Hello. I was diagnosed last week with melanoma t1b. Unfortunately, the first communication I’d had from a doctor since before the mole was photographed was when I received the diagnosis: 6 weeks after the excision. The diagnosis was delivered to me by a stand in dermatologist. I have not met my consultant. I never received the letter explaining why the mole needed to be taken off and nor did my GP. So, despite the fact that a great chunk was taken out of my back, I was (perhaps usefully) ignorant of the possibility of the mole being a melanoma until I was told it was on Thursday. The mole was excised 6 weeks ago and I have clear margins. So now I’m awaiting a wider local excision and possibly a lymph node biopsy, TBC.
Since my diagnosis, I’ve been very anxious. I’ve been unable to get hold of the Clinical Nurse Specialist, who handed me her card with assurance that she’d be on hand when I wanted to talk.
I am wondering if anyone has had the lymph node biopsy and whether it will be necessary for me at my stage of cancer. The melanoma was 0.8mm, so just on the cusp of level 1a and 1b. I feel unbelievably lucky to have caught it so early, but also very anxious about the possibility of it having spread. Every day that I don’t hear back from the hospital feels like an age.
It is hard having confidence in the doctors / the system when it seems so utterly broken. I can’t even get through to PALS and nobody responds to any of my messages. My doctor, who has no notes from dermatology, is also completely unable to support me. Madness! Any advice gratefully received.
Hi and a very warm welcome to the online community which I hope you'll find is an informative and supportive place.
As the community is divided up into different support groups I'm going to recommend that you join me over in the melanoma group which is a great place to ask questions, share experiences and get support.
To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
You will find that a lot of us have had the sentinel lymph node biopsy (SLNB) that you mention but that also some people have chosen not to have it as it's a test to see if the melanoma has spread to your lymph nodes rather than treatment. You might find this decision aid helpful in coming to a decision.
I decided to go ahead and have it as I didn't want to worry in the future if the melanoma returned 'what if I'd had the SLNB done and cancer cells had been found, I would have been able to start treatment sooner'.
I'm happy to chat any time about the operations and if you want to read my story just click on my username.
It would be great if you could pop 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.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
