Diagnosed Today

Hi and a warm welcome to the group

I spoke to you in New to the Community last week and I'm sorry to see that this mole has turned out to be melanoma.

There's no right or wrong way to feel about the diagnosis. Some people are extremely upset and worry endlessly about the future whereas others are very matter of fact and take everything in their stride.

It's perfectly normal though to worry that it might have spread and I doubt there's a person in this group who hasn't had those thoughts. I've had both a WLE and the optional sentinel lymph node biopsy (SLNB) so I'm quite happy to go into more detail about what those operations entail if you want to know more.

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.

x

Hi Latchbrook,

Thanks so much for replying to me again, I’m so glad you have! 

I’ll update my profile to give people a little more information and update on my journey.

I’m not sure when my WLE will be and have been told the plastic surgeon will decide if I need a lymph node biopsy. The consultant today kept saying that the melanoma had breached the barrier that they look for so I assume that means that it is between 1.01-2mm thick. She didn’t mention ulceration though which I assume is good. 

Thanks again! X 

Hi

Whether you have a SLNB or not is something that should be discussed with you and you shouldn't be told whether you're having one or not!

Anyone who is staged at 1B or above can opt to have this procedure as you will see if you click on these NICE guidelines. It also sets out the possible advantages and disadvantages of having the procedure. One thing to bear in mind is that it isn't a treatment but a staging tool to see if the melanoma has spread to the lymph nodes.

I'm also creating a link to the NICE decision aid which you'll see they say is "to help you and your healthcare professional talk about whether or not to have a sentinel lymph node biopsy". Talk about, not be told. Sorry, I'll get off my soapbox now, lol.

x

Hi.

No offence.

I was diagnised 6 weeks ago.in that time i have had  the melanoma  removed  and lymph  node. Node had cancer in it too.now awaiting abody scan.

Im basically in shock. 

I felt the same as you. 

I thought i was a fraud as only melanoma. Hopefully mine caught early as they said it was 1 on their scale.they said they were 95% it wouldnt have spread ,but it still hard to walk as was just above my left knee.Maybe muscle and nerve damage but wont know for few more months.

But my emotions  are now coming out.any time ,any where

I feel alone as family  and friends dont understand . You can hear "youll be ok " enough.

I hope to for some advise and friendly chatter 

 Bev

Hi Bev and welcome to the online community

I'm sure no one here has taken offence from your post and I can quite understand why you'd be feeling in shock after the whirlwind 6 weeks you've just had!

Could I recommend that you join this group as you can then start your own posts as well as reply to existing ones. To do this, scroll to the top of the page and select 'join this group'.

It can be very irritating when people say that you "only" have melanoma. I think people think that if you're not having chemotherapy and losing your hair then your cancer can't be that bad.

Your family and friends probably don't understand the implications of having melanoma so this is your chance to educate them and warn them about the dangers of sunbeds or not being careful in the sun. Of course they may say things like "you'll be okay" because they really don't know what to say and they think that they're reassuring you.

Rest assured no one here will make those trite comments but we will try and calm your worries when we can.

Thankfully, my SLNB came back clear so I haven't had a scan or any further treatment but there are plenty of people on here who have and hopefully they'll be along soon to tell you about their experiences.

x

Hi Bev,

Sorry you’re here... My initial diagnosis was a stage 1a melanoma, and it’s fair to say I’m a pessimist, but no-one was taking my concerns seriously. Then when my staging changed to 3b within the space of a few months I almost felt smug that I was right when everyone had been telling me not to worry because I’ll be perfectly fine. There’s been a whole host of weird emotions going on!

I think my overwhelming attitude to the whole thing has been that I can feel however I damn well like and it’s up to everyone else to deal with that. I started a blog so I could make my feelings quite clear to everyone from the outset - I was not interested in their advice on turmeric and positive thinking! It definitely helped, without me having to offend people one-to-one. 

I can see friends struggle with how matter of fact I’ve been about everything - there isn’t a middle ground for most people, they either think it’s just melanoma and you’ll be fine, or they hear cancer and think the worst. They definitely can’t get their heads around immunotherapy - you’re having regular treatment but you’re not violently ill with your hair falling out??!

Don't have expectations of yourself. It’s rubbish, it’s scary, and it’s all really uncertain. You are going to be all over the place! Find the people who are good to talk to when you need it - here is brilliant - and try not to feel guilty about everything else.

Let us know how you’re getting on.

Kate. X

Thanks for you message 

I have fallen out with my daughters.rowed with my husband its all going to pot.

I think they have reacted different to what i thought 

Or what i think i would be  like .

Very very hard

Bev x

That sounds tough - you must feel quite let down?

Do you usually talk much as a family? I don’t have a partner or kids and I can’t imagine how scary it must feel when you’re worrying about them too.

My mum has never been a touchy feely caring type, and that’s definitely not changed with my diagnosis! I’ve started going to all my appointments and treatment on my own because I can’t cope with her getting stressed about traffic and appointments running late and stupid stuff like that.I go to other people when I need a hug.

Sending big hugs your way. X

I’m just catching up on the conversation and thought I’d join in a group hug  

, I read your on the same drug as me Pembrolizumab, and was just wondering if you have it 3 weekly or 6 weekly? I make a rule of never driving back after my Pembro, as I haven’t always felt 100% as it affects my blood sugar levels and fatigue levels, I hope your coping with it ok.

, I think there’s loads of people who at one time or another have thought, if I had to have a cancer why couldn’t I have one of the good ones! No offence taken I had a steep learning curve when I was diagnosed with metastatic melanoma, and had to embrace the dark side and the hopeful side of things.

, I’m sorry to hear your support has gone a bit awry at the moment. In Cambridge hospital, Addenbrookes, you do have some lovely people in the Macmillan info and support centre near oncology, I’ve had a moan to them on more than one occasion, when I’ve felt a bit frustrated, and there’s a Maggies centre at Cambridge that will offer you a nice cup of tea a chat and support if you need it, as well as all of us here. 

Hi KTatHome, I had my first double dose this week to last me 6-weeks! Luckily I’m fine during mine, other than always feeling cold as it goes in (I try to keep hold of the heat packs for as long as possible, but they’re like gold dust) and never had any problems straight after. I did munch my way through half a bag of fruit pastilles during my treatment this time though, which might have masked any low blood sugar somewhat!

Have you moved onto 6-weekly then? Any differences?

I’ve had a cold the last couple of weeks, which has gone, but a cough which is lingering now. I never quite know when I should get things checked out - the hotline seems to always be ‘full panic mode, go and see an out of hours doctor immediately,’ but the staff when I’m clinic are never concerned about anything! I think it’s this uncertainty and paranoia around treatment side effect stuff that I struggle with the most.

x