Hi, My husband found out Friday that a biopsy came back positive for melanoma. I have been reading on this forum and learned so much already, but it’s only a tiny fraction of what we need to learn. The details:
- September 26, 2021 at 5:15 pm
I don’t have the biopsy report (yet). He’s had a mole on his face for decades. Not that large – he had a derm look at 5 years ago. Derm said nothing to worry about. 6 months ago he went to a (different ) derm to have his moles looked at again (he is fair skinned and his father has had pre cancerous and maybe even basal cells removed so my husband wanted to be careful). The derm looked at the mole on his cheek but didn’t biopsy it. She said they’d watch it and he should come back in 6 months.
Cue to today. He went back and this time asked the derm to biopsy it just to be sure.
I believe she scraped to biopsy? She said at the time that she didn’t think it was anything, but that if it was, it would probably be basal cell.
She said 1/3 melanoma cases come from existing moles that don’t present like melanoma and that sometimes results in a delay of diagnosis. The biopsy went .6mm deep and melanoma was present throughout.
We are trying to figure out next steps.
His derm forwarded his file to a oncological surgeon/ENT and said they would need to determine whether it exceeds .8mm in which case they would biopsy lymph nodes. We know that he is greater than .6mm which is pretty darn close to .8mm. I’m reading here and elsewhere the SLNB would be the way to go, but since it works by injecting dye into the tumor, if they remove the rest of it first to determine the depth, we will be losing the opportunity for SNLB. We know that he is greater than .6mm which is pretty close to .8mm. My gut says we should just have the Wide Excision and SLNB done together even though it may end up that it was only .7mm deep . (although now I”m wondering if insurance would pay if it hadn’t been proved to be .8mm first).
We are in upstate NY. Can anyone recommend a melanoma specialist in the Albany NY area? (not sure of the credentials of the person we have been referred to yet).
We are approx 3 1/2-4 hours from NYC so are also considering Sloane Kettering based on what I have read here thus far…but I am wondering if it would be hard to get in there quickly? Even in upstate NY we might have to go to the colleague of the doctor we referred to because its a month until appointment.
How do people who travel manage treatment ( I hope it won’t have spread, but we have to prepare)? Have people found if a local specialist was willing to coordinate or follow you even if you went elsewhere? I’m thinking specifically if someone has side effects of a treatment and need to get treated locally etc.
The mole is in his cheek – I’m guessing it likely drains into lymph nodes in his neck. How “big” of a procedure is the SLNB for lymph nodes in the neck? How long in hospital? How long until back to work? Side effects?
Thank you so much! Already you have all helped me so much by browsing through many of these posts. I will continue to read here.
Hi, I to am from upstate NY. Best decision I ever made was to go to Memorial Sloan Kettering. They got me in very quickly, and they know exactly what to do. If your oncologist is not just a melanoma expert you need to see someone who only treats melanoma.
- September 26, 2021 at 8:19 pm
I was diagnosed 2c in November 2016, stage 3c March/April 2017, and stage 4 August 2017. It can move very quickly and you husband should receive the best treatment he can get, ” but go to a melanoma specialist” and let them determine what to do next(Hi Celeste how am I doing !).
You are welcome to contact me if you would like and I can provide you with all the information you need.
Also, although it seems like you must do something this minute you do have time to do it “right”. It won’t change anything in the short term. I contacted MSK and visited with my surgeon, plastic surgeon and oncologist 8 days after I contacted them. I had my first surgery 8 days after the first meeting. The care I was provided was outstanding! Once you’re familiar with moving around the city it was very easy to get everywhere.
- September 26, 2021 at 8:25 pm
Thank you, Bill. You are 100% right that even having to wait through the weekend after a diagnosis is torture. So if I read this correctly, it sounds like it was approximately 16 days from contacting MSK until surgery? I know there are delays in surgeries at many hospitals because they are full of COVID patients – I’m thinking/hoping that since Sloane is a cancer hospital they won’t have that issue. I will call them tomorrow morning – do I call a specific doctors office or just the general phone number and they’ll transfer me?
- September 26, 2021 at 9:08 pm
Do you do anything locally? Will my husband need a physical with his primary physician before any surgeries? I’m trying to anticipate what I can to expedite the process.
I hope you are currently doing well.
Hello JD, and so sorry you had to join this group and you are right, you are in the very intense information gathering stage which can be very overwhelming. Bill is absolutely correct, seeing a good melanoma specialist is key as well as melanoma surgeon. I would definitely opt for Sloan Kettering even though the distance can be challenging. When my husband was diagnosed, he had a very large melanoma on his back shoulder area (we only knew the punch biopsy which was 5 mm, but it turned out to be 22 mm when he did the WLE and SNB). That is not meant to scare you, just that they do need to get clear margins. The melanoma’s located on the head can be challenging just by the nature of they are close to a lot of stuff that matters, so important to have a really good melanoma surgeon for the WLE/SLNB. He got the diagnosis from his local dermatologist on a Friday and I think it was about 17 days before his surgery at MD Anderson on a Monday. The wait, while extremely hard, was worth it to have that level of expertise during surgery and follow-up after the surgery. Plus, if needed, access to clinical trials, etc. He has not needed follow-up treatment yet since his surgery, he was on wait and watch, but this was before all the approvals for adjuvant (after original treatment which was surgery) therapies. There are a lot more proactive options depending on what stage he is at, hopefully won’t need any of those though.
- September 27, 2021 at 8:37 am
My husband had a great melanoma surgeon, which is probably also important. He had a visit before the surgery, pretty standard visit where they looked at the melanoma and planned their surgical approach. Then after surgery we met with an melanoma oncologist, however, this was several weeks after the surgery. He had to wait weeks before scanning (they have to let the area settle down after surgery to get accurate assessment/imaging). Again, depending on what they find during removal and SLNB will guide what follow-up they recommend. My husband was high risk due to the size and that it was possibly not the primary site, so he had more regular scans after his SLNB came back negative. He had three nodes removed based on the injection.
I work at a large cancer center. They are operating pretty normally now and have such strict COVID protocols with our immunocompromised population. We are able to operate fairly normally for the patients, so not seeing the issues of normal hospitals right now, as you noted.
One silver lining of the pandemic (if you can call it a silver lining) is they are doing way more video consultations in response, so you may be able to talk to a doctor before traveling there.
Bill will have more details regarding the process there, that is one of the battles of any disease, is just getting through the system. That can be it’s own very challenging issue.
FYI, my whole family came from upstate NY, much love for the area.
Many hugs, just keep gathering the information, you already are such a great advocate for your husband. Doing everything right.
I disappeared for a day there while trying to get something scheduled for my husband. Happy to say we have a consult with a surgical oncologist at Sloan Kettering on Thursday. The one he was assigned is a face and neck person who is does a bunch of stuff in addition to skin cancer. I was hoping for someone more specific to Melanoma but we didn’t have a choice. But when we get to the next step, hopefully the medical oncologiswill be more specialized.
- September 29, 2021 at 10:32 am
Jackie, thank you for sharing your husband’s story. How long ago was his surgery? This was helpful to help me to hear!
So glad to hear you have a consult with surgical oncology at Memorial Sloan Kettering and I think any surgeon there is going to have the experience you want for your husband. They will have seen enough melanoma in the head/neck area. They are one of the top places in the US.
- September 29, 2021 at 12:10 pm
My husband’s surgery was February 2014 so it has been 7 1/2 years. But I still remember the day of the surgery like it was yesterday, it is intense period when you just don’t know the status of everything.
Wishing you and your husband the best possible results and that everything is negative, etc.
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