Not long found out I have superficial spreading melanoma

Hi Sophie 1991, welcome to the forum,. Also recently diagnosed with superficial spreading melanoma of 1.3mm thickness which means I need WLE and SLNB, am so glad you asked those questions I have been having the same concerns, although even if it has spread the range of treatments out there have progressed so much in last few years.

Hey,

Thank you for your reply, so sorry to here about you recent diagnosis, when you here them words your world seems to tip up side down.

I think I’m panicked because I here of so many people finding lumps in the lymph nodes months or years after getting the all clear and it’s the melanoma spread. I feel like I should be so great full for my diagnosis as it is one of the best you could have but on the other hand I feel really anxious because I think what happens if a cell has getting to my lymph’s I will never no as I’m not aloud the test because of how thin my melanoma is. Have you had your appointment through for your WLE and SLNB yet? And your so right, you hear of people with high stages and then they become NED because of how fantastic the treatment is now. 

Sophie 

Still awaiting a date, I know your worries, we just need to be thankful and try and move on, we will be getting more frequent checks

Hopefully you get a date very soon, the waiting makes your mind race more I feel. Good luck for your op and I really hope it all goes well and you get the best possible news. Please let me know how you get on.

Sophie 

Hi Sophie thanks for the reply, shitty day today, rang hospital and still no date for my operations, told to phone back middle of next week, so frustrating  whole life is on hold until after the surgery, even had to cancel our family holiday on middle of August, due to consultant saying he wanted them done asap and he expected to have them done within a month of seeing him. Sorry to be grouchy, but you know what it feels like being in limbo.

Sonny

Hi Sonny09 

Sorry to hear you still have no date. Surely they should know when soon. 

Keeping fingers crossed for you. 

Thank you

Hi Sophie,

Welcome to the group. Well done for persevering with the various docs, it’s a good job you did.

I also had a superficial spreading melanoma on my calf. Mine was 0.6mm and non-ulcerated, but had a mitotic rate of 3. I was very concerned about that high rate, but like you my team wouldn’t entertain the idea of a sentinel lymph node biopsy. I did understand that decision - they have to follow the NICE guidelines and there actually isn’t the evidence to support SNLB improving outcomes. It didn’t stop me worrying however, and I didn’t feel like the plastic surgeon I discussed it with took my concerns seriously.

After my WLE, I found out my margins weren’t clear and I needed a further excision. At every point I’ve been told I’ve been very unlucky, it’s unusual, I’ll probably be fine, etc. They even told me they could not bother doing the further excision and I’d probably be okay, but they would because I’m so young.

That second excision was in Feb 2019 and by April I found a large lump in my groin, which was confirmed to be Melanoma. I had surgery in May and I’m now on immunotherapy.

I don’t mean for you to worry any more than you are doing -believe me I know how you feel (although I don’t have kids which must make it all the more scary) - but it is good that you are aware of the risks and are obviously being proactive in dealing with everything. 

No one had checked my lymph nodes since my very first appointment (even after 2 lots of surgery), and no one actually told me to check myself. I was checking, although  not very systematically, but once I found my lump I was shocked at how fast it grew.

I can’t tell you not to worry and not to let it take over your life because you will and it does - at least for a while. The worry does settle down, but it also will suddenly flare up again so you need to be prepared for that and take it a day at a time when it comes.

I would recommend asking your nurse/doctor to show you exactly where and how you should be checking yourself though. My groin lump was much further over in my thigh than I would have expected, so I might well have missed it in earlier checks. You said your melanoma was on your neck and there are lots of lymph glands around the neck/armpit/collarbone area, so make sure you know the key ones to keep an eye on.

Having said all that, I do think I’ve been unlucky, and it is not the norm for a thin melanoma to spread to the nodes.

I hope you get a date for your WLE soon, and fingers crossed   that’s the last of it.

Best wishes,

Kate Xx