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  1. Hi, just joined the group. Struggling a bit with diagnosis. Had WLE and SLNB on 25th March. Waited a while for results appointment which was on the 19th May where I found out melanoma had spread to lymph node. Was a shock to find melanoma now Stage 3b. They're doing some tests on melanoma for BRAF gene to see which treatment I will be able to have. I had a CT scan 1 week ago. I don't know how long results will take but the waiting is awful I can't cope at all. 
  • Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I was diagnosed with melanoma 5 years ago and have just been diagnosed with breast cancer so I've certainly done my fair share of waiting for results. I agree that the waiting is awful but find that if I immerse myself doing things that I enjoy it helps pass the time and also means I spend less time worrying. Some people find mindfulness really helpful and if you'd like to know more about that just click on the link I've created. Macmillan also have some useful information on managing anxiety here.

    If you're finding that your anxiety is impacting on your day-to-day life then do have a word with your GP who should be able to help you. You might also find that if you speak to your SCNS to find out when you should get the results back, this will also help you to focus.

    Sending a big hug

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  • Hi. Sounds very much like my diagnosis. Waiting is terrible. I’ve had 6 lots of immunotherapy to date. Another 3 to go. I’ve not had many side effects just rashes and tiredness. Once you know what treatment you’re going to get hopefully you’ll feel much better about it all. I just try to keep busy and not dwell on everything too much. Hope you hear very soon and you get on to the next step. Pots

  • Hi thank you for your replies. I spoke to a specialist nurse today and turns out I have an oncology appointment tomorrow.  So good job I called as not received the letter.   On a plus side I've only got one night to panic about it. Although I'm feeling pretty anxious and scared about going 

  • Wow!  All the best, Jac14 x

  • Good luck tomorrow. If at all possible take someone with you to your appointment. It’s sometimes not easy to take in all the information you’ve being given. If you’re going on your own take a pen and notebook with you. Fingers crossed it goes well and try to get a good nights sleep.

  • All the best for tomorrow

    As Pots has suggested do take a notebook and pen with you and write down any questions you can think of between now and then as it's hard to remember what you want to ask when you're there.

    Another thing you can do, with the oncologist's permission, is to record the conversation on your phone so that you can play it back later.

    x

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  • Thank you for your messages. My CT results showed a swelling in groin, which I had noticed but wasn't sure if it was from SNLB. They took a needle biopsy which I'll get results for next Friday. Said it could be a seroma from the surgery but if it shows up melanoma I'll need more lymph nodes removing. I'm so worried about side effects and lymohoedema.

    Also they're still waiting on the braf tests, they had to request my original biopsy from a different hospital as not enough found in my lymph node when I had slnb. It just feels like such a long wait. My doctor has prescribed medication to help me sleep, which does work. I

  • I'm sorry to read that you're still waiting on the results of tests and I know what a worrying time this can be.

    I do understand the worry about side effects, as I'm about to start chemotherapy for breast cancer, so I'll be keeping everything crossed for both of us. The thing to remember is that although they have to tell us about all the side effects it doesn't mean that we'll get any of them. That's what I'm hanging on to anyway.

    x

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  • Good morning everyone.  I am reading some heart rending reports on here and want to send sincere best of good wishes to you all.  Good luck and God bless.

    I am myself awaiting some results + have appt with respiratory next week.  Further to WLE on scalp, deeper problems were found, also behind ear (long-standing tenderness) & on a lung.  In my 76th yr with aggressive RA, COPD & spinal stenosis, I am chary of treatments.  But open to discussion, they are all extremely kind.

  • Thank you for your well wishes and I hope that everything goes well for you too.

    (((hugs)))

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