Hi Natbite

So sorry to read of your diagnosis. I’m not close to you geographically unfortunately, but I have had cervical cancer twice in the last 18 months and have been through a fair amount of treatment. I’m happy to chat and help if I can in any way. The time after diagnosis and before treatment starts is a horrible waiting game we all have to go through but I hope you get good news from your scans and that there is no further spread. Please feel free to keep in touch if you’d like. x

Hi Minska 

Thanky you for your reply and yes I would like to please.   I have had PET scan today and another MRI scan on Monday, the waiting and not knowing if it has speard to my kidneys lungs and liver is torture. 

Can I ask how you have had it twice, did the treatment not work the first time around and how are you doing now?  I am scared about it all, I feel so healthy and normal yet I am not

 x

Hi Natbite

I was first diagnosed in September 2018 with stage 2b so surgery was not an option. I had chemo and radiotherapy. Only managed 4 out of 5 sessions of chemotherapy because of my blood count, and I had 32 radiation treatments. I was scheduled for brachytherapy (internal radiation) but unfortunately had a pulmonary embolism the night before my admission for this and it couldn’t go ahead. 

Following treatment, my 3 month MRI scan showed no evidence of disease (NED) so yes, it did work.

Unfortunately at my check up 9 months after treatment my consultant spotted a tiny growth where my original tumour had been so although I had got the all clear, there must have been something too small for the 3 month scan to detect. I was really surprised as I was feeling well and had no symptoms. I then had a pet scan, and a further 2 mri scans and a biopsy under anaesthetic.  There was no spread anywhere outside my pelvis. The tumour was so small my consultant thought a radical hysterectomy would be possible but unfortunately when I was opened up, my radiation damage was too bad to proceed safely so I was stapled up and spent 9 weeks healing and recovering before I had a total pelvic exenteration-basically the removal of all pelvic organs. 

I had the surgery in March this year and all of my cancer was removed. It’s a major operation, which has left me with a colostomy and urostomy amongst other things! but I have recovered really well with no setbacks, and my histology results confirmed the cancer is gone, with very clear margins so it was well worth it.  

My case is pretty rare really so I didn’t quite follow the standard path. Usually treatment for cervical cancer is aggressive and very successful. I was just unlucky with the embolism stopping the brachytherapy. I feel absolutely fantastic now-no issues at all and I’ve got my life back. No pain, loads of energy and feeling much like my old self.

If you are feeling healthy and normal at the minute that will stand you in good stead for the treatment you will have, because it will likely take it out of you.  I hope the petscan and next mri give the best possible results for you and you can get on with dealing with this. I was convinced my cancer would have spread, and these worries are natural..but it hadn’t. I did my best to keep a really positive mental attitude and I do believe this helped.  I know it’s a scary time, but your scans are happening quickly and your team will soon have a treatment plan in place for you. I’ll send you a friend request on the forum, which will appear in your notifications and if you accept it we will be able to message privately if you’d rather. 

Hi Natbite

I was first diagnosed in September 2018 with stage 2b so surgery was not an option. I had chemo and radiotherapy. Only managed 4 out of 5 sessions of chemotherapy because of my blood count, and I had 32 radiation treatments. I was scheduled for brachytherapy (internal radiation) but unfortunately had a pulmonary embolism the night before my admission for this and it couldn’t go ahead. 

Following treatment, my 3 month MRI scan showed no evidence of disease (NED) so yes, it did work.

Unfortunately at my check up 9 months after treatment my consultant spotted a tiny growth where my original tumour had been so although I had got the all clear, there must have been something too small for the 3 month scan to detect. I was really surprised as I was feeling well and had no symptoms. I then had a pet scan, and a further 2 mri scans and a biopsy under anaesthetic.  There was no spread anywhere outside my pelvis. The tumour was so small my consultant thought a radical hysterectomy would be possible but unfortunately when I was opened up, my radiation damage was too bad to proceed safely so I was stapled up and spent 9 weeks healing and recovering before I had a total pelvic exenteration-basically the removal of all pelvic organs. 

I had the surgery in March this year and all of my cancer was removed. It’s a major operation, which has left me with a colostomy and urostomy amongst other things! but I have recovered really well with no setbacks, and my histology results confirmed the cancer is gone, with very clear margins so it was well worth it.  

My case is pretty rare really so I didn’t quite follow the standard path. Usually treatment for cervical cancer is aggressive and very successful. I was just unlucky with the embolism stopping the brachytherapy. I feel absolutely fantastic now-no issues at all and I’ve got my life back. No pain, loads of energy and feeling much like my old self.

If you are feeling healthy and normal at the minute that will stand you in good stead for the treatment you will have, because it will likely take it out of you.  I hope the petscan and next mri give the best possible results for you and you can get on with dealing with this. I was convinced my cancer would have spread, and these worries are natural..but it hadn’t. I did my best to keep a really positive mental attitude and I do believe this helped.  I know it’s a scary time, but your scans are happening quickly and your team will soon have a treatment plan in place for you. I’ll send you a friend request on the forum, which will appear in your notifications and if you accept it we will be able to message privately if you’d rather. 

Dear Minksa

Hope you are safe and well

your post was so useful and so encouraging.  My mum has recurrent endometrial cancer in the pelvic lymph nodes and para ortic lymph node

She's had 2 rounds of chemo so far.  She's due 6 cycles... if I being honest I'm a bit worried about it being in the lymph nodes because I'm not sure how effective chemo is when attacking cancer in lymph nodes.   I'm thankful it hasn't spread any further than the lymph nodes

Any light you can shed will be gratefully received 

Hope you well and sending you lots of love ️ ♥️♥️♥️

Hi 

I was just wondering how you are,  I started to use this forum then stopped as I got a bit overwealmed by it all before my treatement had started. 

I am due my first 3 month check up next Monday,  I have not been offeref a scan though, I thought you had scans every 3 months or how will they even know what is going on inside you?

xx

Hello Hope

I’m sorry to hear about your mum..I hope her treatment will give her the best possible results. I didn’t have endometrial cancer, so I’m not sure about the particular chemo she will be getting, and I don’t have any experience of cancer spreading to lymph nodes so unfotuntately I don’t think I can be much help to you. But I’d like like to send her my very best wishes..and remember also to look after yourself. xx

Hi Natbite

Good to hear from you again. I have just read your other post which says you have had a scan and are cancer free-that’s great news! 

Normally there is just one scan 3 months after treatment, and then 3 monthly checkups after that. Typically in the UK any further scans only happen if there are any symptoms. So the 3 monthly checks just involve a chat and pelvic examination. Luckily my recurrence was picked up on a visual exam by my consultant 9 months after treatment ended..because there was no scan and I would not have got one because I had no symptoms.

The short answer really is that they don’t know what is going on inside without a scan, but also to note that scans will only pick up masses/tumours of a certain size. Tiny growths are not picked up. They rely on symptoms to be a reason for scanning, so I can understand your concern.xx

Thank you Minkska

not a problem. Good to hear from you

Sending you lots of good wishes ♥️♥️♥️♥️ Xxxx

Hi Hope

Thank you so much for your good wishes-that’s very kind of you. All the best to you and your mum going forward. xx