Hi Sophie

I’m so sorry to hear your diagnosis. I’m surprised they are saying radical hysterectomy when there is lymph node spread as that usually means surgery is not an option and it’s straight to chemo radiation as the lymph node spread means a higher staging unfortunately. But the MDT will decide what’s best. Surgery was not an option for me, and I didn’t have lymph node spread at my first diagnosis. The staging is based on internationally followed guidelines, so should be standard. 

Make sure they are managing your pain, I know how horrible that is. I was put on prescription co codamol and then tramadol. Don’t let them fob you off with paracetamol as it’s not enough in my experience. 

You are in that horrible waiting time of limbo waiting for your plan, but once the plan is decided you will feel more settled about the fact that things are moving forward. I know you will be scared and worried, we all are, but hopefully your treatment will be very effective and you can put this behind you. 

It must be very hard for you having a young daughter-my daughters were both adults when I was diagnosed but it was still difficult. I love the fact that your daughter’s smile keeps you positive. Having a positive mindset is really helpful, and I tried to keep as positive as I could all the way through. I’m sure it made a difference to how I coped. 

I hope you hear quickly from the MDT and can get going. Please keep us posted as you go if you can. I’m home from holiday tomorrow so life will go back to its usual routine and I will be around more, but I really appreciate you updating me and I’ll help you with anything I can. xxx

Hi how was u dinosed did u have a virginal ultrasound love 

Hi Amanda

Vaginal ultrasounds are not used in the diagnosis of cervical cancer. Why do you ask? Do you have some concerns?

Hi again Dawn, 

Sorry for the delay...... not only has all this been going on, but i've relocated too so its all a bit crazy here! 

The not knowing is making me crazy. 

I had the MRI and chest x-ray (a week late as it had broken down!) and told yesterday that its clear!? soooo still no grade.

So now i'm confused. The biopsy says I have cancer. But nothing can be seen. |I| think then they are hoping it's super small. I'm being booked in for a loop under general, and they are going to try to just cut it out. 

Ive been told if I get clear margins, i'll likely still be offered a hysterectomy as it may come back. 

Once they test what they have taken out, apparently then they will decide if its going to also include lymph node removal....but again, when I asked...they said the nodes were clear. (however I have read that you cant see nodes properly in a scan anyway!?)

I'd now like to think that I can avoid radio/chemo. But....I have no idea. Everything is up in the air again, when I was expecting a definate answer. I hate this. 

If anyone can shed any light on this, I'd be very grateful!

How are you all getting on?

Hi Rachel

If your cancer cannot be seen on a scan it will be very small, and it may be possible to completely remove it via a lletz. If you get clear margins, why would they do a hysterectomy? It is major surgery which cannot remove the HPV virus which causes the abnormal cells and eventually the cancer. Abnormal cells can return, and having a hysterectomy is no guarantee that they won’t. Also the surgery can make it more difficult to detect any abnormalities in the future. I would consider very carefully whether a hysterectomy is the best way to go if you get clear margins from a lletz. 

Your cancer may be microscopic, hence not being picked up on scans, so would be highly likely to be something like stage 1a. That would not require chemo and radiotherapy-the lletz could take care of it. . 

Hi Amanda,

I was diagnosed when I had a colposcopy after an abnormal smear. That's how they found the cancer, from the tissue taken from my cervix. I have had a few vaginal ultrasounds in the years after, mainly to check on post-menopausal bleeding that I had (turns out nothing was wrong, thank goodness). What's going on with you?

Laura xx

Hi Sophie,

I am thinking of you at this difficult time and I'm sorry you are going through this. I found that taking 1 appointment, 1 treatment, 1 result at time, and not focusing on end results, what "might" be, helped me get through the days. Expect setbacks, they will likely happen (I had to postpone treatment because I got a cold and my blood counts were too low). I would become devasted when this happened, let myself cry and have fits, and then was able to move on the next day. Another great coping mechanism is this website and these wonderful people, like [@Minska]‍! You are ahead of the game in that respect, I didn't find this site until after my treatment was done. 

We are here for you! I'll keep you in my prayers.

Laura xx

Good morning everyone I've just had a phone call to go and see my consultant at 10 for biopsy results, I asked if I should take someone with me they said you can if you want there are some complex things to talk about, I'm terrified x

Thank you so much x