- This topic is empty.
June 3, 2014 at 7:45 am #22011
it’s been a while since I last posted. I enjoyed a bit over 2 years of NED status but unfortunately my melanoma has come back as a local recurrence (approx. 2mm from the edge of my WLE scar). Now I’m facing a dilemma and I’ve received differing opinions from different clinics.
The original melanoma was 1.8mm and in my ear. They did a wide local excision with 1 cm margins (due to the location). This new melanoma (2 years later) is 1.2mm and located just a few mm away from the scar.
THE DILEMMA: the ENT clinic wants to do a WLE taking as much as possible, big operation with skin graft etc. etc. This operation would take place in about 2 weeks. The skin clinic wants to do a small operation, just making sure the margins are clear, but without any safety margins. I could get this operation done immediately. Their reasoning? It hasn’t been proven that wide local excision improves the outcome for local recurrences.
What would you do? In my opinion I should get as much as possible removed. What if it is a pure local recurrence and not systemic? Why not do a WLE with proper margins?!? It feels like they are giving up on my already!
Need urgent responses – looking forward to hearing from you!June 3, 2014 at 11:54 am #64613Catherine PooleKeymaster
I would like to know who these clinics are? Do they do research there? In melanoma? The opinions are most credible from experts. It is true that the wide excision rarely provides further information if a proper biopsy is done. How expert are these folks?June 3, 2014 at 6:22 pm #64614farang100Participant Even the experts disagree amongst themselves on surgical margins.
My original surgeon did .5cm clearance but when i changed doctors the new one said i needed much clearer margins and said my original doctor who he knew didn’t agree there was any great benefit with the wider margins.
Plenty of research papers to look at if you want to.
I ended up getting it done but who knows who was right and how could you ever tell anyway?June 4, 2014 at 10:39 am #64615
Thanks for your replies! I’m actually an Aussie in Germany and I’m being treated in a melanoma centre in Freiburg. They are evidently Melanoma specialists … nonetheless I am a bit sceptical. From what I have heard they only want to remove what is left of the tumour without safety margins.
I remember back when my first melanoma was excised they said it was taken out completely (pathologically proven) but the pathology report after the WLE found remains of melanoma cells in the WLE.
Why would it be any different this time? What is different about a recurrence?!? Very confused …June 5, 2014 at 6:02 pm #64616martiParticipant
Understand the difficult position you are in, and wish I would have any answers. I just had a recurrence in my outer ear after almost 5 years from a ( so called very low risk) melanoma Breslow 0,6 or 0,64 ( two different opinions) Yes there where clear margins and no signs of micro-satelitosis in 2009.
My first WLE in 2009 had margins of 0,5 cm. After finding the recurrence I had a procedure (pizza-slice shape taken out) of 2,2 cm. So twice wider margins.
Now the difference between (true) local recurrence, satelite metastasis, or in transit metastasis; First I was told recurrence has a better outcome, so still low Risk. In the other centre they told me there was not much difference in those different diagnosis. All of the above create a higher risk.
I just gave up in digging for the right diagnosis, if this would exist, just keep on going, being vigilant and hoping for the best.
I wish you good luck with finding a doctor that will use the procedure you are most comfortable with, I hope this is the last time you have to deal with melanoma.
MartiJune 6, 2014 at 2:58 pm #64617
Hi Marty, thanks so much for your reply. I find it important to follow up on any posts made (for the sake of others who ever find themselves in this position) so this is where things are standing:
I got the smaller excision done, basically just to be sure that it is completely out. The approach will be to have a PET/CT exam and then based on that they will adapt treatment accordingly. As far as I’ve understood if the scan is clear they will operate again to take as much as possible (for safety reasons). If the scan doesn’t happen to be clear, there will probably be other treatment options. I can understand why they are taking this approach, but I’m really hoping for the best!
In my case they don’t think it’s a local recurrence but rather a satellite. They’re not completely sure, though. It’s certainly not a new primary because it is a very rare type (nevoid) and the likelihood of having 2 nevoid melanomas within 1 cm of each other is rather low.
As a side – approx. 8 hours after surgery I got the shakes and a fever of 39.4 degrees celcius. Ended up back at the clinic having an EKG and got sent home with antibiotics. The wound doesn’t seem terribly red or infected but something is causing the fever! Anyone ever experienced that?June 10, 2014 at 9:12 am #64618farang100Participant
You might also want to look at cimetidine or Tagamet as a preventative measure against recurrence there is some evidence that it might work and it is generally without side effects.
Talk to your doctor first of course.June 11, 2014 at 5:44 pm #64619martiParticipant
I certainly hope you are feeling better and the Petscan did not show any “activity”. In my( simple )thinking your doctors are choosen a rational decision to rule out any systemic involvement. And then act accordingly.
In my case the first hospital was quite sure (recurrence) , the second opinion,(metasis) did not see much difference between the 2 diagnosis, and this surgeon also ordered a PET scan ( and if you want to know; you want to know it now, those where her words) so I had it done the following day.
The PET scan did not show any abnormalities, and a (neck) ultrasound is scheduled for every 3 months. Dont know how often (if) the Pet scan need to be repeated, but I feel confident in her appraoch.
Yes I agree with follow up of your story, so others might benefit. I cannot emphasize enough that the word “very low risk”does not imply ” no risk”. Over the last 5 years I heard those words every time I asked a question.. That has now changed, every time I ask a question, the answer is:” melanoma is unpredictable”. So never think twice if you see any difference, or feel guilty because you are considered “very low risk”.
Please keep us updated about your experiences,
MartiJune 27, 2014 at 6:17 pm #64620
Hello everyone, just a little update …
the fever ended up being totally unrelated to the operation. It ended up being sepsis caused by a virus which saw me taking an ambulance to hospital and spending many days in recovery after it basically demolished my immune system (leukocytes were down to around 1000, I was very sick.) All the while the docs were wondering if I had melanoma in my bones … but …
The Pet CT didn’t light up!
(It ended up being slapped cheek / 5th disease … both my kids had it at the same time!)
Anyway, back to the melanoma … the second excision I had confirmed that it was a satellite metastasis and they also found another satellite in the sample. So I had a third excision (wide excision) and am currently recovering from that in hospital and waiting for results. That upgrades me to stage 3b
😯so I guess I’ll have to move over to the stage 3 forum. Up until now I’ve been an avid forum reader and haven’t made many posts but I’ll continue to update now in case it interests or helps anyone else.
Off I go to shake hands with the stage 3 folks … good luck to you all!
(As a side – I am very interested in Tagamet / Cimetidine. Has anyone taken this?)
- The forum ‘Melanoma Diagnosis: Stages I &II’ is closed to new topics and replies.