Results today

Hi Tashton 

My side effects have to be put in the context of I have had several previous pelvic surgeries and I am a diabetic. Also I know I have adhesions from previous surgeries because my surgeon told me. 

I have bowel and bladder urgency and pain with radiation burns on my caesarean scar.  Medication is helping to ease all these symptoms. I am only two weeks post the end of my radiotherapy course. I was told it continues working for a few weeks afterwards. 

Not everyone experiences this in fact I think I would be in the minority. I would make the same decision to have it again as a protection and insurance from reoccurrence - as I had LVSI so my cancer was not contained. 

I have read somewhere that you can't have radiation twice on same area.   Is that right.   Does this come into the decision making 

I think it would be a good idea to write down all your questions and wait for your meeting with your oncologist rather than trying to guess what they may be going to offer you. We are not medical and shouldn’t speculate on how they may reach their decision as to what they decide is the right treatment for you. Were you not told what adjuvant treatment they were thinking of?

No, nothing 

If it was me, I’d be phoning my CNS and asking if I could be told what treatment is going to be offered to me, so that I’d have the chance to research it before the meeting with the oncologist and ask informed questions. When I got my histology results I was told radiotherapy and brachytherapy- details to be confirmed by the oncologist when I saw her. 

Because I have access to my medical records with GP I have seen letter to oncologist asking for an appointment for me and it says I have extensive LVSI.  I didn't know this.  

Hi Tashton, bless you - that must have been a shock and they really should have told you this when you got your results rather than you finding out this way. When I got my results I had a full breakdown of all that had been found. I’d advise again phoning your CNS to both mention this and to ask what adjuvant treatment is being advised, so that you have time to process it before your appointment 

So I'm still waiting for my appointment to discuss treatment with oncologist.   My CNS nurse when she saw me said I had officially been cured and cancer has been removed but I need to see oncologist to discuss adjuvant treatment.  My husband can't get his head around this .  He said so it's cured but ... There is a but, you still need treatment.  I can't quite know how to explain it and it's making me confused.  Any helpful advice?.  I'm stage 1b grade 2 with LVSI. Post histology results. 

Hi again Tashton, I’m someone whose hysterectomy resulted in me being declared cancer-free but having adjuvant treatment recommended. This is how I explained it to myself: I was “cured” of “active” cancer but needed treatment to minimise the risk of future cancer. I didn’t have LVSI but there were cancerous cells found on top of my cervix and pre cancerous stics in my fallopian tubes so there was a bit more activity than expected or desired, so my treatment was basically just in case, I don’t know if that helps at all! 

I was Stage 1b and Grade 1. CNS told me over the phone I had LVSI. She explained what it was and that it meant pelvic radiotherapy would be recommended. She also said that POLE tests were being done and if these were positive I wouldn't need pelvic radiotherapy. 

Such a lot of info to take in at the time!

I wasn't POLE positive and I started the radiotherapy just over 12 weeks post op. I had 27 daily sessions in total.