Scared and apprehensive about Radical Hysterectomy, just empty and numb inside.

Hi Megs23 

Gosh you’re having a horrible time waiting for your surgery, but hopefully not long to go now. You will be so glad to get it all over with.

It’s very unusual with cervical cancer to have surgery without the stage being established first but it appears yours will be staged after surgery which is what would happen normally with womb cancer rather than cervical. I appreciate you want surgery to happen, but it looks like a decision will only be made on the day after assessing your other issues, so things may change on the day. 

It seems like you are having to deal with an unusual amount of pain, which must be very tough. How are they managing this for you along with the fecal impaction? It does seem that you have a complex amount of issues going on and not just what would be considered a straightforward hysterectomy. It looks like there are still answers needed for you and I can understand how anxious you are about that.

I was opened abdominally to have a salvage hysterectomy after radiation treatment, but was stapled up again and sent home with nothing being removed.

My situation was different from yours, but it does show that surgery can be aborted for different reasons on the day so that might be a possibility you would have to consider. It might depend, as it did for me, on what is found when they look inside My surgeon decided it wasn’t safe to proceed and got a second opinion while I will still under anaesthetic. The second surgeon agreed it wasn’t safe to go ahead. I was very upset but later completely understood why it hadn’t been safe. 

The crucial thing is that  surgery will only be carried out if the surgeon deems it is safe to do so. It is hard to stay positive when you are in a lot of pain and things are not actually completely decided-I’m so sorry you’re having to go through such a trauma. It’s ok not to be positive when you’re worn down so give yourself time to feel however you need to.

It’s good you have your mum with you-that must feel so comforting for you. I hope things go well and to plan on Tuesday-I hope you’ll keep us posted. All the best.

Sarah xx

Hi Sarah,

Thanks for your reply.  I will definitely keep you updated. Thank you for your support and advice.  
Hope you are having a good Easter. Had no idea it was unusual to be staged after surgery for cervical cancer.  I am having a hard time today, feeling very down.  Everyone keeps telling me don’t worry it will be all over on Tuesday, they don’t understand it won’t be cause I have to wait for 3 weeks to get my results and finally get my stage and the recovery and investigation into my bowel too.  It maybe over for them knowing the surgery is done and the cancer has been removed, but it may change after results and then after my bowel results come back.  Staying positive after 4 months of this is just not happening for me anymore.  

Hi Megs23 

Staging is normally always established first because it’s needed to decide if surgery can be an option or not. Normally surgery, ie radical hysterectomy, is only possible when the stage is 2a or less and not if it’s higher.

This is because the risk of spreading the cancer is higher if surgery is attempted. The only time in this group I have seen a hysterectomy go ahead without staging is another lady who was treated in Italy and had to have chemoradiation after surgery because her stage then was discovered to be 3c, meaning it had reached the lymphnode(s). 

I had stage 2b, and hoped I would have a hysterectomy but was told it absolutely wasn’t possible once my scans came back, so I had chemoradiation as my first line of treatment instead. Stage 2b is classed as “locally advanced” cervical cancer and the risk of spreading the cancer is too great with an operation. 

Surgery is not always the best thing with cervical cancer, which I understand is not what you would want to hear but many of us in the group were not able to have surgery when they received their staging.  I’ve only been able to have surgery because I had a recurrence and advanced cancer, and my surgery was much more major than a hysterectomy. 

Your family will assume and hope that surgery will be the end of things, but I can see you are aware things will not be over quite yet as you have a number of issues to be investigated yet.

You already know from what you have been advised that you will be assessed on the day of surgery so is your family aware that surgery may not go ahead? 

You have had a really awful time over the past months and my heart goes out to you. I don’t think I have ever encountered another member with so much to deal with pain wise and symptom wise at this point. It may be that others in the group might feel it hard to identify with what you’re going through because typically the hysterectomy surgery is the most straightforward treatment-not saying it’s easy by any means of course. 

I’m sending you a massive soft hug over the internet and hoping things work out for you.

Sarah xx

Hi Megs23 

It sounds like you are going through alot. We are here if you need us.
My cancer was stage 1B1, grade 3 (poorly differentiated) adenocarcinoma with component of invasive SMILE. My surgeon also did not give definite stage until after surgery but they did tell me it was likely 1B1 from the internal examination and MRI. Luckily nothing else was found during my radical hysterectomy and I did not need further treatment. 
I really hope you can clear your faecal impaction and get comfortable. It is not nice experiencing bowel issues. 
As scary as it is, hopefully you will feel better after your operation. I did not really notice I had symptoms of cervical cancer prior to diagnosis although I had felt tired, agitated and had suffered with low moods. These have improved since my op. I think it was my body’s way of telling me to get it out!

I hope you get some answers and support on Tuesday so you know your plan/treatment. It’s good to hear you have your Mum with you during this horrible time. I’m sending hugsxxx

Yeah mine is poorly differentiated adenacarcinoma provisional stage grade 3 aggressive cancer.  My bowel is a huge issue.  I feel nauseous all the time, Can only eat foods that are liquid as solids just don’t digest and cause tightness in chest and abdomen.  At nights I get the sweats, temperature and feel like I am going to be sick.  It takes it out of me.  I need my bowels to move I am beyond fed up with all of this.  One thing after another for 4 months.  It’s enough to break anyone.  
Happy Easter Sunday 

Hi Sarah,

I had a really bad night last night, temperature, feeling like I was gonna throw up, intense headache, aching tummy, sweating and tightness in chest was getting worse and rising.  Was feeling awful. I had only eaten two cups of cuppa soup too.   Woke up this mornings feeling nauseous and tightening still there.  Do you think I should go to A&E 

I’ve only just seen this Megan, I’m sorry. The fact that you have tightness in your chest is a concern, and with that as a symptom it would normally be recommended to go to A&E to get checked out. If you phone 111 I imagine they would tell you to go. When I had similar symptoms I got taken to A&E by ambulance but I don’t know how far you are away from hospital and if you could get to A&E without waiting for an ambulance? 

Sarah xx

Hi Megs23 

I’m really concerned about how you are after yesterday. Hope you can let me know how you are.

Sarah xx

Hi Megs23 

How are you feeling today? I really hope you have managed to get some help for your symptoms. When I had terrible constipation after my op,111 were very sympathetic and along with my GP helped get it sorted. Keep asking the doctors until this gets sorted as it sounds horrible for you. Sounds like you need to be seen for your chest too. I would go to A&E if you haven’t already to get checked over and see what they can do to make you comfortable.  
Do you still have your appointment tomorrow?

Please let us know how you get onxxx

Hi Sarah,

Waited at A&E for nearly 12 hours.  To be informed after all that time that they didn’t want to start anything there as my surgery would be not happening and it is super important that I get it done asap.  They also didn’t want to risk the fact it was a public holiday and discharge may not happen tonight in time for me to go tomorrow to Southend so sent me home to sleep., I sat waiting for a bed for 5 hours to be told this.  I was exhausted.  Was not a great experience at the A&E, much nicer when you go in an ambulance. 
Thanks for messaging.