I have private health cover through my husband’s work so I waited a 5 days for LLETZ results and had the mri the next day. I have to wait 3 days for the results of that and treatment plan. I know it isn’t very long but it is such a massive worry. I’m really scared that it will be worse than they thought after LLETZ
@Hopingforsupport , the waiting is so hard. I’ve managed to cope a bit better by keeping busy and doing things I enjoy. Please let me know how you get on with your results. It’s good to know I’m not alone. Take care.
@Abi2 There was no advantage in having the mri quickly as they couldn’t tell exactly where the cancer was due to inflammation! I have to have another mri in 3 weeks which will be 5 weeks after my LLETZ. I am really hoping that what they saw was mainly inflammation as, if so, they will give me a hysterectomy but otherwise I will have to have chemo and radiation.
Have you been told to wait until after your mri to have sex or just to wait until 4 weeks after LLETZ?
@Hopingforsupport How frustrating. At least you’ll get a true reading in a few weeks. I’ve not asked about sex but ive not been told not to before the mri. I can check on Wed at my appointment. Thanks for the update its actually made me feel better knowing inflammation is an issue when scanning too early.
@Hopingforsupport how you doing?
@Abi2 I’m ok. Thanks for asking. I have a CT scan booked for 31st and an MRI on 5th Feb so just playing a waiting game. I can’t help worrying that the cancer is getting worse meanwhile and I am really looking forward to knowing the treatment plan because I feel I am in limbo. I haven’t told anyone except my husband. I will need time off work but I don’t want to tell them until I know when. How are you doing? When are your appointments?
Im also in limbo and terrified. My initial staging post loop biopsy was 1b2 but after a clinical exam from the surgeon last week hes upstaged me to 2b. I have my mri on 29th jan and mdt on 2nd feb. Its all tslaking too long! If they’d just done an mri before the loop or even a clinical exam id have started treatment by now.
Ive found that telling people has really helped me. It’s hard enough going through a cancer diagnosis without having to keep it to yourself and your husband. I know everyone is different and deals with it in their own way… keep me posted.
@Abi2 I don’t want to tell my 4 adult children until I know the treatment plan and I can’t tell anyone else until they know.
Have you had a CT scan? Sounds like you are about a week ahead of me in terms of finding out the next steps
@Hopingforsupport i havent had a ct scan yet but hoping to be booked in soon to save any delays. My children are only 4 and 7 years old so haven’t told them. I’m really anxious to get started with treatment asap and to get a good outcome. Unfortunately i’ve got a rare sub type of adenocarcinoma ISMILE with lack of data. Who knows what the future holds. I hope you get your treatment plan soon and you can share your news.
@Hopingforsupport how are you? Did toy get the repeat mri results?
@Abi2 I am due to find out tomorrow evening. Have you had your results yet?
Yes. I’ve been staged at a 1b2 radiogically by mri but the surgeon staged me at a 2b when he did the clinical exam. Mdt recommended a pet scan to confirm ataging and it’s only highlighted where i had my cone biopsy thankfully. I think this means im back to a 1b2. Im for mdt again tomorrow so hopefully will have a plan then. Good luck for your results.
@Abi2 I have been told I am stage 2b and need chemo and radiation. No hysterectomy. I am having a PET scan next week and then there will be a plan. Have you heard any more?
@Hopingforsupport im glad youve got a plan now. 2b is still treated as curative but always a blow when youre upstaged so im sorry to hear that. Will you tell your children now? Any idea when you will start treatment?
I’ve been told im at least a 1b2 so primary treatment is radical hysterectomy. I still may need adjuvant treatment depending on the post op histology.
@Abi2 I will see the oncologist next week and then tell my children (and my work!). It is annoying to be upstaged but I was quite worried about having a hysterectomy and then still needing chemo and radiation. I just want to get started!
@Hopingforsupport im also a bit worried i’ll need further treatment but just got to trust the team k ow best. Good luck for next week.
@Abi2 When will you have your hysterectomy?
@Hopingforsupport not got a date yet but i should k ow more on Wed when im in clinic.
Hi got called in to discuss results yesterday following smear that showed CGIN with features of neoplasia had lletz and biopsy 5 weeks ago. Consultant said he’s almost 100% sure it’s Adenocarcinoma, he has booked me in for an MRI and CT this week for grading and then a second loop/lletz with a consultant at the end of February. Not sure what will happen then. I’m relieved to get some kind of diagnosis after the long awful wait for results but now have got the major worry incase CA has spread, does anyone have time scales for how soon after MRI/CT a treatment plan is made. Consultant did discuss possible hysterectomy and maybe radiotherapy, also another treatment that began with L that I didn’t quite understand. Wish I had asked a lot more questions at my appointment