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 Kaz

Thank you for your reply and how are you feeling today?

Sutton is in Surrey, a bit away from Cambridge but we can swap email address if you like and be friends.   Covid 19 has been a nightmare and on top of the awful diagnosis received I wish it would jump to Christmas next week and hope for it all to have been just a bad nightmare. 

How is your treatment going?

  I am to start mine soon but have had a PEtT scan today and another MRI Monday,  I do not know how bad it really is yet, the not knowing oos torture. 

Take Care Kaz 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. 

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 ️ ♥️♥️♥️

Hello Natbite

how are you? Just read your post.  My mum is in a similar position to you

hope you are safe and well

lots of love and best wishes ♥️♥️♥️♥️

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

Hi 

Thank you for your kind message. 

I can say after 5 weeks of daily Radiotherapy and 5 weeks of weekly Chemo my first scan showed the Cancer has gone!   I am due for my next check up Monday. 

It was very scary at first, the not knowing for myself how I was going to react to the treatement and how your body will cope with it. 

My mother had Cancer 12 years ago and was gravely ill, the treatement since then has come along massively, for an example back then it  was like one treatement fits all but now it is tailored specifically as to which cancer you have. I had stage 3C 2b, so it was in my lymph nodes too and left much longer it could have been a very different story.   However,  I am "Cancer Free" at the moment  and there is no reason why I will not stay that way. 

The Maggie Centre in the hospital was fabulous for patients and family, as of Covid I was very alone but I could still go there and talk to people and have free counselling or just a chat. They helped with all the forms I had to fill out as I could not works for a while and continue to now.  I remebrer the first day I walked in there I burst into tears when asked if I was ok, and stayed there then for two hours chatting.  They are qualified people so I do recomend them.  

Please do not suffer in silence, people can forget how hard it is for the families of the people with Cancer too and the support they need.  

If I can help you in any way, if nothing else then to keep you motivated that there is a light at the end of the tunnel adn I am living proof of that. 

Love and best wishes to you also XX

Dearest Natbite

Thank you so so much for responding.  I'm crying tears of happiness for you.  Such, such good news and wishing you tons and tons of continued good health ️ ️ ️

my mum had a hysterectomy about 4 years ago but it's come back in the pelvic lymph nodes and the para ortic lymph node as well. Thankfully it hasn't spread any further.  Mum is being treated at a London hospital and she said they are fabulous.  She's had 2 sessions of chemo so far... 4 more to go and she's also on an immunotherapy trial.. so I've got huge amounts of respect for the hospital my mum is being treated at... they seem to be throwing everything at it   

if you don't mind me asking ...did you have the nasty cells in your lymph nodes and para ortic lymph nodes? 

your reply has made by day and given me hope

sending you lots and lots of love ️ ♥️ Xx