Hi, dont know where to start really, I have had a history of abnormal smears for the last 17 years. Had HPV and cin 2 which was treated successfully about 12 years ago and then I moved counties and was put on a five year recall. I wasn't happy with that but they wouldn't change it. Then I was called for a routine smear about 6 weeks ago, nurse said it looked ok but the results came back cin 3. Went for the colposcopy but because I've had ablation on my heart they decided that I needed to have a general, which I did last Friday. They did a cone biopsy. The consultant popped in to see me, said all was ok and I would be discharged back to the gp and a follow up smear in 6months. Then I had a call Thursday from the consultants office asking me to come back in next Tuesday. I left it till the next morning but thought there's no way I can wait that long so I called them back, I said I know something is wrong but naturally they would not discuss it on the phone. Deflated I hung up but they called back an hour later and the consulitant agreed to see me out of clinic.
I was at the hospital and knew what was coming when the consultant popped out of the office for a minute and returned with a nurse, she had a Macmillan badge on her ID. The nurse asked me if I had come on my own, I'm always on my own I said. The consultant drew me a picture showing the abnormal cells, the area the biopsy was taken and a large pea sized scribble. The scribble had been cut through with the biopsy, it was inside the cervix tissue. She was so nice the consultant she said that they were surprised that it was cancer. I wasn't. At this stage pathology do not know what stage it is just that it is cancer, unfortunately the consultant says it is possible that it has been growing for some time. It may have spread.
So after my meeting and learning that the nice nurse was to be my cancer specialist nurse I came home and told those that need to know. Fair play to the hospital they were on the phone to book me in for the MRI on Monday, still waiting on a CT scan appointment and an app with the oncologist is for 1 October.
Surprisingly I feel calm now I know it's cancer, I cried a couple of times when telling the first 2 family people but then I didn't. I have a son who's 18 and a daughter who is 8. I'm a single parent now, my husband and I separated last year, he has Aspergers. We still love each other very much but home life had become a battleground for both of us and the kids and it had to stop.
I have started to experience cramps in my pelvic region which has started today more noticeably. I am concerned that this cancer has been growing away for years and has spread to other areas . I know it's to early to speculate but thinking back over the last few months there have been odd things happen, I had 2 episodes of wetting the bed, besides being mortified I had no idea why. I'm 47, don't drink alcohol so it's not like I had a skinfull, I just don't know why, I also was experiencing night sweats. I have no idea if I'm menopausal as I've been on the pill for years for fibroids in the uterus so haven't had a period for a long time.
Any advice or experience will be so much appreciated,
So glad you've found Jo's. There is a wealth of experience on here and I'm sure you've been busy reading through past posts. I'm sorry to hear of your diagnosis. It sounds like things will start moving quickly and once you've had your scans everyone will know what they are dealing with. I was utterly comvinced I had 6 months to live, yet here I am 20 months later. There is nothing you can do now except wait for the wheels to turn in motion. I'm a single mum too, and my son is Aspergers so can understand the feeling of being alone. Once you've got results from the scans a treatment plan will be made and like I said everything will move pretty quickly. The main site has loads of info of what these treatments may be. Try not to go too far into google land. You will drive yourself nuts.
At your stage in the timeline I took myself to my GP and got some sleeping tablets. It may be something you want to consider. Keep us updated of your results. You aren't alone now!
Prior to my diagnosis, though I didn't wet the bed I did pee in my pants on more than one occasion. I had night sweats too. Suspected both were menopause symptoms but it turns out the loss of bladder control was because I had a couple of fibroids in my womb pressing on my bladder. Prior to the two large fibroids, for years I'd had a forest-full of tiny ones, so in many ways our cases are very similar I think. I was diagnosed with 2b 4 years ago, had all the treatment and am as fit as a fiddle. Definitely keep away from Google and ask us any questions you might have.
Tivoli your experience is really reassuring and that would make sense with the fibroids. I have looked at cancer research but I know that as much as I look everything depends on the scan results, waiting is the worst. Had the MRI this afternoon and they gave me an injection of buscopan?? Said it was to relax me so I didn't "go". Just waiting on the ct scan appointment now.
Just wanted to add my comment...i was diagnosed on August 21st and after an MRI i was graded 1B1. I am actually just back from the hospital where they have done an internal examination under General and they've confirmed there is NO spread and my hysterectomy is booked for October 15th. I was one of the "unlucky" ones - i have had smears since the age of 18 (i'm now 37) - every 3 years, never missed one, never late, never had an abnormal result. My last smear was April 2014. I only went the GP because i had spotting in between my period . Therefore I was CONVINCED that my cancer was aggressive, sneaky almost. That it had been festering away for years. My reality is very different. I am still early stage and treatable.
I will say - after my diagnosis I became very aware of that area of my body. I felt every twinge, ache, pain in my pelvis, back, stomach etc and I was CONVINCED i'd be riddled with cancer. Your mind plays tricks with you and takes you to some dark places. The key is to keep busy busy busy - even when you want to stay in bed and throw the covers over your head! Once you have your MRI and CT results and you meet with your consultant, you will feel so much better believe me.
Think positive. We are all here to support you xxxx
Hi Kelly, every word you said resonates with me, I am noticing everything. I spoke to my nurse today and they are having the MDT on Thursday and she is going to try and get me in with the consultant as he won't be here on the first of October and I will have to wait another week. The CT is booked for Monday 7pm. Everything's moving but it's that uncertain period and the waiting, I'm spending a lot of time on cookie jam games on my phone when I'm not at work or running around after my kids. I started to bleed today which I wasn't expecting, told the nurse and she said to keep an eye on it and to get in touch if it gets worse, hopefully it's part of the healing from the colposcopy.
It is so good to talk with other women who understand, thank you, wishing you all the best Kelly for the 15th, I will think of you, keep us updated xxxx
I've just reread your post about the possibility of it spreading. I was told that too - hence the MRI. The MRI came up clear. Then at the meeting with the oncologist last week, i was told the LLETZ had not removed the cells with clear margins hence the EUA today where they checked my cervix, bladder and bowel for any sprea. Again this supported the MRI So they were happy to go with a hysterectomy to treat it.
The doctors are not hiding anything from you. They tell you everything they know. I was convinced I walked out the room and they'd look at each other knowingl! Its not the case. Feel positive. They are using the MRI and CT to plan your treatment. That means when you meet your oncologist you will know exactly what is going to happen. They want to treat you and ensure they capture it all...not have any sneaky surprises a few years down the line. Have faith in them. Stay positive. You said the consultant came to speak to you after your cone biopsy and said all looked fine? I was told by mine that if CC is more advanced than a Stage 1, it is visible whilst they are doing the procedure. At stage 1, its only seen under a microscope hence why I was only diagnosed after my LLETZ. It sounds the same for you.
Stay positive. There are lots of posts on this forum that should reassure you of women who have been successfully treated. My consultant said to me today "the word cancer turns your heart cold but there are more than 200 different types of cancer and each one has a different prognosis and treatment. Yours is very treatable"..... And she should know as she's the UK representative of the European board for gynaecological cancer! Have faith in your consultant. Lots of love and best wishes to you xxx
Ps. I meant to add...i started bleeding again on Sunday...6.5 weeks after my LLETZ and they checked it today. They said the scar on my cervix was slightly red and bleeding slightly but nothing to worry about as there was no sign of infection. The bleeding doesnt help psychologically though does it! Its another "symptom" that you stress about! Xxxx
