Not again

Margatemum

Hi Julie

I'm really sorry to read that having dealt with breast cancer you've recently been diagnosed with melanoma.

I was diagnosed nearly 5 years ago so totally understand the fear and worry having this new diagnosis will cause you. Like you I was initially seen privately as my lesion didn't tick the right boxes for my GP to be able to refer me under the two week rule. The dermatologist I saw didn't think it was anything to worry about but recommended that I had it removed so that we could be sure.

I'm not sure who was more surprised him or me when it turned out to be a rare amelanotic melanoma. Like you, I arranged to see my assigned skin cancer nurse specialist (SCNS) a few days later so that I could ask all the questions I hadn't thought of when given my diagnosis.

It is likely that the MDT will recommend that you have a wide local excision (WLE) to make sure that they have clear margins at the site where the melanoma was. Depending on the Breslow thickness this will be between 1 and 2cm all around the original site. As mine was 1.45mm deep I had a 2cm WLE. You may also be offered a sentinel lymph node biopsy (SLNB) if the Breslow thickness is 0.8mm or more. This is optional as it's not a 'cure' but a means to see if the melanoma has spread to the nearest lymph node. I've had both of these operations so I'm happy to talk to you about what to expect.

After that you will have regular check-ups for up to 5 years. I'm now in my final year of check-ups and during that time have had a few suspicious lesions removed but thankfully they've all come back as benign.

You may also like to join the melanoma group and, if this is something that you'd like to do, clicking on the link I've created will take you straight there.

Do let me know how your meeting on Monday goes and if you want to ask me anything please do.

x

Hi Latchbrook

thank you for coming back to me it was so comforting to read your post.  It sounds like I have the same type of melanoma as you but until Monday I won’t be able to confirm it

I’ve just read your profile and it sounds like you have been proactive and very brave with your cancer

Mine was misdiagnosed for such a long time it concerns me that it may have spread  but that’s something I will have to face up to

i will join the melanoma group 

Thank you again

Julie

Margatemum

Hi Julie

I don't think I'm 'brave' at all. I didn't have any choice but to deal with what I had in the best way that I could.

I know that it's easier said than done but try not to worry that it might have spread. If it's large enough, like mine was, then you'll be offered the SLNB to check for spread but if it's only small you may not need this. 

Keep in touch

x

Hi 

My wound was the size of a 10p so I think the slnb will be a no brainier.   It did not change at all when I hurt my foot the wound measured 2.5cm and it stayed that size until it was removed.  It became raised after I had a bacterial infection in it 

Julie

It's not the size of the wound it's the depth of the melanoma that they use to stage it and to decide what follow-up procedures are needed. In other words it's how far it's grown down into your skin. If you click on the highlighted words 'Breslow thickness' on my first reply to you it will explain that in more details.

Sorry just read it again

I have the memory of a goldfish at the moment

at least I can hope it’s not too bad

Thank you

Julie

I know the feeling. I think I was like a rabbit caught in the headlights when I was first diagnosed

I had my meeting today and basically it floored me.

I knew that it was not good because of the expressions on their faces 

i have a Stage 2c acral nodular melanoma.  The surgeon in his telephone call to me on Wednesday told me it was all ok and he had got everything.  Well that was a crock of lies.

I have to have a PET scan, brain scan a lymph node clearance and they are going to go back in to see if there is anything left there

it is a lot for me to take in.  When I asked them if they are scanning me because they know it has spread they said that it was procedure for the stage especially as it was ulcerated. They are hoping to do the scans as soon as possible which obviously concerns me greatly as if it wasn't urgent they would leave it a couple of weeks.

They asked if I minded the surgeon doing the WLE and I said yes I did

Julie

Margatemum

Hi Julie

It must have been very hard to hear that they want you to have a PET scan when you were probably just expecting to be told about the WLE and SLNB. 

When you say that "they are going to go back in to see if there is anything left there" I'm assuming that you're referring to having a WLE.

Everyone who is diagnosed with melanoma has a WLE, whether you are stage 1a or stage 2c, as it's the only way to be sure that there are no stray cells left behind. However, I'm not sure from your last sentence whether you mean that you've turned down having a WLE?

Also when you say that you are having a "lymph node clearance" do you mean that they are removing all your lymph nodes or are you talking about a sentinel lymph node biopsy (SLNB)?

If it's a SLNB you're having then I can talk to you about that but if it's a lymph node clearance (lymphadenectomy) then you'll find others in the melanoma group who can share their experiences.

I know it's easier said than done but try not to jump to conclusions and assume it's spread. I think we've all been there and know how you're feeling and we'll do our best to support you.

x

Hi Latchbrook

Yes I am having a WLE and an SLNB 

I am very afraid as they are concerned that at 10mm they do not think they have all of it which makes me think that it is really serious and advanced.

Anyway I can't guess but I can hope

Thank you for your support I really appreciate it

X