Hi LouLou,

Sorry you are going through this. Spitz nevus are more common in younger people & children but I do know of a few adults who have also had them. Because they present similar to melanoma NICE guidelines are to treat them as if they are melanoma. So the removal (excision) for biopsy is the standard route to take. Most biopsies confirm that they are a spitz so hopefully yours will be the same & will be benign.

I hope you aren't waiting too long for the results. Good luck and please let us know how you get on,

Angie (melanoma patient)

Hi Angie,

Thank you so much for taking the time to reply, I really appreciate it. Aw thank you that kind of puts my mind at ease as I thought all adults who had a spitz would be cancer. I used sunbeds on and off for about 15 years so that's another reason I'm so scared to the results. My consultant said it would probably take about 4 weeks for results so only another couple of weeks to wait hopefully. The stress of it is literally making my hair fall out anyway fingers crossed it is benign  

Thank you again

Louisa

Hi Louisa / anyone else that may be able to help.

I just came across your post from last year. I've also just been told that the mole I had removed is a spitz nevus (and like you I immediately thought the worst as I read that it's often mistaken for a melanoma and that it's mainly children who get it) - I'm 34 y/o female so similarly I'm naturally thinking the worse. They now want to remove the skin around where the mole was removed to double check it's not a melanoma but now I'm wondering - as it's so hard to tell, what characteristics determine a spitz from melanoma? I don't know if my anxiety can hold off for another 4 weeks. (I have other medical issues I'm facing at the moment as well so my threshold for waiting /bad news isn't great!)

I was wondering what your results came out with? I hope you're well anyway.

And for anyone that does have a melanoma - what stage are you at and what has treatment been like? 

Thanks so much in advance and sending well wishes to all.

Indy x

Hey Indy,

Really sorry you are going through this worrying time right now. My results came back that it was just a spitz so no further action was needed. I totally understand the anxiety and the constant thinking about it as I was exactly the same and know how hard it is not to stop thinking about it. Where about is your mole? Have they taken more skin or are you waiting for this to be done? 

Louisa x

Hi Indy,

It's very difficult to tell the difference between some spitz nevus and melanoma and quite often they will send the biopsy for a second opinion to ensure they get it right. Just in case, they often treat the spitz as if it was a melanoma to ensure that they don't make an error & leave it untreated. However, I have added a link to a medical publication which, when you get past all the terminology, explains the subtle differences that help them with their diagnosis. A spitz will have good symmetry (not jagged edges) and the groups (nests) of cells will be uniform whereas melanoma will have an abnormal mitiosis (the cells grow & replicate much quicker than normal cells). pubmed.ncbi.nlm.nih.gov/.../

If they diagnose it as a melanoma or they can't make a decision so decide to treat it as if it is a melanoma, they will remove an extra safe margin of tissue (which they are doing in your case to make a definitive diagnosis). This is called a Wide Local Excision. Depending on the depth of the melanoma/spitz would then depend if any other treatment is required, other than a period of monitoring with regular check ups. If the spitz/melanoma is very shallow (under 0.8mm in depth, no other treatment is required but if it's deeper they will possibly offer a Sentinel Lymph Node Biopsy (SLNB) where they check the nearest lymph node to ensure no cells have travelled & lodged there. From the few patients I have heard of with a spitz/query melanoma, it's quite rare for it to be deep enough to require a SLNB. Surgery is the only treatment for early stage melanoma  whilst adjuvant drug treatment is available for Stage 3 patients (where the melanoma has travelled to the nodes) and drug treatment for Stage 4 patients.

I hope they can make a definitive diagnosis from your second excision surgery & that you will just need a period of monitoring afterwards. Good luck and please let us know how you get on,

Angie (Stage 3 melanoma patient since 2009)

Hi Angie,

Thanks so much for your response. I was supposed to hear back from the Dr yesterday but didn't. I wondered if you may be able to shed some light here.

Seemingly unrelated, I had a pain in my groin on the right hand side and an ultrasound scan showed it was a swollen lymph node.

The doctor said because my spitz was on the left hand side then it couldn't have travelled to my lymph node on the other side. (It would go to the first available lymph node which would be my left groin.)

However I can't seem to get this link / coincidence out my head.

At the same time I also had a blood test which came back clear - though I don't know what you'd need to test for to show signs of skin cancer? The doctor said if I had a cancer that had spread I'd be showing signs of anemia.
 

Basically in order to get through the next few weeks and actually get some sleep (I realise my anxiety has become acute over this) - I need to disconnect the two in my brain:

- if my bloods were clear, is that a good enough indicator that I don't have skin cancer that has spread to the lymph nodes or beyond?

- is it just an unlucky coincidence that I have a swollen lymph node for no detectable reason in my right groin? 
 

Thanks so much in advance x

Hi Louisa 

I'm so glad to hear yours was just a Spitz in the end. They didn't ask to do a wider excision to check for skin around the spitz to confirm?
(I think the only reason I have to have a second excision is because they didn't remove any of the normal skin at the same time, otherwise they could have ruled it as a spitz completely which is what it sounds like they did with yours)

Your positive makes me feel slightly better!

Thank you x

Hi Indy,

When I went to the hospital, the dermatologist was concerned about it and that's why she took it off then and there (due to my addiction to sunbeds for the previous 15 or so years) She told me when she was removing the mole that she was going to go quite deep and also remove enough tissue around it so I think that's why I didn't need to get any further tests. If I'm honest I always worry that they got it wrong but know they know better than my anxiety brain  

I'll keep my fingers crossed that everything comes back as just a spitz for you please let me know how you get on and try your best to keep your mind of it in the meantime x

Hi Indy,

The doctor is correct when they say that any lymph node involvement would be on the same side of the body as the malignancy. I'm assuming the spitz was on your left leg? If so, it would first go to the sentinel node (the nearest node to the spitz) and either lodge there or bypass it and go to the inguinal node on the left of the groin (as mine did). If the spitz was not on your leg, it would only go to the groin node if it was on your torso (lower or central), usually it travels upwards to the axillary node (armpit) as that is the route of the lymphatic system.

There are several reasons why your node could be swollen. Pain from a swollen node usually indicates infection that the immune system is fighting. A cancerous node is usually painless. Sometimes a node can be swollen and they never find the cause. So the odds of it being linked to your spitz (if it's melanoma) are miniscule.

There is currently no blood test that will show markers for melanoma in it's early stage (Australia are currently testing a new blood test they have been researching). However, the standard blood tests will show up any concerning problems with internal organs (ie. liver etc) which may indicate a spread to that organ but it doesn't apply to nodes as that type of spread is via the lymphatic (lymph) system. So if your blood tests are clear it shows there is no concern with the levels in your liver, kidneys etc which indicate there is no spread there.

I'm assuming the ultrasound results were sent to your GP? Could they give a reason for the swollen node? If it was inconclusive then that's promising. If it showed a possibility of cancer cells they would have suggested a CT scan next. I have had lymph nodes swell three times - the first was melanoma, the second was an infection and the third was the Covid vaccine! 

Try to focus on this - you don't yet know if your spitz is melanoma - there is a 75% chance it isn't. If it isn't, the lymph node can't be connected to it. If, the spitz does turn out to be melanoma, there is a very good chance it wasn't deep enough to be able to spread to the lymph node so again, it's not connected. So try not to jump too far ahead & overthink things. I know it's hard when you have no answers and have to wait for them but focusing on a worse case scenario won't do your health any good. Hopefully you will get a clean bill of health once the second surgery is done & the results are back but by then you will be mentally in shreds so try to compartmentalise. Just try to think towards the next step - the surgery. Once that is done, think towards the results. Once they are in, you will know all there is to know. As patients, we have to find a way to try and take some control over what is happening with our health and at the moment you have to focus on coping mentally. You are in good hands & it will get sorted, you just have to distract yourself and not let your mind run away from you. xx

Hey! I know this is an old post but I am currently going through the same as you , I could of wrote this myself! I was curious to know how you got on? They have said mine is a spitz nevus but want to take more off and apparently it taken 5 dermatologists to agree what it was but it still doesn't fill me with confindence. 
 

Catherine x