Hi Tash,

We've spoken before and I'm sorry to hear your results but don't panic.

The further test will be on the mole tissue they initially removed. They will be doing a BRAF test on the tissue. All melanomas carry the BRAF gene, 50% of patients are BRAF positive, the other 50% are BRAF negative. The oncologist needs to know which you are before they can decide which treatment to give you. BRAF positive patients can be offered targeted treatment or immunotherapy - BRAF negative are only offered immunotherapy as targeted treatment doesn't work on the BRAF negative gene. 

The CT scan should be done before your oncology appointment so that they can see if there is any other possible spread. They don't usually do a full body scan - the area they scan is dependant on the area where the primary and the affected node(s) are. I can only guess that your scan will cover your torso because your mole was on your arm and I'm assuming the node was under your arm? 

I know it's all very scary but it sounds like your consultant is getting a treatment plan into place quickly. Targeted and immunotherapy are showing great results so you are in good hands. Remember, you can send me a message any time xx

Hi there, I've just joined the forum this evening as a melanoma patient myself. 

I know that the waiting can be the worst time. I had a primary melanoma on my chest which was staged quite early at the time (2012) although six years later, they discovered local spread my right underarm area.

They may well want to do a full CT scan, just to rule out that there is no spread anywhere else within the body. I know this can sound scary but it's best to be sure in ruling out any spread and I wish you the best in the results. 

Since melanoma has been found in one of your sentinel nodes, your consultant may recommend what's referred to as a complete lymph node clearance, which removes as many lymph nodes in that area as possible. This can be useful in reducing the risk of a recurrence in the future.

As Angie mentioned, tests in the tissue will be carried out in the meantime to determine if your melamona is BRAF positive or not, which may influence your treatment. 

Please do keep us updated if you can and remember there are many more effective treatments for melanoma now than there used to be. 

If there's anything else you are wondering about then I'd be happy to try and help. 

Kieron 

Hi Angie and Kieron 

Thank you both for your replies. I feel a bit better after reading your messages, I'm absolutely petrified and probably overthinking everything. I'm going to phone the surgeon tomorrow as he's said he'll be happy to talk to me in the mean time so I'm hoping I'll be a bit calmer after that too. 
I'll certainly keep you both posted once I know what's going on. 
thank you again, 

Tash xx

Hi Tash, 

Yes, do contact your surgeon or anyone else where it could help you, that's part of their role to try and put you more at ease. 

There will be many effective things they may try and you will be in the best hands. 

Yes please do keep posted. We're all on journey's here :)

X

Hi Both, 

Just wanted to give a quick update. I'm due to see Onocology on 2nd November and a CT scan has been arranged for next week. I've had the melanoma nurse on the phone today and he's told me that they tested the tumour and I'm BRAF positive so they're likely to suggest targeted therapy first but all depends on the CT scan results.

Tash x

That's good to hear Tash. It sounds like they have got a good treatment plan in place for you and, being BRAF +, means you also have immunotherapy in your arsenal for later! Good luck xx

Hi Tash, thanks for the reply

Immunotherapy is usually left for the latest stages or if the melanoma becomes metastatic, although more recently it does get considered for adjuvant stage 3 treatment. 

I would say going to the targeted therapy at this pont, especially if there is no visible disease at the moment, is a good call as you will have the immuno for the future if its ever needed (hopefully not). 

If your targeted therapy consists of dabrafenib and trametenib, often just called dab-tram, then this is the same as I was on when I was at stage 3c. I didn't find them to cause any ill effects and continued working full time whilst taking them. You just have to work your meals around taking them. So hopefully you will be fine too. Compared to immunotherapy, they don't tend to cause as potent side effects. 

I hope it works out well for you