Surgeon couldn’t find my SLN during surgery

Hi Tinkerbell, glad to hear your surgery is over.  I'm sorry to hear that it didn't go as planned.  As I understood it the nuclear medicine dept injects the radioactive stuff into the primary site ,(the mole)then in theatre they inject a blue dye into that same place. So with a Geiger counter they locate the sentinel node in theatre.   That is the usual way it's done, I've not heard of it being done in the scanning dept.

As you say the proceedure is done for staging only.  Usually the treatment path is clear after the SLNB, if it's a negative result then they usually recommend 3 monthly scans for at least a year, if results are positive then treatment is suggested (Braf+ has specific targeted therapies too) - usually a year of immunotherapy.

I'm unsure what your next step will be. You can read the NICE guidelines on line for the usual best practice treatment for a 1.1mm mole.  I guess you'll have questions for the 17th. Please rest and recover from your operation for now.  Take care xx

Hi Tinkerbell

My SLN was removed successfully but I just wanted to jump in to reassure you that how your SLN was identified in the nuclear medicine department was the same as how mine was done. I noticed that Alottment lover said that how you had it done wasn't "the usual way it's done" and I didn't want you to think that yours wasn't done correctly.

Once the radioactive dye was injected into the site of my melanoma I lay under a scanner/imager which tracked the take up of the dye into my sentinel lymph node. It did take quite a while before the team were happy that the sentinel lymph node was identified.

When I then met the surgeon before my operation he explained that in theatre they use another scanner, I think it was hand held but I might have remembered that incorrectly, to locate the SLN as well as being able to see it by eye as it would now be blue in colour from the dye used.

It can be difficult to remember everything you're told, especially when you might still be groggy from the GA, but if you give your SCNS a call she should be able to tell you why the SLN wasn't able to be removed.

Remember as well that many people choose not to have a SLNB as they feel that as it's only a staging tool they'd rather not have it done and are happy to continue with the same three monthly check-ups that you'll be starting on shortly. 

Have a chat with your SCNS and let us know what she says

Sending a big (((hug)))

Thanks for the replies, Allotment lover and latchbrook.  The same procedures were followed as you’ve outlined - radioactive dye injected in the nuclear medicine department but after an hour under the imager screen and not picking anything up, I was moved to another room where they used a CT scanner which gave a better result and they were eventually able to locate and mark the SLN in my armpit. Spoke to the surgeons before I went into theatre and they had a look where the radiography team had marked, injected blue dye when I was under GA but for some reason, couldn’t then locate the SLN. I read (Google search) that it’s rare to not find it - just 2-4% of cases apparently. Meh :( 

I was just hoping to get some reassurance that there had been no spread but I guess I won’t get that. Not long to wait for my next appointment so I’ll have my questions ready and see what they recommend.  Thanks for your help and knowledge - much appreciated x

Latchbrook, I'm sorry if I've got it wrong.  I guess I just presumed it was done a certain way.  Plus I'm not sure I can see why it needs to be  scanned beforehand -- I can see I need to talk to a professional to see why they scan it before.

Sorry Tinkerbell to mislead you.  I just incorrectly presumed it was done one way as that was my experience.  Glad Latchbrook is here to correct me.

Yes you do want some more info and I'm sure your doctors will be able to reassure you and organise your next steps.  Take care x

Hi Alottment lover

No problem. When I had mine done the nurse watched on a screen to see where the dye was going using the scanner that was placed over me. I guess different hospital nuclear medicine departments may do things differently depending on what machinery they have.

Take care x

Thanks Alottment lover and not a problem at all - you were trying to help me which I really appreciate.  Hopefully the 3 monthly checks, assuming that is what I’ll be offered next, will pick up any spread to the lymph nodes or recurrences.  My understanding is that even with a negative SLNB, there can still be spread to the lymph at a later date so it’s not a fail safe result. Thanks again x

Mine was done the day of my operation in the nuclear medicine department but in a different way to what seems to be the norm.  It was done in a frightening and painful way.

I had to sit up with my right arm forced up and over my shoulder.  So painful as I had frozen shoulder some years previously and I have never recovered full mobility.  There was a technician beside me and one in the background in a box.  The technician beside me looked at a screen as did the one behind.  They talked to each other and the one by me kept drawing on me and rubbing out.  I was used like a blackboard.  At one point she disappeared for advice.

They carried on until she really scared me by saying she might have to put me under a metal plate that was there in front of me.  I am very claustrophobic and this seriously worried me.  At the same time she said she should see a doctor so I asked if this could be left until she returned.  She returned with the doctor who told them to stop which I was so grateful for as my experience had lasted at least 1 1/2 hours.  In the following days I came up black and blue from my breast and all down my side.  There was no comfortable bed for me to lie on or scanner placed over me.  I think clapped out old equipment was used on me and those that did it didn't have much of a clue

Although my experience of being treated for melanoma was not good in any way as nobody spoke to me about anything I seemed to pick up that a scanner would be used by the surgeon to pick up the beeps from the dye and therefore the node.  Even the nurse who said she would come and talk to me that day never turned up.

Tiptoes, that sounds terrible.  You poor thing, it sounds inhumane to treat a person like that.  I hope this wasn't too recent and you've had time to recover and put a big complaint in.

All I had was a visit to the nuclear medicine dept and a radioactive injection into the primary mole site on the day before the surgery. No scans at the time. During the surgery the next day the surgeon used a Geiger counter plus he'd put a blue dye into the mole site too. Found the sentinel node easily thank goodness.

Tiptoes,  so what happened during your operation then if you don't mind me asking. 

Xx

Tinkerbell, thanks for understanding.  I know you are correct about the significance of the SNLB as I've come across people on here who've had no SNLB and had recurrence sadly. Research has shown the incidence of recurrence with or without complete node clearance(no difference) so it's not usually best practice but it still seems to go on, likewise research is being done into the benefits of doing a SNLB at all which will change practice too. Australia are currently carrying out research into starting immunotherapy much sooner, before surgery but after initial diagnosis with some initial positive results. This definitely seems logical as the wait from diagnosis to starting treatment can be months. 

So Tinkerbell, onwards and upwards then with your regular three monthly checks to keep you as safe. I hope you can readjust to your "new normal" life (as I've labelled life after diagnosis) as quickly and as painlessly as possible.

Maintenance support from all of us here is a must!

Take care xx