Hello, I have only just joined this website and forum today but feel in need of a bit of support. Briefly diagnosed in April 2019 but surgically removed via endoscopic submucosal resection and followed by a course of chemo and radio therapy. Declared free of any disease in February 2020. Re diagnosed with spread to retroperitoneal lymph nodes and 3 spots to liver. Did 6 months of carbo/pacli and saw significant reduction in size. Had 6 months off at end of treatment but treatment recommenced in January this year due to evidence of growth. Just had a 3 monthly CT scan which showed fairly significant growth to retroperitoneal lymph node cluster. Thankfully no evidence of disease anywhere else.
What concerns me now is that I am getting bowel blockages on a regular basis and also pain due to the bowel blockages. Also due to have a kidney ureter stent fitted very shortly as left kidney compromised. I just wanted to hear about the experience of others that have had similar issues mine particularly with regard to the bowel blockages as my oncologist does not really seem to be picking this issue up. I am spending a lot of time incredibly uncomfortable or in pain and it is obvious to me even as a lay person that at some point my bowel is going to block.
Has anyone had cancer to their retroperitoneal area and had surgery to remove it? Is that ever an option. Would be most interested to hear from other that have been in this situation. Thank you.
Supernova, I am so sorry that this cancer has revisited you after being clear. I had to have a quick Google to see what is available surgically to treat the retroperitoneal lymph node cluster, apparently it is a surgery that is often carried out on men with prostate cancer. I haven't seen any posts about this but that certainly doesn't mean that no one has knowledge of it.
However, I just wanted to offer some support and a friendly ear, this is a very helpful forum with many users who have stayed around to help others and I am sure you will have more answers soon from people who know more than me. I do hope you get your bowel issues sorted out, you really don't need pain from this in addition to the other things that you are having to deal with. Has the doctor not even given you any idea why this is happening? I will be watching this thread to see how you get on.
Sending you my very best wishes
Hi Supernova ,
Oh gosh you really have been through the mill haven’t you? Along with the awful turmoil of your cancer diagnosis & subsequent re-diagnosis the bowel blockages sound really painful!
As with Irene I don’t recall anyone posting with this particular diagnosis (retroperitoneal lymph nodes) but that’s not to say they aren’t out there as not everyone feels the need to post on the forum many find they get what they need from reading others experiences
I can’t offer any advice as such but know we’re here to support you in any way we can.
Hoping someone with a little more knowledge of your situation can offer some more constructive advice.
Thinking of you.
Oh, oh, dang! Supernova, this is a lot for you to cope with! My heart goes out to you. I have no useful knowledge about your set of circumstances, but I'm rooting for you to find some genuine, helpful relief and solid advice, like yesterday.
Supernova, I was thinking more about you and found
'For patients with isolated retroperitoneal lymph node metastases, radiotherapy combined with systemic treatment can be used as a method to achieve no evidence of disease and can result in good local control and survival.'
I should point out that I have no medical training and try not to Google too much, but this article is from a scholarly site and is from 2020 which isn't too long ago in the grand scheme of things. It would certainly be worth bringing it up with your oncologist and if s/he isn't interested, perhaps seek a second opinion.
Wishing you all very best in your treatment