What questions do I need to ask?

Hi and welcome to the group!

It sounds like you’re dealing with a lot of unknowns at the moment which must be scary.

I’ve not had a SNLB so can’t tell you much about the side effects of that specifically. I had a full removable of all the lymph nodes in the groin because there was a specific lump that I could already feel. In this case they do use a needle to take cells from the node for testing - mine wasn’t guided by ultrasound because it was very obvious where the lump was they were aiming for.

The point of a Sentinel Lymph Node Biopsy is firstly to discover which of the nodes is the “sentinel” node, then get a sample from that one (or multiple if needed). The sentinel node just means the first one that the lymph fluid gets to from where the primary melanoma was. This can be different in everyone because we’re all wired up slightly differently and all have different numbers of lymph nodes! They usually inject a dye near where they’re doing the WLE then watch to see which node needs testing. Occasionally I think the lymph drains into multiple “sentinel” nodes so they may check more than one.

Doing a SNLB is only really for staging purposes and I think the research is showing that outcomes aren’t that different whether you have this done or not, so “do you think this is really necessary” could possibly be one of your questions to the surgeon?

I’ve seen in your profile that you don’t want to tell your daughters what you’re going through.  I don’t have any children, so can’t claim to understand how it feels, but I think you’ll need to think about what you are going to tell them.

You haven’t mentioned where your WLE will be, so I’m not sure where your SNLB will be either, but it is going to be very obvious that you’ve had something done and you will need to be laid up taking it easy for a few days! I think kids are probably more resilient than we give them credit for, and I would worry about how they might feel if/when they discover you’ve been keeping something from them. 
Teenage girls are also prime candidates for needing to understand sun safety! Having a relative with melanoma generally means you’re more at risk, so there could be good reasons to break it to them gently.

It is very scary going through this, but melanoma is not necessarily a death sentence anymore. The new treatments are incredibly exciting and there are plenty of people in this group who have had amazing responses where previously they had been classed as ‘incurable’.

Best of luck, and do pop back as any questions come up or if you just need to offload. Xxx

Hi

That's good news that you have an appointment with your plastic surgeon on Wednesday. Are you having the pro-op at the same time? If not, that could be your first question - when will I be having my pre-op and how much longer after that is it likely to be before I have my operation/s?

I see that Kate has already given a great explanation as to why you've been offered a SLNB so I won't go over that again. I have had this and wondered what side effects you're worried about? One interesting one is that the dye they inject you with turns your wee bright blue for a couple of days! Obviously talk to the surgeon about the side effects you're worried about so that you can then decide if you want to go ahead with the SLNB.

Some other questions to add to those you've already thought of might be, will I get the results of the WLE and SLNB at the same time as the biopsy results from the other moles or separately? If separately, currently how long are results from WLE and SLNBs taking? Will I have an appointment to be told my results?

I don't know if you work but if you do then you could ask how much time should you have a sick note for? Obviously this might increase depending on how quickly you heal.

You might also want to know if the stitches will be dissolvable or whether you'll have to have them removed. If the latter then do you go back to the hospital or to your GPs to have this done and how long will they need to remain in place?

I'll probably think of some more once I've hit 'post' but this should be a good starting point.

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Thank so much they are really useful questions. I've decided to write down the list as it's too much to remember. I feel I've become this person I don't know. I'm usually a strong positive person buthere's this part of me that takes over and my thinking goes crazy and then get fearful and teary . I hate it . But it comes and goes so at least I've learned that,and it's early days so I suppose it gets easier to accept the uncertainty. 

Thank you for your responses there's no where really to go with this stuff . I'm grateful for this space and to all of you.xx

It's a good idea to write down any questions you want to ask the surgeon as I can guarantee you won't remember what you want to ask when you get there. It's also a good idea to write down the answers, or get the person who's coming with you to do that.

Some people record the consultation on their phones so that they can listen to it later. It's important to ask the surgeon's permission first if you want to do this.

Is it your husband who's coming with you as I know you said that he was having trouble understanding the seriousness of what you're going through? If so it would give him a chance to ask questions too.

It's normal to be fearful in the earlier stages of diagnosis but you're right that you do come to terms with it. I don't think that you can ever go back to how you were before the diagnosis, as so much has changed, but you do learn how to cope.

All the best on Wednesday

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Hi

How did the meeting with the plastic surgeon go on Wednesday?

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