Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Waiting for scalp biopsy results on a remote island

PhotoSensitive
Posted by

I have been lurking on and off here over the last few weeks trying to make sense of what's been going on, but I had originally told myself I'd only join and post if I got my results and they were bad news. However, almost 5 weeks in, I'm still waiting for results and feeling increasingly anxious and lonely as I continue to wait. I know writing and sharing my experience always helps me, so thought maybe I should post something if only to get it off my chest.

Part of my loneliness comes from the fact I'm currently living and working on a remote island away from the UK. I haven't told my family back home what's been happening as I don't want to worry them, so the only people that know are a couple of close friends who I've told on whatsapp, my colleagues here and my husband. I had a previous cancer scare about 5 years ago (suspected lymphoma at the time), which eventually was deemed to be nothing, so my husband thinks this will be the same. He's generally been quite unsupportive and in denial about the whole thing - thinks I'm being "melodramatic" to even think the results might be bad. My gut feeling (and usual method of coping with anything to be fair) tells me I need to prepare for the worst. I'm also nervous because a bad result will almost certainly mean leaving my job here and heading back to the UK, as treatment options are limited in a remote place with only one hospital and no dermatologist or oncologist - just a general surgeon, anaesthetist and GPs. 

Almost 5 weeks ago, I had three suspcious moles removed from my scalp - 2 from the left-hand side of my crown and 1 from the right side. The two larger ones (one on each side) were both ulcerated and regularly bled and scabbed over, multi-coloured (dark brown/red/pink) and with irregular borders. The right-side one was about 7-8mm and the other maybe a bit bigger. The one on the left side had another nearby mole which looked much more normal - smaller, lighter brown but still blurred borders. The surgeon decided to take both left-side ones away in one excision.

The surgery was far more unpleasant than I'd expected. They did the right side first which was fine, but then when they were working on the left side the local anaesthetic was starting to wear off and they were struggling to close up the larger wound. Heads bleed a lot and it hurt. The theatre team then tried to wash my hair with a cold bottle of saline because they were worried it would dry solid against my head because there was so much blood left behind. It was really unpleasant and I left the theatre in a state of shock. My husband had not come with me, but a colleague saw me straight afterwards, took one look at me and arranged to get me home. 

I was told at the time I'd expect to wait 3-4 weeks for my results, but I'm still waiting. I phoned the hospital yesterday to chase results and was told they're still not here, but when they are they'll phone me to book a clinic appointment for my results. I know clinics are weekly on Mondays so I'm expecting the earliest I will hear anything is next Monday but I'm still jumping every time the phone rings.

My wait originally started back in late June. The lesion on the right side of my crown had got infected, had swollen my lymph nodes and was making me feel a bit poorly. I had guessed what was happening because I'd had a similar experience just over a year earlier - back then a doctor in the UK (at a walk-in as I was working away from home) looked at the bleeding spot on my head and felt my very swollen lymph nodes, gave me strong antibiotics to clear up the infection and sent me on my way.

This time, I saw one of the GPs here who I had not seen before, who took one look at the spot on my head with a dermascope and said he thinks he should refer me on for a second opinion. I was a bit shell-shocked at that point, because I have always had a sensitive scalp that often flakes/scabs, particularly if I've been in the sun a lot (I also have a photo allergy/eczema) so I had just assumed this lesion was the same. He asked me how long I'd had it and I explained that I think it's been there about 18 months, at least a year as that was when it had previously got infected. I also reminded him of my photo allergy, which at that point he got the dermascope out again and looked more closely to measure it and explained because of its size it definitely should be removed and sent for biopsy, but no indication what he thought it was. He gave me some cream to clean up the infection and told me the surgery team will be in touch.

I had assumed because the spot was regularly bleeding, at worst it might be a non-melanoma skin cancer, but probably nothing to worry about. A colleague here had previously had SCC removed and another colleague had a mole removed last year, so they both reassured me that sending off skin lumps and bumps for biopsy is pretty common here, especially because they can't afford to watch and wait when there is limited specialist care here.

I got my husband to take a look at it afterwards who just said it looked like a manky scab, is probably nothing to worry about. The cream seemed to help the infection and my lymph nodes on that side seemed happier. I also got my haircut by a new hairdresser during this period and she also told me I really must get that spot looked at, which of course I explained I was already waiting for an appointment. 

I waited about 5 weeks for any more news because the (only) theatre here was being refurbished during this time. Eventually got a call to come into the surgeon's clinic. Saw the surgeon for pre-op appointment and whilst they were examining my scalp they mentioned the words suspicious mole, which was the first indication I should be a bit more worried. I also mentioned I had another spot that also regularly scabbed over on the other side, which was when they saw the second lesion and said that they both definitely need to come off. Told me they would book me in to get both removed ASAP and the biopsy would be frozen and sent to the UK for analysis.

Having heard the word mole, I started to get a bit more nervous about the possibility of melanoma. I've known since I was young I was high-risk and have always been fairly aware of sun safety. I burn very easily, have tonnes of freckles and moles and some large irregular birth marks and I remember being told to keep an eye on my skin for changes as a teenager. Having also developed UVA photosensitivity in the last 10 years (photo-allergy), I've been under a consultant dermatologist for a few years and wear SPF50+/UVA 5 star suncream every day, but although I only had a review appointment back in March, they never check my scalp.

After this I finally got up the courage to use a camera and take a few photos of my scalp to get a better look and was a bit scared by what I found. 2 large lesions with all the worrying signs you are taught about.

Finally got called again nearly 2 weeks later and told to come in for the surgery the next day - Friday. The first couple of days post surgery was tough. I felt pretty weak and wobbly over the weekend and hated not being able to wash the dried blood out of my hair. Got my wound checked on Monday and the nurse pulled up the original referral letter whilst I was there, which I could see on screen referred to suspected melanoma, which was the first time anyone at the hospital had actually expressed that to me and even then it was by accident!! This was not helpful for my anxiety and was in a bit of a tail spin for a few days, having nightmares about negative results and generally not sleeping well because of my stitches catching on the pillow.

I have been feeling run down for weeks now and have persistently swollen lymph nodes around my neck/ears which is not helping my stress levels (ie.my brain asks what if it's already spread?!). I've also got a bit paranoid about my other moles - I have SO many and quite a few are weird and wonderful shapes or 2 colours so I can't help looking at them with suspicion (although thankfully none as nasty looking as the ones that were on my scalp and they don't seem to be changing). At no point so far has anyone checked the rest of my skin so I'm worrying about what might be lurking in the places I can't see.

11 days after my surgery I went back for stitches removal and by that point my wounds and anxiety were settling down a lot. The nurse was reassuring and I kept telling myself not to worry and just be patient and see what happens. As the 3-4 week point approached though when the results were initially expected, I have started to get a bit more nervous and the nightmares came back. The results are now overdue and I can't stop my mind going into overdrive. Even if it is bad news, I think I can cope with that - for me it's the uncertainty and limbo that I am finding difficult, plus the being in a strange place and not knowing what to expect or whether that remoteness will impact on the outcome. My husband keeps telling me no news is good news, but from what I've read here, I'm not entirely sure that's true. Everyone else I've told seems to have forgotten I even had the surgery, so I'm alone with my worry until the results come. Anyway, all I can do now is wait, wait, wait...

Sorry for the very long post. Not expecting anyone to really read or comment, but it's been helpful if only for my own use to write things down.

I will keep you posted when I hear either way. I really hope I'm one of those lucky ones that has all the bad signs but a positive outcome!

latchbrook
Posted by

Hi and a very warm welcome to the online community at what sounds like a very worrying time for you.

I can understand how hard it is for you waiting for the results when you're a long way from home, friends and family and you feel that your husband isn't being very supportive. Maybe he is trying to down play this so that you don't worry but that's obviously not helping.

You say that one of the reasons that you're nervous about getting a bad result is because you'll have to leave your job and return to the UK. However, that might not be necessary. If the lesions removed do turn out to be melanoma then depending on the depth of the melanoma you may only require a follow up of a wide local excision (WLE), to make sure that all the cancer cells have been removed, and this may be something that the island's surgeon can do.

Waiting for the results is a very stressful time and it's hard not to think about the worst case scenarios. You sound like you have a job that you enjoy so hopefully you can occupy yourself part of the time with this. Unfortunately, as you say, the length of time to get the results back is no indication of whether they'll be good or bad but either way there are plenty of us here who can offer support.

Sending you a supportive ((hug))

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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PhotoSensitive
Posted by

Thanks for your reply. I appreciate it and a virtual hug is needed, thanks.

You're right that the uncertainty about treatment is definitely a big factor. Although the surgeon can probably do a WLE, if there's any doubt about lymph nodes patients usually get sent to the UK for investigation of this (at least that is the case for breast cancer which is more common here) as I don't think they do SLNB.

Unfortunately as I'm still under probation in this job and my sickness record in the first few months (2 days for a stomach bug and 1 day for surgery) has already raised a concern! There's no disability protection here, so overseas employees tend to be got rid of and replaced if they get sick, which makes my situation feel quite precarious. Before I came and despite the pre-employment medical, it never really occured to me what would happen if I got sick whilst I'm here. We've almost sold our UK house and sold or shipped most of our possessions here, so going home doesn't really feel like an option!!

Anyway I need to get back to work and focus on the job for a bit. Thanks again.

latchbrook
Posted by

Not having disability protection must be a big worry for you . I would normally point you in the direction of the Macmillan Support Line for advice but I'm not sure whether they'll be able to advise as you're not in the UK. However, it might still be worth calling them on +44 207 091 2230. Unfortunately the calls aren't free from outside the UK but the line is staffed by trained experts from 9am to 8pm Monday to Friday.

Take care x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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PhotoSensitive
Posted by

Thanks Latchbrook.

I will wait and see what the results bring, but if I get bad news, then I know there is support out there at least.

For now, fingers crossed.

PhotoSensitive
Posted by

Just had a call from the hospital. Booked in to see the consultant for results on Monday, although the receptionist wouldn't indicate anything more than the appointment time. Now an anxious weekend to wait, but at least the end of that wait is in sight.

ellblanche
Posted by

Hi PhotoSensitive

  • I know exactly how you are feeling. I am 3 weeks in from Biopsy, and feel like I am living in a different world to everybody else. I think the only way to deal with the anxiety is to try and stay busy. I will be thinking of you on Monday, and really hoping that you have some good news. Sending you a virtual hug (( )).xx
latchbrook
Posted by

All the best for your appointment on Monday . I'll be thinking of you.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

PhotoSensitive
Posted by

So I am very happy to report my scalp lesions are not cancer! "No sign of malignancy". Yay!

They have been deemed to be a type of dermatitis and are probably related to my sun allergy. 

One has already started to come back and the surgeon will consider excising it again if it keeps spreading, but hopefully I won't need to go with that.

I'm also being referred for a dermatologist's opinion on management/treatment, as they are not clear on the cause of the inflamation/allergy. Fingers crossed we can identify the cause.

I'm sorry for those of you who do not get the good news I did, but glad and relieved I don't have melanoma.

This has taught me to be alert though. I definitely have another mole I'm watching cautiously because it does seem to have changed in the last few months, but I wonder if that's paranoia brought about by the anxiety of the other biopsies. For now I will watch and wait and hope I never need to come join you lovely people again.

Thanks for the support and good luck to anyone else waiting for results.

latchbrook
Posted by

That's great news ! Cause for a small celebration I hope.

Hope you continue to enjoy your job and you have a great time on your island!

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

ellblanche
Posted by

That’s fantastic news Photosensitive. It’s great to hear good news, and it’s helping me to stay positive! xx