Anyone had recurrence in para aortic lymph nodes?

Hi all, after a successful pelvic lymph node dissection and a radical trachelectomy earlier this I didn't have good news at my six month checkup. The cancer has shown in the para aortic lymph nodes and I have recently started taxol and carboplatin chemotherapy with the view to having chemo radiation next.

s there anyone out there with any experience of this? From what I've read I know that the prognosis is not excellent however I'm really trying to keep positive and it would be wonderful to hear from someone who is going through this or has recovered from it.

 I'd also be really interested to hear in any alternatives (surgery) or research trials.

Thank you

xxx 

Oh Djali, so sorry to hear this news. It's what we all fear.

I don't have anything to share on this but you could try the Jo's 'Ask the Expert' service or there is a research page that you could take a look at http://www.jostrust.org.uk/support/research

Best of luck to you and positive vibes from all of us out here xxxx

Hi there, I am so sorry you are having to go through this.  I had paraaortic node involvement when i was first diagnosed, i had taxol and cisplatin then chemo radiation with an extended bea to the lymph nodes and some brachy - I  am still clear 4 years later - so even though i didnt have a reocurrance my cancer was in a similar area to yours - there is hope! If you need to ask me anything feel free to pm me. rxx

hi there

if you don't mind me asking - how was the recurrance detected? via a scan or did you have symptoms?

Pat

Thanks for your responses and Rose I'm very glad to hear that your treatment was successful.

It was initially picked up on an MRI scan at my six month check, I had a mild ache on my left side and a tiny bit of back pain but never had any other symptoms throughout.

Hi 

 

Yes I was told my cancer had spread to my para Ortic nodes after my initlal treatment, again at my 6 month check up, I was given radiothepy again on that area with a view to have the chemo after this. I was due to be getting married so they wanted me to do it with hair so delayed it.....however after a scan following the radiotherapy it showed that it had shrunk significantly so my chemo was delayed further, to this day I have still not had this chemo as it hasn't yet grown or moved anywhere else.

 

i was initially on, diagnosis given grave news that I probably only had 6-12 months to live, however 2 years later I'm still fighting fit and doing well. I've written this to give you hope, it's not all doom and gloom. It's hard living with this hanging over your head but most days I forget I even have cancer!! 

I wish you well xx 

Yes, long let it continue!  This gives hope to all of us, it just goes to show you, that you never can go by statistics!! If you believe that you fit into the current statistics for your stage of CC, you'd never go out!! you'd bury your head & wait for the inevitable - WRONG!!   We are all unique!! no matter our diagnosis is the same, no matter we have the same treatment, no matter we are negative or positive in our thinking - ANYTHING IS POSSIBLE.    Never expect the expected - expect the unexpected!!  I'm so glad for you at this point - I really hope you continue to post here to let us know how you are doing, thank you.

hi Kate - how are you doing now? I have been diagnosed the very same after complaining for 12 months of back and stomach pain. This is secondary after cervical stage 2b diagnosed in 2013.   I am now 43. without treatment I was given 12 months - about to have 3rd chemo on 20/1 - carboplaton, Paclitaxel and Bevacizumab. 

Best wishes Caroline 

hi caroline  was you ok with the chemo cocktail or was you ill

Hello Djail I had recurrence to my paraaortic nodes amongst other places at my 6 months PET scan after radiotherapy. I then had 14 months of chemo & Avastin and am now considered cured. Hope this helps Jayne 

Hi all,

Its been a long time since I posted but I wanted to provide an update in case anyone comes across this post in future.

My chemotherapy and chemo radiation was successful for the para aortic spread. 

I finished treatment in 2014 and am now on annual scans which have shown NED to date.

If anyone has any questions or needs to talk if they have para aortic spread or involvement please feel free to reply or message me :)

 

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Hi djali

aww amazing so pleased the treatment worked for you and so reassuring to other ladies that you have come on and posted...I don’t come on too often anymore but check in from time to time to see if I can answer or reassure anyone, the early days of diagnosis are so scary and I’m eternally grateful to jos as this site got me through the darkest times!! 

Well done for reaching out to other ladies who might need it!! 

xx

Hi my daughter has cc at 3 months para aortic lit up on PET. Had more radiation to that area. Now has rectal bleeding. GI wants to wait a month for healing. Anyone have experience with this

Hi all.

my mother has recently been diagnosed with stage 3b cc with ligaments and para aortic lymph nodes involved. I am terrified and so is she although she won’t talk about it at all which is making me feel as though she’s giving up. Originally though it was stage 2b but after mri and pet scan is now stage 3b going into stage 4. The doctor yesterday didn’t seem very hopeful at all and stated there is only a 15-20% chance of success. He sounded so doom and gloom which had us all in bits.

She is due to start carboplatin and Paclitaxel next week for 6 weeks and then chemo and radiotherapy for another 6 weeks only if the cancer has reduced After the initial chemo.

Has anybody had a similar situation to this and could perhaps give me some advice or give my mother some hope.

thank you ❤️

The stats are drawn from the population. So the Dr is saying that out of every  100 women in the same position as your Mum 15 to 20 will survive. Now statistics are always out of date and based on treatments that women received at least five years ago. So her chances will be better than this. She needs to not give up but do everything she can to be one of those twenty survivors. So that means taking what treatments are.advised and living the healthiest lifestyle possible. A good diet and not smoking is a good start. This is far from hopeless but she needs to join the race and be one of the winners. 

Hi all,

it's been a few years since I wrote an update and I get private messages from time to time following this post. Thank goodness I am still doing really well and continuing with annual scans with NED (no evidence of disease) - please do message me if you have any questions or want to chat :)

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