Please help me, Newly diagnosed

I also had an amelanotic tumor on my right shoulder. I was diagnosed almost a year ago.  It was very tiny and I had a wide local excision of the area.  I also had a sentinel lymph node biopsy at the same time.  Unfortunately, there was melanoma found on the sentinel node.  So I ended up having a CLND (complete lymph node dissection) under my right arm.  The good news is there was no melanoma found on any other lymph nodes.  I have been participating in a clincial trial of Opdivo and Yervoy to improve my chances of not having any recurrences.  So far so good.  I will be finished with the Clinical Trial in August.

Like you, I was very scared at first.  But with knowledge, came calmness.  There is so much that can be done these days for melanoma.

Hi- (also an Ohio Mom here). I had a very deep amelanotic lesion that also looked like nothing much, so I understand your shock and dismay. Try to harness your natural apprehension and stay busy doing things you love, (Yay for finally spring) and things that are good for you.

I did a lot of walking, running, healthy eating, went to concerts during my times waiting for appointments, surgeries and results. People on this board (so full of kindness and wisdom) encouraged me to stay off the web as much as possible- a lot of online info is out of date owing to new immunotherapy treatments etc. (treatments which you most likely won’t need but are great to know they are available if you ever do).

Thinking beautiful thoughts is good for your immune system. 

Blessings, and prayers for positive outcomes, 

Joyce

Both of my original biopsies were shave biopsies as well but luckily fairly indicative of the later pathology so I hope the same for you! 

Dr. Howard is also my Surgical Oncologist. From my research he is well regarded, confident and very well versed in current research and treatment. After our first appointment my husband did not like him very much but after 2 surgeries, an additional biopsy and numerous complications/appointments we have both come to realize that the man is very good at his job! He also has been very acomodating in working with The Cleveland Clinic. His nurse, Lisa, is also wonderful. She’s maternal but a straight shooter and an advocate for you! During my most recent diagnosis I saw him on a Tuesday and he got me in for my surgery the following Monday! 

Ohio State has had its issues with scheduling scans and multiple times I’ve been a bit more pushy than I would have liked to have been but they have normally been able to accommodate my requests- don’t be afraid to speak up! 

You will also be assigned to a medical oncologist most likely and if you can request Dr. Kendra or Dr. Shah. I see Dr. Olencki and adore him but he’s retiring soon. 

And yes- please stay off the internet!!! Even data that seems recent, normally isn’t. In the last few years, and even months advancements have been made and become available that there is no easily available information out there. 

Just last week a doctor at the Cleveland Clinic gave me some information that was presented at a conference the week before and was so contradictory to a few things I had read. Things are constantly changing and everyone is so unique in their specific situation. 

Just to clarify- hopefully you will not need a medical oncologist, but they really prefer to have one oversee everything at The James in my experience and follow you for a while after surgery. If this is the case with you those are my recommendations for Medical Oncologists there.

"…stay off the internet!!" Yes! Except for here (some beyond amazing forum participants) or to look up great docs. 

Just a litle over a month ago I was where you are now.  I was diagosed with malignant melanoma (mine is on my right flank near my beltline) where I had a mole that changed and went bad over time.  Unlike you though I had an exisional biopsy with margins about 1cm that came back as clear. As other people have said its all about getting it staged and the greatest influence on that is the Breslow depth. My melanoma was just over 1 mm in depth, a thin melanoma with no ulceration and a low mitotic rate like yours. The prognosis at that point is still very good.  Unfortunately based on the current treatment guidelines and standard of care it was just deep enough to not be classed as In SITU, where the original biopsy would  have been sufficient. So I was referred to a Surgical Onclogist and on April 20th (about 10 days ago had WLE and SNLB) the pathology report just came back negative on the lymph node. I know you are apprehensive, its a hard thing to find out you have cancer and especially one that is dangerous like melanoma. All indications thought are that you are Stage I which has an excellent prognosis. I can imagine that all sorts of things are running though your head and that they are very scary, I know that they were running though mine. But I want you to be positive and not worry too much until you have all the facts. The hard thing is waiting. Line the previous poster wrote they are probably going to suggest that you get at least a WLE with 1cm margins and go from there. If it turns out that your tumor is thinner than about 0.80 mm they are not likely going to recommend SLNB because there is no clinical evidence that supports that survival rates with thin tumors less than 1mm are any better with doing SNLB than without doing it.  You are talking here of having rates that are close to 97% -98% anyway and trying to improve on that with SNLB.

I agree with the *honest* reply of the previous poster. Would have been nice to have done an excisional, and also agree with insisting on a SLNB. To the Dermatologists credit, it was an amelanotic melanoma, and those are so frequently not at all expected to be melanomas, which is why he probably did a shave in the first place. I'll be cross my fingers for you.

By the way, Dr Howard is a SURGICAL Oncologist, which just means a surgeon who removes tumors. In your case, who will remove your melanoma. It is he that you will want to ask for a SLNB, etc. You are not scheduled with a Medical Oncologist (chemo/immunotherapy doctor), and I hope you never will be.

Offend? You definitely did not offend anyone! I was just trying to reassure you that you haven't been deemed to require a medical oncologist yet, and that you are seeing a surgical oncologist. The terminology can be confusing and even somewhat misleading. No you haven't offended anyone, all of our hearts and very best wishes are with you!!!

I think when it is amelanotic no one is thinking of melanoma (I certainly wasn’t ) and shaves happen a lot. My lesion was pretty much bisected and actually grew back to nearly its original size before my WLE in a couple weeks which was pretty horrifying.. yet my SNB was clear. Even if they had done excisional biopsy they might be going back for wider margins once they found it was melanoma. 

If they had done excisional and it was benign, we might have been vexed by our larger scar or longer healing time, higher cost. 

Hey we all went through this phase in the early days… a time of fear and uncertainty. You keep us posted on what's going on or just if you want reassurance or a vent, and we'll keep you in our prayers, too. Once that WLE and (hopefully) SLNB are done, you will be in place of certainty and hopefully one free from worry for the foreseeable future. Hang in there!