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May 28, 2014 at 1:38 am #21997
My fiance was originally diagnosed with a thin melanoma of .34mm. The melanoma was pretty large (2cm x 2cm). The original biopsy was done but only a very small portion was removed because they were not suspecting melanoma. So he had the surgery done a month ago but no Lymph Node Testing, just a WLE. We finally got the results today… The margins came back clear but I was very worried it was going to come back as some part of this lesion was thicker and that is exactly what happened… It is actually 1.23mm not .34. They are now debating if they should go back in and do a Lymph Node Biopsy as well. I am so sad and feeling defeated and worried.
We got a copy of his pathology report and I am just confused. I am worried that maybe it has travelled to his lymph nodes and maybe this is just the beginning of a long road ahead of us…. I have copied some information from his pathology below.
Invasive Melanoma – Superficial Spreading
Breslow Thickness – 1.23mm
Mitotic Rate 2 Per MM2
Atomic Level 4 Invasion
Nearest Margins – In Situ – Lateral (Inferior) 4.6MM, Invasive – Lateral (Inferior) 11.6MM, Invasive – Deep 4.6MM
Can anyone explain this new information to me? Is this somethig we should be very worried about? Should he get a lymph node biopsy with this new info?
Thank you all in advance.May 28, 2014 at 9:51 pm #64515
Yes, a SNB could still be done at this juncture, it isn’t as accurate because of drainage concerns, but it is an option. The figures to be concerned with are the breslow depth: 1.23 and the mitotic rate (how fast the cells were dividing) Both were are levels that indicate the SNB. I would discuss further with the doctor and your fiancee about having this procedure done.May 28, 2014 at 10:05 pm #64516 Hi Catherine,
Thanks for answering back. With this new information should we be concerned it has gone to the lymph nodes?
We are thinking we would like to get the test done at this point.June 28, 2014 at 6:09 pm #64517
I just wanted to follow up and have a few more questions. Thanks again for all the information as we deal with all of this. The surgeon who performed the original WLE did not want to do a SNB so we went back to My fiance’s dermatologist who said he would like to test the lymph nodes and gave us a referral appointment with an oncologist/surgeon. We will likely have the date for that next week.
Why would one doctor want to do it and the other one say no? Whose advice should we be following?
I know that a SNB might not be accurate at this point because he already had the WLE, but will it be accurate enough that if something had travelled to his lymph nodes, it would show up?
Also, with the depth being 1.2mm and the mitotic rate being a 2, along with the location if the original lesion (on his jawline), what are the chances that this has spread to the lymph nodes? Is it 50/50? Or are the odds more (or less) favourable?
Last question… After the SNB, how many days will he need off work? From what I understand this procedure will not be as invasive as the WLE.
I apologize for all the questions, I am just so confused and it’s hard to deal with the fact that this is still going on. We have been waiting and worrying and filled with anxiety since he was first diagnosed in April, and I find it hard that we still do not have many answers.
Any information is helpful, thank you so much.August 13, 2014 at 2:37 am #64518
Hi everyone, I just wanted to pop in and update – we have found a melanoma specialist and have decided to go ahead and test the lymph nodes.
We were told that testing the lymph nodes at this point after the WLE has been done gives us an accuracy of 70-90%… Seems like a huge gap there.. Does anyone have any other information about this?
Also, I asked what the likelyhood is that this has spread and the dr said 15-20%…. I was hoping it would be a lower number… I am so so worried about him… I just want him to be alright…
We are so anxious waiting for the surgery date and I know it is going to be so scary waiting for the results… What can I do and what can my fiance do to help deal with the anxiety?
Thank you allAugust 13, 2014 at 12:33 pm #64519AnonymousGuest
Your worry is quite understandable. The node biopsy will help determine the proper staging of the disease. That’s of course necessary to help define what, if any, follow up treatment may be required. Getting the biopsy done is a smart move IMO.
If there is no lymph node involvement, he will probably be staged as 1B and you’re pretty much done at that point except for more derm appointments and watching his skin like a hawk. If there is involvement (hopefully not!!), they will probably want to do internal scans as well before giving him a stage III diagnosis.
There is always anxiety as you wait for scans or test results and that’s perfectly normal. I hated waiting for the results but it’s best to have the facts in front of you. Knowledge is power. Without knowledge you are powerless with this disease.
But my spidy sense tells me everything will be fine. You guys are brave warriors.
JeffAugust 17, 2014 at 8:28 pm #64520
Thank you for your reply Jeff. I pray your spidy sense is correct. I think we are making the right choice by having it done. I appreciate all the support on this forum… It helps to talk to people who understand and are so knowledgable.August 18, 2014 at 12:14 am #64521AnonymousGuest Yes it does and please post as you need to on the caregivers thread too.
You need all the support you can get as well. I remind us givers that even though we don’t have the disease we are affected by it with our very own set of symptoms. And they need treatment too(!).
Take care of yourself too!!!!!
JeffSeptember 7, 2014 at 3:07 pm #64522AnonymousGuest
Do you have an update? How are you both doing?September 7, 2014 at 3:26 pm #64523 Sorry I havent posted in a while – we went back to the original surgeon because he had an appointment to check my fiances scar and he mentioned that he saw we were gojng to get the lymph nodes tested. He said he could order us a CT scan to start and get the ball rolling and then offered to us to do the lymph node testing sokner than the specialist if we wanted. He explained he decided against the node testing because he believes it is such a small chance he thought watch and wait would be the better option, but that if we wanted it done he can do it.
We are going for the CT scan next week now and we are still on the waiting list with the melanoma specialist we went to see. At this point, we think we will stick with the melanoma specialist even if we have to wait a bit longer for the testing to be done, because time after time on these forums, the advice often is to find a melanoma specialist and not just someone who deals with melanoma.
If anyone has any advice, guidance or suggestions, I am open to it.
Also, can someone explain what a CT scan is and if there is anything we should know about it?
ThanksSeptember 7, 2014 at 5:59 pm #64524
I’m not sure the CT scan is going to give you any further information. But for riskier stages they can provide a baseline. Scans usually only show definitive tumors not microscopic disease. I think you are wise to stick with the specialist for the SLNB and please keep in touch!September 17, 2014 at 12:50 am #64525 We ended up getting the CT scan because we thought we may as well as it was set up for us. Just a quick update – the specialist called and the SNB surgery is now scheduled for September 29th. I am very anxious about hearing the results, but I just keep telling myself it will just be better to know either way, and if it comes back negative (which I pray it will) it will give us so much relief.September 18, 2014 at 12:06 pm #64526 The waiting is always the hardest part! Be sure to treat yourself to some relaxing time in the meantime, get a massage or do something fun. The time passes fast and just remember we are here to help you with whatever your results are. You aren’t alone, many have passed this way before you! Take good care.September 30, 2014 at 1:03 am #64527 Update – the SNB was finally done today. One lymph node was removed from the collar bone.
Can anyone tell me how many nodes are typically taken? Is the fact that only one was taken a good thing?
Hopefully we will get the results back within two weeks…. Waiting is so hard!September 30, 2014 at 11:49 am #64528
Usually they take only the nodes that “light up” or seem suspicious for melanoma cells. Hopefully the pathology will come out in your favor. Let us know and hang in there! Try to live in the moment! Enjoy those good times.
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