Hi so had a call today not from usual nurse so not a lot of information. I have appointment with consultant next Thursday but they have said chemo and radiotherapy will be my treatment. Didn’t tell me PET scan results but said I will need a laproscopic procedure to look at my groin and abdominal lymph nodes does this mean I’m not 1b1 anymore?? Has anyone else had this?? I feel so up and down and that moment and wish I could just start treatment so I can focus on something and not let my mind wander, trying to stay strong for my family but feel like I might break soon
Hi Laura, I am the same as you originally was to have surgery but after my PET scan some nodes showed up so I am currently on my second week of chemoradiation, I am still 1B1 and my consultant said it would be too hard on my body to go ahead with surgery and then have the chemoradiation, I definately agree with this,,, I was very scared to start treatment but it really hasnt been that bad at all the only side effect I have is diarrohea but I am getting this from the radiation, the chemotherapy is fine no sickness just very tired for 2/3 days after treatment.....hope this helps x
Hi Laura :-)
I am no doctor so don't take this as gospel. It sounds to me like perhaps a lymph node has shown up suspicious in your PET scan. This is not to say that it is cancerous, it could be any number of reasons, but it sounds to me like they want to whip it out and give it a biopsy just to make absolutely sure what it is. Don't start worrying that anything is any different from what you have already been told until such time as you are told something different. I know that's hard but there is absolutely nothing at all to be gained by worrying that things are worse than before. If anything HAS changed, they will update you as soon as they possibly can.
Be lucky :-)
Tivoli
I had the same. My stage was 1b and still is classed as 1b with metastatic in lymph node. I had surgery to take out as sometimes nodes can be swollen due to ghe lletz treatment. Mine was positive. Only one which is a pain, so chemoradiation it is. My chemo starts next Wednesday and rads the 25th. It's still all confusing but I'm sure things will be good. X
Thanks ladies it's hard to stop mind from thinking worse but have so many questions and not seeing consultant until Thursday but this has helped. I hope my chemo and radiotherapy starts soon think when I start treatment will have more of a positive focus
Hi Laura,
I was the same as you and Siom.
They said i was stage 2 instead but in all the written reports it says 1b2 . I found it very hard to get my head around the fact they werent going to whip it all out. I was completely freaked out by it all. I didnt say much to my family but i went to some very dark places in my head.
Once my treatment started it was better :)
It is a complete emotional.roller coaster hunni, but we can sooooo get through it together. The ladies on here are awesome xx
I think it really depends on where you live & what the cancer pathway is for that area.
I was 1b too but did t give me any option other than radical hysterectomy , lymph nodes were not tested until after surgery and then if positive I would need chemo / radio so that's the opposite way around to you.
Have your questions written down ready for your appointment on Thu so you don't forget to ask anything.
Wishing you all the best.
Thank you, are the chemo and radiotherapy days long and is it OK for me to drive? My husband doesn't and we're about a hour away from hospital, family and friends will help but will drive if I can . I'm starting to fetched around not having hysterectomy and trying to be positive, your all such a help
Hi. My chemo day was longer than most people's seem to be on here cos I had a 4 hour wait between my radiotherapy and chemo but it only seems to be me on this forum that had that.
My day started around 8am with radio, trip to the nurse, I went for my breakfast and a walk round the local park and then went back for my chemo. This could take up to 4 hours if I remember right but you can read, play on your phone /tablet, chat to people and I saw some people with their laptop.it went quickly and my drip had a countdown on it. I took lots of snacks too and they brought soup, sandwiches and yoghurt round tgen brews x
I drove myself there and back everyday but had a back up plan just in case I didn't feel up to it. I also had a she wee in the car and an empty bottle. I live about a 30 min drive from the hospital but in traffic it could take up to 2 hours and because I was drinking so much water, my she wee was well used!
hi :)
You can definitely drive during your radio. I was told I wasn't allowed to drive for the chemo.
I drove as much as I could. There was the odd day in the first few weeks that I didn't feel safe to drive due to sickness and tiredness. The final two weeks my mum had to drive me as I was waaaaay too tired and sick. Everybody is different. I know plenty of people like Phileepa who drove the entire time. Just always have a back up plan.
xxx
Hi Laura :-)
As others have said above, the chemo days are quite long but the radiotherapy is really quick. lots of time left over to get incredibly bored :-)
Be lucky :-)
Tivoli
