hi everyone
I was diagnosed in September 2017 with cervical cancer 1b2 and had 25 rads 3 chemo and 2 beach.
every couple of months after treatment I went for my pelvis mri scan and always came back as NED.
i had a scan in December 2018 and got the results today and he said there is scar tissue but there is inflammation that he wants me to have a CT scan to double check. He said it’s a small chance it could be cancer back :(
has anyone every experienced this I’m so scared right now
thanks xx
Don't panic. Inflammation after the treatment you have had is quite common. Even if it is back there are options. It's good that they are keeping a close eye on you. Good luck with your scan x
Thank you for replying SoozeH
I just don’t understand why there would be inflammation now a year after treatment ended? I’m so scared that if it is back there’s nothing more they can do. I’m so worried about this scan now :(
Radiation is the gift that keeps on giving. Unfortunately you can have problems from that for years.
It's natural to be scared but there will be something they can do if the scan shows recurrence.
Mine came back and the treatment for me was extreme, but I'm still here, dancing the night away and going to music festivals.
The waiting time is the worst, is your scan booked already ? Keep us updated.
x Sue
I was reading into it last night and it said about inflammation can come back up to 2 years after treatment so fingers crossed it’s nothing more. The doctor said he isn’t overly worried but has to do a full top to toe scan where they inject the dye into me to see if anything lights up.
no don’t the date yet but should hopefully receive that in the post this week he said so I will let you know .
thank you xxx
Got my scan today it’s this Friday so fingers crossed! xx
Hi Niamh,
Weeping Willow is in exact same position as you do.may be worth contacting her for mutual support.
Good luck.on Friday,
Karen xx
Hi Niamh,
Weeping Willow is in exact same position as you do.may be worth contacting her for mutual support.
Good luck.on Friday,
Karen xx
Hi Niamh
I am sorry to hear of your worry. Karen has kindly suggested that we make contact as I am in a similar situation and hope I can offer you some support.
Whilst I too am playing the waiting game which really is no fun as Sue says Inflammation/ Scar tissue I am told can really play havoc on scans and cause the need for further investigations, which is worrying yet reassuring that we are getting looked after so well.
The chances of scar tissue I believe is very high and hope you will get that confirmed but even if it is the very small chance mentioned that it is cancer they have discussed surgical options with me - still with curative intent - I have had amazing support and information on this so please don’t feel they can do nothing more as I have learnt they most certainly can and with the chance of really good results.
I wish you the best of luck for Friday, do let us know how you get on x
Thanks for reaching out weeping willow. They haven’t discussed any surgical options with me yet. I was reading up on pelvis radiation disease aswell do you think that could be a possibility?
Did you have a PET scan where they inject the radioactive into you? That’s what I have Friday and then results on the 4th feb.
what surgical options did they discuss with you?
xx
The PET scan will be to see whether the mass is very active and possibly cancer and also to see whether it lights up anywhere else outside of the pelvis. Results are generally reasonably quick.
The surgical options will depend on your previous treatment. Have you already had a hysterectomy? You can't have the same area irradiated twice so that limits options.
You need to.know first if this is cancer and what options are available to you according to the scan. They may be able to try what they call a salvage hysterectomy. However unless it's very small and assuming you have already had radiotherapy they may offer Total Pelvic Exenteration. This is what Weeping Willow may be offered if her PET is favourable and I had this done one year ago. But please don't panic, it hasn't come to this yet. Let's see what the scan brings.
Karen x
This is what I’m scared of the pelvic exenteration. I haven’t had any symptoms of feeling unwell in fact I’ve been feeling better as the months go on.
i just don’t understand how my scans have been fine and now all of a sudden they can see scar tissue and inflammation. Does that mean the treatment was still working up to 12 months after treatment? I feel like I can’t cope with this and absolutely dreading my results on the 4th Feb :(
i had 25 radiotherapy, 3 chemo and 2 brachy. I didn’t have a hysterectomy. Would chemo still be an option if it was back?
thanks for replying xx
If it was back, and please don't forget this is an if,,there is still a real possibility that it's not, chemo.options will be avalable to you. However the chemo options are likely to be only considered palliative. The chemo will shrink the tumours and there have been some excellent results for some ladies on Jo's Trust but it virtually always comes back. Chemo will be offered if you have cancer that i is spread outside of the pelvis but you could choose it yourself if you don't want surgery.
There have been a few that have been offered a hysterectomy if the cancer is very small. However if it's started to grow into other organs like the vagina then that may not be successful. The Total Pelvic Exenteration is the option that offers the potential of a cure. At first it's the most dreadful shock to hear it but as time moves on you realise that the other options don't offer much hope and you start praying you can have the exenteration. Weeping Willow will know exactly what I mean.
The operation is a challenging thing to go through and recovery is very long. However, you do recover in time and you adjust very well to your new body. There are several of us that have had it done in the last 12 months or so and we are all doing brilliantly. I had it done Christmas 2017 and I have been on holiday five times since!
I am only telling you about the exenteration because I know you know about it and it's on your mind. It hasn't come to this point yet so try to put thoughts of it aside. However if it's on the table for you, it is doable and can be very successful.
Karen x
Thank you Karen. You really have been a big support. Just need to get this scan over and done with now tomorrow and wait for the results. That’s the worst part I think
Niamh x
The scan is horribly stressful. I was waiting for my scan at Bonfire night 2017. Then when I went to the fireworks in 2018 it brought it all back and I felt my heart really pounding and I felt really low for several days. It was like reliving a war! It made me realise that scans go beyond "scanxiety" into the realms of real trauma. Don't hesitate to sound off here or message any of us. We honestly know what it's like. In fact I have a follow up scan myself on Monday and right now I am like a bad tempered old bear.
Karen x
Aww good luck with your scan! My scan is at 1pm today so I can’t eat for 6 hours prior. Starving!
I’m just keeping positive there could be a number of other things it could be and not the dreaded c word!
All I have to think is that I can’t change anything now it is what it is I have to deal with it
Niamh xx
Good luck with the scan and have a good feed afterwards! You deserve it.
Whatever you have to deal with you won't be alone.
Karen x
Scan done! Just a waiting game now for the results
xx
Fingers crossed for you. The waiting time is the worst. Do you have a follow up appointment yet ?
Try and keep yourself busy doing things that you love .
x Sue
Yes the 4th Feb but that’s 3 weeks away. The hospital said Christie’s should have my results though next week so hopefully they phone me sooner to get me in for the results
xx
