Where to start? Had melanoma, new tumour and lumps investigated

Hi Aky001 and a very warm welcome to the group.

I don't have the experience to answer your questions but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date 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.

Thanks

ive updated as you suggested

Hi Aky001 this is the first time I've posted here but the similarity with your situation has motivated me to reply.

In 2016 I was diagnosed with melanoma stage 1b after a mole on my upper arm was removed.

I had my 5 years of skin checks and didn't think too much more about it. I kept up my own checks and in January 2024 found what I suspected to be a swollen lymph node in my armpit. I monitored it for a couple of weeks before going to the doctor's where I was told it was a cyst and not to worry about it. 

To cut a long, stressful story short I went back again and after various appointments and delays it was finally confirmed as melanoma on 25th April. (I will write up my story elsewhere as I have found it really reassuring reading other people's stories). 

Like you, fortunately the full body scan confirmed no spread beyond the lymph nodes. 

At the end of June I had all my lymph nodes in my armpit removed. I was only in hospital for a couple of days although I had a drain in for 3 weeks. Everything healed well. I do suffer from nerve pain in my arm and my side now though. 

I also thought I would go on immunotherapy but after the surgery it was discovered that I have the Braf gene which means targeted therapy is more suitable. I started this in September. It has been a bit of a rollercoaster with side effects but I'm grateful for the adjuvant treatment. This treatment is taken orally twice a day and lasts for a year. 

I now get skin checks and CT scans every 3 months. 

I am also 51 and otherwise in good health! 

Both immunotherapy and targeted therapy have great outcomes and I wish you all the best. 

Hi Dunes

thanks so much for responding.

as you say both our stories have close similarities.

If you are willing I do have a raft of questions that are swirling around my head?

thanks and I wish you well

Paul

Hi Paul, I am more than happy to answer any questions that I can. It's such a stressful time waiting on biopsy results and wondering what's next. 

In the meantime, take comfort in the fact that the full body scan showed no further spread and if it is melanoma, treatment has moved on greatly. 

Best wishes 

Elaine 

Hi Elaine

thanks again

i guess I need to wait for tye results first and then go from there.

i don’t really understand the BRAF gene and what impact this has on treatment

will I be consulted over whether to remove the lymph nodes in my groin and is this recommended.

what side effects can occur from removal

wihat treatment afterwards and side effects.

Thanks Paul 

Yes, there's no point researching too much until you know what your situation is. 

I have found this Macmillan site to be hugely helpful with all aspects of melanoma, staging, treatments, side effects etc etc. 

It seems to be that if they detect the Braf gene mutation (which occurs in nearly 50% of melanoma cases) then you are offered targeted therapy first. If no Braf gene then it is immunotherapy. 

With regards to lymph node removal I was pretty much told that this was the next step but as cancer had been detected I was delighted to get them out! I don't know what possible side effects there are when lymph nodes are removed from the groin (mine were in my armpit). If your biopsy confirms cancer then I'm sure your consultant will discuss all this. They'll also tell you what treatment options are available to you and their recommendations. 

I hope you manage to relax while you're waiting on the results. I appreciate it's a stressful time and nothing seems to happen quickly enough! 

I'm happy to answer any questions I can, have a good weekend. 

Thank you