Radiotherapy support

It seems to me that other people know a lot more about their cancer than I do about mine - how would I know if I had LVSI? (just had to look that up) the only information I have on mine is that it was 1a but went to 1b after the hysterectomy. Brachytherapy came as a complete surprise as initially I was told all it would be was surgery. I'm glad I did the brachytherapy, don't get me wrong, as I dont ever want it coming back but I just feel like there is a lot I dont know that maybe I should?

I'm having bloods taken later this week for cancer genetics (investigation of another illness I have) and I'm really scared that there is something I'm not being told

Hi jane and Waidh, I’d not heard of dilators being advised for radio at my hospital, just for brachy, so maybe it’s a different hospital thing or maybe it wasn’t mentioned specifically to me because they knew I was having brachy as well.

I had radiotherapy only and dilators were advised 

Possible because they knew you were having Brachytherapy, as I am at Southampton as well. I actually questioned it, as there was a bit of confusion re Brachytherapy for me. It wasn’t on treatment plan I signed with consultant, but radio team had me down for Brachytherapy appts. I queried them, and they checked agreed no Brachytherapy, so I then asked about the dilators and appt to discuss use, and they confirmed I still needed to use dilators.

I didn’t get told everything when I had my post op appointment, I then got a letter about a month later which summarised discussion at appointment, and at the top of that letter (and subsequent letters) it lists what they found. 

That makes sense Waidh. I’ve edited my earlier post.

As far as I am aware dilators are always advised for any form of pelvic radiotherapy. It does make sense to me as the vaginal vault area is targeted for both brachytherapy and also within a bigger area for EBRT. The dilators are to help prevent stenosis so would be particularly necessary where the wider vaginal/ groin/pelvic area is treated. 

I would imagine that because you had the brachytherapy it was already covered for you and so didn't come up during your EBRT sessions. 

Jane

Hi Chipmunk

If you had LVSI then it would have been included with your post op results. It would normally be written on all your letters where they write the diagnosis. You would have been told about it and its not something that they would have kept from you.

The change from 1a to 1b means that before surgery they thought that the cancer had grown less than 50% in to the muscle layer of the womb. The post op pathology showed that it was more than 50% into the muscle layer. 

For a grade 1 cancer that is staged at 1a, a hysterectomy can sometimes be the only treatment. As yours ended up as 1b then some form of adjuvant therapy would be advised. If yours had LVSI then it would possibly have meant external radiotherapy as well. If it had been a higher grade with LVSI then it may have also included chemo. 

Good luck with the blood tests

Jane

I got copied into a couple of letters sent from the hospital to my GP which contained some of the technical terminology that I hadn't picked up from face to face consulations beforehand at the hospital.    

Thank you for your reply. I have never received any post op results in writing. I was told it had gone from 1a to 1 b. I only found out about the brachytherapy initial appointment on the Saturday afternoon through a phone call. The appointment was the following Monday. Somebody did mention to me at appointments that my correspondence was set to silent but when I asked about this nobody seemed to know anything about it.