Radical hysterectomy

Hi Natalie and welcome to the group! 

Kelly has just posted tonight about lymphnode issues and she’s had the same operation, so may be able to tell you her experience with this. 

Sarah xx

Thank you x

Hey Natalie! I'm new to this website. I also had a Radical Hysterectomy 2 weeks ago. I really felt so positive about the outcome and results. Well I got a call from the oncology nurse yesterday to let me know that the op wasn't enough and I need further treatment. I'm absolutely heartbroken. I don't know what the treatment will be yet. I'm waiting on an appointment to meat my oncologist. I'm stage 1b1 and it hasn't been detected in any lymph nodes.

I can't believe this is happening. 

Hi Jenn and welcome to our group!

I’m so sorry you’ve found out you need some more treatment after your surgery-that must have been a blow for you. Sometimes this just happens, if the surgeon hasn’t managed to achieve clear margins. It’s not uncommon. 

It’s likely you will have radiotherapy and chemotherapy going forward, but many of us in the group have done this and come through to the other side. At the moment it will be hard to process that the surgery wasn’t enough, but I hope that in time you can get that positive attitude back to move forward with this next part of treatment.

You've just had major surgery, so you will need to get over this before treatment starts. How are you feeling after your op? I hope you’re taking things very easy and resting up as much as you can. It takes time to heal.

We have a lovely and supportive group of ladies here who will help you along the way as much as we can. Please keep us updated and let us know how things are going. There will always be someone to listen, and feel free to ask any questions, or say how you feel. Nothing is too much information in a group like this and anything you want to talk about is fine. You are very welcome to be with us,

Sarah xx

Hi Sarah, I'm doing OK thanks. Felt good today so managed to get out the house for a bit. I know you say it's common for this to happen but I just feel so angry. Why was this major surgery not enough? Why did I have to go through hell for a week with that bloody catheter? 

I can barely remember what the nurse told me on the phone yesterday so I asked her to call me back next Tues. All I remember is her saying that it had spread a bit further than previously thought but that only came to light under the microscope. The extra treatment is a "belts and braces" procedure. I don't know what she meant by that! But I'm still 1b1 and it hadn't been detected in the lymph nodes. I'm terrified. I'm terrified about complications along the road and the "what ifs" are consuming me. 

Hi Jenn

Belt and braces means they want to be absolutely sure they get rid of the cancer…even the microscopic cells which can’t be seen with the naked eye when the surgery is being done. Try to think of it being a positive thing that they are being so thorough to try and prevent the cancer recurring. I know many people at your stage who have had the radical hysterectomy and needed further treatment who are doing just fine.

The “what ifs” can lead us to some dark places if we let them. My philosophy is to try and flip them into positives. What if my further treatment doesn’t cause me any complications and I cope well with it would be one way to look at it.

The thing to try to do now is not to anticipate problems before they happen, because they might not! Just try to take things one day at a time, and focus on small steps. Don’t try and think too far into the future or you’ll drive yourself crazy with fear and anxiety. 

When I had to face my recurrence and the massive surgery I had to go through to live, it was the scariest thing in the world for me. But I did it.

You can do this. 

Sarah xx

Hi, that’s exactly what happened to me, I ended up having 5 weeks of radiotherapy then 2 eeeks of brachytherapy I was stage 1B3 x

Oh god! Was it manageable? How was the brachytherapy? I'm so scared! How are you doing now? X