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I think that I might have stage IV melanoma.

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I think that I might have stage IV melanoma.

17 Mar 2023 13:25

Hi there. 

So, I [25F] have had this mole on my right inner thigh for forever... as far back since my teens, if I recall (as I vaguley remember trying to keep it hidden from the sun when on the school field with my skirt) but most definitely for the last three or four years. 

Anyway, I've never though much of it before, because it's so small (roughly 3mm wide and smaller than a pencil eraser) and to the naked eye it looks symmetical and round... except, I was examining my moles last month and I noticed that its extremely asymmetical, and far darker than all my other moles. It's also slightly raised as well. The problem is, I struggle to remember how long it has been like this. I know that it's been slightly raised for a few years, if not the entire time. But, I can't remember if it's always been this dark, or if this is something recent that's just occured. I feel like it's been brewing for the better part of half a decade or so. 

Anyway, I recently bought a USB microscope and a polarising lens, and decided to examine all my moles with it. And of course, my first point of call was this tiny one. But, what I've found has absolutely terrified me. It looks shades of brown and tan, with areas of irregular dark pigmentation. There are milky red globules, a homogenous structure and a few other things. I've compared my microscopic photograph to that of those I can find of dermoscopy on the internet as best as I can, and from all my findings, it seems to be none other than melanoma (because from the photos, there is literally nothing else it could be -- and I've done a lot of time researching every single look and type of skin cancer and mimics that I possibly can... almost 5-6 hours every evening.) I'm also certain that it no longer in-situ (due to the milky globules) and has become invasive. (I should stress that I am NOT a dermatologist.)

I'm off to get it checked by my GP on Monday, but I'm expecting him to refer me to a real in-person dermatologist, and from that I'm fully expecting a biopsy. I'm also expecting the Clark Level to be 5, and Breslow depth to come back at something roughly akin to 30mm/3cm -- based upon the estimated time that I have had this (from my memory -- roughly 5 or so years) multipled by the average time they grow per mm each month (0.5mm being the biggest). I've left it so long that I don't see how it couldn't have spread, or how it could be good news, knowing how fast melanoma grows. 

I've also been having weird sensations and pains in my muscle/skin/leg/groin around the same area where the suspicious mole is, and I'm terrified that it's spread to my bones/muscles/blood... though it's hard to tell whether it's from that, or due to the fact that I have been examining it for two to three hours every single day for the past week or so. I've also had this horrendous cough & cold for the last week, and now every time I cough it feels like I'm short of breath, so I'm now worry that the cough could be metastases on my lungs. I had a headache every day for a week last month, I've had severe anxiety for the last few, and 'brain fog so I feel like it's possible that it could be there too. I've been trying to examine my legs for odd lumps and bumps, but alas I don't feel anything out of the ordinary. (I should also note that I don't have any other symptoms other than this mole-type-thing.)

I've started thinking about funeral plans, and looking into life-prolonging immunotherapy, radiotherapy, alternative therapies, chemotherapy, and clinical trial options that will possibly work for me. I've started thinking about all the things I need to do – preparations from cleaning everything out, choosing what to donate and give to whom, thinking about the things I want to do for the very last time. 

I've always been terrified of getting cancer and have had severe health anxiety ever since my mum was diagnosed with 2x breast cancer when I was 10, and again when I was 20 years old (she's fine now), plus her bout with cervical cancer too. My nan had lung cancer, (and possibly skin which I only found out recently), and I'm screaming internally at myself that I haven't had it examined before now because I think I've basically just made my worse fear come true. I've recently had so much death anxiety after seeing something on TV that sent me into a panic attack, and I think that this is the universe's way of making me deal with it – by looking it directly in the face. (I should mention that physically I feel fine, but who knows what nasty things are currently lurking inside me.)

I'm just deeply sad knowing that it's most unlikely that I'll ever get to do the things that I want to –– have kids, get married, travel the world, and grow into old age gracefully with a husband and children like so many of my favourite people. I was looking forward to celebrating my 30th birthday and the entire decade really, which I feel like is becoming less of a possibility. I'm also heartbroken at the hurt that this is going to cause my parents, as I'm an only child (and quite a miracle really -- I was born 12 weeks early, weight 2lb 2oz.) and I just know that it's going to rip them into pieces... not to mention all of my other friends and family. I was just so looking forward to life and adventure, and I'm overwhelmed knowing that it's most likely going to be over soon. I know that we can't control what happens to us and that the grim reaper is inescapable for everybody, but I was just hoping that I would have at least another three or four decades before he caught up with me. (By which time I was hoping they would also have invented a miraculous new cancer treatment that targets the cells in the same way that the Covid jab did, and would give people decades worth of life!)

I just feel so stupid that I've let it go on this long, because I know how easily treatable it is the earlier you find it, and how the outcome could have been totally different if I'd only gone to the doctor back when I first noticed it properly a couple of years ago instead of letting it fester inside me because I was too busy doing everything. :( 

I apologise for bombarding you with this, but thank you for listening. I haven't anybody else to talk to about it, and I really appreciate it. Happy
 

 

I think that I might have stage IV melanoma.

17 Mar 2023 18:16 in response to ImAWriter22

Whoa, take a deep breath and put the brakes on before you dive headlong into mental exhaustion.

Dr Google has a lot to answer for and whilst you've been (probably unintentionally) looking for all the worst case signs you have totally ignored the positive points in your favour.

Firstly, you are young and this is a positive as a large percentage of melanoma is caused by UV damage over a number of years. You aren't old enough to have accumulated that amount of damage unless you've been an avid user of sun beds. In fact, you haven't mentioned if you've ever been sunburnt on your inner thigh, are a sunbather or sunbed user. If UV damage isn't the cause it's genetic and is usually because 3 or more close relatives have had melanoma (not other types of skin cancer).

Your mole is small and raised - neither of these are warning signs. Being darker than your other moles isn't unusual but asymmetry is a warning sign. It will all depend on whether your GP thinks there are 3 or more warning signs to refer you to dermatology. If your surgery has a GP that specialises in dermatology they will examine your mole with a dermascope which will tell them more.

Now, if you are referred, a biopsy necessary and it is melanoma, it will not be 30mm/3cm based on your calculations. Melanoma does not follow mathematical calculations - it's unpredictable and can grow slowly over a number of years or swiftly over a few months. I left my mole for a year before seeing a doctor yet it only grew to 0.7mm in that year. Since that time (1996) I've known hundreds of melanoma patients and none have had a melanoma deeper than 7mm, even after some had left getting checked out for a long time. Also, the depth means there is more opportunity for it to spread internally but not every deep melanoma does. Similarly, a small number of shallow melanomas do spread. Mine, at 0.7mm (Stage 1) spread to my lymph nodes (Stage 3). So there is no rhyme or reason to melanoma. Treatment is also moving apace so many more people now live with melanoma rather than die from it.

It's great that you are seeing your GP on Monday and hopefully you will know more then. Please remember that a mole can turn out to be benign, malignant or dysplastic (atypical) which means it's precancerous. 75% of patients referred to dermatology are given a clean bill of health so the odds are on your side, all things considered. So, take a breath, stop overthinking it and stop prodding and poking the area which probably accounts for the weird sensations you are experiencing. And stop referring to Dr Google which is fuelling your anxiety. Good luck on !Monday and please let us know how you get on.

Angie (Stage 3 melanoma patient since 2009)

I think that I might have stage IV melanoma.

17 Mar 2023 18:44 in response to ImAWriter22

Oh you poor thing. I'm so sorry to read your post.

I hope you don't mind me being blunt but it seems to me you have got yourself into a right pickle and now you are planning your own funeral before you even know for sure if there is anything to worry about. Don't get me wrong - I was exactly the same last year when I found a lump in my boob.

When I went to my GP she referred me to the breast clinic to be seen within two weeks. I also asked her to have a look at a mole on my arm that had been there for many years. I'd had it checked in 2012 and it didn't cause any concern then, but over the past few months, or maybe it had been a year or more, it started feeling different, more raised, but I'd put off having it seen to as I was too busy with work. So my GP referred me to a dermatologist, again to be seen within two weeks. While waiting for these two appointments, I developed aches, pains and twinges all over my body and I was convinced I had melanoma which had spread out of control and caused breast cancer and every other cancer imaginable. I was on Google all the time, reading about melanoma and how quickly it can develop and spread. Like you, I started thinking about my partner, my children and grandchildren, would I have time to sort out all my possessions, how would my work possibly cope without me, what kind of funeral would I want.... And I was cross with myself that I had put off getting the mole checked sooner.

Long story short: The dermatologist examined the mole and looked all over my body to check for any others that might look suspicious. He recommended removing the one on my arm and another one on my lower back that he thought were showing some early changes. I had them removed a couple of weeks later and they came back from the lab as negative for melanoma. I was diagnosed with breast cancer which of course was totally unrelated to the mole. My cancer has responded really well to chemo and is no longer detectable. 

Moral of the story: stop asking Dr Google for advice/information, don't diagnose yourself, and leave it to the professionals. I hope you'll put all your equipment away and get busy with anything you can find other than Googling about melanoma and checking your moles. You are not doing yourself any favours (sorry, I'm in my sixties and I'm putting my mummy hat on!) Maybe start sorting some of that "stuff" out so that when your Prince Charming comes along you can spend time with him and then with the beautiful little people you are going to make together. The best thing you can do when you feel the urge to get the kit out and start Googling again is to put your shoes on and go for a long walk.

I look forward to reading another post from you to say you have been down a dark rabbit hole for nothing (like I had) and at worst you'll have to have the evil looking moles removed and you won't be bothered by them anymore. 

Sending you a big hug (and I hope I haven't upset you) xxx

I think that I might have stage IV melanoma.

17 Mar 2023 18:49 in response to AngieT

Hi again Angie (you kindly replied to my question about Vitamin D a couple of weeks ago, thanks!)

You and I replied to ImAWriter22 at the same time and pretty much said the same thing, except you are obviously much more informed about melanoma. Hope you're doing well 

x

I think that I might have stage IV melanoma.

17 Mar 2023 19:05 in response to AngieT

Nope. I've never used a sunbed. I rarely ever sunbathe... I think I've done it maybe once or twice on holiday (on the rare occasion that that happens!), but I'm lathered up with sun cream all the way! I'm a spray-on tan girl through and through!!!

After what my mum has been through, I decided from a young age that I didn't want to put myself at more risk for something that is mostly preventable! (I don't smoke either because my nan had lung cancer!)  

I always wear sun cream, I spend most of the time in the shade on sunny days (or I tend to wear jeans or long trousers even though it's boiling outside, to protect this specific mole!). 

I've only been midly sunburnt once -- on my shoulders by accident, but NEVER on my inner thigh... that I know of.

I think I'm just terrified that I could be one of those people who has dodgy genes or something. I think with everything my family has been through, sometimes it feels that way.

I admit I haven't been the healthiest food wise, because I'm a super fussy eater, but I try and look after myself as best as I can elsewhere! 

If would just be an absolute ****** if it was something bad, because I just think about how I do everything I possibly can to protect myself, and yet other people my age use sunbeds all the time! 

Thank you both so much. I think my health anxiety is running away with me these days, and it loves to overthink everything and catastrophize. 

I will definitely let you know how I get on! 

I think that I might have stage IV melanoma.

17 Mar 2023 19:25 in response to Amy321

Hi Amy,

I'm doing good thank you. I hope you are too. It's good that you replied too so that ImAWriter can see your experience of the same worry. Stay well xx

I think that I might have stage IV melanoma.

17 Mar 2023 19:27 in response to ImAWriter22

It's good to hear you are sun safe and care for your health. That makes the odds even better for you. 

I think health anxiety can be debilitating so please let your GP know how this is affecting you xx

I think that I might have stage IV melanoma.

18 Mar 2023 20:24 in response to AngieT

Hi Angie. 

I know there are some good odds stacked against me, but I think my instinct is to look at the bad ones... perhaps it's because of everything my mum has been through, but my brain prepares me for the absolutely worst-case scenario in every event. It doesn't know how to do anything else. (Unresolved PTSD perhaps?!) 

I know it doesnt change anything, or shield you from the shock of it actually happening (if it does), but I feel like I'd much rather anticipate the absolutley bleakest situation possible and be pleasantly surprised rather than thinking "it'll be fine" and having my hopes shattered. I think panic is just hard-wired into my body. 

I know it's important to think positively, but I just feel like I don't have any hope that's it's going to be good news. 

I'd be lying if I said I was doing better today, but truthfully, the anxiety is even worse. I also have OCD, and so my brain takes over with ruminating on the bad possibilites. It's very very VERY hard for me to stop an obsession, especially when it comes to health anxiety. A couple of years ago, I was checking the lymph nodes in my arm consistently every day for months because I was convinced I had breast cancer as I kept feeling weird shooting pains, and extremely achey boobs (which were mostly likely from PMS, as they only seemed to happen on or before my period!)

I think I also look at the statistics, and they still seem utterly bleak. The fact that immunotherapy only works in 20-30% of all melanoma cases is terrifying, and doesn't instill still much hope in me, as that means there is a 70-80% chance that it won't work. The same goes for other treatment options. There's also the case of if it does turn out to be melanoma and it isn't caused by a faulty gene and is just some sheer stroke of bad luck, then I feel the options are drastically smaller due to lack of targeted gene therapies like BRAF. 

I know this is all theoretical, and it could be that I'm worrying over absolutley nothing, but I feel like I don't trust my body anymore. I don't even trust my body to have a "gut instinct" because my health anxiety is so debilitating that it can't differentiate it from imagined things anymore, 

It also doesn't help that a few days ago I posted photos of my mole onto a melanoma forum, and someone commented that out of all the moles they've seen on there, mine was in the top 5% of likely melanomas. That did wonders for my anxiety, as you can imagine! 

I've also been reading a lot of stories, and it's hard to find the positive ones of people who have survived past the statistics, when most late stage patients have between 2-6 years at best. 

I just like things are so bleak right now. :( 

 

 

 

 

 

I think that I might have stage IV melanoma.

19 Mar 2023 11:15 in response to ImAWriter22

Ok, firstly you need to come out of that forum - I'm guessing it's an American one because NO ONE, not even melanoma patients, are qualified to give an opinion on what a mole looks like. If Dermatologists can't do it without a biopsy goodness knows why a patient thinks they know better! In my 26 years as a patient I would never make such a suggestion - leave it up to the experts. This has fuelled your anxiety and it was totally pointless so don't ask for anyone's opinion other than a clinician (sorry but it boils my blood and I hate support groups who allow this kind of thing).

Don't read immunotherapy stats too closely. Immuno hasn't been around long enough for them to have true stats yet and they are always changing the way immuno is given to get the best results. Amongst the Stage 4 patients I know there are many more than 30% who have survived, some still free of cancer after 12 years. Stats are ever changing as each year goes by and the stats you are reading are at least 4 years old because it takes that long to produce and publish them. A lot has improved in that 4 years. Yes, those with the BRAF positive gene also have targeted therapy as an option but there are several types of immunotherapy - if one doesn't work they try a different one or they combine two together. Alongside immuno there are other types of treatment available and trials accessible dependant on the location of the tumour(s) so it's not as cut & dried as you believe.

Please take a step back from getting immersed in something that may never happen. You haven't even seen your GP yet so if it all turns out to be fine you have worried yourself to death for nothing and you can't get these days and weeks back. Good luck tomorrow,

Angie

I think that I might have stage IV melanoma.

20 Mar 2023 11:38 in response to AngieT

Hi Angie and Amy!

I went to my GP surgery this morning. My normal GP wasn't in so I was seen by a different doctor... but he said that he had an extra advantage because he used to work in skin clinics (which actually makes me feel far better than if it was just my normal GP!)

I told him that I don't use sunbeds, take all the right precautions, and he then obviously asked me about family history. I told him that because of all the things my mum has been through I automatically expect the worst, and that the more I look at the mole, the worse it looked, and how I've basically convinced myself I'm dying thanks to Dr. Google (which he said was understandable, given everything.)

He looked at the particular mole in question with that special handheld light thing, and he said that it was slightly raised, but he didn't see anything that was concerning or worrisome! He then took a look at all of the other moles on my body just to be sure/compare, and he said that they were all fine too! 

(Though my anxious brain is trying to use all of the research and stories I've read to convince me that he's wrong – health anxiety sucks, doesn't it? But, I'm trying my best to remind myself that he has far more experience and expertise than myself, and definitely more than strangers on reddit who think they're honorary dermatologists! I guess I still have a bit of mistrust in doctors after they failed to diagnose my mum with breast cancer properly the first time she had it (because the lump went from pea size to about 11cm across and into her lymph nodes within a year, after she was continuously told it was nothing to worry about)... but then again, that was 15 years ago and entirely different doctor, and I know realistically occurences like that are few and far between!)

He did say that if I continued to be worried about it, to take a photo of it every month with a ruler – that way I can see if it's changing in shape or size!

I have to admit, I'm rather relieved. I feel like I can breathe and focus again for the first time in weeks! 

 

I think that I might have stage IV melanoma.

20 Mar 2023 14:50 in response to ImAWriter22

Oh I'm so pleased to read your update. Other than keeping an eye out for changes, I hope you can forget about the moles and live every moment to the fullest! Lots of love coming your way x

I think that I might have stage IV melanoma.

20 Mar 2023 15:52 in response to ImAWriter22

I'm so glad that the GP specialises in dermatology as that gives you much more confidence in their advice. I'm also pleased that they suggested the ruler and photo tip. Only do this once a month otherwise you will become obsessed with checking and re-checking. I suggest you mark your calender for the 1st of each month.

Now let the stress drop from your shoulders and enjoy life xx

I think that I might have stage IV melanoma.

21 Mar 2023 13:59 in response to AngieT

Hi Angie,

 

I have seen a few of your comments on various discussions and they've really reassured me. I was just wondering if I could ask some questions please?

I had a large flat mole on my breast for many years (2.5cm) probably from early teens. It was one colour, but with a couple of what look lighter circles towards the middle, and has always had a notched border but it's mostly symmetrical.  In the last 5 years I've noticed a bit of growth but not much, and it's not raised or bumpy. I have had two children in that time and my breasts have stretched and shrunk again so I always thought the mole was just bigger because of that. 

Anyway, 3 weeks ago I went to my GP to have two moles on my arm checked so thought I'd get that breast mole checked out whilst I was there. She referred me straight to dermatology as she said it was a bit weird looking. I had my dermatology appointment within 3  days where they removed the mole via excision and said I'd hear back 3-4 weeks. 
 

I am currently a nervous wreck- I suffer from health anxiety anyway since having children but now it's panic attacks daily. 
 

Do you happen to know if cancerous biopsy's take longer to come back? It will be 3 weeks on Friday since the removal. 
 

Where I've had the mole for such a long time, I'm terrified it's spread. The thought of leaving my two little boys is breaking my heart. I have had no other symptoms, I don't think my lymph nodes feel swollen and apart from the anxiety and that fact I'm overweight I feel in decent health. Melanoma also doesn't run in my family, and I've never been one to sit out in the sun all day (let alone sit in the sun with my boobs out). I just wish I'd get this checked out years before.

 

I think that I might have stage IV melanoma.

21 Mar 2023 15:50 in response to Lizziemj

Hi Lizzie,

I'm sorry you are waiting for your results to come back, waiting is the hardest part of this experience.

In answer to your question - no, cancerous biopsies don't take longer. All biopsy tissues are checked in turn and very rarely prioritised. The 3 to 4 weeks quoted as a waiting time is unfortunately not accurate in some hospital trusts. There is a backlog at most trusts due to a lack of histologists so it's taking some results 6 to 8 weeks to come through. Also, once they come back they get discussed at the weekly MDT (Multi disciplinary meeting) where dermatology, Oncology and Plastic Surgery discuss the results and agree on a plan. This happens to all results, whether good or bad. So all this slows up the process of when the patient is contacted. I suggest if you haven't heard anything by next week that you ring Dermatology and ask the Secretary if they've received them yet.

Please try not to panic about not getting it checked sooner. If it is malignant it doesn't mean it's been so all this time. We've all been guilty of leaving them too long - I left mine a year before getting it checked - I'm still here 26 years later! 

Hopefully you won't be waiting too much longer and the results will be good news. Please let us know how you get on,

Angie

 

 

 

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