Melanoma

[Downtime]

I haven’t been around for a while as I’ve had some pretty devastating news. I have been diagnosed with a stage 3 melanoma. I haven’t had it too long but I did previously have it looked at by both my GP and the dermatology dept at the hospital who both said it was just a cyst. I have to have a further op with a wide excision and skin graft to make sure it doesn’t recur. Of course it might already have spread and the future is uncertain. These days though the treatments for melanoma have vastly improved and survival times have been increased.

I dont want to frighten everyone but the drugs we take do make these things twice as likely. If you are low risk, double it and it’s still a small risk, but in someone prone to skin lesions, sun damage etc it can make a difference. Of course the benefits of Mxt for instance outweighs the skin risks, but just be aware.

Also be insistent on a test if the growth, mole etc worries you but doesn’t always conform to the usual melanomas we are warned about. Mine was quite different, like a pale round cyst which darkened and got bigger.

Be vigilant,

Liz x

[rab1874]

Hope everything goes well Downtime as you say we need to be very vigilant especially with these dangerous drugs, take care xxx

[janeywaney63]

Sorry to hear about the melanoma Liz, hope the treatment works well for you. Thank you for the reminder though. I must get some lesions checked. Had a basal cell carcinoma on my face some years ago and had been seeing the dermatologist for check ups but since moving to a different area 5 years ago I’ve not seen one and any doctor I’ve asked to look at a suspicious spot of skin haven’t paid much attention. Now when I see a clinician I forget to mention it as there’s always more problems to discuss. Jane

[sylvi]

Oh Liz that is shattering news for you to digest darling. I hope they clear it up and it doesn't come back. Hugs.xxxx

[Dobcross1]

Firstly, hope all goes well for you Downtime and I'm sorry you are going through this. Secondly, thank you so much for this information - I'm on MXT and honestly wasn't even aware of this - I'm ashamed to say I've even carried on using a sunbed occasionally since diagnosis and treatment, viewing it as a treat and a relaxation tool to make me feel and look better - how stupid that sounds now on reading your post. I'm sure there are others who will benefit from your sharing this information too. Thank you again and very best wishes.

[Nessa28]

Thinking of you 🤗🌷

[helixhelix]

You must so angry that it wasn’t picked up when you first asked! I hope they now pull out all the stops to give you the best possible treatment, and that it is completely successful. As you said the treatments have improved hugely. Good luck to you.

Because I am on biologics my rheumatologist wants me to be checked by a dermatologist once a year, which is a good precaution even tho’ it is only a small increased risk.

[Caza]

Thinking of you & hope the op goes well & is a success.

I had an open type wound on my back earlier on this yr which I thought was eczema. I’d always checked for moles changing colour but this was totally different. Anyway it stared to bleed quite a bit so I went to my gp who I thought would give me stronger cream but no straight to the hospital one week later it was removed. They removed quite a bit it was cancerous but all’s well. They did say I was now high risk of it recurring elsewhere & to keep completely covered when in the sun 😩.

The only med I’ve ever taken is Hydroxy & I’m not sure that that puts you at higher risk.

[Fruitandnutcase]

Awful news to get. I hope all goes well for you. X

[Barbs51]

Hoping everything goes well ❣️

[JFlay]

Wishing you all the best 🤞

[Pulfs]

Wishing you all the best for a good outlook ⚘

[oldtimer]

I wish the dermatology department was as concerned about our extra risk as you have advised. I have had to really push for diagnosis and treatment of lesions that they didn't know what they were, so 'let's wait and see'.

I know that they are overwhelmed with patients but it should not be up to the patient to have to insist on a diagnosis, when the patient is aware of the extra risk.

[Downtime in reply to oldtimer]

You’re right Oldtimer the dermatology depts are overwhelmed and understaffed. The waiting times are awful. I had my thing removed privately as I was so worried about it. Saw the consultant and he removed it the next day. Now under hospital care. They’re lovely but it’s frustrating. They only open 4 days a week now.

Absolutely it shouldn’t be up to patient to insist on a diagnosis but I fear you have to . I didn’t at the time which might have cost me my life.

[Kerensa21]

So sorry to hear that especially as you’d already flagged it up: that’s awful. Thank you for the reminder to be vigilant, you have to be so proactive with this disease, its not true 🙄. Incredibly good luck with your treatment 🤞🤞xx

[Downtime]

Thanks all for your good wishes. Such a kind bunch 🤞

[charisma]

Hi Liz, that is a big concern you are dealing with at present. I was already aware of cancer risks, especially on biologic injections or infusions.

I hope they get it all out and further tests might show no spread. But if not, don’t feel alone. So many here can support and identify, as you know.

Best of luck! X

[cathie]

I hope your treatment works, and thank you for sharing your experience with others.

[hatshepsut]

So sorry to hear your news, and so angry that you weren't taken seriously when you first noticed it. I think we should all be issued with a gladiators sword and helmet on diagnosis!!!

Seriously, though, good luck with the treatment.....hope it's successful. So good to share such a warning, thankyou.

[Gigi71]

Oh dear I do feel for you Liz, Dermatology is very hit and miss and shouldn’t be. I was advised to change from Azathoprine 3 years ago due to small cancers and pre cancers over to Mtx. Also Humira, my choice not to change as it worked so well for my RD. Dermatology agreed to keep me monitored, but due to demands for their services, discharged me back to my GP this summer. My GP sent me for a two week fast track for a lump on my knee last month, It was luckily ok and zapped off together with another low grade cancer on my chest. The consultant wants me back on their books as recognises RD meds makes us more prone. We have to be vigilant and thank you for sharing this with us. I wish you the very best. Xx

[Downtime]

Thanks Gigi x

[carbeck]

Hi sorry to hear about your melanoma. I too had a melignant melanoma . That was over 20 years ago and I'm still here lol. The worrying thing is I had it for several years and when it started to change I had it checked by my GP who said it was nothing to worry about, after several people telling me it was more noticeable and I should get it checked again I asked to be referred to Dermaatology and they assured me it's nothing to worry about some time later when I was in the process of moving to another area I went to register with my new GP and she referred me to the local hospital and the Consultant told me straight away he didn't like the look of it after removal it turned out to be malignant and I had to have more surgery. So glad I moved house. I now have another suspicious looking mole hitch I have had checked twice at the hospital and same old story nothing to worry about This is in the same hospital I went to the first time

[Downtime]

It’s worrying isn’t it Carbeck. We have to be so pushy. If you are still unsure about it maybe explain what happened previously and they will at least do a biopsy to put your mind at rest.

[wowzerbowzer]

Sorry to hear this and hope all of the cancer is removed and no spreading is found.