Peri aortic lymph nodes anyone ?

Hi all you lovely ladies who came to my rescue last Friday . I got my answer today and I am about to set out on another unknown journey. I feel quite numb about it all as I never heard of these particular lymph nodes. The answer is in the name. Near the Aorta which is a bit scary to say the least . It does explain the unusual back and side pains I have been getting. File gone to oncologist who is now on holidays And will be back next week. It will more than likely be 6 months of chemo . Have any of you lovely ladies had this particular condition as part of recurrence . The only good news is it has not spread anywhere else so far . Would really appreciate your help on this one.

Happy Easter

XXX

49 Replies

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  • I have my reocurrence in this area. I am on 5th Line chemo, 5 years since diagnosis and doing great.

    If you want to PM me if you have any specific questions please feel free to do so.

    Wishing you all the best,

    xxxx

    Trish

  • Thanks Trish

    Thanks for getting back to me. . If you have read my previous posts you will know I had PPC in 2011 and have not had a recurrence until this latest monster reared its ugly head. I am very scared and not sure how common it is with OC and PPC women. I have been told I will more than likely be given same chemo as for my original condition carboplatin and taxol.

    It is good yo hear of other women's experiences and makes it less scary.

    XXX

  • Wow 5th line What treatment did you have Trish. Xx

  • Hi Gail,

    Carbo/Taxol

    Gem/Carbo/Avastin

    Avastin

    Etopiside/Carbo

    Etopiside/Carbo

    Topotecan - This was stopped and we are repeating Etopiside/Carbo.

    Looks like a lot when it's written down!

    x

    Trish

  • Quite a lot but you seem to be doing okay,  Best wishes

  • Yes it does Trish - but glad you are doing great. This is my first recurrence on gem/Carbo and avastin but keeping fingers crossed for another NED. 

  • It helps to see other people doing well through this disease. Best wishes. Gail xx

  • Yes _ I had them for 1st recurrence and had surgery then chemo.

    Apart from the post surgical hernia through a lapaoscopy port which was NOT nice, but fairly unusual. It was all pretty straightforward.

    Be prepared for them finding something slightly different when they cay see inside. There were more than showed on the scan and they were "sticky"

    Good luck xx

  • Hi Mac

    Thanks for your reply . From what I understood I would not be having an op because of position of nodes . Near aorta I suppose. From the little I have read so far it is quite common to operate so I am not sure if I should seek second opinion on this. I will have to wait for a week now as oncologist on holiday and I am worried about leaving this a moment longer. I have just woken early to find that it wasn't just a bad dream .

    XXX

  • Hi Molly, I remember a post years ago someone humorously suggested we should form a Lymph Node Sisters Club. I have had tumours on my lymph nodes from the outset and they have always mentioned para-aortic lymph nodes. So yes, I'm one of the Lymph Node Sisters alongside you. It didn't cause any problems for years but five years on I now have lymphoedema on my left hand side which I daresay is related to that lymph involvement. The lymphoedema is being managed and isn't causing me any upset or stopping me doing what I want.

    I'm really sorry you've had a recurrence after so long. Please keep posting and we'll do our best to help and support you.

    Sending loads of love xx Annie

  • Hi Annie

    Thanks for your words of encouragement . Did you have an op on your nodes or just chemo as I believe will be my option as soon as I get to meet the the oncologist. When he returns from his holidays that is ! Also was back and side pain part of your symptoms ? I was telling them this for a long time but was dismissed as just being age related . Is it me being paranoid or are women of a certain age not thought of as important enough to be listened to seriously ? Why else would this disease be lagging behind other cancers in research and early detection ? My late mother used to remark quite often " we are living too long for them now " .

    Anyway Annie it is 8 am and I woke up suddenly with a heavy heart remembering my conversation with the consultant yesterday. I have to go to funeral at 11 of a woman who defied the odds and lived to nearly a hundred years old.,I have a lot of thinking to do before that big next step .

    As usual you and the other lovely ladies are my lifeline right now and my IPad will be worn out from my typing over the next week while I have that long wait

    Love and God bless

    XXX

  • Dear Molly I hope the service goes well today and is a celebration of a long and interesting life.

    I sometimes think it's not so much that people don't listen to women of a certain age - more that we're so busy looking after everyone else we don't make time to look after ourselves. Well, that was my experience in the months/years leading up to my diagnosis of ovarian cancer at the age of 58.

    Wow you have posed a hot question on surgery and lymph nodes! Surgical hours in the UK differ enormously - from 2 hours in some centres to 6+ in centres associated with better survival with ovarian cancer. The Chief Medical Officer for England has made recommendations on surgery for ovarian cancer and ordered an audit to be carried out in England.

    I think you could have several questions of your surgeon.

    a) Will they remove lymph nodes? There seems to be a difference of thought between supra-radical surgeons who can resect a lot more disease than surgeons of the more conventional schools of thought and practice.

    b) If lymph nodes are removed what problems might be associated with it ?

    c) What would the advantages be in terms of life expectancy if the Lymph Nodes are removed?

    d) Would another surgeon suggest a different course of action? Could you ask for a second opinion before going ahead with surgery.

    My surgery took place 5 years ago. My centre was of the view that 2 1/2 hours was adequate and my surgeon told me she had removed one lymph node for histology purposes and could have removed more but was prevented from doing so. It turned out the cause was the limited theatre hours. The paradigm at that centre at that time was that chemotherapy could mop up what the surgeon left.

    If you have time and the strength to ask questions I think it would be wise.

    Here is an article on the Gov webpages on the issue of surgery:

    gov.uk/government/news/chie...

    I hope this is helpful. If I can be of any help/support please PM me. We should be asking more questions of our surgeons but it's a scary prospect and worth having factual data at your fingertips to justify the questions you're asking. I can only take my hat off to you for preparing so well and really looking into the options. They do say that life expectancy is very varied in the UK with the best being achieved by the most specialist centres of excellence.

    xxx love Annie

  • Annie what would we do without you. You are quite simply amazing.

    Xxx

    Trish

  • Dear Annie

    I am being passed over directly to the Oncologist whose only interest is chemo. An operation was never on the cards first time round and it seems to be the same case now. This is why I am interested in other women's experiences with these particular lymph nodes . Has anyone just gone straight to chemo with no op suggested ?,

    I read your CMO's speech . Very interesting and food for thought this side of the irish sea.

    We have centres of excellence here too but I wonder if there are grades of excellence . Of course you are better bring treated by a hospital who has more experience with particular cancers which is why i have emailed our Cancer registery centre to see where the highest incidence of PPC is in this country. As its so rare that should not be difficult to find.

    Thanks also for your suggested list of questions. It's going to be a very long week

    XXX

  • Dear Annie

    I did send you a detailed reply to your previous post to me but I don't think you got it as it appears another reply to you from Trish got in before me . Glancing over all the replies my answer to you went to Trish instead. Can that happen or am I totally computer illiterate ! I am not sure if I can copy and paste to you instead. Anyway the gist of it was a huge thanks to you for your suggested questions. I also read your CMOs report with great interest. I am not sure if there is a restriction on surgery times in Ireland as I have never had any experience of surgery.

    It's going to be a long Easter waiting and as I also would prefer to change hospitals it worries me that the delays could have an adverse effect on the overall outcome . I am still angry that my symptoms were not taken seriously . I have had so many replies over the past few days and all had the same symptoms of swollen peri aortic lymph nodes which were side and back pain along with utinary frequency and abdominal pain. Instead of telling patients " Oh , you'll know when it's back " there should be a routine check list at every appointment. We also have centres of excellence but I would say that there are degrees of excellence. 

    Anyway Annie thanks again for your very excellent advice. You always have great words of wisdom. Happy Easter

    XXX

  • Dear Molly, I was able to read your responses OK. The thread just goes in chronological order so the first one to click 'submit reply' will go immediately under the previous comment. The good thing is it is a record of a conversation from all sorts of different people with different experiences and different perspectives which is the great asset of this forum. Each comment is equally valuable. 

    Do you have a choice of treatment centre? It's one of the things I'd like to see brought in here in Wales. There was an assumption by a previous minister of health that all provision in Wales is equal - which has never been the case - so we are generally sent where we are told. 

    I wouldn't worry too much about surgery times. The main question is, Will the surgeon be able to resect all the tumours that are physically resectable?  There are vast differences in practices in the UK and that is what our Chief Medical Officer is investigating. As always the medical profession can't agree what is best practice. Some surgeons here are very critical of the most radical of their profession claiming extensive surgery can do more harm than good. What you don't want is your surgeon to leave disease inside you that they could have removed if it would have done you good. 

    I love hearing from women with experiences of being treated in other countries. We have the worst survival rates in Europe here in the UK, and Wales is slightly worse than the rest of the UK. I wonder where Southern Ireland comes in this ranking. 

    Recently one of our oncologists in Wales listed the issues she thought would improve the survival rates for ovarian cancer:

    Improved diagnostics (timeframe and resources)

    More supra-radical surgeons in Wales (the ones who can resect the most disease)

    Improved access to new drugs

    Looking at the literature there is also a case to made for the general population to look after its health better throughout life, weight, lifestyle, fitness, because if/when these diseases do strike we are better equipped to fight them. I've never been a sporty person and was surprised to be told by so many of my doctors that I'm fit. I seem to have a strong constitution and I'm sure that's due to a good well-balanced diet from childhood, plenty of  running around in the fresh air, and I have the good luck to be a 'glass half-full' sort of person. 

    I think you have the best attitude of all to be asking the right questions from the start. I wish you many many years of wellbeing. xxx love Annie

  • second opinion might be helpful. Why don't you ring Ruth at Ovacome and talk this through with her....She's got lots of experience and can help with second opinions, I've understood.

  • Hi Mac.

    I live in South of Ireland so will have to tackle it from this side . I will talk to Ovacare who are the Irish equivalent of Ovacome to check procedures for seeking second opinion here . Trust me of course to be given this news just as everyone including oncologists are on their Easter holidays !

    XXX

  • Hi molly, I too have had lymph node issues, however mine was in the portocaval lymph node ( the ones near the liver) and had the coeliac and hepatic artery lymph nodes excised along with my gall bladder ...I haven't noticed any problems from that, and had no follow up chemo ( as histology showed it was clear cell) .good luck, and I must say that I prefer the surgical option, as in between my surgeries (3 now) l have had 2 years of cancer free living.

    Sue.

    X

  • Thanks Sue . Just in and reading all the replies which are so helpful. I am going to read them all slowly again but at a quick glance it would appear some have surgery and some chemo so I hope I don't have a gun put to my head to make a decision. My preference would be chemo as I tolerated it very well the first time. I am so grateful for your advice . Will let you know my next step. As its Easter week not much will be happening . Have a lovely holiday .

    XXX

  • Hi Molly

    When my ppc was diagnosed,para aortic lymph nodes were seen on scan. After 3 rounds of carboplatin and taxol they had reduced greatly.

    I'm on avastin at present and hope it keeps everything under control

    Sending you lots of good wishes x

  • Hi Chamber

    Thank you so much for your reply and your reply like the others has lifted my spirits. I asked about Avastin quite a while back but it wasn't even considered . I have a week to make major decisions like seeking a second opinion . Will let you know. Thanks again

    XXX

  • I had four lymph nodes removed for this surgery, two were negative and two were positive. Nobody mentioned this to me before or after surgery, it was on my histology report. I guess removing was a positive option otherwise they would have let them be, so I would definitely ask about surgery

    LA

  • Thanks Lily-Anne . Since its Easter holiday i probably have a week to make up my mind which route I want to take. My instinct says chemo since I tolerated it very well last time . Plus I am a scaredy cat when it comes to considering surgery. I will of course discuss it but will hope that for me surgery will be only a last option. You are so good to tell me of your experience as along with all the others it will help me make up my mind.

    Have a lovely Easter

    XXX

  • Hi Molly I was diagnosed in 2010 i have had 2 recurrences in the para aortic lymph nodes backache was my main symptom both times, I was never offered surgery I have had chemo and radiotherapy.

  • Hi Vonny.

    Your reply gives me such hope . I have been trying to tell them about my back pain for so long now and each time I was told it was either my age or arthritic changes in my vertebrae . I just knew there was something else which is why i did not hang around until May which was my next scheduled appointment. I saw one of the consultants privately which resulted in CT scan and you know the rest . I don't want to be offered surgery and I would prefer chemo which I tolerated very well first time . In fact the consultant told me that the oncologist would probably be advising chemo . I really wanted to hear from women with same experience and you wonderful people have not let me down. I am making my way through all the posts to say thank you. Have a lovely Easter holiday

    XXX

  • Hi Molly I'm glad I could be some help, I'm sure you will make the decision that's best for you, keep me posted how you get on sending best wishes and have a lovely Easter xx

  • Hi molly, I think the para aortic lymph node is one of the nodes involved in my recurrence. I remember my oncologist saying that it could be causing my back pain. I have had 2 cycles of chemo now, taxol/carbo again as in first line treatment and my back pain has been gone since a couple of days after the first cycle. I am taking that as a positive that treatment is working. Good luck. Ann xo

  • Hi Ann

    That is wonderful news. You have no idea how much your words mean to me. The back pain has been so debilitating and I knew it just wasn't a bone problem which was suggested. The paracetemol had stopped working and I didn't want to hang around until May which was my next appointment. This is why I saw the consultant privately which resulted in CT scan and the rest is history. I tolerated chemo very well last time so hopefully it would work the same for me this time. I have a week to think things through and I also want to seek a second opinion. Wish me luck on that one. Hope all keeps going well for you too. I will keep you posted

    XXX

  • Thank you Molly.  I do hope this will be the same case for you.  My team are very positive about me having it so I'm just going with them and hoping and praying for a good outcome.   I had contacted my team due to back pain, low abdominal pain, urinary frequency although not anywhere near as bad as when I was first diagnosed and a general gut feeling that things weren't right.  The nurse specialist spoke to the consultant who instructed I be brought up to see her.  I've found it tough for a few days each cycle but apart from tiredness on other days I'm managing well and very glad to be without the awful back pain.  Good luck. Ann xo

  • Dear Ann

    I wish you all the best with your treatment. Having read all the replies here it would appear that chemo is very succesful and now I can't wait to get started. I just hope that changing hospitals at this stage won't delay things as Easter is already slowing things down. Your experience also of urinary frequency and lower abdominal pain mirrors mine. Instead of the stock answer of " oh you'll know " which many of us get in answer to " how will I know it's back ? " there should be a check list of possible symptoms. Surely for highly trained medics that is not rocket science ! Sorry for getting on my soap box Ann but I am still so angry at the time delay in finally getting heard. Please keep me updated and I promise to do the same. On a lighter note Happy Easter and thanks again for sharing your experience 

    XXX

  • I also had cancer here and had vascular surgery to remove the lymph nodes as well as chemo. My personal preference was for surgery so I sought a second and then third opinion until I found a vascular surgeon that was prepared to operate. All the cancer was cut out and I then had two cycles of chemo which resulted in a clear CT scan.

  • Hi Bliney

    I am afraid I am not as brave as you. I have been told that chemo will be the preferred treatment. That suits a coward like me. I have read the various replies and both treatments appear to be successful. It is good to know that there is a choice. I wish you continued remission and I will keep you posted.

    Meanwhile happy Easter

    XXX

  • Hi MollyO,snap! I've got the enlarged lymph nodes there also.Like you scared when I saw the report.I always bring home my scan results so that I can look into things more clearly and digest the information.Ive had those enlarged since 2014.the chemo shrunk them for me ,I think I've still got an enlarged lymph node near the pelvis.

    If it's chemo that is suggested to you than,let them bring it on,it seems to be the only thing that attacks the little buggers.Try to to worry to much Hun,it's a frightening thing to hear but,it can be sorted.xxxx

  • Hi Annie

    Thank you for your lovely positive reply. I was fascinated by you bringing your scan report home. If I asked for mine   I am not sure what the response would be. As for chemo as you say " bring it on ! At least now for me the back pain is explained . Being fobbed off by telling me it's just age related has now made me quite angry. The symptoms to watch out for to detect OC and PPC in the first place are now well publicised even if too late for those of us who already got it. Now I think that symptoms for recurrence should be given equal importance. Surely the doctors know by now symptoms for enlarged lymph nodes and other areas of recurrence. I don't know about you but I got tired of the answer " oh , you'll know " whenever I asked how I would know it was back and what I should look out for . 

    Your reply has cheered me up no end. I hope you have a lovely Easter . I will keep everyone posted .i have to wait a week as everyone is on holidays. 

    XXX

  • Ho MollyO ,I always ask for a copy of my scan results when I meet with consultant.I get them no problem.Ibtake them home and go through the results and measure it up against scan results.I find it very helpful if I go away to take my results in case I fall ill and need to go to a different hospital.It happened me during Christmas,ended up going to local hospital.Needed transfusion,handed in my copy of scan and doctor was delighted as he said,they would have been working blind without the scan.xxxx 

  • Hi AnnieH

    I pray now that I will get a change of hospital fairly quickly . Without going into the finer details I have had some problems for quite a while so it would appear now is a good opportunity to make a move . People may say the devil you know etc but I feel the time is right . I also need  the assurance of having someone who has come across this disease as part of my team. I got some statistics from the National Cancer Register yesterday and discovered that in between the years 2009 and 2013 I was the only one diagnosed with PPC in my county. The adjoining counties had one each which makes us a rare breed indeed. 

    If I am lucky enough to find the right oncologist I will take your advice and this time insist on information that is my right to have. Thanks again for all your great words of advice.

    XXX

  • Hi. I also had lymph node involvement at diagnosis, had 6 courses of carbo / taxol last scan 6 weeks ago amazed oncologist  no disease seen Then had appt with gynae/oncologist to discuss whether surgery would be of any benefit at this stage, he thought not. S o I am now on Avastin 12 treatments to have repeat scan 3 months so fingers crossed. Wish you well x

  • Thank you so much Valo. Another positive reply to make my spirits soar. I would opt for chemo any time before I would even consider surgery. In any case the consultant did say that is probably the route they would suggest. 

    I am so happy for you so I hope I can follow in your footsteps.i will keep you posted. Meanwhile happy Easter

    XXX

  • Hello Molly, I can just feel your fear and so sympathise for you. I was diagnosed 9 years ago and didn't expect to live for many months at all. My first recurrence was in a lymph node in my neck which was too dangerously involved with a major blood vessel to biopsy. They wanted to biopsy it to check whether it was caused by  Ov ca or Melanoma. ( I had had a large lump taken out of my leg due to Melanoma)  I then went on to develop much more lymph node involvement. I was later horrified to hear that I had para-aortic lymph nodes involved, as well as right internal mammary ones, right paraspinal, left pararectal,left lower anterior abdominal wall and left inguinal regions amongst others - so now I don't ask details. The reason I'm telling you this is to cheer you up as I've had them for some years and was convinced I was finished, but it wasn't the end. I finished second line chemo, Carbo and Gem June 2014, with Avastin which finished February 2015 and stabilised me. I now have a recurrence but have been advised to wait a while for more chemo.

    So keep positive and I wish you well. With love, Solange.      :-)

  • I really appreciate your sharing of your experiences Solange . It means such a lot to hear positive stories. You are one very brave lady as you have gone through far tougher times than I have ever had to endure . Today I have read so many encouraging stories . I woke up too early this morning and could not get back to sleep as the time just before dawn is when all the fears and worries come crowding in. I eventually had to get up and go to a 99 year old woman's funeral. I just had time to glance at all the replies before I left. Tonight I went through them one by one and replied to everyone . I hope I haven't left anyone out as I just wanted everyone to know that as my previous post said I was looking for hope and courage , that I found it in this forum today. Thank you so much. May your own future include the hope you shared with me and that you will respond well to future treatment. I will keep everyone updated. Meanwhile happy Easter

    XXX

  • Well Molly O what can I say, your instinct was totally correct.  I am really sorry that you need treatment but hopefully you will get another long remission and no doubt that is what will happen.    My lymph nodes in my upper tummy get enlarged and then go down again.  However they did shrink after last treatment and I was stable.   I think you are making the right decision to have the treatment.   Once you get a treatment plan and when you are starting your first treatment you will be more settled.   The Carbo/Taxol will work because it is so long since you had it..  Hopefully you will get a date and a plan soon.  Yes at this time of year the Oncologist tend to disappear, I dont know is it some conference time like the Asti and I.n.t.o but they do have conferences in Europe annually. 

  • Thank you Suzuki

    Sorry I am only replying to you now but your post just came up now and the wierd thing was I thought I saw your name yesterday. As usual you always send such great encouraging posts . I do know I am very lucky to have such a long remission and I don't want to be a drama queen about lymph nodes when other women go through so much worse. I have known for a long time that the pains in my sides and back could not possibly be ordinary wear and tear age related. But would they believe me ? If I had waited until my next appointment in May i dread to think of the consequences . This is why I made a private appointment with one of the consultants which resulted in the CT scan that revealed all. Now I just have to wait until they return from Easter holidays. As for chemo I have no problem. I just thank God it hasn't spread elsewhere. Thanks agsin Suzuki. You and the other women kept my head above water these past few days. God bless and happy Easter

    XXX

  • I think we know our own bodies ourselves and our gut instinct kicks in.  Just as well you went privately and got the ct scan.   I suppose the Oncologists need holidays but that means they leave patients in Limbo, its not fair really.  I know you would prefer not to be in the position of having treatment,  But hopefully once the holidays are over you will have a treatment plan and a date to start. In the meantime even get away for a few days if you can to focus on doing something nice for you.

  • Today I have been diagnosed with lymph node involvement beside my left kidney. It also explains the back pains. I am like yourself in numb mode. I start Chemo next Wednesday. We will be walking a similar path together.  Hugs to you. Love Sharon

  • Hi Sharon

     Looks like we are the " terrible twins " with this extra hill to climb. It would appear to be full steam ahead with your treatment. Meanwhile I have to wait until the Easter holidays are over before I see some action . Plus I also want to consider a different hospital if I can get seen. I am now scared all this delay will have a negative effect. Good luck with your treatment. I will be thinking of you on Wed. 

    XXX

  • I dont think a matter of a few weeks will make a difference or so we were told at the last Ovacare Day in Cork.  Maybe in the meantime, alkalise your diet ie lemon in water, plenty vegetables and little chocs at Easter time.  At least that way you feel you will be doing something to keep you going.

  • Hi Suzuki

    Thanks for both replies which I just read now. I hadn't remembered that about a few weeks not making a difference which is comforting. I did ask if they were doing a CT scan at one of my appointments in the middle of last year and was told they don't do them willy nilly. The very words one of the speakers used in cork last year from what I can recall . I  think it was the female oncologist. Speaking of patient day I hope I can take up the invitation to attend. Either my brother or his wife or his daughter will come along to give me moral support. Or maybe to stop me talking too much ! 

    Thanks for your wise words on diet. I expecially like that chocs are not totally banned. Plus I can now clean the cobwebs from the Nutri Bullet and actually use it ! 

    Have a lovely Easter

    XXX

  • My son has bought one now, I have the Philips Juicer so I must tell him if he gets fed up I will take his one.  Yes I do juice apples, carrots, ginger which I get loose from Tesco, cucumber, celery and half a packet of Watercress Rocket and Spinach or the packet which has kale with it,  I do think it has helped me stay on track better.     I got a box of chocs from Nice, from my brother when he called on Tuesday.  They are hand made and I get to eat them because no one else in the house likes them.   I needed an extra egg for a neighbours child and it was cheaper to buy a few so I have treated myself as well.  I will have a cracking time. 

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