Metastatic melanoma

Hi Moontash 

I'm sorry to read that you've recently been diagnosed with melanoma and it's natural to wonder what might happen at your upcoming appointment with your dermatologist.

I looked at your profile before replying but as you haven't completed it yet, I need to ask a few questions before replying.

I don't mean to be insensitive but when you say you've just had a tumour removed from your leg which was metastatic, do you actually mean metastatic? Metastatic melanoma is usually melanoma that started somewhere on the skin and has spread to other parts of your body, like the lungs, liver or brain. Is it possible that you've been diagnosed with malignant melanoma?

Have you had the follow-up wide local excision (WLE) and sentinel lymph node biopsy (SLNB) yet, which is standard after an excision biopsy and being told that you have melanoma?

Sorry for all the questions, but when I know a little more I'll hopefully be able to point you in the right direction.

It would be great if you could put something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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.

Anne

Hi 

yes had small lump in my calf surgically removed on 1st November after waiting 5 weeks I had to chase for results, was called in for a face to face appointment to be told my lump was a cancer and that it was aggressive the letter ti myself and my doctor states it was metastatic. 

Oh I'm sorry that it is metastatic. 

I don't have any experience with metastatic, also called advanced melanoma, so you might find this information from Macmillan helpful.

There are a few people who've posted recently about metastatic melanoma so I'm tagging Gal2000 , whose dad has it, and Pip93 , whose mum has it, in the hope that they will come forward and share their parent's experiences with seeing the dermatologist after diagnosis.

Do come back and let me know how you got on.

Anne

Hi Moontash, so sorry to hear of your recent diagnosis.  My Dad had recently just been diagnosed with metastatic malignant melanoma. 

They found a lump in his arm amd took a biopsy as well as a CT scan for his tummy. He has a 10cm mass in his tummy which he has been Taking  morphine for now.

He started his first treatment of immunotherapy on Wednesday,so we are hoping that it works for him. 

1. Have you started treatment yet? 

Hi Moontash,

I'm so sorry to hear about what you're going through. I saw Latchbrook had tagged me, so I've just had a quick chat with my mum who's a stage 4 patient with metastatic melanoma, currently being treated.

She says that at her dermatology appointment she was handed over to the plastics team and oncology department, where they sorted out a treatment plan for her. In her case, that involved having surgery and then a year of immunotherapy - then more recently she's had radiotherapy and more immunotherapy. That might sound a bit overwhelming, but getting the treatment plan from her consultant honestly made her and us feel much calmer about the situation - and we've always felt like we're in really good hands.

If your doctor said that your melanoma is aggressive, then that might mean you're BRAF positive? If so, that would give you lots of treatment options. Although, if you're not - like my mum who's BRAF negative - there's still so much they can do. There have been such enormous advances in treatments for melanoma in the last five years, and many people have great responses to immunotherapy and targeted therapy. There are even better treatments on the way as well, like TIL therapy.

My mum's advice is to take someone with you to the dermatology appointment if you can. She's found it hard to take in all the information sometimes, so having someone else listening too can help.

Sending best wishes,

Pip x

Hi Anne

thank you so much for responding to my question, it helps so much knowing your not in your own on this scary journey. I have mt first appointment tomorrow with dermatologist so hopefully will get a few more answers. I hope your Dad gets a better result with the immunotherapy. Sending my love to your Dad and your family. X

Hi Pip

Thank your Mum for me as it’s  so good to be able to talk with somebody who understands what you are going through. I have a lovely husband and close family so I’m not on my own. I will be taking my husband with me tomorrow for my appointment he has a book full of questions and will be ready to take notes. Give my love to your Mum and once again thank you so much for taking the time to help me. X

Update on my ongoing journey. I had another mole removed from my arm on Wednesday, waiting on results for this. Dermatologist was a little stumped as they could not find primary, had Ct scan done last Sunday, so trying to stay positive this week has been extremely hard but I’m always been a half glass full sort of girl. Great news today my lovely Macmillan nurse has just called me to let me know my CT scan has come back clear. Further investigation will include PET scan and further tissue taken from my leg in the New Year. Still keeping my positive attitude.
Have a lovely Christmas everyone. X

That's great news that your CT has come back all clear Moontash 

I'll be keeping everything crossed for your PET scan and pathology results.

I hope you have a lovely Christmas too.

x