New diagnosis

Hi Essexgirl200 and a very warm welcome to the group

I'm sorry to read that you've recently been diagnosed with melanoma and I remember how fearful I felt when first told. 

I too had a WLE and sentinel lymph node biopsy (SLNB) and was worried that the wait was about 10 weeks. I spoke to my skin cancer nurse specialist (SCNS) and she was able to partly put my mind at rest by telling me that the excision biopsy had got clear margins, ie no cancer cells up to the edge and by pointing out that the tumour had been removed and that the WLE was essentially a "mopping up exercise" to just be absolutely certain that no cells had been left behind.

I see that you've said that the SCNS "never answer" the phone and I would agree with that. Over the years I've always had to leave a message on the answerphone but they do then ring me back. Most of the day they are either with the consultants or patients but have a time set aside to return phone calls. I'm sure if you persist you'll be able to speak to yours for some reassurance.

When you feel ready, 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.

((hugs))

Hi to a fellow Essex girl. I had a mole removed last October and waited 6 weeks for results. I was stage 1b. Told I would need WLE and SLNB which I had in February this year, about a 12 week wait, 4 lymph nodes removed. Then waited another 6 weeks for results but thankfully all clear. I have found the easiest and most efficient way of contacting the skin cancer nurses is by email, pretty much get an immediate response but like you have found that no one answers the phone but like every other department they are seriously understaffed. 
Totally understand your mental stress, just try to keep yourself busy and use this forum to off load when you need to. MacMillan also offer a counselling service, I got a referral to them by emailing the skin cancer nurse. I know the waiting is the hardest part but happy for you to talk to me if it helps. Take care x

Thank you so much for taking the time to respond. I am finding this bit hard. I'm am action person and just want to get going. I'm told I'm stage 2 subject to PET scan. Do you knew what type you had.? This Spindle Cell looks tricky according to Dr Google and I'm keen to see the oncologist to get clearer info. Are you having immunotherapy as I've been told I will have this even if PET and lymph nodes are clear

Hi again Essexgirl200 

I didn't have spindle cell melanoma but amelanotic melanoma, which is another rare type. Like yours, it wasn't a mole but looked like a cluster of small red dots.

I've had a look in the group to see who else has had your type of melanoma and found Miranda2 and PaulF23 have posted about it. I've 'tagged' them and hopefully they'll pop on and share their experiences with you.

If you want to connect with more people who have this type of melanoma you could start a new post, with the title of spindle cell melanoma, and ask if anyone else has been diagnosed with this type. There could be more than the two people I've tagged but they haven't posted yet.

As Potte has mentioned, you can arrange counselling through Macmillan. They are currently offering up to 4 free counselling sessions through Bupa for anyone who is struggling emotionally because they are living with cancer. Clicking on the link I've created will give you more information about it.

I hope you don't have too long to wait to find out when you'll be having your WLE and SLNB and, in the meantime, if you want to know anything about those procedures I'm happy to share.

Anne

Hello Essexgirl200 ,

I am very sorry to hear about your recent diagnosis.

In 2017 I was diagnosed with amelanotic desmoplastic melanoma. Amelanotic describes a lesion without pigment. Desmoplastic describes the structure of the cells within the tumour when it was biopsied. Desmoplastic means that there were spindle cell formations in a fibrous matrix. So my case was not exactly the same as yours but there are similarities.

My story: On April 6th 2017 I had an initial excision to remove an ulcerated lesion on my cheek, which was thought to be a basal cell carcinoma at the time. I never dreamt it would turn out to be melanoma but it was. On May 24th I had a WLE and an SLNB followed by a skin graft. The SLNB came back clear but there were melanoma cells on the margin of the excised skin. On August 14th I had a third surgery, which this time had the required clear margins, and a second skin graft.

Since then I have had regular follow ups with a dermatologist and there is no sign of a recurrence. My understanding from discussions with her is that the real challenge with the rare forms of melanoma is that they are often mistaken for other types of benign skin lesions and diagnosis is delayed. GPs may practice for years yet never see a single case.

You are fortunate that your melanoma has been discovered at this point as the "tricky" part of spindle cell melanoma lies in recognising it. The primary treatment is surgery. If you have a clear SLNB and clear margins there will likely be no further treatment but just follow ups with the dermatologist for a few years.

As for the waiting, sadly it is part of having cancer and probably one of the hardest things to deal with. For me the hard things were thinking of my own mortality, the guilt I felt in bringing my cancer story into the family yet again ( I had breast cancer in 2011) and the fear and "what ifs" going round in my head each time I was waiting for results.

 latchbrook has written several times on how she has coped in the past and I agree wholeheartedly with what she writes. Be kind to yourself, take each day a step at a time and try not to get carried away with dark thoughts. They are only thoughts not facts.

Let us know how things go for you. I hope you have a treatment plan soon. Thinking of you. Best wishes from

Miranda

Thank you Miranda for taking the time time to respond with such a helpful message. You mention something at the root of my fears. I actually had this 'thing' which was not a mole but a small pink cyst removed the first time over 2 years ago and it came back benign.. But was it?! It came back under the scar and I had it removed again in October. You seem to have been seen quickly after diagnosis and I'm told things will move quickly now but they don't seem to be although it's only a week. I'm told it's stage 2 but I have no real idea what that means. It's the waiting, as you know, thats so hard and yes the fear of this being fatal, although I know there's much more chance it won't be. I hope you continue to be well

Hi again Essexgirl200 ,

Your message reminded me that I had a biopsy of my lesion done a full year before my first surgery. There was nothing of concern in the biopsy. My dermatologist said that she'd prefer to have the lesion removed even though there seemed to be no medical justification to remove it other than the fact that it seemed to partially clear up at times but return rather than ever healing. It was the fact that it never healed that worried her. We'd wait for a few months, see how it evolved and then book an excision. Six months later it was pretty much the same but she wanted to go ahead with an excision all the same as a precaution. It wasn't urgent so I was not fast tracked in any way and it was April 2017, a full year after the biopsy before I actually had the surgery.

And a year after that biopsy in April 2016 that came back clear of any skin cancer I was diagnosed with a rare form of melanoma! 

It was stage 2 for me too. As the SNLB was clear I did not have a PET scan, but that depends largely on your doctor' approach. The diagnosis follow up may have changed since 2017 also. PET scans may be more routine now.

You can find out more about the stages of melanoma here. The second link shows a diagram of the skin which is useful in understanding how the depth of the tumour indicates its potential to spread:

https://www.macmillan.org.uk/cancer-information-and-support/melanoma/staging-of-melanoma

https://www.cancerresearchuk.org/about-cancer/melanoma/stages-types/tnm-staging

I hope this helps. The main thing for now is that your melanoma has been diagnosed. Like mine it could so easily have escaped detection. Where is yours located by the way?

Take care

Miranda

Hi Miranda, you are so kind. It's on my left arm. You can see it here about 3 months before I had it removed this time.. Looks so innocent! My SCN has told me today to expect a PET scan within a week... Here's hoping

The gorgeous little boy is my grandson..