I had smear mild abnormalities, then colposcopy month later - biopsy taken, told then I would need leetz and dont get pregnant, (results of biopsy pre cancer cgin) 3 wks later leetz, call to mobile 3 wks later come in and bring someone with me that a lot of stuff will go over my head. Told cancer found stage 1B early but I would need MRI and CT to confirm it had not spread. I had them yesterday. It was up there with the worst day of my life, procedure was fine just closed my eyes whole way through. My mistake was I asked the question do you know anything from what you saw. The lady said no, then she got talking and said, how did you get diagnosed? I said smear and she said really, it’s great they do them, (I taught then she could see cancer in another part of my body and that’s why she was asking) then she said I know if it was me I would just want it out (did you ever hear such a stupid statement?) I didn’t now if she meant cancer or womb, said of course I want it out I just have to go through the motions, at that she said are you meeting your doc today, I said no, she said they will have results in 2 day and to ring doc ( with that I taught she can def see something she knows). I said I was told stage 1B and she said how did they stage it for you and I said biopsy ( i taught she was saying that because she saw a huge mass on screen and taught where did he get that from) then she asked about my kids and what age ( I taught she was thinking oh the poor kids won’t have a mam in a year) I know all this is irrational thinking I know its my mind working overtime. Then after MRI I was sent out to a corridor with my clothes in my hand and waited outside CT room crying and crying, was the loneliest time of my life. My partner had a search party out for me and eventually found me. The fear in his eyes when I was crying so much he taught I got results. We then brougt the disc of MRI and CT over to my colposcopy unit ( another hospital). My partner saw my doctor in the carpark, this is hilarious, every time I think of it I laugh and laugh and laugh, he shouted at the doc sorry sorry she has the discs and he looked at us like who the hell is this and what disc (I’m sure he has 100’s of patients) so I explained i had MRI etc and I was told to bring discs over and started crying, he was lovely and reasurred me and said the girl who done MRI doesn’t know it has to be read by a radiographer and to make an appoint for wed. So I’m in wed. Such a roller coaster I have loads of symptoms, bleeding but they said it could still be from the leetz, lower backache, pulling feeling when I turn quickly like when pregnant, but to be honest i don’t know when these started and if its only from being diagnosed. Such a long message but it feels good to get it out. Reading back I realise how mad it sounds… I took a relaxation tablet last night and got some sleep. think I’m cracking up. Another thing they brought me into a room and got tea and toast for me and my partner and stamped our parking ticket so we wouldn’t have to pay and again I taught they done that because they could see what was ahead and felt sorry for us. does anyone know if the girl Doing MRI would know? She seemed junior because she talked so much, and she did said the only thing she could read would be a bit of fluid on a leg. Can anyone help calm me down?
Oh Noodles! A scary time indeed! Try not to upset yourself too much, there's thousands of us here who have been exactly where you are and know exactly how you are feeling. Procedures vary enormously from place to place so I couldn't tell you if the girl who did your MRI was qualified to analyse it or not, most likely not. No matter what stage you are at, this is a really curable cancer and you are going to be around for very many years to come :-) I would imagine that a lot of the symptoms you are currently experiencing are because of the LLETZ. You'll have a much clearer picture of what you have to face after your appointment on Wednesday, so not too terribly long to wait. All the treatments for this are surprisingly easy to cope with so try to relax, I have no doubt you will feel loads better after your next appointment.
Be lucky :-)
I do hope after a good sleep you might be feeling a bit better.
I felt the same way when I was going for all my tests. Thinking they were being extra nice cause they knew something I didn't. Especially when they were talking small stuff. Like"do you have any kids?" I totally was over the edge with hysteria.
Try to breath and keep busy as much as possible. I won't lie and say that I didn't need anything by 4 days I was such a mess from not sleeping well I could barely stand. I felt like a zombie. I went to my gp And got some anti-anxiety pills. I have never on my life had to take any kind of pills but they did indeed help. I took them when my brain was in meltdown and they helped me function, and to sleep. A well rested mind is a strong mind. I still have more then half the perscription. Because I only used them for such a short time.
Not saying for you to take drugs but if you need them don't be embarrassed to ask. This is a very scary time and it's so hard but I promise you it gets better. You will be ok.
Try to read nice positive stories and do things that make you feel good.
Oh honey we have all been there. Also keep in mind that those MRI's and scans are read by qualified Radiologists, not the techs that do the scans. The techs ask a lot of questions by nature, and try to make small talk. Your tech being a woman, may have been so inquisitive because she was worrying about herself! Since my diagnosis every female i know has ran out for a pap! We have all been there, right where you are and it is the scariest time of the entire ordeal, the not knowing exactly how bad is this thing part. I promise once you get an official treatment plan and a stage confirmation you feel so much better. Well as good as you can anyway. In the mean time get proactive. If you smoke, try to stop, start eating well, nutrition is important period, staying hydrated, just do anything to get your body in good shape and a good immune system. Although don't take any supplements unless your dr tells you too. Good luck and update us through your journey as you know more.
Thank everyone for getting back to me. I was brilliant all day. We are supposed to be going on holidays Thur morning, I have been saying i'm not going, but today I decided to keep busy and go shopping for a few bits. Getting bad period like cramps and when they come I'm right back to panic mode. I'm just hoping it hasnt spread anywhere else. I have the CGIN type and I read somewhere this can start in other area first? Oh roll on wed, and hopefully I'll be on the plane thur with relatively good news. Thanks again all x
I started taking wheatgrass did anyone else try this? Is it ok to take?
Nm_353 I quit smoking on wed when I got the news.
Just to let you all know, I got my results today of MRI and CT all ok just showing up some inflammation after Lletz. This explains a lot of my symptoms, lower back pain, bleeding etc. I'm so happy with the result, such a sigh of releif. I have myself wrote off!! They are still going to do the hysterectomy just to be on the safe side. I have the CGIN type (adenocarcinoma). I will also need a pet scan because my lymph nodes are showing up as slightly enlarged in my pelvis and stomach, doc also believes this is cause by the lletz and inflammation. I'm trilled, slightly sad I won't have another baby, but im so so blessed to have my two beautiful babies. They are my world.. my life is truly changed forever.
HI there noodles
this is great news! I'm so happy for you. Now go and enjoy your holidays and smile every minute of it!!!!
Glad you are feeling a bit calmer. 3 weeks after the lletz was a bit quick for MRi, I got made to wait almost 7 weeks so that everything had healed and any inflammation was gone. The lower back pain, cramping, bleeding all normal after a lletz, some people are lucky don't get much, some of us not so lucky, I had bleeding for 3 weeks and the pain was crazy.
fingers crossed all ok for your pet and they get your treatment plan sorted out quickly, then you can actually breathe. Once the plan is in place It actually does become a little easier xx
Thanks lolli888 & Amethyst,
I had a great holiday & while I was there I got a call with my operation date. It's on Thur 13th oct, everything is happening so fast. I habe my Pet scan in the morning.
Does anyone know if my only option is to have hysterectomy? My doc said there is a 50/50 chance they removed all with the Lletz, I know I need to do whatever is best and what's advised but I cant imagine never being pregnant again. I know I really have to thank my lucky stars I had my two babies but I'm getting married next year and it was always the plan to have a baby after the wedding. Anyway I know deep down im better off having op in order to have the best chance of being here for the two little rascals I already have. Just wondering if anyone done anything different?
also Amethyst, can I ask why you needed a radical hysterectomy? & 14 lymph nodes Removed? I think at the min mine is supposed to be a simple one leaving the ovaries, but the results of pet will say for def if it's simple or radical. The doc also intends taking the pelvis lymph nodes only. I'm just wondering because I was talking to a woman near me with similar story as me and she said to tell the doc to take my ovaries, I said it to my doc and he said no, I'm 33 and I'll need my ovaries for hormones.
Hi Nuala :-)
I see that your cancer type is adenocarcinoma. This is a sneaky little beast and starts higher up the cervical canal than the squamous type. Therefore you are safest having the hysterectomy I am sorry to say.
I had adenocarcinoma and plenty of scans (though not MRI nor PET) and was staged at 1b2 so had a radical hysterectomy (I was 50 at the time) When the bits removed were sent for analysis it was discovered that my tumour inside my uterus was larger than had been thought so I was re-staged as 2b and had chemo-radiation and brachy therapies to be extra safe even though the lymph nodes removed during surgery all tested negative. I hope this helps you to understand why the hysterectomy has been proposed. If you want to explore alternative options perhaps you could ask your team if you could get away with a cone biopsy.
Be lucky :-)
Thanks TivolI for the reply,
i'm waiting to be brought in for my hysterectomy now, I shouldn't be too much longer, the waiting around to get called is hard but it's the safest option and best chance that I'like be around for the 2 beautiful babies I have.
I will keep ye all posted on how it goes. Nervous but also happy to get it over with and move on with my life.
THANKS SO MUCH FOR ALL THE ADVISE
I had my hysterectomy and lymph nodes removed. I'm feeling good, they done through keyhole surgery.
on the mend now, hopefully I can get my life back on track and this will just be a distant memory.
Hurrah! Are you doing incredibly well or are you on strong pain medication?
Be lucky :-)
Good luck with your recovery Noodles. I've posted on here about my experience so have a look for my posts if you want to compare notes.
Thanks Tovili & girlwiththemostcake x
i read your post on your recovery gwtmc and it has been a great help. I was worried about a few things your brought up (Mainly resuming bedtime activities, I was a bit scared things would never be the same again) I must write my experience in a few wks, it might help someone.
One thing I didn't realise and wasn't really prepared for was not fitting back into my clothes, it's a wk today and I bit the bullet and tried my jeans, for comfort I had to tie a hair tie around the button. It really was getting me down going around in an old baggy tracksuits all day every day, So today I spent time doing my hair & makeup and felt 100 times better.
I have pains in my hips & lower back & bum cheeks, not sure how normal this is but its kinda worrying me a bit, it's like a dull ache deep in my bones. I still panic a bit and worry but I suppose this will go with time.
i decided to look for somewhere to do meditation or something to calm the mind and relax, obviously not until I'm fully back on my feet.
Thanks all for listening x
Floral fucsia harem pants will cheer you up more than trackies :-) Pains in hips etc. will be around for a while but should settle down eventually. Don't expect anything to happen in too much of a hurry, that way if it does you can feel lucky :-)
Be lucky :-)
Hey honey...glad to read your healing well...
im nearly 7 weeks post hysterectomy and I still get pains in my bum cheek (wtf is that all about) in my right hip and ovarie area (minds going into overdrive about this) and my lower back still niggles at times. You will get back into your jeans, I've been in mine a week now but I'm eatibg for Britton through bordom so it won't be long before I'm back to the old hair tie trick! I've put 4lb since my op 7 weeks ago so nothing to bad but with Xmas coming up I need to start eating healthy and looking after myself really...
Rest up and take it easy xxx
ps... I tried bed room activity 5 wk post op...had to stop 5 mins in but by wk 6 I had a very successful session and everything worked as it should! ;)