Newbie wanting to tell her story (children mentioned)

I just want to say hi, as I’m only just joining a month after getting the all clear! I haven’t wanted to read too much about other people’s stories as I didn’t want to scare myself, but feel ready to talk about it all now!
My name is Lucy and I’m 33. I’m married to a wonderful man who has been an absolute rock these last few months, and have got 2 beautiful boys. Finn who is 4 and Isaac who is 14 months.
As you can see from my sign off I was diagnosed with CC after a routine smear showed up Cin3, and the cells from the colposcopy & LLEZ showed cancerous cells. I got the call from the hospital on the Friday night asking me to come in and talk through my results on the Monday. I knew it was going to be cancer before I even went in because they had told me they would just send a letter through with the results, so the fact they wanted me to come in and see them immediately rang alarm bells. All that weekend I was thinking the worst. First thoughts were about Jade Goody who hadn’t lived 6 months past her diagnosis, which made me worry I wouldn’t even see my eldest start school in September!! By the time the appointment came around it wasn’t a shock at all to get the news.
The Doctor there advised me that they thought they had managed to take all the cancerous cell out during the LLETZ, but because it went quite high up into the neck of the cervix they couldn’t be sure, so the only way to be sure was to have a hysterectomy. All weekend I’d been thinking worst case scenarios so a hysterectomy was actually a relief!!
I saw the consultant just over a week later and she examined me and backed up the original diagnosis and said I had a stage 1B1, and actually offered me the possibility of a tracheletomy so I could have kids in the future. But given I already have 2 beautiful boys I decided that making sure I was fit and healthy to see them grow up was far more important than any kids we may have in the future, so I decided go with a total laparoscoptic hysterectomy (leaving my overies) and lymph node removal.
That evening I had a call from the consultant asking if I would be able to have the surgery the following Tuesday!! Someone had been unsuitable for surgery and I was pushed up the list. My MRI and CT scans were booked for later in the week so she would have the results before the op, but she was very confident that they wouldn’t thow anything up.
I went in for the operation on the 26th February. I was last on the list so had to wait until lunchtime before I was called in, and had gotten changed into my surgical gown and had my pre-meds. Thats when my world went upside down! My consultant came in to see me and told me that she has only just got the results through from my MRI scan (I live in Malvern and my scans were done in Worcester, but the operation in Cheltenham as part of a partnership scheme) and unfortunately they were showing a large tumor in my cervix that was too big to operate as they wouldn’t be able to get enough clean tissue around it. They had upgraded the cancer to a 2B2. This was a complete shock to me and my consultant. I couldn’t understand how I could have a large tumor when I hadn’t had any symptons, or how it hadn’t been spotted earlier as I’d had a mirena coil fitted the previous April, not to mention the ultrasounds when I’d been pregnant with my youngest. Anyway upshot of that was they couldn’t do the hysterectomy and I would be given a 5 week treatment plan of chemo and radiotherapy. There were going to get a 2nd opinion on the scan as a matter of course, but I was told it was highly unlikely to change anything.
After managing to stay strong through every part of the process up to that point, the following day I did have a bit of a breakdown. I just couldn’t get my head around it. Then that evening my consultant phones me and and asks how I’m doing. I admitt not so good, and she then apologizes to me and tells me that the roller coaster is going to continue!! Apparently after getting a 2nd, 3rd and 4th opinion on my scans they completely disagreed with the results from Worcester! Not only did they think they could operate, they didn’t even think there was a tumor there at all!! Talk about in shock!! I couldn’t really comprehend it at all. I wasn’t as relieved though by the news as I should have been. My trust in the system had been dented and I didn’t completely believe what I was being told.
The next week was a bit of a blur and I was a bit down about everything. I went in for my operation again on the 5th March, and before I went in I had a chat to my consultant and asked her how they could have gotten it so wrong. She said she had asked the radiologist in Worcester the same question and apparently after looking at my scan again, they said ooops what they thought had been a tumor was actually my vagina!!! It was so shockingly bad it actually made me laugh. I think the radiologist in Worcester needs to go back to med school and have some basic retraining!! Anyway it helped to relax me before the operation!
The operation itself was a complete success, and I had practically no pain afterwards much to my surprise. I was out of hospital 2 days later with my catheter still in, but went back a week later to get that removed and get the results from the histology. My lymph nodes were all clear, so I didn’t need any further treatment . I wasn’t as estatic with that news as I thought I would be, I think because I realised I wouldn’t ever be completely free from it, as I would need to have the 3 monthly checkups. I also didn’t know if they had actually found any more canerous cell in the cervix once they had removed it, or if they had alredy got it all out in the LLETZ like they thought. It actually took my GP to make feel better about. He was able to pull my histology results up and could confirm that they had found no further cancer in anything, which somehow was more reassuring, even though the end result was the same!!
I am now 5 1/2 weeks post op, and I am almost back to full fitness. I have to go back into hospital next week to remove a stent in my urethra (they put that in during the hysterectomy as they found some endometreotis wrapped round it, and they were a bit worried about damaging it), but that is being done under local anaesthetic as a day patient so I should recover from that quickly. And other than some cystitis I have recovered really well without any problems. In fact it all actually feels a bit surreal, like it hasn’t really happend to me!!
Anyway. that my story! Sorry to go on a bit, but it has been quite theraputic to write it all down!
I look forward to hearing from some of you

Lucy xxxxx

Hi Lulu,

Welcome to the Forum and congratulations on a successful outcome from your treatment. Hope you continue to feel well. Surreal is a good word.

Like you, I had conflicting messages about the size of my tumour as a result of MRI scans and came close to having to go down the chemorad route. In the end I was able to have the rad hyst and it turned out that my tumour had actually been completely removed by the LLETZ.

I feel very lucky with the way things turned out, but I know that the team was just following the clinical guidelines and making decisions based on the best available information. I was a bit nervous about posting that info here in case it caused others to doubt their diagnosis, but it does seem that the MRI is a bit of a blunt instrument, even when the radiologist knows what a vagina looks like!

Keep in touch. x

Hi Lucy,

your story is lovely.

i hope you continue to feel better and regaine your strength.

you're so positive, which is so  lovely to read. You have done so well.

if you have a wobble, please accept it for what it is, a wobble. 

I have been a member here for many years and dip in and out of the forums and read so much. 

I am now nearly eight years post treatment and radical hysterectomy. I still come back to Jos Trust site and forums It helps on my wobble days which yes, I still occasionally get. 

You are an inspiration hon. 

 

We where the same age... I too was 33 yrs, with 3 children. My children are now a lot older, as am I. Thank goodness I am able to sit and type that. My hubby also was and still is my rock.