131 results for "Para aortic"

Hayleyc89

Hi Angela I have just come across your post my husband has also been diagnosed with reoccurrence in bowel join and para aortic lymph nodes he is currently on immunotherapy and is stable just wondering how you are getting on :x::x:

Jane39

@Hayleyc89
Sorry to hear about your husband.

I am also Lynch. In 2017 I progressed form stage 3 to stage 4 with widespread disease and a very poor prognosis. .

My spread included widespread and distant nodes (inc para- aortic), multiple liver tumours, bones (skull, spine, pelvis), adrenal tumour - have a read of my profile if you click on my name.

Chemotherapy and targeted therapy eventually failed after 2.5 years. I was extremely lucky to be accepted by the drug company to have Nivolumab as it was not available from the NHS at the time. The private cost was unsustainable.

I have had almost two years of Nivolumab with an excellent response and in remission at 9 months. Immunotherapy can be a game changer for Lynch and that is why it has recently been approved by the NHS, which is fantastic. Any Lynch person that progresses from stage 3 to stage 4 will now be given Immunotherapy instead of chemotherapy and targeted drugs.

www.bowelcanceruk.org.uk/...X-Lczy6pb1bHkVGNvOg18PxF8Y8vlo-tQ

There are many success stories and I hope that your husband has an excellent response.

We have an Immunotherapy Facebook support group that is affiliated with the charity.

There is also a Lynch Syndrome UK Facebook group.

Links below.

Please feel free to ask me any questions.

Thanks @lousie28 for the tag :x::x:

www.facebook.com/groups/lynchsyndromeUK

www.facebook.com/groups/2652138928151116

Frances Styles

@Hayleyc89, so sorry to read your post, I think we've chatted on the Macmillan forum a while back. I can't help with para aortic lymph but if you click on the search tool and type in para aortic lymph a whole lot of posts will come up, just had a check and there are lots, hope this helps . Love Frances :x::x:

angela

Cancer returned on bowel tissue join and para aortic lymph node,to start treatment or not??!!
Hi all,am T3 colon cancer that has been operated on in 2018 given clear scan and 2018 but now it's back in joint tissue of bowel ,1cm,then in para aortic lymph nodes. I have been told that there are only 2 types of chemo available at all to me and that my team want to use them to maximum effect ie when they feel they are most needed.It was explained to me that it was like having a lawn with 2 bottles of weed killer,then tou had to decide when to use your only remaining 2 bottles of weed killer.At the moment they said it's like I only have 2 weeds so best to wait until there are more ?My thinking is that surely shouldn't cancer be nipped in the bud rather than let it spread ?I understand the analogy of the weeds but can't really get it with cancer because cancer kills weeds only damage a lawn and it can recover whereas cancer will take over if left alone,don't know what to do and second opinion ,I have been told would delay things,also why do some of us get PET scans and MRI scans ,i have never had either only ever been offered ct scans.I want to trust my team but am finding it hard ,it is my life after all ,not just something minor like an in growing toenail!! Any answers greatly welcomed as I am lost and scared !

HH79

Hi @angela I’m so sorry this Onc has given this advice! You should urgently get second opinion especially as para aortic lymph node can have cyber knife or SABR / MRI Linac blast them away (sometimes forever but mostly for v long time!) but not if more than 3 or certain size! So it’s pretty crazy you’ve been told to wait until more as won’t be eligible then. Also don’t want to leave Lymphs ‘loose’ as can spread around body. My PALN moved up towards diaphragm / lungs and you don’t want that - Pls do get advice elsewhere. Where do you like we could advise? I think urgent you look at radio for PALN and certainly chemo :x::x:

angela

Hi all,am T3 colon cancer that has been operated on in 2018 given clear scan and 2018 but now it's back in joint tissue of bowel ,1cm,then in para aortic lymph nodes. I have been told that there are only 2 types of chemo available at all to me and that my team want to use them to maximum effect ie when they feel they are most needed.It was explained to me that it was like having a lawn with 2 bottles of weed killer,then tou had to decide when to use your only remaining 2 bottles of weed killer.At the moment they said it's like I only have 2 weeds so best to wait until there are more ?My thinking is that surely shouldn't cancer be nipped in the bud rather than let it spread ?I understand the analogy of the weeds but can't really get it with cancer because cancer kills weeds only damage a lawn and it can recover whereas cancer will take over if left alone,don't know what to do and second opinion ,I have been told would delay things,also why do some of us get PET scans and MRI scans ,i have never had either only ever been offered ct scans.I want to trust my team but am finding it hard ,it is my life after all ,not just something minor like an in growing toenail!! Any answers greatly welcomed as I am lost and scared !

vivs

Hallo @angela .... my hubby has cancer in his para aortic lymph’s ...( see my profile )
he is on round 11 of chemo with 1 more round to go before scans ....
I may be able to give you more helpful info after the scans in March
Vivs :x::x::x::x:

Lirio345

Hi @angela, I am truly sorry to hear about these possible developments. I think I would also want to be very confident that monitoring is the best option, and a second opinion may be wise.

I am tagging @HH79 who may be able to offer you some advice about para aortic lymph involvement.

Please stay in touch and take very good care, Kim :x::x:

Gypsy

Dear @angela, I am so very sorry that you have all this additional worry but it sounds as though there is some doubt about it all? I know @penjay1902 had a distant lymph node involved at one point but it got blasted with treatment. There have been one or two who have had recurrence at the join but it is rare, as is, (I think), the involvement of the para aortic node. I don't know but I think I would ask, 'why am I not being sent for a PET scan now'. Other than that, maybe ask for a second opinion on this. I think that is what I would wish to do. I hope others will see this and post for you too but I'm sending hugs meantime. Not much use I know but it is such rubbish that you have this worry. Thinking of you. Love Gypsyxx

angela

Hi everyone, I my latest CT scan results yesterday and I have been told that there is something suspicious looking on a para aortic lymphnode and that the join tissue on my bowel re section looks suspiciously thicker than it should from the outside,has anyone else had this and if so what happened next?I was told I would be monitored for the next few months to see if there are any changes before being blasted with chemo through a PICC line,thanks,Angela :x::x:😥

Jaap

Hi @vivs. Chemo took out my mother's para aortic lymph node involvement. 👍

HH79

Hi at @vivs google SABR radiotherapy first Para aortic Lymphs - Oxford do this or Cyberknife at the Marsden.. good luck :x::x::x::x::x:

vivs

Hallo
Feel under qualified to write in this space but here goes .... have outlined my dear hubby robs story so far in my profile ...
Briefly , back in sep he had sudden constipation then a large piece of his sigmoid colon removed.
Unfortunately it had spread to his lung and a large area of his para aortic lymph .... this seems quite unusual.... any one else suffering with that area ??
Still feel we are very early days and His recent scans ( after 6 folfox and panitumumab) have shown some shrinkage in the lungs and lymph’s but I’m still feeling very worried of course about his future pathway
G2 T3 N1 M1
We Started off with an horrendous oncologist , very blunt and cruel ...,but have a much kinder team now thank goodness
Would really like this para aortic cut out in the future but we have been told it’s too involved with the main aortic artery .
Anyone else in a similar position out there ???
Been posting a little on friends and family and it’s been so good to share when I have felt extremely frightened and tearful
Such a good bunch of fellow sufferers you are out there ... thankyou for your kindness
Nobody deserves this horror
Vivs :x::x::x:

Chris82

Hi @Beany and welcome. I previously had cancer in my peritoneum and liver, though those are clear and I am left with various lymph nodes infected. They are currently being controlled by 'maintenance' chemo 2.5 years after diagnosis. I have had para aortic nodes surgically removed too, though the current ones elsewhere are inoperable.

ruthy

Hi @Beany. I was diagnosed 2 years ago and had para aortic mets at the time I was diagnosed. The are classed as distant lymph nodes, which is stage 4. I was able to have mine surgically removed, and then had radiotherapy on a para aortic node recurrence in January this year.

Node only spread is unusual- welcome to a very exclusive club! Because we are unusual there is no typical treatment pathway for us - i would suggest getting started on chemo asap (you team will be keen for this to happen too so should move things along once you are recovered) then once things are stable exploring more with your team and getting second opinions on treatment options. I know of some people who have had radical surgery, others who are in remission after radiotherapy and some who are keeping their cancer inhibited using low dose chemotherapy. The first priority is to stop the cancer spreading, which is why you will have a course of hard-core chemo before thinking about other options.

HH79

Hi @Beany fingers crossed it's not spread far. But you'll feel better and more in control once it's all confirmed and treatment starts. Worse weeks of my life were the waiting and wondering whether I was a 4 as opposed to confirmation. I had 6m Folfirinox, side effects ok (Oct-March) and a PET scan in April showed nothing in peritoneum and v little in para aortic lymphs. Chemo is bloody good stuff! Sending you lots of positive results and hang in there. :x::x: ps if you do get told spread in peritoneum, google HIPEC! (Remove it, Chemo in abdomen etc) all sorts options! And totally banned from googling stage 4 survival stats. You're young and fit and can tolerate strong Chemo, surgery all sorts! 95% bowel cancer px over 60 so those stats look worse and they're 5 yrs old. Good luck and go forth to do battle!! :x::x:

Beany

Hi @HH79 thank you for your reply :) From what they've said (and I'm waiting for the histology report to confirm) the tumour was the size of a pomegranate and there was a lot of local spread. I guess that means it was in the peritoneum so I'm prepared to be stage 4. I am hoping to be offered the 6 months chemo though I haven't seen an oncologist yet. I will google SABR - thanks! My nurse also said they had one patient who has had mets in his para aortic LNs for the last 9 years that they control with chemo/RT so there's definitely hope, so I'm really trying to stay determined and positive. Who's to say what new treatments may become available in the next few years too. It's all come as such a shock to be honest I don't think it's all sunk in yet. It's been really good finding this forum and knowing I'm not alone. It's great to speak to people going through a similar experience :x::x:

Beany

Hi, I'm 41 and was diagnosed last month with colon cancer after a bout of supposed 'food poisoning' in Feb this year. I had a left hemicolectomy last week and I'm back home now so first hurdle is over :) The surgeon told me they could not remove all the tumour as some of the para aortic lymph nodes were in a location too dangerous to remove them. I just wondered, is this classed as stage 4? My colorectal nurse has said it's unlikely the chemo will remove the cancer in these nodes though it's not certain how my body will react until the treatment so I must stay positive. I also wondered if anyone else is in a similar situation please?

Knicky

Hi everyone,

Apologies for the essay.

I'm 36 and back in early 2020 I began noticing blood after a bowel movement. I saw a nurse who examined me and saw small piles, he said to go back if the bleeding carried on. Well the bleeding was sporadic, and would happen on and off. Due to Covid I never went back.

Well over 2 years later and the bleeding still happens. It seems to flare up and then not happen for a while. My bowel movements are sporadic, sometimes soft- sometimes harder to pass.

I am under the care of an endocrinologist due to high prolactin and mentioned the symptoms to him, he suspected Colitis and sent me for an MRI of the small bowel in January. He also did a blood test and my iron was Norma. The findings of the MRI were:

Conventional MRI sequences of the small bowel performed.
There is no pathology seen of the small bowel. The small bowel loops are of normal
calibre with normal signal with no evidence of any strictures or inflammation or
Obstruction.
The large bowel shows evidence of faecal loading throughout and up to the rectum
but no mechanical obstruction currently seen on MRI. No perianal disease currently
seen on these large field of view images.
The liver, gallbladder, pancreas, spleen, both adrenals and both kidneys appear
normal. There is no mesenteric abnormality or any free fluid. No abnormal lymph
node enlargement seen within the para-aortic region or the pelvis. The visualised
bones appear within normal limits
CONCLUSION / RECOMMENDATION:
Normal MRI of the small bowel

Satisfied with this I didn't pursue anything.

Well on Monday I had the worst bowel movement, it was so hard and painful to pass I felt I was going to pass out. After this there was lots of blood, both when wiping and in the toilet. Even when I pushed for a wee after this there would be blood from my bottom. My bowel movements since then have been strange, more frequent and soft - sometimes with blood after wiping and yesterday looked like there were red streaks in my poo.

I'm so angry with myself and feel I could have had cancer for 2 years, I'm so proactive with my health but obviously have not been so with this.

I have an appointment with a gastroenterologist on Monday, so will tell him all this but I'm so anxious.

HH79

Hi @louise28 it can get a bit confusing about peritoneal mets and abdominal lymph nodes but you wouldn’t have HIPEC to treat lymphs nodes in abdomen, HIPEC is for peri mets which is a different beast to abdo lymph nodes although similar area/zone! St Marks isn’t a specialist centre for HIPEC altho they do now offer it - the specialists are Basingstoke, Christie’s and Imperial JM. I have seen people who have peritoneal disease that are having HIPEC for this also have lymph node resections at same time eg para aortic etc and this depends on number and size of lymphs. I have always had when I am not NED, both peritoneal mets and lymph nodes in chest and abdomen affected. I was turned down for HIPEC due to lymphs as they don’t want me off chemo but when I had just peri mets and lymphs clear, I did then have HIPEC. I think in your case IF IF IF (hopefully not!) you have any lymphs in abdomen then hopefully radio an option? But HIPEC would only be if peritoneal disease there. As said, if they did HIPEC because you had peri disease and you had one or two lymphs involved, they could resect whilst there but if there’s lymph activity, they often won’t want to do HIPEC because wouldn’t want you off chemo for some months if they lymphs are active. Hope I’ve not confused more!! And all crossed you won’t need any of this. Lots love :x::x: