Melanoma

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

Diagnosed Today

KTatHome
Posted by

Hi , welcome back ! I know some people cope better if they research what might happen next, I think has given you a good lick to the NICE guidelines it has lots of individual things to click on to find out more info on the steps. I also like the patient decision aid 

https://pda.melanomafocus.com

It breaks down each stage and has a set of questions of things you might want to consider. With your mole being on your back I’m not sure which set of lymph nodes might be affected either arm or either groin. Until a year ago you would have been just on watch and wait and a node dissection would only be offered for a very high probability of spread. The adjuvant treatments that are now available are to mop up any cells, and there’s a few options so if you go down that route you will have to discuss what’s important for you as some treatments have a greater risk of side effects and different treatment periods to consider, as well the statistics for no further recurrence. 

You may also find that on you tube the melanoma patient conference videos can be a good thing to watch, medical professionals talking to actual patients, so they aim the discussions at the right level, lots of helpful stuff on their from anxiety, adjuvant treatments and now I can’t think of anything with a z but perhaps a P reading a pathology report.

i love katybb’s suggestion of student services to help talk things through and give you support with staying at uni, the emotional side and I’m wondering about support at appointments if your uni and possibly hospital is far from home.

im hoping that if you do need immunotherapy that you will be like me and sale through it with little side effects, but unfortunately there’s no way of telling, and the waiting and anticipating the worst can be the worst part, especially when it might not happen.

Best wishes

KT 

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latchbrook
Posted by

Hi

Have you got a date for your WLE/SLNB yet and have you had a discussion on whether to have a SLNB or not?

x

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

What is a Community Champion?

MH20
Posted by

Hi latchbrook,

I have a plastic surgery appointment on 4th October - seems like quite a wait! 

I'm freaking out a little because I'm worried about the melanoma spreading. I've had the cold recently and have some discomfort in my chest and back - I put it down to having the cold but it's better now and I still have the discomfort so, of course, I'm now convinced that the melanoma has spread and I'm waiting on appointments whilst it runs riot through my body! 

Thanks for checking in, it's nice to know that someone is.

MH20

"I am not afraid of storms, for I am learning how to sail my ship."

~Louisa May Alcott

latchbrook
Posted by

Hi

Waiting for appointments, operations and then results all seem to take too long when you're the one waiting for them. I think for you it will have been about 4 weeks from diagnosis to appointment, which I think is about average.

It was about 8 weeks after I was diagnosed before I had my appointment to see a plastic surgeon to discuss the WLE and SLNB and then a further 2 weeks before the operations happened. In my case it was because Christmas and New Year got in the way and then it was also during the winter when even cancer treatment was being delayed because the NHS was so stretched.

It's perfectly normal to think that anything that you notice wrong with your body means that the cancer has spread. We all do it and even now, 3 years later, I still catch myself doing it occasionally. Your body has let you down big time and it will take you a long time to trust it again and not to immediately think cancer when you notice something.

Do let me know how the appointment goes.

x

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

What is a Community Champion?

MH20
Posted by

Thanks latchbrook, I'll keep you updated on what is happening. Thanks for being there!

"I am not afraid of storms, for I am learning how to sail my ship."

~Louisa May Alcott

MH20
Posted by

So I went to my plastic surgery appointment today. I'll be having a WLE and SLNB and it will hopefully be before the 28th October.

The consultant said that the lymph node mapping will take place at one hospital either on the day before or the day of the surgery and then the surgery will be performed at another hospital - I found this a little strange.

I had the option of the SLNB and chose to go for it because my lesion has showed some regression so we are unsure of how large it has actually been and I'm sure I would just worry if I didn't have it done.

Looking forward to just having everything over with!  

"I am not afraid of storms, for I am learning how to sail my ship."

~Louisa May Alcott

latchbrook
Posted by

Hi 

Glad to hear that you don't have too much longer to wait for your operations.

I had my lymph node mapping (lymphoscintigraphy) in the afternoon and my WLE and SLNB the following morning. Like you, mine was done at two different hospitals. My plastic surgeon was based at one in the city while the nuclear medicine department was based in the other. So this isn't unusual.

Let us know how you get on 

x

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

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latchbrook
Posted by

Hi Bev

I was wondering how you were doing and if you'd had the results from your CT scan yet?

Hopefully, everything's calmed down at home now and your family are being supportive.

x

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

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BevAndy
Posted by

Hi.

No results still not in after weeks.they reckon another 3 weeks atleast.

Scars healing  well.

Family.

Will never be the same .which is a shame

But i have plenty to do to occupy myself.

Mum with dementia.mother in law 80 so keeping an eye.

Planning my future with hubby 

Bev

latchbrook
Posted by

I'm sorry to hear that Bev but you can keep talking to us here.

Sending a supportive (((hug)))

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

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BevAndy
Posted by

Thank you.

Life is very hard some times

Bev

Rosesbloom
Posted by

Hi Bev,

I was diagnosed on the 19th September and staged at 1A. I underwent a wide excision and a skin graft on my right foot yesterday.

Since I was diagnosed I've been constantly worrying whether it's spread and I also get the "you'll be fine" comments. I feel a little lost and don't really know where to turn.  So I fully understand what you're going through.

I'm trying to stay positive but I'm finding it hard.

I was assigned a cancer nurse and she explained that being staged so early it's highly unlikely that it's spread but they can't guarantee it. I was also told that they would check my other moles and show me how to check my lymph nodes but as yet this hasn't happened and I don't know when it will happen.

I go back to the hospital on Monday and get to find out if the graft has taken. 

BevAndy
Posted by

Sorry to hear yournews.

Yes it is very hard.

Ive waited 4 weeks for results now and a few more they say as  they are behind  with looking at scans at addenbrooks. 

Also it makes other situations  in your life seem 100%  worse, adding to stress levels .

We will get there in the end as we become stronger.

Getting over the initial shock first.

I wasnt told about checking lymph nodes,  but i will ask at next appointment.

Fingers crossed for you on monday.

Take care

Bev

Bev