Recent Hysterectomy after repeated high grade cell changes. Discovers 3 cm cancer hidden within Cervix

Hi Auslov Elly and welcome to our group.

I’m sorry to read that the pathology identified cancer after your hysterectomy-it definitely sounds like that was a big shock for you and your team. I hope you’re recovering well.

My story was different in that I wasn’t able to have a hysterectomy when I was diagnosed, as I was stage 2b where surgery isn’t an option. However, like many ladies in the group I went through chemoradiation treatment more than 6 years ago now.

The positive margin means that chemoradiation is recommended to get rid of any cancer cells still there but I’m not sure what is meant by a larger test to identify any cells. It would be typical to have some sort of scan, although not everything can be picked up on a scan when cells are small. It’s possible that more might be discovered, but hopefully that will not be the case-there’s no way of telling at the moment. 

The treatment is a pretty standard protocol with daily radiotherapy on weekdays with weekends free, and a once a week dose of Cisplatin chemo which is a low dose to help make the radiotherapy more effective, but which doesn’t make you lose your hair.

Personally I found the chemo straightforward with no side effects, although it’s a long day on the one day a week you will have both chemo and radiotherapy. I found radiotherapy more challenging as it was very tiring and I was exhausted. The sessions are short and painless but the effects can be cumulative as they were for me.

I suffered some side effects from treatment in the form of cystitis and diarrhoea but was prescribed things to help with this, and my side effects subsided pretty quickly after treatment ended. That’s just my experience, and not everyone will have this. 

I know it’s scary having to go through treatment, especially when you did not expect it, but I hope other ladies who have needed to have treatment after their surgery will come along and post to share their stories. Treatment can be very effective, and is over a relatively short period of time, so hopefully you can get through this and come out the other side with a successful outcome,

Feel free to ask any questions as things go along-there will be support for you here in the group.

Sarah xx

Thanks so much Sarah,

I am still a bit in the dark as was given a lot of info on the phone.  I am not even sure what this scan is as I can’t remember the name the doc gave.  So hard to be trying to process next steps while still recovering from operation as can’t do the things I normally would do.  Work, hobbies etc.  I’m constantly thinking about all the choices I have made, being on the pill for 15 years from the age of 17, diet, etc etc.   I also have persistent hpv 16 and it is really frustrating that I can’t get past that.  

And wondering about work.  
all a churn at the moment.  

Hi Elly

I have to say I’m not a fan of being given information over the phone as it can be hard to take in. When my nurse phoned me just after my diagnosis to tell me the next steps I had to ask her to slow down and repeat things and tell me without using jargon I didn’t understand, which she did. For everything after that call I had face to face appointments which were much better.

The scan could be one of several different types and they are all different and used to give different images/information. For example it could be an MRI, CT or PET scan. Do you have a number you can call to ask which scan it will be? 

I would say try not to beat yourself up about any past choices. I did at the start, but it doesn’t serve any purpose or change anything about where you find yourself now. Anyone who has ever been sexually active can get hpv, and we are just unlucky that persistent hpv has caused us issues. I moved on from blaming myself for it a long time ago.

You’ll need to recover from your surgery before you start your treatment, but make sure you look after yourself in the meantime so you’re in the best possible place physically to go through it. Some ladies find they can continue working through treatment, but others find it harder. It’s hard to know in advance how you might feel, but a cancer diagnosis gives you protection under the law as regards work and how you are treated. Hopefully you have an understanding employer, but if you need any advice from our experts, you can phone the support line-the number is in my signature).

Macmillan has work and benefits advisors who can help with any work or financial questions, and also provide emotional support. I’ve used the helpline in the past myself, and they are lovely and very kind. 

You are at a difficult point at the moment-you’ve had the shock of diagnosis and you’re facing more treatment. Many of us, including me, found it easier once all the diagnostic process was completed and we could get started with treatment. It gives you a focus-things are a bit up in the air at the moment and that can be hard to deal with mentally.

Stick with us and ask about anything you’re unsure of. 

Sarah xx

Thanks so much Sarah, yes I think I will feel better once I know exactly what is ahead.  The doctor did ring me yesterday to see if I had any follow up questions and she confirmed it is a PET scan.  She said that because they didn't expect to find anything they had not looked at the lymph nodes or anywhere else so the test will hopefully confirm that it was early and localised as that is what it looked like after the hysterectomy.  I also asked her what the positive margin was and she said 1mm which sounded better to me as I was imagining much more and worrying that it stretched way further back etc.   
I am terrified of the PET scan and what else might come up, but I know it is all the unknown and fear of it all as well so trying not to sink into that hole.  The whole family is very supportive of which I am very grateful.  Really appreciate you taking the time to reply to me Sarah x

Elly

Hi Elly

That’s good you know what type of scan you’ll be having. I’ve had a PET scan before and it was easier for me than the mri as I’m a bit claustrophobic in the mri scanning machine!

The PET scan will involve a radioactive liquid being put into your arm via a cannula and you need to sit quietly, not moving about, in a room while the tracer goes round within your body. This took about an hour when I had it done.

Then you move to the room with the scanner and lie down on the scanning table while the scanner moves over your body. This took about 20 minutes for me I think from memory. 

I think no matter what type of scan we have we can have fear of what might be found that’s not expected. I’ve had “incidental findings” picked up on mri scans before which were not connected with my cancer-an issue with my hip and gallstones! 

This can be the case for many people-a scan picks up something that we had no idea was there and isn’t necessarily an issue.

The PET scan does 3d images of the inside of your body and picks up areas highlighted by the tracer liquid. Your doctor is just being thorough in using this type of scan but it doesn’t mean anything will be an issue. It just gives a lot of detail, and they will want to check the lymph nodes. 

I was pretty worried about all my scans beforehand, but for me none of them showed anything other than where the tumour was in my cervix. The positive margin you had of 1mm is very small and this is what the radiotherapy should target and deal with.

Just try not to rush ahead with thoughts yet-focus on what you know for now, and take things a day at a time.

Sarah xx