Very recently diagnosed and clueless about next steps

Hi and a very warm welcome to the online community

I'm very sorry to read that you've recently discovered that you have melanoma but you've come to the right place to ask questions, share experiences and get support from others who have had a similar diagnosis.

I was diagnosed with melanoma 4 years ago and was also offered a SLNB as my melanoma was 1.45mm deep. Like you, I didn't think to ask what stage my melanoma was as there was so much to take in. If you want to read about the various stages of melanoma click on this link. When your SCNS (skin cancer nurse specialist) returns your call she should be able to tell you whether you are stage 1 or 2.

It's normal to have to leave a message for the SCNS to phone you back as they're normally with patients and have a 'window' for returning calls. 

As for whether the lumps you've found in your groin means that your melanoma has spread, it's impossible for us in the group to say. It's the lymph nodes job to take care of infection in our bodies and they could have swelled because your body is fighting an infection at the moment. However, they could have swollen because they've caught some melanoma cells.

You will have a consultant in charge of your overall care and it is usually this person I see at my three monthly check-ups. However, sometimes it can be one of the consultant's registrars and I know that at some hospitals skin cancer nurses do the check-ups. 

I had my WLE and SLNB about 10 weeks after my diagnosis. It's normally quicker than that but it was a particularly bad winter the year I was diagnosed and lots of surgery was delayed. 

Do let me know how you get on when you speak to the nurse.

x

Thank you so much for your response, it is very helpful at this very confusing time. How are you now, did you have to have any further treatment ? I'll keep in touch and let you know how I get on. Take care xx

Thankfully no cancer cells were found in my SLN  so I didn't need any further treatment. I've been on three monthly check-ups ever since although these have been by telephone since May last year.

If you want to read my story just click on my username or profile picture and if you want any info about the WLE or SLNB I'm happy to tell you about my experiences.

x

Hi Monkeylover

I too and perhaps many in this situation can relate to the feelings you are having, when I was first informed of my diagnosis and I found, I did not hear anything else being explained to me, and then spent many days after, contacting SCNS (often leaving a message and they would get back to me when they could) to be retold information and I had lots of questions and they were very good and understanding about repeating things to me. I’m recently diagnosed too in Nov 2020 and just had my WLE and SLNB this week.  I found sometimes questions would pop in my mind and would write then down so I wouldn’t forget when speaking to SCNS. Be gentle with yourself and hope you speak to the skin cancer nurse soon , and for added support I contacted the Macmillan support line and spoke with their nurses for added support that I found beneficial and supportive. Best wishes 

Thank you for your response TrueRed I really appreciate it and hope you're recovering well after your procedures. Hope you get good news on your results. I've just had a call back and I'm going to the hospital tomorrow so the nurse can examine my lump(s). I'll keep you posted. Once I know when my procedure is I'd love to hear from you and latchbrook on what to expect but for now my head is a tad mashed so one step at a time. 

Take care x

Hi lovely, like TrueRwd I was diagnosed stage 2a in November and have just had WLE and SLNB last week. So around 8 weeks after diagnosis. Did your SCNS give you all the paperwork? I too found that my brain sort of switched off in shock during my diagnosis conversation. But giving myself time to look through all the paperwork (and looking on this forum) really helped me get to grips with the information. I would agree, whenever a question pops into your head, jot it down. 

hope your appointment goes well and gives you an opportunity to ask the questions you want answers to xx

Hi MammaT, thanks for your response. No I haven't had anything at all but assume its coming. Hope you're results are ok. Keep me posted xx

Hi latchbrook, TrueRed, MammaT

Great news! The nurse managed to nab the surgeon whilst I was there and he was totally amazing and very reassuring. My lymph node feels normal and only feels big to me coz I've lost a huge amount of weight (been working very hard) and it wouldn't be so obvious if I had a bit more padding and wasn't  looking for it following my diagnosis which makes sense.  He assures me that a few weeks  delay in having surgery will not be of detriment to me and although things are a bit mad because of covid I will be done in the next 8 weeks or so. Feel a lot more relieved. I just need to digest everything now and would welcome any advice or insight you can give me to understand what the slnb op has in store for me. He mentioned some patients have issues with drainage (think this is what he said) is this anything you experienced?  Thank you all so much for your support.

I was lucky and came back from surgery without a drain! Only thing I’ve got is a bit of swelling abs some numbness under my arm, which after posting on here I’m assured is normal. I go to get my wound check tmw but I think everything is dissolvable and healing ok  

That's great news ! You can now relax, hopefully.

I had about a 10 week wait between being diagnosed and having the WLE and SLNB and was a little anxious about the amount of time. However, my SCNS was able to tell me that my original excision had clear margins so to think of the WLE as a "mopping up exercise".

I think the surgeon was probably referring to the risk of lymphoedema when he referred to 'drainage'. Click on the link if you want to read about it. This was the one thing I was concerned about but my surgeon reassured me that he done hundreds of SLNBs and only a handful of people had experienced it with none having it permanently. You might find it useful to look at this decision aid that NICE have produced to help you decide whether to have a SLNB or not.

This is Macmillan's information on having a WLE and this what they have on a SLNB. My WLE and SLNB happened over two days. On the first day I had a lymphoscintigraphy which identified the location of the sentinel lymph node in my armpit. You are injected with a radioactive dye and then lie down while they wait to see which lymph node it travels to.

The second day was the WLE and SLNB. Having never had any surgery before, let alone a general anaesthetic, I was nervous but everyone was very good, explaining what was happening and it wasn't nearly as bad as I'd imagined.

I didn't stay in overnight and was sent home with instructions on when and how often to take painkillers. I followed the instructions and after a couple of days I found I didn't need them anymore. 

You should be advised to take it very easy for a couple of weeks and not do anything strenuous. My husband did all the housework and cooking, so there is a silver lining!

Anyway, that's probably enough to be going on with but fire away if you want to know anything else.

x