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April 16, 2014 at 10:23 pm #21922
I’m sad to be here, but grateful to find such a helpful forum to post questions to this scary diagnosis. You’ll have to forgive me, but I’m still trying to understand/grasp all the terminology.
My fiancé was diagnosed 2 weeks ago with Amelanotic Melanoma, on his neck right under his jaw bone. The melanoma looks like a patch of eczema and he has had it on his face for 5 years (it has grown and changed recently). He had this patch checked multiple times before and he was told it was a bacterial infection. At his last visit to the dermatologist, they biopsied it and it came back as melanoma. The doctor was pretty shocked because of the way it looked and his age (26). It has been the scariest and saddest two weeks of my life
I do not have a copy of his report but what we have been told is that is is .34mm deep, it is 2cm by 2cm wide and has a miotic (not sure if this is the correct word?) rate of 1 with no ulceration. They are doing a removal of the melanoma next week with a great surgeon that we have been referred to. They do not plan on testing any lymph nodes at this point. I worry because by the time he gets it removed next week, it will have been one month since he originally had it biopsied…. Will this make a big difference? Im terrified it might have gotten worse in this time.
I assumed with this information that he would be staged at a Stage 1, and I felt confident and positive. When we went to meet with the surgeon last week I asked what stage they had out in the report and he said Stage 2. I am so confused by this, because with all the information I have been reading, I believed it would be a stage 1. Stage 2 makes me feel so much more scared and anxious. Can anyone give me an idea as to why this might be staged at Stage 2? I have called the surgeon today to ask him, but have not heard back yet and my mind is going to dark places
any help/advice would be appreciated. Thank you.April 17, 2014 at 12:32 pm #64112barb3246Participant Are you sure the doctor didn’t mean Clark’s Level 2 instead of stage 2? With a depth of .34 I would be surprised that they would consider that stage 2, especially if they don’t plan on testing lymph nodes. I’m sure Catherine will have more information for you. Hang in there!April 17, 2014 at 10:55 pm #64113TreeFrogParticipant Hi ScaredV,
I agree with barb – the surgeon must have meant (Clark’s) Level 2, considering the other information. And if it were actually
Stage II, they would be investigating the lymph nodes.
My own melanoma, in 2011, was not as wide but was .47mm deep, less than 1 mitosis and was Stage Ia.
Glad he has a great surgeon! Let us know how things go.
~WendyApril 17, 2014 at 11:31 pm #64114
Thanks for the responses everyone. It’s been such a hard few weeks
I asked the doctor which stage the biopsy shows and the doctor replied they have it listed at a Stage 2. He didn’t say anything about Clark level. I was shocked he said they have it listed at a 2 and didn’t think about asking further information as he was saying all really positive things about the next steps. Its only when I started looking online that I started to get confused as I don’t understand why it would be a stage 2.
We now have an appointment with the surgeon on Tuesday night before my fiancé’s surgery Wednesday morning so he can take some time with us and full explain the report, which makes me feel better. Waiting is so hard and I just want to know as much as I can about all this so we can have the best plan of action going forward.April 18, 2014 at 11:55 am #64115Catherine PooleKeymaster
If the depth is .34 then it wouldn’t be stage 2. Amelanotic isn’t necessarily more risky, it is caught later in some cases. It sounds like a second opinion is needed on the pathology. Where are you going for therapy? You can get one from expert Martin Mihm, http://www.drmihm.com. Just have the slides shipped. I am surprised there is any mitotic rate as well. So please get another opinion. Call the helpline and I can help you further as well: In US: 866-463-6663 or outside the US 610-942-3432.April 19, 2014 at 12:28 am #64116 Thank you again for the info, I am located in Toronto, Canada. We have not been offered any therapy. So far we have been in touch with his family doctor, the dermatologist who did the biopsy and the surgeon who will be removing the melanoma on Wednesday. We will be meeting again with the surgeon again on Tuesday night now so he can fully go over the pathology report now that we have a better understanding of what melanoma is and how dangerous it can be.
What exactly is a Clark level 2? Is being a Clark level 2 a more positive then a stage 2? My fiancé says he thinks he remembers the doctor saying level 2, but I remember him saying Stage 2.
I want to be prepared, what do I need to ask? If it is indeed a stage 2 should we be pushing for the lymph nodes to be checked? His lymph nodes had been checked for swelling with some weird tube thing and the surgeon said there is no swelling, which I understand to be a good thing.
It’s all very confusing. I am planning on calling the helpline tomorrow… Will someone be available?
Thank youApril 19, 2014 at 3:35 am #64117TreeFrogParticipant
As Catherine has mentioned, with a thickness of .34mm, it is impossible for the lesion to be Stage II. Part of the definition of Stage II is that the lesion is 1.01mm thick and up.
Clark’s Level 2, on the other hand, is a measurement of what anatomical level of the skin is involved. It’s not as important as the thickness. Clark’s Level goes from 1 to 5. Clark’s Level 1 is an in situ melanoma (the earliest, thinnest kind). Clark’s level 2 is just a little bit deeper.
It sounds as if your boyfriend has a Stage I lesion, which is low-risk, but needs removal and follow-up. Good luck with the surgeon and surgery!
~WendyApril 23, 2014 at 12:06 am #64118
Update – hi everyone, I just wanted to update you all, we met with the surgeon again today and I asked him to clarify why this was staged at a Stage 2 and I am happy to say you all were right – it was a Clark Level 2 not a Stage 2. This makes me feel so relieved and I am so grateful to all of you for all the great info. Tomorrow it will be removed and I am praying all goes well and no further action is needed. Again, thank you all again so very much.April 24, 2014 at 11:57 am #64119Catherine PooleKeymaster Clarks Level is rarely used anyone, it was replaced by Breslow depth. But maybe in Canada it is still a prognostic factor on the report. Good to hear that you received this news and keep in touch.April 25, 2014 at 1:43 am #64120 Thank you for all for the responses and also for the great info Catherine. Your information and helpful advice has been so comforting to me during this time. The surgeon confirmed during that appointment that this is a stage 1 melanoma, no ulceration, clark level 2 and the mitotic rate was less then 1. I was happy that I went back and cleared everything up before the surgery.
The surgery was yesterday and all went well, my fiance is at home resting. Now we wait for the results and I am still feeling somewhat anxious. My only fear left at this pount is the fact that the spot on his face was so large (2cm x 2cm). The surgeon took a 1cm margin around it.
My last question is, is it possible that this melanoma could be thicker in the area around where the original biopsy was taken? The whole lesion looks pretty uniform with a few small bumps. The original biopsy was taken from the middle of it. What are the chances that this will be a lot thicker in any other area of the lesion? Is that even something I should be concerned about?
Again, thank you all for the wonderful support and advice. This has been very hard for me and I truely appreciate it.
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