Invasive Nodular Melanoma

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I noticed a large lesion on my back in late June and went to my GP who immediately did a rapid referral to my local hospital dermatology department. I had my first appointment there a couple of weeks later and was told I would need to have it removed, I did mention that I was suffering back and armpit pain at this time. Initially I was told there could be an 6-8 week wait to have it removed but I was fortunate to have it taken out after only a two week wait. Just under 3 weeks later I saw on my Patient Portal that a MDT report had been sent to my GP it said I had an invasive Nodular Melanoma with a Breslow thickness of 5, Mitatonic 5mm2 and it was T4a.  3 days later I had a phone call from the Dermatology department asking if I would accept a call from my dermatologist which I said was OK he called an hour later, he said he was calling as if I would have had a face to face it would have been sometime before I could have one as the department was very busy!
, I couldn’t hear clearly what he was saying but I believe he told me my melanoma was malignant and that I would need a CT and then more skin removed from the surrounding area of my scar which could be done at the hospital or a WLE and lymph gland tests under general anaesthetic at a larger hospital in my area. He said it was for me to decide and that he would send me leaflets together with an email address if I had any questions and that I would need to come back to dermatology for the next 5 years.

3 days later I’ve received nothing in the post and no CT appointment date.

i did find an email address for the Dermatology department on my MDT and messaged them yesterday explaining I was very anxious and needed more information about my diagnosis but perhaps I’d read the MDT wrong and it was not as serious as I thought and if so apologised for bothering them.

am I being over anxious?  Is this a normal way any other people have been diagnosed? I’m feeling rather alone in all this and it is affecting my sleep and daily life ( I can’t concentrate on much for long)

thanks for reading it’s helped to share x

  • Hi  Wakeskater5c9e6a,

    Reading your question, I don’t think you’re overreacting at all. I would feel as anxious as you do in your situation. The waiting game is the worst part of this .

    The first thing I can suggest is, to try ringing the Dermatologist’s secretary to see whether she can chase up that information he promised to send out to you.  In the meantime, try looking at really informative, reliable websites like Melanoma  Focus, where the SLNB procedure is explained clearly.  I’m sure that Macmillan have digital copies of their leaflets too

    Also , you could ask the hospital if they have a designated Macmillan nurse/specialist cancer care nurse attached to the dermatology department.  If you have this, it will always be your first port of call. I was referred to one on the day of my diagnosis and she has been absolutely amazing. She has access to my notes so she can answer questions about my diagnosis and treatment. I had a WLE and SLNB for a melanoma in my upper arm in December and she was so helpful in so many ways.

    Hopefully somebody else with the same diagnosis as you will join this thread and share their experience. In the meantime, I really hope that you get some information  about the choices you are facing.

  • Thank you for reply I will try calling my dermatologist secretary later, the reason I sent the email yesterday was when I tried to chase up my excision results I called his secretary three times and left messages as they did not answer the phone. I know that there are CNS nurses in the department as they were listed on my MDT. I would have thought maybe they might have got in touch themselves by now.

  • I was advised to contact the Macmillan nurses myself.  I guess not everyone needs or wants to talk to them.  Maybe try a chat with them too today?  They can chase up info a lot faster than we can!

  • If I can find a direct phone number for them I will x

  • Quick update I’ve got a CT date for Thursday 11th which they are doing with contrast for my head, neck, chest , abdomen, etc. my consultant called me this evening after 7pm as he’d seen my email and explained a bit more to me so I do feel happier.

  • Good for him.  I’m so glad you have a plan in place.

    All the best for the 11th.x