Hi everyone I have another question...so after being told Feb 23rd I have cc and 2 months of mdt meetings and various scans plus a eua they've decided on staging me at 1b1 even though I have lvsi identified and pararmetrial involvement both sides...so consequently because of the staging given it qualifies me for a hysterectomy...I'm not a sit back type of girl I like to know what's happening and I've done loads and loads of research since my diagnosis and from that and all of the help I've got on here I'm starting to worry about the fact they've decided to go with a hysterectomy...apparently the chance of reoccurrence can be higher if you have a hysterectomy with lvsi present so why the hell are they going down this road with me...initially I was told it would be chemorad for me because they expected my staging to be at least 1b2 maybe even 2a...but after the last mdt they've gone with 1b1....so my question is...is there anyone on here who has had a hysterectomy knowing they have lvsi or parametrial involvement and not had to have chemorad after the hysterectomy? Seems silly to put myself through a major op if I'm to need chemorad after it!!
My minds doing over time once again and I don't get to speak to my doc until may 10th so any input would be gratefully revived so I can calm my mind down again..
kay xx
Hi
I had a hysterectomy because i was 1b1 and after they found i had lvsi and parametrial involvement. None of which ever showed up one my pet scan. So now i have to do chemo and radiation which i am almost done. My doctor told me that i had to have the extra treatment to lessen my chance of recurrence. So i did it. Hope this helps a little. :-)
Hi Thankyou for you reply...my confusion is that they have actually identified lvsi and parametrial involvement already from my biopsies, scans & eua but even with all that they've abandoned the chemorad and are saying I'm to have a hysterectomy! So im slightly worried and confused at the moment..
kay x
Hi
Maybe your doctor thinks he can get it even with all this. Normally they try to get it the first time. I have always trusted my doctor from day one. They do have your best interest at heart. But u can ask your doctor and c what he says to u.
XXX
Hi Kay :-)
I have to say this is all really rather astonishing. I am not a doctor and I wouldn't expect to know better than a doctor but if I were in your situation I would request that my doctor takes the time to explain to me exactly why he is opting for this treatment knowing what he knows. When I was treated I was initially staged at 1b2 and had a hysterectomy. During the hysterectomy it was discovered that my tumour was larger than expected so I was re-staged at 2b. However, while they were in there absolutely everything was tested and the team were quite surprised that I had no evidence of LVSI or parametrial involvement. But even so, it was decided that I should go on to have chemorads and brachy after the hysterectomy anyway.
(((((HUGS)))))
Be lucky :-)
Tivoli
Hi tivoli, I the same as you find it quite astonishing! I really don't know where they are coming from with this decision at all...a letter from one doctor to another clearly stated lvsi identified and suspicion of parametrial involvement both sides however I must add that this letter was before I had my pet scan and my eua so the decision to go with a hysterectomy has been made by the mdt meeting after the pet and eua so I'm just wondering if they found that there isn't lvsi and parametrial involvement...one things for sure I will certainly be challenging their decision at my appointment on may 10th
thanks again
Kay x
HI Kay, I was just reading your posts from May and wondered how you were getting on? I am currently where you were then. i was diagnosed with stage 1b with evidence of LVSI after the removal of what they thought was a polyp. I was sent for an MRI scan and then the MDT said they wanted a pet ct scan. They looked at that and now they want another MRI this time with contrast and done by the radiologist who is part of the MDT. I don't know whether to see this as a good sign or not. My consultant played down the LVsI when I asked him about it and says they want to offer me a surgical option but need more info. It is now 35 days since I first went to my GP knowing something was very wrong and I flit between feeling really positive and thinking the worst. I hope all has gone well for you and if you get this would love to hear how you are doing xxx
