Don't understand how I ended up like this.....

Recently diagnosed with cervical cancer
1

im 30 years old and had regular smear tests all have been clear......my last being just 18 months before I was diagnosed in march this year with full blown rare type (cervical gland?) aggressive cervical cancer......

what I have struggled to come to terms with is at the start it was all so positive I was told even with agressive cervictout takes 3-5 years of having it to become un curable and given the clear smear test 18 months before I should have been ok.....

 

2 weeks after finding out I had a op to see if they could just remove it, but the  found the tumour was over 6cm in size and had spread out down they vaginal wall so they said to large to safely remove.....they also checked my bladder and bowel which came back clear....

they said they didn't seem to think it had gone the the lymph glands but done a MRI to be sure.....

i had the MRI a few days later and was called in and told that the cervical cancer had shown up in all my pelvic lymph glands, and the draining areas for them.......

like was then told it was still very curable but they needed to do a pet scan as it can track up to the para aortic lymph glands and with my treatment plan they didn't want to miss any if them.....

i went for the pet scan and yes it had spread to my para aortic glands....I was devasted......

but still they planned to cure me,

i had 5 weeks chemo, 5 weeks or 25 external radiotherapy of the highest dose and brachytherapy over 4 days..........I had a planning MRI done for the brachytherapy and was told it didn't look like the lymph glands were resoon ding to the radiation, this was before I'd even finished the treatment course......

i had to then wait 5 weeks to be re scanned just to confirm this was the case and was told last week that I'm terminal and have anything from 2 months to a year to live! Or more to the point they can't say for sure as everyone is different.....

what I don't understand is why if the main tumour has shrunk which it has why they can't now operate and remove the effected lymph glands and the rest of the shrunk end cervical tumour.....my specialist seems to think finding a surgeon skilled enough o remove the lymph glands just wouldn't happen even though I have read online you can have a radical op and that takes out lymph gland so there must be a way of doing it....he said if he did find a surgeon the op would probably kill me so I'd gain nothing by doing it.......

dont get me wrong if they said it was in my liver or lungs then yes I can see why you can't operate but I don't need my cervix or lymph glands To live so why not just cut them out

 

i have 4 young children and I just can't except I'm dieing when I done everything right, I had a clear smear test just 18 months ago, something must have gone wrong, did they miss it or is it comment to have clear smear tests and end up with in curable cervical cancers?

2

Dear kiarah what awful news my heart goes out to you and your family I really don't know what to say I hope they got the time scale wrong and that you have many years left in you try and stay strong and positive tho I know this will be so hard sending you the biggest hugs and all the luck in the world xxxxxxx

3

Kiarah, I dont know what to say to you honey, I feel sad and so angry for you, you couldnt have done anything different, you couldnt have known that this was going to happen.  Have you asked them what previous smears have shown?  Kiarah keep fighting, dont give in, I like Dizzrus hope that the time scale is wrong.  Sending lots of love to you and your family xxxx

4

This is such awful news :( I can't even imagine how you are feeling but I just wanted to echo the other ladies and say that we are all here you anytime you need us. Keep fighting and try to keep positive, although I know that's easier said than done.

 
I don't know if its the same kind as you but I have been diagnosed with adenocarcinoma which is the glandular one I think and my consultant told me that because of where it is, it rarely gets picked up by smear tests. That's probably not very helpful but that's what I was told.
 
Have you spoken to your consultant about the particular surgery that you have seen online? He might then be able to look into it a bit further or at least explain to you in more detail why he doesn't think it's a good option for you? 
 
Thinking of you and sending you all of my love and positive vibes xxxxxx
5

Hi Kiarah,

 
I'm so sad and sorry to read your story. Have you had a second opinion? I'm not sure if your treatment was private or NHS but you can ask for a second opinion with either, you don't have to go private for this.  In the meantime I'm sending you a massive hug. Take care sweetie. Tess xxx 

 

6

Hi Kiarah

I'm so very sorry to hear your news :o( I'm sending big hugs your way ((()))

Please do get a second opinion and fight!!!!  Whether private or NHS it is worth exploring every single option open to you and I hope you do get a chance to fight and recover from this.    Is it worth seeing if there are any clinical trials available to you?  When I was diagnosed my mum did a lot of research and people on clinical trials tended to have a better outcome.  Not sure how you go about getting on one though!

Have you spoken to the likes of Macmillan etc?  It may be that they can advise you further regarding treatment and support at this time.  I contacted them for advise and they were very helpful.

Wishing you all the best, please let us know how you get on.

Take care

Kirsty xxx

 

 

 

7

Oh my. Kiarah… I am so sorry to read your story. I can’t imagine how you are feeling right now, but I couldn’t read and not send my support!
I would also say to you, like the other ladies, to maybe look into getting a second opinion??
Keep strong - we’re here if you need us xx

8

I  sorry to hear what has happened :-( it is importantant you do not blame yourself chick its not your fault ! 

Talk to macmillan they are lovely that's what they are there for. I think sometimes talking to a stranger helps they are there weekdays and have a chatroom.

The ladies here are completely supportive so keep talking us all.

Hugs x

9

Dear Kiarah,

So sorry to read your story. My heart goes out to you.

I also had the glandular type of cancer (adenocarcinoma) and was told, as others have said, that because it affects the cells in the lining of the tube that runs from the vagina, through the cervix to the womb is can be more difficult to detect with smear tests than the more common type that grows on the surface of the cervix.

I don't think it's common for such an advanced tumour not to be picked up through regular smears but the test only takes a sample of cells, so it is possible that any type can be missed. For what its worth, while cervical cancer is presented as one of the most preventable cancers, that doeasn't mean that it can alway be prevented or that we or anyone else are in the wrong if we are unlucky enough to get it.

It sounds to me that you are still trying to get your head around all this (I'm surprised you're as together as you are, frankly) so I'd say the same as the other ladies, keep going back to your treatment team with your questions until you really get what they are saying and why and do ask for a second opinion, even if it means travelling to another hospital. There's also the Jo's Ask the Expert service who may be able to help you.

Whatever happens, we will all be thinking of you and wishing you well. Keep in touch. x

 

10

Dear Kiarah,

I’m so sorry to read your story too, as everyone has said above I want to wish you all the best. Please use us for support and any time you need to talk.

Much love xxx

11

So sorry to hear your sad news. I've been in tears when I read it.bloody hell.this disease takes no prisoners and is so cruel. Big hugs and kisses to you and your family. Xxxx

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Hi Kiarah, I am so sorry to hear about your recurrence.
 
I just wanted to say that there are some of us here who understand the devastation of receiving unfavourable scan results, and I for one was determined to find as many options as possible when I found that my CC was resistant to conventional therapy.
 
I was recommended an oncologist at the Imperial college and he referred me onto a clinical trial at the Hammersmith Hospital London which is getting very good results. The drug I am currently receiving is a derivative of a chemo drug Gemcitabine which has been modified to overcome resistance through some amazing scientific Pro Tide technology process developed in the UK, so that 33 times more of it enters the cancer cells than the conventional drug. An advantage of this is that the side effects of the drug are minimal, and I feel generally well and healthy.
 
 
The trial I am on is being offered to patients with a wide range of cancers, most of whom have gone into stable disease -even those whose disease was progressing on previous clinical trials- or (luckily in my case) significant shrinkage. They are still recruiting onto the trial and I recommend that you consider this (or possibly another phase 1 trial if this one isn't for you). I travel 2 and a half hours to London once a week and the treatment itself just takes 2-3 hours including blood tests etc so I am home again on the same day. My travel expenses are paid for so it costs nothing other than time and commitment. 
 
 
 
Here are a few links about the trial, which is currently still recruiting in the UK. The last link is a video of my  lovely consultant Dr Sarah Blagden discussing progress on the trial at the international oncology conference in Chicago in May this year. There is definitely worldwide interest in the trial which suggests something amazing is happening. Keep fighting and don't give up hope. There are so many new treatments being developed all the time, one of them is for you. With love and best wishes xxx
 
 
 
http://clinicaltrials.gov/show/NCT01621854
 
 
http://www.evaluategroup.com/Universal/View.aspx?type=Story&id=433098
 
 
http://ecancer.org/video/2016/next-generation-of-anti-cancer-agents--data-f rom-asco-2013.php

 

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http://clinicaltrials.gov/show/NCT01621854

http://www.evaluategroup.com/Universal/View.aspx?type=Story&id=433098

http://ecancer.org/video/2016/next-generation-of-anti-cancer-agents--data-from-asco-2013.php

 Here are the links that I had some trouble copying and pasting onto my last post- my iPad is having a meltdown for some reason! Best wishes x