RPLND 18 months later

Geekaz 20 days ago

4 replies
10 subscribers
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I was diagnosed with Stage 3 testicular Cancer in 2023. I had 9 weeks BEP chemotherapy. In December 2023, I had RPLND to remove lymph nodes that 13mm in size, only 3mm above the threshold for surgery. I went against my gut instinct and went ahead with surgery. The results came back to show the nodes were necrotic. For the sake of 3mm I went through major surgery and was in ICU for 4 nights.

I want to reach out to anyone who has had RPLND - do you have any side effects from the operation. 18 months on, I wake up every morning due to pain radiating from my lower back - where the nodes were dissected. I have spoken to my GP and Oncologist, and I have had CT scan/x ray - everything has come back normal.

Post RPLND - has anyone experienced anything similar? Does it have anything to do with nodes draining during the night? Is this pain something I have to live with?

I look forward to hearing from you.

Many thanks

Millibob 17 days ago

Hello Geekaz

I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by members of the testicular cancer group.

I must say not knowing much about your cancer I am surprised that the Oncology Team and you GP look to be unable to deal with the pain.

I do hope you get sorted.

Best wishes - Brian.

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FaceOfBoe 15 days ago

Hi Geekaz

I had RPLND and just ober two dozen lymph h nodes removed. There was some pain initially but not after 18 months. There should no pain. Lymph node drainage shouldn't be causing any pain. What has your consultant said 18 months on? From which direction were the lymph nodes accessed?

Geekaz 15 days ago

Consultant has said all is clear: blood work, ct and x ray.

Lymph nodes from my left side were removed by making a large vertical incision across my abdomen.

It is a similar pain to my first symptom of TC - intense back pain. Went to my GP, sent for ultrasound- everything came back clear. Had the cancer been picked up earlier it would’ve been over at stage 1, not stage 3.

FaceOfBoe 13 days ago in reply to Geekaz

Hmm... There definitely shouldn't be pain. Still something to pursue with the consultant. Perhaps an artefact of the surgery- adhesions, wounds overhealing, etc. Might be worth enquiring from that perspective as the cancer element is cleared. Adhesions can be painful. Hoping the cause of the pain can be identified.

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