🦋 Amy’s story 🦋
So been thinking how to start this and I have no idea how to so I’ll just come out with it – I have cancer. Melanoma to be specific. Superficial spreading melanoma to be even more specific. Stage 2a. It’s not ‘just skin cancer’.
I’m not posting this for any type of sympathy but I do want attention, for a very specific reason, and I’ve been thinking for a while now, firstly whether to post at all, and secondly how to post it if I decided to.
The reason I want to post about it and make it public is to raise awareness, and I think the best way to do that is to share my story, a little bit of information and some pictures of my journey so far. It’s a long one so you might want to grab a cup of tea if you choose to read on!
So here goes… early this year I noticed what I thought was a spot on my back, it was just annoying but I couldn’t see it and thought it would go away. It didn’t seem to go away so I luckily got Kris to take a pic of it, but it looked more like a mole to me, and again I thought nothing else of it.
Then fast forward to the end of June – it had grown considerably and was starting to feel itchy and annoying, so I booked a doctor’s appointment because I did the dreaded Googling and it said it could be skin cancer. Even though Google said that it was skin cancer I didn’t believe it because you shouldn’t trust Google, right? Had to wait ages for an appointment and got seen in July by an experienced GP. She confirmed what I thought – that it was nothing to worry about – it was just a wart. We agreed that it should be removed, though, as it sat right at my bra strap and was very annoying.
I cancelled my first removal appointment as I had work commitments and rescheduled for 25th of September because I was told it was nothing to worry about. It was a quick and straight forward removal at the GP surgery with a little local anaesthetic, they literally just cut it off (called a shave excision) and that was me on my merry way. Everything taken automatically gets sent to the lab as standard – luckily for me.
Then comes the 11th of October, a day I’ll never forget. I was doing a little extra day at work and I received a phone call from another doctor asking if I was able to come in – I couldn’t as I was too far away. She asked if she could share the results of my removal over the phone and I’m so glad she did. She said they found melanoma. I was devastated. She was talking a lot and I heard none of it – just that one word. I phoned mum and she was devastated but said it is what it is and that we’ll deal with it. I literally was on the floor on my knees crying my eyes out. Emergency referral to dermatology put through.
After the drama of all that I found out I had superficial spreading melanoma that was 2.4mm thick so done A LOT of researching on my good friend Google. I didn’t realise that firstly, there were so many different skin cancers, secondly that melanoma is the deadliest of all those skin cancers and thirdly that there are loads of different kinds of melanoma and so many different places you can get it (under finger nails, palms of hands, soles of feet, behind the eye and other body cavities!). It was an interesting read but also very scary and really made me think. Just getting slightly pink in the sun can cause the mutation that will give you melanoma. And sun beds… never going on one again!
I was referred urgently to the dermatologist who did a full skin check and lymph node check, noting another freckle/mole to keep an eye on, and then had a skin biopsy of the original area. That required more local anaesthetic and the nurse cutting out that section of skin, going as deep as where the fat begins. It was a little sore and I was told I’d have a scar. I didn’t care about a scar, I just wanted this horrible disease out of me. I waited almost 4 weeks for the results and finally found out they removed another 3mm. I also found out the cancer was in vertical growth stage with a mitotic rate (speed in which cells multiply) of 3/mm2. I’m told this isn’t a high number but the fact it was still growing, and growing down, was obviously concerning.
The next part of the treatment was to get a wider local excision – meaning they cut a larger area out (2cm out all the way round from my current scar, going as far down to just before the muscle), to get ‘clear margins’. This just means they want to make sure there are no little microscopic cells nearby that have detached and could grow. This means another procedure and a big scar. I was also offered a sentinel lymph node biopsy too, which I decided to get. Melanoma most commonly spreads through lymph nodes to other parts of the body so this procedure finds the nearest lymph nodes and cuts them out, checking for any cells that have spread there. I was told that if there is anything in the lymph nodes I will have to start immunotherapy, so my body can attack the cancer cells and destroy them itself. And if there wasn’t then I don’t go into remission until 5 years has passed, after having quarterly full skin and lymph node checks.
The confusing part for me was having the two different thicknesses – 2.4mm and 3mm. The doctors were flummoxed by this and don’t usually order a CT scan unless the thickness is 4mm or more but I’m obviously just unique (lol). Thankfully this was clear, which means there are no large growths over 1cm, as this is the thickness the scan can pick up. So next thing is surgery.
It was a lot to take in, in such a short space of time but all I knew was that I wasn’t going to let cancer beat me or get the better of me so full steam ahead with my surgery! A plastic surgeon does both procedures at the same time under general anaesthetic. I went in on the 4th of December with Mum and Megan by my side for moral support. I had to first get a scan to show where my nearest lymph nodes were before surgery. It was a very early start and this involved having 4 injections of radioactive liquid into my biopsy scar on my back and then being scanned for around an hour. The surgery went to plan and I, thankfully, got home the same day at around 8pm. I was lucky enough to be able to go private for this procedure (through my work) which meant only waiting 2 weeks for the results. And what a long two weeks it was. I was extremely (still am) uncomfortable and sore throughout – even with pain killers. Not being able to dress myself or lift my child was and still is very hard. It really knocked me as I have very little independence and that is really strange as I am not used to having to rely on others for literally every little thing.
Then comes today, the 19th of December. I received a call from my plastic surgeon with my results and burst out crying. Of the lymph nodes they took and big chunk from my excision there was NO EVIDENCE OF DISEASE (NED)!!!!! I am over the moon, this is one of the best days of my life!
I would still be posting my story today even if my results weren’t clear as I want to raise awareness and help take away stigma from this horrible disease. I also want to say a massive thank you to my family and close friends, as well as my fb support group Melanomamates, for all the support and listening ears – I’d be lost without it!
I am not finished my journey yet, however. I will be at the dermatologist regularly for the next 5 years, and if after that they are all clear, I will be classed as in remission. What I will never do again is get sunburnt, I will always be safe in the sun and ensure my family are too. If you get anything from this post at all please let it be to protect yourself from UV rays and check your skin regularly for changes or new moles or just anything unusual in general, please. ♥️
My Melanoma journey, the journey that no one ever wants to be part of, also the journey that no matter how hard one tries, one can never get off, Buckle up people, it’s a long and bumpy ride.
I first noticed a small skin coloured lump on the top of my left ear back in 2010. This small lump used to itch a lot and was noted by my hairdresser a number of times. I worked for a national children’s charity as a counsellor at the time, and also noted that the headset that I wore on shift, also caused the lump to itch and it was felt that I was possibly allergic to the material on the headset. I spoke to my GP about this in April 2010 and was told that it was a wart, nothing at all to worry about and to maybe try over the counter wart treatments if I wanted to.
The lump (or wart that I then believed it to be) continued to itch and grew. I always then wore my hair longer on that side, to hide this, as I was embarrassed to have a wart. I changed jobs and began to work on a national child protection helpline, again the issue with the headset continued. I again spoke to my Dr who again continued to say that it was nothing at all to worry about. During an apt with practice nurse, who noted the lesion on my left leg, I explained that Dr was not concerned about both, the Practice Nurse was concerned and booked an apt there and then to see the Dr the following morning.
The Dr reluctantly referred me to Dermatology (non urgently) Fast forward 5 months the Dermatologist focuses solely on the lesion on my leg, stating that the lesion on my ear is simply a wart and that he will treat this at another apt. Follow up apt arranged for 6 months later, I made contact with the medical secretary to request to bring the apt forwards, as the lump on my ear is now growing rapidly and is also bleeding. Follow up apt, I’m told that the Dermatologist cannot freeze treat the lump, as they feared it would cause scarring. I am then referred to Plastic Surgery Team as they will be able to treat with minimal scarring. This referral was again non-urgent. Two months later, at apt with Plastic Surgeon, I’m asked lots of questions regarding history of sun damage, sun bed use and family cancer history, referred for an urgent biopsy. Biopsy taken, call received from Plastic Surgeons secretary 10 days later to attend urgent apt for results. Diagnosed with Stage 3c Malignant Melanoma, request for urgent head and neck MRI completed, the following week with contrast. Both myself and my husband walked into the busy hospital at 4pm and walked out at 6pm, in a totally different world, the hospital entrance was still busy, yet we both felt that we were in a different zone, people were moving around us, but we felt as though we were trapped in a bubble. We were advised to speak to our two teenage sons and to write down any questions that we had. Head and neck MRI show an enlarged lymph node on brain stem/spinal column to be closely monitored.
My details are referred to an ENT Plastic Surgeon Consultant, who informs me that the option of surgically removing the tip of my ear, is not an option, and that my whole left ear will be amputated including tragus. I’m advised that this will not impact my hearing, and that if at 5 year survival point I am still alive, I will be able to have reconstruction surgery whereby, bone from rib area is surgically removed, and an ear is surgically grown over two years on my forearm, my head is again spinning. (Within this time, I left my long-term post with National Children’s Charity and began a new job in the February as I was diagnosed in the July 2015. I had my whole left ear amputated and tragus amputated in August 2015. I was informed at follow up apt that sadly healthy margins were not able to be achieved, and that they were referring me for radiotherapy. One of my Cancer Nurses during a MDT meeting asked the ENT surgeon to also consider further surgical option. It was then that I was referred to another hospital to see a Skull Base Surgeon. Who had considered the case and options and was under the impression that I had already been advised of the recommended procedure. So here I am sat in an apt alongside my husband – suddenly being told that the whole left side – inner ear & middle ear will be surgically removed, alongside temporal bone, all lymph nodes on left side, facial nerve to be cut and stripped, all salivary glands to also be removed on left side and skin taken from thigh – to replace using a free flap. Then to be followed up by radical radiotherapy. I would lose all hearing on left side, sense of taste, loss of sensation, as whole left side vestibular system would be removed, there would be major issues with balance and being able to triangulate sound. We were both in shock and were taken to a room to speak to the cancer nurse, again the world had continued to spin, but we were somehow not spinning in line with the rest of the world.
The second surgery was completed in November 2015, 13-hour surgery, I woke up and could hear constant screaming on my left side – Tinnitus that is there permanently. I was told that I would be in hospital for at least a fortnight, I managed to do all that I could to get walking, to get home to be where I could be most comfortable and to be with my husband and sons, I was home exactly a week to the day of my surgery, even with a diagnosis of pneumonia due to being in lengthy surgery.
At follow up apt, the pathology report confirmed that Melanoma was present in areas that couldn’t be seen by the naked eye and that had not shown on PET scan, CT scan and MRI scan. This was noted to be a skip metastasis. Decision made for radical radiotherapy to be completed in Jan 2016 – 32 sessions on head, neck and shoulder area. I totally underestimated how brutal radiotherapy was likely to be, it kicked me and kicked me hard, after session 1 my mouth ulcerated, and this made eating extremely difficult, it also wiped out my sense of taste in whole mouth, as it was already wiped out on left side. The 100-mile round trip each day, Monday to Friday was exhausting and without my husband and wonderful friends I don’t think I could have coped with this. Each session was ticked off, a step closer to banishing this beast. I received a lot of medication to help soothe the sores in my mouth, aqueous cream to apply to soothe skin damage and burns from the radiotherapy. I received ensure plus drinks to assist with nutrition. I had sessions with speech and language therapy team, and dietician as these were concerns. On the last session, I rang that bell three times to mark the end of treatment, I also brought my mask home with me, that was moulded around my head and shoulders and was clipped on top of me onto the bed each day.
On a lighter note, a humorous note as I cope by seeing humour in stressful situations, as session one of radiotherapy is commencing, I’m clipped to a bed and cannot move, cue music playing their choice – First song Lightning bolt by Jake Bugg, just as the beam is zooming close to my face. Put a smile on my face.
I then went onto six weekly checks with skull base surgeon, six weekly checks with oncologist, I requested to be seen by a different dermatologist to receive ongoing mole mapping, these appointments are three monthly. I have had a number of lesions removed and thankfully they have been benign. I asked to receive six monthly scans to monitor, I have been receiving six monthly head MRI scans and also six-monthly CT scans on Chest, Abdo and Pelvis, both with contrast. I am now also under the care of a Tinnitus consultant, to look at coping strategies for my permanent Tinnitus, a Maxillofacial consultant as I have trismus following radiotherapy that causes headaches, jaw pain and a tense jaw, I have facial physiotherapy to treat this issue and have to sleep with a mouthguard to prevent jaw clenching in my sleep and a device to maintain the opening of my jaw that I use daily. I still have issues with loss of sense of taste on my left side, including numbness. I have a prosthetic ear that I apply using a skin friendly glue, I have been advised that at the five year survival mark, I could consider reconstructive surgeries, at this point I do not feel that I want to undergo further surgeries, unless they are to preserve life.
But yet, here I am still alive, so all of the above side effects are a small price to pay, for still being able to be a wife, a mother, a sister, a daughter in law, a sister in law, an aunt, a cousin, a good friend and ME..
I returned to work in May 2016 and continue to work full time, work helps me as work is my normal, I am able to help others. I do struggle at times and often feel overwhelmed, I have accessed counselling and am now awaiting an apt with a psychologist. As I find it hard to accept the uncertainty that melanoma brings. I’m told to forget about it and to live life, I’ve also been told all the way through from diagnosis, how sneaky and how aggressive my melanoma is, that now its hard to change that, but here I am at the three year mark.
I did have many sunburns as a child, I also did use sunbeds, I loved having a tan, it made me feel better about myself and made me feel more confident. If I could change one thing, it would be to erase all of that, but sadly I can’t, but what I can do, is to educate others, and to try to also raise awareness on the dangers of sun bed use and sun damage/sunburn.
If I can help, just one person, to prevent them from all of this, then I have made a difference. I am not perfect, I continue to feel overwhelmed at times but each day I also continue to be the best that I can be.
Take very good care of you.
Thank you Anthea for sharing your heartbreaking journey with us and highlighting that unfortunately GP’s can get it wrong.
It all started in 2009 with a small mole on my back which my mum noticed was changing shape. I went to the doctors who measured and told me to come back in 8 weeks to re-check as “it all looked perfectly normal”
I went back and it had grown so I was sent to a skin specialist, who again looked at it and said it didn’t look suspicious but he would take a biopsy. Biopsy came back saying it was a superficial spreading melanoma. It was removed and then i had 3 years of 3 monthly checks. Just as I got to the 3 year mark new pigment appeared on the scar. The hospital decided to remove the entire area and surrounding tissue just to be safe. It went from a 1 inch scar to a 3 inch one, but after testing came back with no cancerous cells…big sigh of relief 😌Fast forward to December 2015
I found a lump in my armpit, about the size of a 10p. I went to the doctors and was told to come back in 3 weeks if it was still there as it could be my lymph nodes and I could have been fighting off an infection.
3 weeks later I returned and was then told I would need an ultrasound. I had to wait what seems like weeks for that date to come through and when I got there she took one look at it and said she wanted to biopsy it straight away
I got the results 2 days later that it was a metastatic cancer but they didn’t have enough cells to know where it had metastesized from!
I then had to wait for ct and mri scans and weeks and weeks for the results to tell me that they could not find a primary
Having all along told me how highly unlikely it would be for it to be from the 2009 melanoma because it was only 0.6 mm thickness they were now saying it would be THAT melanoma.
March 2016 I had my axillary lymphadenectomy, the lump was now the size of a golf ball. I was told very forcefully by the cancer nurse that I would never lift my arm above my head again and to forget my recently found love of lifting weights! It’s a bloody good job I’m as stubborn as I am otherwise I might have believed her! I was back in the gym by the August albeit taking it slow but back nonetheless.
Lymph nodes were tested and it was finally confirmed that it was melanoma. I was now stage 3 after 7 years the bastard was back!
I couldn’t believe it, after my 3 years of check ups I was left to my own devices, I was never given any information about the perils of melanoma or told about the likelihood of it returning and in fact in 2014 I went ahead and had a complete back tattoo done, totally ignorant of my need to be vigilant! Yet here I am now stage 3, back in the system and having scans every 6 months, that is until 11 months later when results came back showing tumours in my liver!!!!!
Bam stage 4 just like that…….my life had turned upside down in 14 short months!
Then began the immunotherapy journey……which sadly didn’t work as well as we had hoped so by the August of 2017 I was beginning to walk down the Oral chemo tablets path. Dabrafenib and Trametinib were to become my new friends as would monthly trips to Mount Vernon on the “drug run” and the 3 monthly routine of ct and mri scans with the scanxiety that comes with them! 😔
I’m now in my 12 month of these drugs. I’ve had 2 shrinking scans and 2 stable. No new growth which is great, but I live with the constant worry about when the drugs will stop working their magic.
I am thankful for every day, I am sad that days may end sooner than I had hoped but I am determined to spread the word about how serious a cancer Melanoma is..
That “just skin cancer” was cut out, then it came back, then it was cut out again….and guess what……it came back again! Shelly x
Thank you Shelly for sharing your story and showing how emotional support is also important.
🦋Caroline’s Story 🦋
I noticed back in 2015 a new mole had arrived on my left knee.
I had no concern but after a few months I thought might as well get it checked out. Went to the doctors who told me you can still develop new moles in your 30’s. She said it’s perfectly round and looks normal, no concerns doctor said, so no worries.
1 yr later in 2016 the mole started to become itchy and sore it had also slightly grown in size. I have a golden retriever dog, he was only 2yrs old in 2016 what myself and my husband noticed was the dog would sniff and try and lick where the mole was, he seemed drawn to it every time he sat next to me, I went back to the doctors who referred me to the RVI in Newcastle upon Tyne, I attended my appointment and the mole was removed. I was told to make a new appointment at the hospital for a week’s time, but in the mean time they will only ring me if the results were negative, all week I waited for the phone call and even rang the hospital to make sure they had the right number on records for me, I thought this has to be a mistake.
I was told to bring someone with me to the appointment, Friday came and myself and my husband Stephen went and I was met by a lovely nurse who took me to a room and I was told by one of the senior members I had stage 1a malignant melanoma. I was given tonnes of advice had a full top to toe examination and was told I would need a further removal just to make sure all the cancer was gone. To be fair none of this sunk in, I left and I would say 24hrs later I felt my life had fallen apart, I couldn’t stop crying, I thought about my 2 children both under 5 at the time could lose their mammy, so many different emotions went through my head I was so scared, I was given a booklet which I trolled through. I could not believe the different stages of skin cancer and how it could easily spread into your blood stream, I went in for my 2nd procedure and thankfully no more cancer was found, I have no feeling in my left knee now but I don’t care about that, I was told I would have 3 month check-ups at the hospital.
Then early 2017 I noticed another new perfectly round mole had arrived on the same leg but this time on my thigh. I pointed this out on my 3 month check-up and the consultant said we will get it removed as a precaution, after the removal I got a letter telling me to come into hospital, I knew once again this was not good. I spoke to the consultant who told me it was malignant melanoma again same as my knee, and as a precaution I would have to have more removed, thankfully all was removed.
My life did change slightly in 2016 I would never let it rule me but there is times when i sit and overthink thing’s I’m extra vigilant now, check myself and thankfully I have amazing support from my husband, family and friends and I know I could contact #melanomaMe at any time.
I found the charity #melanomaMe through Facebook when I was reading Amanda’s story, it broke my heart; I contacted them and told them how I was feeling. I got to meet the lovely ladies and founders of the charity in November last yr at a charity melanoma fund raising ball, and sat on a table with some amazing people, they offer so much support for people going through it, been through it and people wanting to learn more about it.
I cannot turn back the clock but it’s all about making awareness and being vigilant. Xx
Thank you for sharing your story Caroline. This is living proof melanoma is not always obvious or stereotypical.
🦋Anonymous (Carers perspective)🦋
Hi, I’ve been trying to figure out what I could tell you…
Big points for me were, I wanted to be skilled up to give my wife her meds at home. To support her so didn’t have to leave home.
We loved doing puzzles while waiting in the Oncology department and I have no idea why. It was really lovely that there was a tea-round on a trolley that visited the waiting area too. Stupid thing I know but it was a relief to see a cup of tea coming my way.
I felt quite involved in my wife’s journey. I found lots of clinicians and so forth very supportive by and large. However, what stands out for me now is how quickly the door closes when the loved one dies.
I’m not sure I’m ever going to recover from losing my wife – I’m actually not sure I want to.
It’s hard with Melanoma as you have, in so many cases, often lost your loved one several months before they actually pass. You begin to grieve months before they die and then when the inevitable happens, it hits like a brick and you start all over again. The utter lack of hope attached to Melanoma is debilitating. I spent months trying to be upbeat and positive but crumbling inside. Personally, the pain is just too great to even consider dealing with.
My perspective is largely positive from the point of clinicians and the hospice. But my wife’s journey was a shared one… when she left, the door was closed on me too and all the support and care offered when my wife was alive, was cut down and so in a way… I felt doubly bereft.
Thank you for sharing your story, re-enforces why we support all those effected by Melanoma
🦋Lisa’s Story 🦋
I’d noticed a new tiny as small as a pencil dot mole on my arm whilst 6 months pregnant, I wasn’t alarmed or worried because I know everything gets a bit darker and skin changes when pregnant.
Growing up red headed and fair skinned you could always guarantee I was the lobster of the group come summer, I only wish now I really knew the dangers of not wearing the correct sun protection.
Anyway at my six week check post baby, I just mentioned the mole to the gp, she too wasn’t worried as it just looked like a nice normal mole, but referred me anyway because it was new.
I saw the dermatologist a week later, had the mole removed and she too said you will get the results in the post you won’t need to see me again, this mole looks fine. 2 weeks later I got a call from a consultant who asked me to come in ASAP. That’s when I panicked.
I can honestly say that at that moment even though he didn’t say anything, my first thought was ‘I’m going to die’ what about my children, who will my daughter have to do her hair, my autistic son totally depends on me, what about my son starting secondary , a million thoughts just flooded me.
The next day I went in to be told it was skin cancer, I can’t remember the jargon they used but it was thought to be only 1mm deep and caught early, I remember being very calm and quite zoned out as she was speaking to me … there was a Macmillan nurse there to , to offer support .. at that moment I just thought there nothing I can do now, so now I just have to be strong and go with …
Totally feel like I’m rambling on now … anyway … they cut all of that cancer away in two operations …. various biopsy’s from other bits of skin , an operation on my stomach as they thought a lump that had evolved on an old scar may have been linked, now on to 6 monthly checks … and I’m hoping and praying that’s it .
I won’t lie and say this hasn’t changed me, I do live in fear a little now … my scars ache in the cold , and my kids go to school looking like snowmen ( covered head to foot in sun cream) … but I’m here , and I’m here to stay 😉
Thank you so much Lisa for sharing your story and we wish you all the very best.
🦋Anonymous 🦋– I’d like to share my story with you if that’s ok….it’s taken me a few years to be able to feel ok with talking about it.
It was September 2015 I had just got back from a trip to America when I noticed a mole on my chest that didn’t look right and had started to spread across my chest, I booked a doctors appointment and straight away was put on emergency referral to the RVI dermatology within 2 days I was having a biopsy on my chest but also I had a few other moles taken out as precaution. I was told at the time “ if you hear from us within the week it’s all ok but if not we will see you back here on Friday” come the Thursday night I knew that something wasn’t right. However nothing could of prepared me for the shock that was about to follow.
The Friday arrived and I was sat in a room to be told “ you have malignant melanoma” the mole on my chest was benign but the other ones taken as precaution were cancer. I was 30 years old and told I have cancer was the most strange out of body experience I could of had, the only words I can describe it as was numbing, I didn’t cry didn’t say anything except “ am I going to die” I was taken immediately to oncology and surgery where they cut every bit of cancer out of me however it was another 7 months of operations and countless biopsies and more diagnosis’s of moles that where cancerous. All of a sudden it was second nature to be in hospital being cut open, my body was covered in scars that I probably arrogantly never thought would happen to me.
Nobody could understand how I felt because I had my hair and had to continue life like nothing was wrong I was ok but inside I was anxious, sad, broken and tired and every time I looked at my children who relied on me for everything I would have to leave the room to cry in case I didn’t get to see them grow up.
I finally had my last 10 biopsies in March 2016 and 10 biopsies come back clear. I felt a bit of relief that maybe I was going to be ok.
I’m now 2 years into 5 years remission I still worry every single day that it’s going to come back sometimes I wake up in the night overcome with anxiety that I’m going to die but I feel lucky that I was sensible enough to go to the doctors and that saved my life, I’m under care for 5 years where every 3 months I have my lymph nodes checked and skin and see a dermatologist aswell. I’m now having my 3rd child and life is good. I’ve had reconstructive surgery on my chest but that didn’t work however it’s a small price to pay for your life. I’d like people to know the dangers of sunbeds, sun. And be sure to wear protection. I alsways did but it happened to me.
Thanks for taking the time to read this.
Thank you for having the strength to sharing you journey and show how important it is to get moles/lesions checked if you notice any changes at all.
🦋 Sandra’s Story 🦋
Years ago I would let the sun burn my skin, using baby oil as sun lotion and vinegar and lemon for my blonde hair – to lighten in the sun.
I got burned one day in 2004 sitting round the pool in Las Vegas didn’t think I was was getting a tan, so didn’t bother with sun lotion but I burnt real bad. I was like a lobster. A few days later I noticed a little light freckle on my chest and never bothered with it after that.
2010 was on holiday again and noticed it a tiny bit more but still choose to ignore it, by 2013 it seemed darker but I still thought it’s normal.
Then came my honeymoon in September 2016 in Cyprus, I was only using factor 10, 8, 6. Yeah I got a lovely tan, but I noticed my freckles had changed quite a bit. My husband Richie said I should get that checked out. But I thought ‘yeah yeah,’ not bothering about it but I did keep looking at it.
Then again in May 2017 – walking along the sea front, I caught the sun quite bad. I had no sun lotion on again and this time it started to hurt. I felt like it had a spot under it. Again I choose to ignore it. A friend at work kept telling me to get it checked. I just said yeah I will.
That year in June I had an accident at work and fell. I was back and forth to the doctors for checks on my healing. In till one doctor, while examining me said “what is that? how long you had it for?” I said it’s nothing – just a freckle which I think turned into a mole. She examined it a bit more, shook her head then asked if I had anyone in the waiting room for me, or could i ring anyone. I said no, my husband is at work – what is it? I’m strong, I’ll be fine. She then said I am sorry, I can’t let you leave the surgery until I get you hospital appointment. It looks like you have cancer. CANCER, No! It’s just a freckle. I remember going home and ringing Richie at work – telling him they made a mistake and that everything will be fine.
Within 24 hrs I was at the hospital been operated on – having my freckle removed. They said we will give you an appointment for next Friday for results. But I got a phone call on the Wednesday – asking if I’d go in the next day to see them, they don’t have my results but just want to have a chat.
Then I knew something wasn’t right, but still kept a brave face – trying to tell myself different. From what I can remember that morning, I was walking into the doctors office, then sitting holding Richie’s hand and him saying again “I’m here for you – no matter what, we will get through this together. I am not letting anything happen to you,” then the doctor came into the room. She said “I have a nurse who is going to come out and talk you through some stuff” and then she said we got your results. My stomach dropped I knew what she was going to say. I had cancer. I squeezed Richie’s hand and the words were – spreading malignant melanoma. Then my ears started buzzing, feeling like I was going to be sick and faint. I couldn’t hear a word she was saying apart from my own words. it felt like a life time to say I’m going be sick, faint! I went into shock and things were blurred.
I remember seeing a nurse coming running through. They got me onto a bed and started rubbing my arms and legs to get the blood flowing. it was like pains and needles going right through my body. I saw Richie getting pulled away from me, behind the curtain. They were asking who in my family had had a history of cancer. He couldn’t answer her bless him, he just didn’t wanna leave go of my hand.
She asked about family members – I just couldn’t think. then she went through some booklets, telling us about all the support and help we were going to need. She even showed me her own scar. I was told I would need another operation.
That day was my worse day ever. I was thinking – am I going to die? I’ve just not long got married, what am I going to say to people? How can I tell my family. Everything was just such a rush.
I tried many times to pick booklets up and read them – I couldn’t! I broke down, pushed people away. I didn’t wanna have people around me. I wanted to let them remember me how I was and not how I am now.
Then my letter came through for my next op 2 weeks after my first one. This one was the worst one. The day I left the hospital I had a high temperature and already had an infection still from my last op. I ended up back in hospital the day after my op. They found another infection and I also have allergies towards the dressings they use. They gave me plenty of painkillers and penicillin. I can’t remember how many courses I had. I remember having to sleep with a tight fitted bra on 24 hours a day -because of where it was and my skin was stretching.
I haven’t had an easy time healing and have returned to hospital for help with it – but I have learned my lesson. I am so scared incase it happens again. For now I feel like I am living on the edge and waiting for it to happen again. I try to tell people so they don’t make the same mistake as me, but they don’t bother. So all I can say to them is – walk a day in my shoes and you will see how hard it has been and if it wasn’t for support from my family friends, most of all my husband Richie – I wouldn’t be where I am today.
I still cry but that’s normal and I now have my fighters scar. I got the news that there was no more cancer left in the area still hard to accept I had cancer.
Thank you for sharing your story Sandra. Showing how important it is to protect yourself in the sun and being vigilant with any changes.
My obsession with looking tanned began when I was a teen. I’m definitely from the false tan generation but that didn’t stop from experimenting with sunbeds.
Just to clarify, I didn’t have an obsession with actual sunbeds, or lying for hours in my back garden or even on holiday to get a cracking tan. I just liked to see my freckles and have tan lines.
As a teenager, on holiday I burned. My Mam used to lather me in Factor 50 but somehow I’d still burn. I remember thinking it was SO UNFAIR because my Mam tanned lovely.
When I’d cottoned on to the fact sunbeds would give me a great ‘base tan’ meaning I wouldn’t burn on holiday, (and I was old enough to use sunbeds) and it actually worked, every year, a month before my holiday, I would use a sunbed. Not every day, every couple of days. I must stress, I was not a regular user, just occasionally if you can call it that.
I loved the results from sunbeds, so for the last three years, that’s what I’ve always done. No more burns! I should have known it was too good to be true.
We’re warned as we grow up about the risks associated with sunbed use but my frame of mind, which I’m completely embarrassed to admit now, was that ‘well people drink alcohol and alcohol can contribute to cancer, therefore sunbeds are just another risk we take every day.’
I’m genuinely mortified writing this, that I thought like that but it’s the attitude many young women and men have. Unfortunately, I’m not the only one and that NEEDS to change.
I have moles almost everywhere on my body, freckles, moles, raised moles and I’ve always been aware of them. Checking them, looking at the colour of them, shape of them, you catch my drift. And then one changed.
It was actually a mole on my breast that had dramatically got bigger first and it was around the time I got a breast enlargement, therefore the only explanation was that it had simply stretched with my skin. Just to be on the safe side, I went to the doctors who agreed it may just have stretched but she still referred me to a specific dermatology department within Sunderland Hospital for a second opinion.
I went along to the clinic, met a nurse who agreed it was benign too, so all was well. The nurse referred me for another appointment in six months times so off I went and continued to use sunbeds.
Fast forward six months, I went to the appointment at the beginning of last year and on the offchance saw a student nurse who was a little new to the department and asked for a second opinion from a Doctor as the one on my breast had grown slightly. He asked whether they’d taken photographers from previous times, she said no just measurements, therefore I was then referred to Durham University Hospital to there dermatology department to meet another Doctor and get photos taken of all of the moles on my body, just to be safe.
I wasn’t worried, or even apprehensive in the slightest. The appointment went well, the mole on my breast really had just stretched with my implant, however, he did point out and notice a raised mole on the side of my face which he said in his words ‘he wasn’t too concerned about.’ Therefore I went off to have my photographs taken and given an appointment for six weeks time.
Again, fast forward again to six weeks time, which brings us to the end November last year where I saw a different nurse this time, still at Durham University Hospital though, who agreed the mole on my breast was fine however the one of my face, she was a little worried about.
Luckily, the doctor I’d previously seen had a spare five minutes and came in to have a look at me. He agreed with the nurse, there had been a change in the mole on my face. It had changed colour and shape a little bit, therefore, it needed to come off, to my horror.
I know this sounds stupid but I love the mole on my face but I know it’s better to be safe than sorry. So, I’ll be having the mole removed on Monday. Thanks to the amazing doctors at Durham, I was able to meet a plastic surgeon for the removal so fingers crossed there won’t be a big scar!
Fingers crossed I’ll be fine, I’ll keep you all updated once I’ve had it removed. Honestly, it’s not worth it. Just fake it!
Alice went on to say she was inspired to share her story to also raise awareness after reading Amanda’s article in the Sunderland echo and in her own words… There needs to be one big spotlight on Melanoma so more young people like me, I am only 21 and it can happen to me. Young people (and old!) need to understand what it is and how we can protect our skin. Here in Sunderland we’re lucky enough to have the charity MelanomaMe and on their website, I found out so much about Melanoma and it needs to be shared.
Thank you Alice for kindly offering to share your story in a bid to help raise awareness of the dangers of sunbeds, sun burn and the importance of checking your skin. We wish you well for your upcoming surgery and a speedy recovery and good results.
🦋 Melanie’s story. 🦋
See that on my thumb? Do you know what it is? Its skin cancer. This grew from nothing in a matter of weeks. I thought it was just a fungal infection or a wart. Sadly not. I’ve been lucky, the cancer hasnt spread and it’s being removed next week along with half of my thumb. This may have not been the case if I’d left it and not got it checked out. I don’t want your sympathy, I want more awareness. Therefore, please go and get any changes or growths on your skin checked out, please tell people around you to get checked as well. Dont leave it to chance or make excuses! I will be fighting fit in no time but if I’d left it, I may have been losing more than a thumb. So please, don’t leave comments about how brave I am or how sorry you are, instead take that time to share this or tell someone they need to get checked or make that phone call to the doctors for yourself………Ps. If anyone knows where I can get a mini hook attachment for my stubby thumb give me a shout! 😆
🦋 Awareness and education is so important! Early detection literally saves lives. Thanks Melanie for sharing your story.
🦋🦋💕Lisa – My Story
Life was good, I was in the process of holding my very 1st ‘Tried and Tested’ event. Tickets were sold out and the pressure was on. ‘Tried and Tested’ was a Facebook online beauty group which had gone viral over night.
I have hundreds of moles and was foolish when I was younger, slapping on the factor 2 oil and having those pre holiday sunbeds for that ‘base tan.’ Before that I even had my own. I was a dancer you see and part of looking good in your costumes, was having a tan.
Once I had my children I started to take a little more care although I was still not a vigilant with my own skin as I should have been.
Due to my large number of moles I was put into the system for regular checks at hospital and started to take sun safety seriously. I had many moles removed all returning benign to my relief.
May 2015 would change my life forever. I found out I had malignant melanoma and it rocked my world. I was to then find out the severity of the disease doing research and helping raise awareness. It scared me to death. Lucky for me I was stage one and it had been caught early. Another operation to painfully remove extra tissue around the melanoma site was needed to make sure it was fully removed. 2 days later the show had to go on and I emotionally got through my event I had worked so hard to put together. It was a roaring success. I remember my dress was made for me and it unfortunately revealed the large incision on my back. No one knew as I managed to keep it under wraps. I was fragile and just needed to get through the event. I anxiously waited to hear if they had indeed got all the cancer. It took weeks! ..so long that I thought something was wrong. At my appointment they apologised for the delay, there had been a discrepancy, on removal of the extra tissue they had in fact removed another mole ( no surprise ) but it clouded the results as it looked like more abnormal cells. I was glad however to find out it had all successfully been removed, I would now move onto 3 x monthly checks and life would carry on as normal.
Life never is normal after that and anyone who has been diagnosed understands. I am high risk and it was explained my melanoma would no doubt return, however they will do all in their power to catch it. It’s always there, the wondering is something growing? what if they miss it? I have so many to check.
Friday 18th August 2017 was going to be the day when I would hear those chilling words again.. “so sorry Mrs Guthrie but you have malignant melanoma”. 3 weeks previous to this I had had my first two moles removed since my diagnosis, It was precaution. There had been a few changes but nothing my naked eye would notice. No typical symptoms either. I could not believe I was back in this situation just over 2 years later. The worry, the sleepless nights waiting for the results. I got the phone call to say I had to go in for an appointment, I knew it was bad results, as unfortunately I know the system. A letter is good and an appointment, well that’s bad!. But how bad? How bad would it be? Will it be worse? Will I survive it? What stage is it? Has it entered my lymph nodes? Your mind goes crazy!. I was told I had stage 1 melanoma, They had caught it early again thankfully. This was a feeling of relief and happiness. It felt strange to be happy that although you have been told devastating news that the cancer was back, your relieved that you’re going to win the fight!. Another operation was needed straight away to, like before to remove more tissue. As I was being prepped nurse Carol (my angel sent from heaven) asked to just give me another once over checking my body from head to toe. Another suspect mole was found and was ordered to be removed at the same time.
As I write this I’m sore, emotionally drained but so damn grateful. Yes I am awaiting more results but I feel strong. There are so many more people worse off than me and some of the stories are just devastating. More has to be done to raise awareness and educate people on the severity of skin cancer.
Melanoma is the fastest spreading deadliest form.
of skin cancer, although I was stage 1, I was 0.5 of a mm of being stage 2. I am eternally grateful to my nurse Carol and the team at Durham University Hospital for looking after me so closely and catching it early.
This is a way of life for me now. It is a dark cloud that will follow me forever waiting for the next diagnosis, all because I wanted a tan!. A tan that fades within days and ages your skin terribly too. It’s just not worth it. Stay sun safe, use high factors and please do not ever use tanning beds. If you notice any changes in your skin be sure to get it checked immediately.
This is my story, a story to raise awareness and If it stops one person using tanning beds then I’m happy. Stay sun safe people and fake it don’t bake it. Lisa
Thank you for sharing your journey with us Lisa. You have raised awareness to the dangers of ‘getting that tan’ hopefully this awareness help others make better choices in protecting themselves from this awful cancer.
Carrie is a 38 year old mum to Tom, and has enjoyed the sun all of her life. She is naturally dark skinned and dark haired and never considered herself at risk of melanoma, due to never burning.
Carrie’s story began earlier this year when her hairdresser highlighted a suspicious lesion on her ear. Carrie attended her GP and was told to keep an eye on it for changes, but he wasn’t worried.
The mole was again noticed at her next appointment at her hairdressers and this time her GP did refer Carrie on to dermatology.
It was agreed that although the dermatologist wasn’t too concerned, the mole would be biopsied.
Carrie’s surgery involved cutting a piece out of her ear and then pulled together to be stitched into a neat thin line.
Carrie was told the horrific news that histology had confirmed superficial spreading Malignant Melanoma of 0.86mm. This sounds a tiny amount, but as a Melanoma doesn’t have to invade too far to have open access to her blood system, it was a huge cause for concern.
She is currently booked in for her wide local excision which involves taking another large piece of her ear away. This is to confirm that all of the cancer cells have been removed.
Carrie wanted to share her story for a few reasons.
1. To raise awareness. Melanoma does not just ‘happen’ to people with fair skin. Everyone is at risk.
2. To highlight the importance of our hairdressers, beauty therapists, holistic therapists, physiotherapists etc in the early detection of Malignant Melanoma. People who work in these industries are able to see parts of the body that we are not, such as ears, neck, back, scalp, head, shoulders etc.
Awareness saves lives and thank god for Carrie’s hairdresser. Without her she wouldn’t have had a clue that Melanoma was sitting on her ear waiting to cause heartache for Carrie and her family.
Carrie recently went through surgery on 9th August 2017 ❤
Thank you for sharing your story Carrie. Shows the importance of the beauty industry being aware of Melanoma
Thursday 20th February 2014 is a day my family and I will never forget; hearing the words “you have cancer” are life changing. I was diagnosed with stage 2 malignant melanoma, an aggressive, reoccurring form of skin cancer.
If I’m honest I didn’t realise how serious this form of cancer is, like many, I thought “it’s only skin cancer, I’ll be fine” sadly this is not true.
I went to the doctors in September 2013, as I was about to leave I asked the doctor if he would mind having a look at a mole in the middle of my back, just above my bra line, fortunately for me he measured it and asked me to keep an eye on it, any more problems I was to go back. I had a follow up appointment with my usual doctor about 6 weeks later about another matter. My mole was itchy and I asked her to have another look at it. As the previous doctor had measured it she could quickly tell it had grown; she said she would refer me to see the dermatologist as a precaution as it looked ok.
I had an appointment through quite quickly, I saw the same nurse I had seen in 2002 who checked the very same mole. She looked at it through the dermascope and again said it looked fine, but, as it was sat on my bra line and causing a bit of irritation, she would get it removed. I had an appointment for 19th December to have the mole removed, due to a gruelling work schedule and that no one was concerned I cancelled the appointment and re booked for 20th January.
I went to the hospital to have the mole removed; the consultants final words were “I will be very surprised if there is anything wrong with that”; I left feeling a little light headed and woozy. I went into Boots the chemist to get a few dressings on my way back to work, while I was stood in the queue to pay I passed out, splat on the floor! It was so embarrassing; the staff in boots were amazing and the paramedics who were called to check me over. My husband came to the rescue and took me home to recover. I should have known then that things were amiss!
It was February half term and I was enjoying some time off with my girls, I’d missed a couple of unknown number calls on the Tuesday, Wednesday morning I received another call and fortunately answered it. It was consultant’s secretary and asked me to attend an appointment the following day at 9.30am. I knew then it was bad news. I felt sick, called my husband and made arrangements for my mum to look after my 2 girls overnight so I didn’t have the worry of getting them to her early the next day.
Thursday 20th February 2014 is still a day that I remember every detail and feeling I went through, I can’t remember all of the conversations; as soon as I heard the word “cancer” and “stage 2” I zoned out. My husband was with me and in a state of shock too, all he could do was hold me, which he did to comfort us both.
During the next month I had many tests and follow up appointments to prepare me for surgery where I had a large amount of skin and tissue removed from my tumour site on my back. My surgery went well and I recovered at home with the love and support of my friends and family, I was literally not able to do anything for 3 weeks due to the risk of bursting my stitches; for those of you who know me this was incredibly frustrating!
4 days after my surgery I turned 40, not quite how I had imagined spending my 40th birthday, but hey I was alive!
A CT scan at the end of March showed irregularities on my lung, liver and ovaries, there were concerns my cancer had spread. I was told that I would have to have another scan in 6-8 weeks to see if any of the irregularities had grown indicating that the cancer had spread. If the cancer had spread to my organs, at this time there was very little in the way of treatment options and currently there is no cure for melanoma.
In the only way I felt able to cope, I began putting my life in order. I started planning my funeral, writing birthday cards for my beautiful daughters (my husband is useless choosing a birthday card, standing joke in our house) buying special gifts for my girls for their 18th, 21st and their weddings and of course a list of things to help my husband bring up our girls as a widower.
A lot of tears were shed and a lot of honest conversations were had (usually in my kitchen with a glass of wine).
After more tests over the next 6 months I finally heard the words I was dreaming of, the irregularities that had shown up were not cancer; such a huge relief, I cannot put into words the emotional rollercoaster journey having a cancer diagnose is.
I took the decision in August 2014 to move my care to The Churchill Hospital in Oxford, they have a specialist team who are at the cutting edge of trials and new treatment therapies, due to the experience I had with my initial hospital trust, I lost faith and trust, this, for me, I felt, was so important.
3 years on from my diagnosis I am still NED, no evidence of disease. I had 3 monthly skin checks up until my last appointment in April 2017 and I am now on 6 monthly checks ( BTW – yes you get naked, but hey I’m sure they’ve seen it all !!! any excuse to buy nice new underwear J) continue to have blood tests and scans where required to check nothing has grown and investigate any new lumps and bumps. I have also had a couple of other moles removed that looked suspicious and these have turned out to be dysplastic moles, they have the potential to turn into melanoma. But, I’m healthy and I’m very much alive.
My cancer diagnose has changed my perspective in life, and has changed me as a person; the last 3 years have taught me to never take things for granted, cherish the things you love and have hope that one day a cure will be found.
If anyone reading my story has a suspicious looking mole, blemish, lump or pain please go to your doctor, you know your body better than anyone; if you are not happy go back. I am glad I did, if I hadn’t it would be quite likely my children would not have a mother and my husband would be a widower.
I dedicate my story to the angels that are now flying high, looking over us, who were taken by this dreadful disease.
Melanoma in not “just” skin cancer, please protect your skin.
Thank you for sharing your story Michele and you’re so right – if in doubt get it checked out.
CANCER and my Melanoma story: don’t worry, it’s nothing serious; it’s just skin cancer!
My rollercoaster adventure began back in the noughties, although it probably began as a child using Nivea cold cream to soothe reddened skin from the annual Butlin’s holidays to the South Coast and the many fabulous days spent at South Shields and our many lovely Northeast beaches. Truth be known, the real damage was done getting a ‘healthy base tan’ on a sunbed in my teens and early 20s. But don’t worry, I was lucky, I just got skin cancer, cut it out and shrug it off!
I am really ‘lucky’ that despite my fair skin, blonde hair (before I was robbed of it with intensive double dosage radiotherapy to my poor brain) and blue eyes, I actually tanned (deliberate use of the past tense) really easily and rarely burned; although I ‘caught’ my shoulders and chest a few times over my carefree younger years of late teens and early 20s, when everyone knows you are invincible.
Do you know what caused my current precarious situation? A pesky little mole on my right ankle. January 2011, at an unrelated GP appointment, I mentioned to my life-saving Dr (he took it serious, not all do!!) about a mole that seemed to be itching more and occasionally bleeding. He booked me for an urgent referral (this is 2 weeks under NICE NHS guidelines) to the dermatology unit at UHND. Not really thinking too much about this, I went along alone to the appointment. The Registrar examined it several times looking more perturbed each time he looked until he sought the opinion of his consultant who took one look at it and said “prep her for surgery; that needs to come off NOW” From her reaction, and other staff coming to see, I kept getting that look you get when things aren’t good – a mix of sympathy and fear – I have had too many of those now to not instantly recognise it.
Results came back – malignant melanoma – but hey that’s ok because they had cut it out. “It’s just skin cancer” A full and intimate body check ensued during the receiving of the “you’ve got cancer” meeting; apparently you can get melanoma ANYWHERE on your body, inside and out. I have the scars to prove it. I needed to have further surgery to remove another 3 suspicious lesions (abnormal looking moles) and also further surgery to the original mole excision to ensure they got it all (which they did) and it needed a skin graft (extremely unpleasant and not recommended – sun cream is far less painful) which required a hospital stay of 6 days, a wheelchair, Zimmer frame, crutches, one year physio, and 3 months off work unpaid with permanent scarring and nerve damage as its legacy.
I had 2 further surgeries that year with more suspicious lesions removed. Luckily, they were all benign but the anxiety and waiting for results was and still is no easier to endure. Fast forward to January 2013, a suspicious brown streak appeared on my big toe of my right foot, so off that came too – nailbed biopsy – ouch!
Then *drum roll* everything settled down and I continued with my 3 monthly follow ups at hospital (and continued my own monthly lymph node and skin checks at home) which were always clear and despite the anxiety leading up to the appointments, I became a little blasé and dared to get on with my life, always wearing SPF50, no longer blasé with the sun. Roll on January 2016 and I had my final check-up, all clear and so was discharged TOTALLY CANCER FREE! Woo hoo.
Life is a rollercoaster so they say, and one year ago I was back on that rollercoaster, whether I wanted to or not. Don’t panic though “It’s just skin cancer” if it comes back, they can just “cut it out” and all will be fine! Apparently not.
I found a lump. I hoped and prayed it was a hernia. Dr Google confirmed it could be but also suggested testicular cancer, and as a young woman I felt this may be stretching belief slightly. Our wonderful NHS really stepped up to the mark for me; I had examinations, blood tests scans, painful biopsy and then the news. I knew it was bad, every time you get ‘the look’ you just know! But how bad…couldn’t they just cut it out??? It’s just skin cancer, said no melanoma patient ever!! I had gone from stage 1b to cancer free to stage 4 – incurable/advanced/terminal in an instant. My life changed forever in that moment. Not only had it invaded my pelvis and groin and abdominal wall but it had gone to my lungs, 6 tumours!! I was booked in for major surgery with a view to starting to treatment to target the lung tumours (too many for surgery) once recovered. 5 days in hospital this time around and then months of recovery and post-operative complications of lymphedema and pulmonary embolus and DVT as a bonus prize.
Fast forward to May 2017, Melanoma awareness month and I have been on treatment which has worked miracles on my lungs (a later scan before starting treatment showed they were multiplying rapidly and there were too many to count) not without a few scary moments, many scans, a few emergency admissions, some unpleasant procedures and hospital stays but I am still here one year later. My lungs are doing well and the drugs have shrunk the tumours and only one is visible now. However, as it’s incurable, they can only shrink and keep from multiplying; a holding pattern before it mutates, changes shape and begins to grow and multiply again. That’s a problem for another day.
Side effects have subsided a little and in January this year, I started back at my fitness group, doing modified versions of HIIT classes. Sadly, in February my scan showed that the melanoma had gotten itself nice and comfy and made lots of melanoma babies in my precious brain – MY BIGGEST FEAR had come to realisation. Too many (at least 7 sizeable) tumours for specialist radiosurgery (less invasive) and microscopic tumours all over the lining of my brain. It makes sense really, your skin is your biggest organ and it is already in your brain. Imagine some pesky little testicular cancer cells, knocking on the door to your brain to be in! Go away, you don’t belong here!! But melanoma is already there, it’s in your skin cells, it’s like a back stage pass!! So, my melanoma groupies have made their way in and quite comfortable. Reluctant to leave the party and causing me all sorts of worrying symptoms while they’re having a blast. So, without too much time to think, I started an intensive course of whole brain radiation therapy (prognosis for melanoma brain metastases is approx. 4 -5 months survival so I had no time waste) double dosage as they wanted me to continue with the targeted chemotherapy that is keeping my lungs in check during treatment which is not normally recommended because of the effects. However, I completed this on 1 March and am still really struggling with the after effects. I am a very naturally positive person but I feel completely heartbroken that my life is so precarious right now; three weeks ago I had a mini stroke attack caused from brain swelling. A tumour bleed in the brain could take my life in an instant. I have to wait another month to find out if it looks like the treatment may have worked. I may not be eligible for further treatment with active brain metastases. Without wanting to sound too dramatic, my life is hanging in the balance.
Oh how I wish I had taken my skin and my life more serious, spf30 and NO SUNBEDS could have prevented my situation. I am high risk by skin type and I ignored it. When I am gone, my wonderful husband, my amazing talented children who are 10 and 11 and should not be in this situation, and my beautiful family and friends will be left to deal with my unnecessary early passing. It feels so unfair, but it is what it is. I have and am taking the opportunity to not take things for granted and have a list of memory making to work through. If you take anything from my story, please let it be to protect your skin and your family and friends by avoiding sunbeds and applying sunscreen, even on cloudy days. Melanoma kills. It’s not just skin cancer.
Thanks for listening
Thank you so much for sharing Amanda, you are a brave lady. I’m sure your story will raise much needed awareness
It’s with a sad heart we share the news that the lovely Amanda has lost her battle to Melanoma. We send our deepest condolences to all her family and friends. R.I.P. Amanda ❤
Tracey’s story ⭐⭐
I follow your page and can I just say well done for raising the awareness of Melanoma… before I was diagnosed I didn’t know anything about it. You are doing a great job 👍
Here is my story, I would like to share it with you.
I had a mole on the back of my left leg for at least a few year. As it was on the back/top half of my leg it never really bothered me until early last year it started to get sore and itchy. I thought it was it was catching on the edge of the chair so didn’t do anything. Then in July I went to Cyprus on holiday and one day even though I rarely sunbathe due to being fair skinned decided to lie on my front… as soon as the sun hit my mole it hurt!!! That was it I decided I was going to get it checked.
I finally went to the doctors in September and mentioned my mole .. within minutes after her checking it I had a 2 week urgent referral for suspected Melanoma. I never gave it a thought, (I even said to my partner the doctor was just been over precautious). I got my appt to see the dermatologist who decided he needed to have it removed to have it checked. In October I had the mole removed under local anaesthetic at Durham hospital as was now under the plastic surgery team. I waited 5 weeks for the results and was told I had stage 1b Malignant Melanoma… I was so shocked as I never go out in the sun and don’t use sun beds!! I was offered an operation to have 2cm of skin removed round the original area and also to have a sentinel node biopsy to see if the cancer had spread!! I had this done end of November and in December again for more bad news, the biopsy came back as positive but my skin was clear!! I asked my consultant what my options were .. his reply was to have a lymph node groin dissection and have a full body CT scan. As I didn’t really want to have another op I asked for the scan first. This was done in between Christmas and New Year. The results came back as clear. As it was clear I thought about the op was needed but after speaking to family and friends agreed to have it done so had the groin dissection in January, I’m not going to lie, the few after wasn’t great but stayed as strong and as positive as I could.
A couple of weeks later I got my results, All I heard was the word positive … Arghhh
I never thought I was ever going to hear those words ‘negative’ . Again I asked my options and was advised this time a pelvic dissection- this was done in March. And last month I got the news we all want to hear ‘negative’.
The last few months have been an emotional roller coaster but I was determined to kick cancers butt and get through this. I’m not out of the woods yet but at this moment in time there is no visible evidence of it!! I now have lymphodema which I’m having regular appointments to manage it and also now have to have skin checks every 3 months and I’m starting to look like a patchwork quilt but I would rather have the scars, it’s a reminder how strong I’ve been.
And to anyone who has a mole and are unsure about it get it checked, I’m pleased I did.
Thanks so much Tracey you are very brave to share, must be such a difficult unsure time, please lean on us for support we are here for you.
Rosie’s story ⭐⭐
I have never been a person obsessed with tanning, in fact I have never used a sun bed in my life. As a teen, I would always sit in the shade on holiday and generally looked after my skin really well. I do have fair skin and light hair, so I was aware of the risks and was careful.
At the age of 21 I noticed a small mole on the back of my upper arm when I would stretch my arms up in a mirror etc and for some reason just thought it was odd. When I say small, it was probably 1mm in diameter but it was so dark that it almost looked black – which compared to my other moles was really abnormal. It would always be scabbed over and occasionally bled when I caught it. I asked my family and a couple of friends for an opinion and the general reaction I was getting would be “oh it’s nothing, it’s tiny.. don’t worry about it.”
One day I was at the doctors for another reason and just thought I would mention it on the end of my appointment. The doctor referred me to the dermatology clinic at the hospital. She didn’t seem too concerned but did it for precautionary reasons. Once there I met with a senior dermatology specialist. He did a dermoscope check and confirmed that I should probably have it removed so that they can test it.
About a month or so later, I had the mole removed under local anaesthetic which was pretty quick and easy, and left a 1cm scar on my arm. It didn’t bother me too much and I thought that was the end of it. I was called back in a couple of weeks later and taken into a room with around 5 members of staff and immediately knew it wasn’t good before I even got my results. They confirmed it was malignant melanoma and that I needed further tissue taking to see whether it had spread to my lymph nodes. Within 5 minutes, I was taken into a room where my mouth was swabbed for the operation and I had to strip down to my underwear so they could do a full body search. This was all a lot to take in within the space of 10 minutes, however I went into survival mode, and was just focusing on doing whatever needed to be done to get rid of it.
It was around 6 weeks later that I had the further tissue taken and it gives you a lot of thinking time in between which wasn’t great for my mental state. However, the procedure was fine overall and also done under local anaesthetic. I got the results that the tissue was clear and that the melanoma hadn’t spread which was amazing. I then had a checkup and full body scan every 3 months for a year following that. It’s now 6 years later and I’m always conscious and aware of the fact that I need to be careful in the sun, but I’m also not letting it rule my life and I think that’s important. I have a hefty scar on my arm but I don’t mind it, and it’s also a reminder of how strong my body was to beat it.
It’s scary being told you have cancer at the age of 21 but it’s made me stronger for sure. I now go for an annual check up at my local private hospital, mainly just to put my own mind at rest! I would say, if you’re ever unsure – just get it checked. You know your body better than anyone else and our intuition is often doing us a favour!
Thanks so much Rosie for sharing your story, it’s so important that Melanoma is brought into the light. It CAN and DOES happen to EVERY age group.
Hi my name is Tracey
I’ve had skin cancer a few times over the years my first skin cancer was a Basel cell carcinoma which I’ve had about 4 removed over the years. While these are not life threatening there are disfiguring. My mole was found by my sister zipping up a dress when she pointed out to me a mole on my back that looked strange. Went to doctors and was referred to skin specialist. That day the consultant said they would remove the mole as it did look strange. The day l had to go back to the hospital l wouldn’t let anyone come l reassured them it was fine, but really l knew what they would tell me. I went along to be told l had a melanoma 1B which meant it had invaded the tissue so they would have to do another operation to remove more skin. Which was done a couple of weeks later. The strange thing is l work in a hospice looking after people who are terminal with there cancer. We do have patients who come in who have not caught there melanoma early. I have a 3 monthly check tomorrow and another Basel cell carcinoma to look at so it never goes away. Stay safe think before you tan because it’s my fault l have this because l loved sun beds and the sun. Hope this brings someone some help. ❤❤❤❤
Thanks so much Tracey for sharing story, we are here to support you.
Raising awareness to the dangers of sun beds can help save lives.