate that you are concerned about the LVSI,  I suspect the nurse will repeat what you have been told by Consultant so perhaps you could ask for Consultant input as you concerned and it will help put your mind at rest.

Also you have been offered follow up mri scans which is reassuring. 

I wish you All the Best in getting some more information  as to the reason they made the decision in your case. 

Serena77 x