Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Quick question

Shirlmo
Posted by

Hi everyone 

Happy and Healthy New Year! 

Just a quick question for those who have had their Wide Local Excision (WLE).

After your initial Melanoma diagnosis, how long did you have to wait for your WLE?

xx

Shirlmo x
MoiraA
Posted by

Hi S

My melanoma journey did not follow the usual path, so I cannot answer your question.

However, I think it is important to remember that your melanoma was cut out in order for it to be sent off for analysis. It has gone. The WLE is to ensure they have 'clear margins', with no sign of any melanoma cells.

There have been some pretty long waits during my melanoma treatment. You work out a strategy for dealing with it. It is inevitable in our overstretched NHS.

All the best

Moira

latchbrook
Posted by

Hi and and happy new year to you too.

I had my biopsy excision mid October and got the news that it was melanoma about 6 weeks later. It was then mid February before I had my WLE and SLNB, so about 10 weeks after my diagnosis. 

I had a look at your profile to see how long you've been waiting but you haven't completed it yet. When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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scot88
Posted by

Had biopsy mid-June, got the diagnosis early July and WLE end of August.

Irondad
Posted by

Hi there,

I had my initial biopsy in October and diagnosed with Stage 1 Melanoma late December.  My WLE is happening in two stages on the 6th and 13th of February.

Best of luck with it all,

A

Shirlmo
Posted by

So I contacted my Dermatologist’s secretary today to get an update on my WLE. She advised that I was referred to plastics on 02 December! I phoned the hospital where the procedure will take place and they advised that I’m on a waiting list with a current waiting time of 16 weeks (could be even longer due to nursing strikes in Northern Ireland).  

According to the hospital I have been referred as “urgent “ even though my nurse advised that I would be “red-flagged”. I messaged my nurse but no response! I have found the last time I contacted her she got her support worker to call me back! 

I just feel like I’ve been left to “get on with it”. I’ve been trying to stay positive but I’m finding it really difficult! 

shirlmo xx

Shirlmo x
latchbrook
Posted by

I'm sorry to hear that you still don't have a date for your WLE and that it might be 16 weeks before you have the operation.

When I was worried that I had a long wait between diagnosis and operation my SCNS reminded me that the melanoma had already been removed and that the WLE was a "belt and braces" approach to make sure that no cells had been left behind. I can't find you mentioning in your profile that you're have a SLNB so presume that your melanoma was Stage 1a and, therefore, caught very early.

It what way do you feel that you've "been left to get on with it" and can we help at all?

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Shirlmo
Posted by

My nurse isn’t responding to my messages! I phoned her this morning and someone else picked up the call - I’ve left a message for a callback! 

I also phoned my consultant’s secretary this morning and she confirmed that I was “red-flagged” however the hospital are saying that it’s just “urgent” with a longer wait time! 

Shirlmo x
latchbrook
Posted by

It's rare that my SCNS answers the phone and it usually goes to answerphone and I have to leave a message. This is because the nurses spend the vast majority of their day with patients at the hospital. Mine usually gets back to me within 24 hours and sometimes the same day if I've left a message first thing in the morning. Hopefully, yours will get back to you in a similar timescale.

While you're waiting for her to ring you, is the question you want to ask something that we could perhaps help you with in the group?

I have to admit that I thought red-flagged was the same as urgent (willing to be proved wrong) but it does mean that we jump the queue ahead of the non cancer cases.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Shirlmo
Posted by

Hi latchbrook 

I thought the same as you but apparently red-flagged is high priority, then urgent! 

My nurse called me last Wednesday and confirmed that she red-flagged me! She also got in touch with the specialist nurse at the hospital where I will have the procedure and she is investigating why it was changed to urgent! I have to call my nurse if I still haven’t heard by this Friday! 

its the waiting that I hate! 

xx

Shirlmo x