Diagnosed on 18th March 2022

Hi K and sorry you find yourself here.  You are at the hardest point of all this, not knowing and agonising waits for answers.  Every lady here knows what you are going through now.  And to be told that you're clear, and then not, that is just inhumane!  It does seem like an endless time of tests and appointments before treatment starts but they do need to be armed with all the accurate information so that they can decide the best treatment to rid you of this.  It may be that you'll have a pet scan also.  I had biopsies taken, MRI then Pet scan after presenting symptoms in early November and I still had an EUA on 11 January then started treatment on 25 January but there was Christmas and New Year during that.  Everything becomes so much easier once you know what you are dealing with and how they plan to treat it - and they WILL treat it.  There are many lovely ladies on this forum who will soon be here with lots of good advice xxx

Hello K, and a warm welcome to our group. 

Oh my, I can’t believe how tough it would be to be told you have cancer after being told you hadn’t, and I’m sorry you had to go through that. I would have thought the mri would have shown everything in your pelvis and included your bladder and bowel-all my mri scans showed my whole pelvic area. 

If they are considering doing a leep, they must think the cancer is very early stage..but I would think they would need the results of the mri to confirm. If you have an examination under anaesthetic it will very much depend on what they see to determine whether a leep would be an option. The cancer would need to be very, very small I would think to do this. 

This is a horrible limbo time of waiting, which we all understand, when you have a cancer diagnosis but no further information or plan of action. Things will become easier when you do, but it’s very important that your team have a full picture of what’s going on to decide the best way forward.

Hopefully you will soon have the answers you need, but there are always lots of appointments, scans and checks before anything really gets going to deal with this, so try not to be too alarmed by this. I waited 6 weeks from diagnosis to the start of my treatment by the time they had completed all my scans and planning.

Sarah xx

Thank you so much for replying. I also have adenomyosis which is causing me horrible symptoms so that is getting to me tooI am one of life's 'doers'! If something needs doing i just crack on and do it, so finding this waiting and doing nothing practical SO hard ! I am trying to focus on eating healthy and drinking lots of water ...it's the only thing I can think of to prepare for battle x ‍

Oh Sarah, thank you so much for that....yes that makes sense about it needing to be small for a LEEP I know they said it looks small from my colposcopy pictures and biopsies but they have said it depends how deep it goes, so hopefully the MRI will tell them that. Probably really trivial in the scheme of things but I'm thinking if I need a hysterectomy anyway...just do that?? They said even if they felt like they got it all in the LEEP I would still have to have a hysterectomy??? Is that damage limitation in terms of spreading maybe ??get the cancer out first? This really is just a horrible stage...knowing you have cancer but not how bad it is or what lays ahead. I am trying so hard to stay positive and be healthy xxx what stage of the journey are you on ?x

Hi K

Usually they don’t want to “over treat”, but hopefully once they have all the info they need you will have a firm decision on what’s needed. A hysterectomy would resolve the adenomyosis issue, so it may be the best course of action for you. 

if you click on my name you can see my story-I’m 3.5 years out from my original diagnosis, but unfortunately had a recurrence. I was very unlucky in that respect but lucky in others! 

Sarah xx

How you doing...not very wheather in Carlisle windy & rainy not nice for walking..whst you're been up 2...xx

Hi Nahla, I'm good thank you.  I read your other post about your letter and I know it sounds alarming but the radiotherapy and brachytherapy do keep working for a long time and it may well be that things have improved further when you have your next scan.  It is so hard not to worry.  I went for my walk today, trying to go a bit further so probably there and back am walking nearly two miles.  I spend a lot of time in my craft room and also I'm a "closet gamer" so from about 5pm I play my Nintendo Switch or computer for a couple of hours!!  Then after tea it's on to Netflix or Prime for my latest binge watch.... Anything to keep my mind occupied!  Good luck and stay strong as much as you can xxx 

I now have my staging..3C...because it is trying to escape and has grown into my left pelvic wall. It would have been small enough for a hysterectomy size wise as it's 3.5 cm x 4cm but because of it growing sideways it's graded higher and will need chemo/radiation and brachy. They still want to do the LEEP though before they start treatment? What is to be gained from that ? I'm also going to be having a PET scan x

Hi K

I have literally never heard of doing a leep before treatment in this way. Have they said why? Your scans give them the information they need  and I personally wouldn’t want anything being done to a tumour that size unless it was chemo and radiotherapy. I would be asking a lot of questions! 

Sarah xx

They just said the LEEP would clarify the scans, but as you said i would have thought it would be the other way round. They said they will also be putting a camera into my bowel and bladder to check them....I questioned did the mri with contrast show my bowel and bladder and the nurse said yes they are all clear but the tumour is pressing down slightly on the bowel because of it's position. I am worried they are going to disturb cancer cells by going 'in'. I think I will contact them again....are there any specific questions you think i should ask other than what i have addressed in my post ?x