Melanoma what next?

[FangedFrisbee]

Noticed a weird mole next to a freckle in September, I will admit I thought it was a melanoma because it was right next to the freckle but it was 2 separate things.

Ignored it for a bit, then it my shoulder got unbelievably itchy one night and I needed to put some moisturiser on it, I took a photo in case it was a mozzy bite/ a spot. And noticed it was the mole that I'd noticed in September. It had grown so much and changed colour.

It was so big, I was so shocked. I went to the dr in November and he told me I was being over cautious until I showed the first photo. It really is so different, got referred to dermatology and had it chopped off. I got the call today it's melanoma and need a wide local excision to remove more. I also had 3 more on my leg removed and they were all melanoma too! I hadn't even noticed them!

I need some scans apparently, has anyone had this?

If I hadn't taken a photo in September, no one wouldve referred me based on 'it looks weird'

Take photos and have a record of any that look 'weird'

Also if you're ginger like I am who's parents routinely forgot to put more cream on me in 90s! Then, nhs photos of moles are so different to what mine looked like. So bare that in mind.

Please get any dodgy moles looked at.

You have been through so much. I hope you are dealing with it ok and staying positive. Hopefully this will pass quickly and you will have better times ahead. I have been following your story and I am thinking of you and sending my best wishes

Sorry to hear that @FangedFrisbee I hope
You recover soon!
Have you been offered immunotherapy?

@Bearpawk yes I have. I've heard it's amazing!

Can I join please? I saw the gp in Sept got a dodgy mole that has massively spread on my scalp, waited 6 months for the biopsy and just been recalled for appt to discuss results on Tuesday, was texted the appt star and was told they suspected melanoma at the biopsy so not a complete shock.

I’ve got a few other moles that need looked at on my head too, and obviously will have to always protect my scalp in the sun.

Anyone else. Did you have the WLE at your results appt or did they book you back in? And is it worth being DH being there or will they just say ‘yes, didn’ dodgy, come back x for a bigger removal’?

@Matchingcollarandcuffs of course. There's another thread in health I can tag you in? They're all lovely it's for people who have all types of cancer.

To answer your question take DH because they will talk about cancer because if it is melanoma it's a cancer so they will say the C word and your brain can switch off after that.

WLE will be done on a different day because they like to do a sentinel lymph node biopsy which is too painful to do under local, you'll need a lymph node scan before hand to find out which side your mole drains to, it could be both if it's on your head. At this appointment (the day before the surgery) they will inject the scar with a radioactive tracer to see which lymph node flags it up, then on the day you'll have a blue dye injected into the scar so don't be concerned if you have a blue head or face for a bit, also your wee goes green afterwards so that's weird!

At the appointment they will tell you the breslow score of the melanoma, ie the depth, and rate of mitosis also what type of melanoma. The breslow score is what they will stage you on. If it's 1A you might not even need a sentinel lymph node biopsy at all. If it's deep enough to be stage 3 then you might be offered immunotherapy immediately.

I've been offered immunotherapy because it was still there after the WLE and then I found a new one on the other side of my neck, they're treating it as a second primary but taking no chances.

Cancer Support thread 86 - Stay Positive www.mumsnet.com/Talk/general_health/4767178-cancer-support-thread-86-stay-positive this is it if you want to join

Also melanomates on Facebook is such a supportive group

Wow, that’s amazing, thank you so much.

how are you finding the immunotherapy? A friend is about to start it (plus chemo and a trial drug) for secondary cancer.

I have read that head and necks are trickier for melanomas due to the increased blood supply, but thanks for your heads up about surgery etc, that’s definitely more than I was expecting.

Have they warned you about many side effects from the immunotherapy?

No worries! I hope that helped you x

I haven't started it yet because I need another op next week. I know that immunotherapy can give you very bad colitis but I think it's a risk I'm willing to take to stop it spreading further.

Just read your thread. My father had a mole removed last year. It was a melanoma but all as ok, thank fully. I wish you all the luck with your treatment. Please keep us updated with how you're getting on.

Just a quick message as your thread caught my eye. I just wanted to say that I was first diagnosed with melanoma in 2012, Stage 3 - had a groin dissection and lots of lymph nodes removed. Thought that was it, but got a recurrence in 2015. My wonderful oncologist signed of on immunotherapy- Ipilimumab. I tolerated it well, mild colitis and i was exhausted in the period around the last dose, but ut was so worth it. This happened in summer 2015 and I've been cancer free since then. Sometimes looking at survival rates and life expectancy can be scary, but the immunotherapy did the job for me. Keep strong & focused on the best outcomes, you've got this x

I'm sorry to hear about what you're going through, cant imagine the worry.

I'm a fellow ginger with loads of freckles, and my dad has had melonoma a few times. I dont know more than yhat but i do know he used to sunbathe ALOT when he was younger.

I have had one suspicious looking mole removed that turned out to be nothing.

I was in the sun without sunscreen a fair bit as a child, and got burnt loads, especially on my back. I cannot see my back so it's a worry whats happening there.

Have you got any advice for me? Is an annual mole check a good idea?

Again I'm so sorry and I wish you all the best with your op next week.

Yes you need to do mole mapping and you need to be very vigilant. With your dads history as well as being ginger you're at increased risk of developing melanoma. It costs about £200 for mole mapping

So glad to hear you're doing ok! I'm nervous about immunotherapy but I know it's going to be the best option x

My dad had one of the ulcer type melanoma removed, it was the size of a 1p piece but after margins the hole was the size of a £2 coin. I had a mole removed that was suspicious but after testing turned out to be clear. The op took 15 minutes & I had 3 stitches, it was on my spine between my shoulders, I was surprised how deep the plug they removed was, maybe 0.5"

I had my surgery yesterday I did it. I went to the hospital I used to work at for 5 years and got naked in front of my ex colleagues! Who all came in to see me as I was going to sleep in the anesthetic room. Just what you want when you’re already 💩ing yourself…. I woke up about 4 hours later, and they kept me in overnight because my oxygen was very low, my thyroid tried to kill me after surgery by going into a storm so my hr was 175 resting and I woke up with defib pads on.

Also joy of joys, I started my period 1 week early on the table, and my colleagues must have noticed because I woke up with an incontinence pad on 👍👍 fucking winning!!

I’ve got 18 stitches on my left shoulder, had 40 lymph nodes removed from my left armpit (one showed signs of metastatic spread about 2 weeks ago because it swelled up and I had it biopsied) my arm is blue, my wee was green! I’ve got 20 stitches in my left armpit which hurts more than than my shoulder and I’ve got 11 stitches in my neck on the right hand side because he wanted to stop me having more surgery but I might need more anyway.

Oh and I asked my husband to pack an emergency bag because I didn’t know I was staying in and said I needed underwear and pjs and he gave me a bag of 25 pairs of knickers and 1 sock! 🥰😂

You can laugh it’s ok! I have been! Hopefully find out soon if it’s Braf+ or not and what therapy I’m on in the next couple of weeks

Wow that sounds tough.

Just read through your thread and think it's great you've shared your story and the photos - public service announcement.

Hope everything heals ok and you feel a bit better quickly from this op.

All the best to you. Hope you can sleep ok. Glad you can see the funny side of some things.

Goodness me, you poor thing. Glad they're doing such belt and braces removal though, but owee sounds sore.

As to the 10,000 pants and all you need is a sock (sorry Alanis) that's the most panicked packing I've heard 😂

Sorry about the thyroid though, that must have been scary for all concerned.

Hope you're not too sore today

This was the second primary melanoma they removed this week. Please get anything dodgy checked out

Wow what a ride @FangedFrisbee I'm glad you're recovering ok now.
Sounds like they did a full lymph clearance from your armpit ?
I'm having a fortnight of various scans before my first proper oncology appt to discuss immuno (lymph spread too)
Have you had full body Ct/ PET/ MRI yet?

Ps if you do have immunotherapy, look into the link between gut microbiome and immuno succeess. Might be worth trying symprove or similar in preparation.

Thank you for this thread OP, and I hope you’re recovering as well as can be expected.

You’ve kicked my arse into gear. I have a weird looking mole above my eyebrow that has got bigger in recent months. My dad died of skin cancer so I monitor my moles very carefully, and this one does need checking out. I’m scared, but I’m going to make an appointment on Monday.

Wishing you all the best with your treatment and recovery.

Thanks for updating, wishing you a speedy recovery and good outcome.

@Bearpawk yeah they did a clearance, because I had a fine needle biopsy after having a swollen lymph node and it had microscopic spread.

Thank you for the gut biome info I'll look that up because immunotherapy is on the cards I think.

I hope my story helps someone

You are helping me, I got stage 1 melanoma diagnosis tuesday and am waiting for the WLE as has to be done by Max fax due to where it is. Also under 2ww for a couple off potential other ones to be biopsied. Appt came for 3 months time, not sure if it's the 3 month follow up or there is a long wait for biopsies ATM.

How are you recovering?