What to do with lymph nodes?

[tanyanpc]

I will have an interval debulking surgery next week. My PET scan shows NED after 3 cycles of chemo. I had enlarged para aortic lymph nodes initially. I have clear cell histology.

My oncologist wants to do laparatomy with complete lymphadenectomy (removal of all pelvic and para aortic lymph nodes). I went for a 2nd opinion and another doctor suggested laparoscopy and does not want to disturb lymph nodes at all.

There is controversy if there is any positive effect on survival when non bulky lymph nodes removed. The lymphatic system helps to contain and fight cancer. The other doctor suggested that immunotherapies don’t work in ovarian cancer because of severe insult on our immune system with chemo and aggressive debulking.

I am franticly reading all the available research articles. I am not going for a 3d opinion and have to make a decision by next Thursday.

Please share your thoughts and experiences. Thank you.

[Choski]

I have clear cell histology too and had no lymph nodes sampled at all during my full hysterectomy. That did initially worry me however I was told that the absence of sampling lymph nodes would not affect prognosis. I , like you, have researched and read every clear cell paper I can find. I am fortunate in that I was given a 1C staging - my tumour had previously ruptured, ruptured again plus cells found in abdominal washings. No evidence of a wider spread and Ill take the future as it happens.

I recently found this article below ( titled Clear cell carcinoma of the ovary: Is there a role of histology-specific treatment? 2012) which does have a large paragraph about lymph node and clear cell

jeccr.biomedcentral.com/art...

I would say to also research the side effects of having lymph nodes removed as that can cause quite difficult side effects in itself.

What does your surgeon expect to find out that he/she doesn't already know by removing them all? Is it purely to confirm staging?

A difficult decision however if you're not happy having them all out then that's your answer, simple but sometimes we need to listen to ourselves even if we are only whispering to ourself.

Take care

Clare xx

[Angel-teal13 in reply to Choski]

Really interesting-thank you. I had not seen this paper. Like you, I need to know as much as I can. It helps me feel more in control. I am also clear cell 1C. I am always interested to read your posts. Thanks!

Angel Teal xxxxx

[vmichel]

Hello,

Having PPC stage 4 with, initially, paraaortic and subclavicular nodes. My surgeon told me remove those nodes would make the surgery much more invasive. This was in July 2014 and since then had had chemo non-stop (currently 5th or 6th line) - so far no cancer in organs, but nodes from neck to groin... They hope the current chemo will limit the nodes to accessible areas so that they can try radiotherapy. If not, I will start trials. So yes, maybe it would be a good idea to get another opinion.

Take care

Véronique

[Lily-Anne]

I think the biggest problem is lymphedema. I would avoid it if possible. Sometimes they seem to just treat each individual problem without thinking outside the box and see you as a whole being. I had fur lymph nodes removed because they were suspiscious during my last surgery. Two were diseased two were not. I insist on them being conservative, and am careful to cross out anything I don't like or want on the consent form. Although they are the 'expert' some are more expert than others.

I had mixed histology 1C but it was the clear cell that recurred.

If you are so worried trust your gut instinct

LA

[Donut_in_my_hand]

I was diagnosed with endometrioid adenocarcinoma in right ovary after emergency operation when it twisted. Then advised to have hysterectomy, omentumectomy, removal of left ovary and pelvic and peri aortic lymph node removal although CT scan was completely clear and ca125 back to normal.

However in pre op when I was advised of the associated risks and possible lifelong side effects of lymph node removal I refused the operation. When pressed I was told the percentage risk of developing lymphedema was higher that the percentage risk of cancer recurrence. Although they couldn't be certain because I was still incompletely staged. The surgeon who was going to operate thought I was foolish not to have my lymph nodes removed and actually told me he had lost a patient by leaving lymph nodes which of course scared me.

Through a friend of a friend I heard about a surgeon in Oxford and had a private consultation with him. In his view I was not being idiotic to think of leaving my lymph nodes be. He admitted he has colleagues who will not touch lymph nodes, colleagues who whip them all out and others, like him, who are somewhere in the middle. it was not, as I had been led to believe, standard practice to remove lymph nodes.

I was so lucky that the surgeon in Oxford agreed to operate on the nhs ... although it did mean 4 nights in a travelodge for my partner! So all my lymph nodes are left in tact ... and no further disease was found in the second operation. I am going to have my first 3 month check on the 21st with the original surgeon back in my home town. Interesting to sesee what he says.

I don't know all the ins and outs of your journey. I cannot advise you but only share my experience and choices I made. As I said to the Oxford surgeon ... I trust my lymph nodes. This is such brutal life changing surgery for ovarian cancer. I know that I wanted to reduce the trauma to my body as much as possible and give myself the best possible chance of quality of life post op. Only time will tell if I made the right decision ... but that's what I have done.

Very happy to talk more if can be of any support. Kate x

[Microbabe]

I have clear cell diagnosis and was told they would be removing lymph nodes I didn't question this.... however I was concerned about the build up of fluid and asked if they would drain it .... I was abruptly told no!! I asked what they would do the answer was we wil show you how to massage your skin... since my op I have had slight swelling of my feet after chemo as the chairs in the unit did not work to allow me to put my feet up... after the op I was told that on my ct scan the lymph nodes were enlarged and they though there was some involvement ... I was terrified at this statement as I believed that once cancer was in your lymp nodes metastasis was easier... however the removed lymp nodes were not cancerous and were just fighting the infection that I had .... huge abscess surrounding the cancer which restricted blood flow to cancer and gave me staging of 1c ... so I had the lymph nodes taken I just went along with what they said as I was in shock and assume that they are experts .... I do question things but in my limited knowledge I thought that taking of lymph nodes would help shape the treatment options I would be given and tell me if cancer had spread ... o don't suppose this will help in your decision but this is my experience... the decision is yours and what is right for you.... best wishes and hugs 🤗

Ps I like to be in control and I think I relinquish this to a medical professional that I felt had my best interest at heart. I guess every surgeon has their own tried and trusted method they they use in every patient .... your a individual and I think they often forget this ... these are just my thoughts hope they help x

[Acrod0518]

Hi All

I was diagnosed July 2010 Papillary Serous Fallopian Tube CA Stage 2B. Lymph nodes were not removed in first surgery, just the ovaries.

I recurred In pelvic lymph nodes in 4/2014 and had a debulking removing a few lymph nodesalong with omentum.

I do experience intermittent lymphedema in my lower legs and feet.

I recurred again in pelvic lymph nodes in 9/2016, They were biopsied via CT but have not been removed because they are too deep.

[tanyanpc]

Thank you very much for everybody's replies. I decided to stay away from removing lymph nodes. I am not sure it is the right approach but I prefer the less aggressive surgery.