Stage 2 - what to do, and an argument with a medical secretary.

Greetings fellow sufferers. I spent most of my life in central and southern Africa, so I suppose my diagnosis shouldn't have been a surprise.

In August, I went to the GP to have a couple warts frozen because both would bleed and make a mess of the pillow case. Instead I was referred to the Dermatology team at Yorkhill. There I met the first of what would become a never-ending array of doctors and surgeons, I have never seen the same one twice.

Anyway, this doctor frozen the wart on my scalp but said someone else had to see the wart next to my ear. She then asked if I had any other warts and I showed her one on thigh.  With hardly time to think, I was seeing another doctor who said she would remove this wart. This she did under a local anaesthetic, quickly, neatly and no drama.

I travel for work, and when I was away, I received a number of calls which I didn't answer. Getting home, there was an appointment letter for the day before, so the letter arrived after the appointment. Anyway, I phoned to explain and I was told I had to see this doctor, what about they wouldn't say. I said "OK, I'm available on these days", turns out you can only say when you are not available. This resulted in the booking person saying "the next appointment is Jan 2020"; fine by me and a date and time was arranged. 

Then the phones calls started again, and another appointment arrived, this time just in time and I was not travelling.

I rolled up at the Dermatology Dept and met another doctor who looked as if his dog and granny had died as he told me the wart from my thigh was Stage 2 Melanoma; but he assured me it was all removed. Nevertheless, he recommended a CT scan, fine.

The next day I was contacted by a nurse who was the most helpful medic so far and she sent me a Macmillan booklet. She also warned me that I would see a plastic surgeon for a wide local excision.

I did see the surgeon, and based on the booklet refused the sentinel node op as being too dangerous with little benefit. I also said I needed time before the wide local excision partly to arrange my workload and also to think it over. He agreed.

Imagine my surprise when on Friday I received an appointment for the op on 11th November, no time all. Today I was phoned by a lady who wanted me confirm my attendance. When I said “No” she became more and more aggressive as I tried to explain why. She told me I had to attend, and I said it was elective, “all operations are elective!”. Anyway, I made sure to remain polite even when she told me she had done her job for 25 year and, basically, I must do as I’m told. I repeated that I wanted time to think and arrange my work “we’ll give you a letter”. Anyway it ended up with her telling me she was taking me off the surgeon’s list.

Okay, now you have ploughed through all of this, what are the risks if I don’t have the op, taking into consideration these facts:

  • I had an op in 2012 that went wrong and I live with the consequences
  • The doctor who told me I had the Stage 2 assured me, more than once, all the cancer was removed
  • My wide local excision will be on my right inner thigh and a skin graph taken from my left thigh. The areas involved are alarmingly large, maybe 5cm x 12cm

Thanks for reading this and I look forward to your comments

  • Hi  and welcome to the online community although I'm sorry you've had to find us. Like you I was diagnosed with Stage 2 melanoma, although mine was nearly 3 years ago now.

    It was roughly 10 weeks after I was told that I had melanoma before I had the wide local excision (WLE) and sentinel lymph node biopsy (SLNB). Most people have them about 4-8 weeks after diagnosis. 

    You haven't said when you were diagnosed but assuming that it was September/October time then to be offered the WLE in a weeks time sounds about right. Some people do delay having it done though if they have something like work or a holiday already planned or difficult to move.

    As your consultant explained the tumour was removed when they did the original excision but that doesn't necessarily mean that absolutely every cell has been removed. My skin cancer nurse specialist (SCNS) explained to me that the WLE is like a mopping up exercise to make sure that no stray cells have been left behind. The tissue that is removed is sent off to the path labs, just like the original excision, to check for cancer cells.

    As my WLE was on my arm I didn't need a skin graft but there are plenty of people in this group who have had a WLE and skin graft on their thigh and hopefully they'll be along to tell you how it affected them.

    As I had a SLNB I had a general anaesthetic but if I'd opted for the WLE only then it would have been done under a local like the original excision. The amount of skin that is removed around the original site is decided by the depth of the melanoma. I had 2cm all around the original site so I was left with a large wound. However, now it's barely visible.

    To answer your question, the risk of you not having the op done is that there could be melanoma cells in the skin close to where the melanoma was. If you've been given the details of your SCNS it might be an idea to give her a ring tomorrow to chat through your options.

    I hope all this helps but feel free to ask anything else.

    x

  • Hi

    I have a morbid (life-threatening) phobia of doctors and hospitals. Due to this, I often say 'no' to treatment. There is no doubt that medical teams in the UK do not react well to 'no'. Of all the teams I have dealt with the one that coped least well was the Plastics team. The surgeon I was speaking just stared at me as if I was something from another planet. He was visibly relieved when my CT scan showed that my melanoma had spread and he could hand me over to the oncologists.

    With melanoma at stage 1 or higher, no surgeon should tell you that s/he is certain that s/he has got it all. They want to do a WLE to decrease the chance of it returning. They believe the operation may, in the long run, save your life and they cannot understand how you can consider refusing it.

    My best question was 'what happens if I refuse' because it made the doctors think past the shock of me saying 'no'.

    I am not sure what to suggest you do next, but you certainly would be better off speaking to a doctor or specialist nurse rather than a secretary.

    Could you GP help? Mine was awesome. If wasn't for him, I would never have accepted any treatment and I would be dead by now.

    By the way, I did agree to a WLE with a skin graft because, by that stage, I was bleeding uncontrollably from my primary melanoma. It meant agreeing to a general anaesthetic but it was day surgery and I was in and out within 7 hours.

    All the best

  • Hi Macshimi,

    In your place I would not hesitate to take the proposed treatment. I have had breast cancer and melanoma and am very lucky that it had not spread despite being locally advanced in each case. Melanoma is very treatable when caught in time. Give yourself every possible chance to put this story behind you.

    I can understand how frustrating this is from a career perspective. I went down that road too but your own health must be your highest priority right now, hard as that seems. 

    And if the medical secretary is hounding you it is certainly because the doctors feel the treatment is necessary. 

    In my case I had an initial operation which revealed that the lesion I had removed was melanoma. All of the melanoma was removed with the first surgery but not with sufficient safety margins. I then had a WLE to achieve the required safety margins followed by a skin graft - on my cheek. The WLE indicated some melanoma cells right at the extremity of the margin and I had another strip removed and a second graft. The third operation showed no sign of further melanoma cells. If I had turned down the WLE I would still have had melanoma cells and the melanoma would have returned.

    I also had an SNLB to check that the melanoma had not spread to the nodes. If you are not keen to have an SNLB in the groin node area, you can ask for an ultrasound examination of the lymph nodes. It is not a true substitute of course but better than nothing.

    I hope this helps you to make the best decision for you. 

    Take care

    Miranda

  • Thanks for all the advice, it certainly helps having people to talk to. That is missing in my treatment so far. I have never seen the same person twice and I feel that I am on a conveyor belt that won't stop. Everyone along the line has been very professional, but no-one has shown any real empathy, not have I felt that this person is in control and someone I can turn to for help. I'm back at dermatology next week to see someone else, on the conveyer goes.

    Anyway, I will re-read your comments and recommendations again this evening and will re-think my own path. Know I'm off to time out some stats about a wide local excision, wish me luck. 

  • Hi

    I hope you're well and I was wondering if you'd decided to go ahead with the WLE.

    x

  • I saw the surgeon who showed me area to excise - large - and the equally large area on my other thigh where the skin graft would come from. He told me it was purely a precautionary operation as the original removal of the wart had taken everything dangerous.

    I then explained that I travel for work and would need plenty of warning so that I could manage my travel and appointments, he agreed.

    On 5th November I received 2 appointments 8th November for a pre-assessment and 11th November for the op. No warning at all. On the same day I received a voicemail to contact someone. Once in the airport, I phoned and she wanted me to confirm the appointments. I said no, and explained that I needed more notice. She became quite aggressive telling me I had to attend and she would give me a letter to my employer telling them to give me time off.

    I said that isn't the point, it was not urgent and I wasn't involving my employer. I asked for January ideally or maybe December. This really worked her up and she told me she was taking me "off the list" as I would not co-operate with her.

    This week I received a letter from the surgeon saying he understood I had removed myself from the list?!?!?!

    Luckily I couldn't reach him on the phone and had calmed down by the time I wrote a letter putting my side to him. I can see this developing into a "he said" "she said" argument which I absolutely do not need or want.

    In the meantime, I had the lump by my ear removed. The appointment said "biopsy" which to me means a small test piece removed. The consultant said they knew what it was and it was coming off now. After a lot of local anaesthetic, he cut it out, leaving an incision from near the top of my ear all the way down and around the back of the ear lobe.

    He told me it would change the shape of the lobe, to which I told him I didn't care as I wasn't a fake-tanned-gleaming-teeth celeb.

    The worse was the amount of blood that flooded my ear and has left me temporarily deaf in my right ear, and my hearing in my left ear is already minimal. I was told the blood would come out by itself, hopefully not too far in the future. 

  • Hi macshimi,

    When the surgeons say they have removed all the cancer, they mean the visible affected tissue.  They then run all the tests and to hopefully avoid any further spread or reoccurance from that melanoma they have us all back for a wide local incission when its necessary.

    I had mine three years ago, and like you I needed a graft to be done to assist in the closing up of the wound.  Also like you I refused the SNLB as I understand it to be a confirmatory test, not an aid to recovery or cure and with some potential side effects that I really didn't want to chance.  I am glad I made that decision as later an inflamed lymph node in my groin -which otherwise would already have been removed- alerted me and my doctors that my melanoma was back.

    I've had several ops now, some at short notice, some then cancelled at short notice.  Unfortunately its a part of the NHS as they are stretched to the limit, trying to do all they can for all of us.  I know how you feel though and it is frustrating...

    I have the view now that I always accept the appointments as they are given, and generally after a little research take my doctors and surgeons advice. I want these things cut out asap as I'm told it might reduce the chances of further spread. Leaving them in for longer definitely won't help me. Soonest out, soonest mended as my Grannie used to say.

    You do seem to have had a lot on your medical plate lately with your ear surgery and the biopsy.  I hope your hearing is returning to your right ear, but there are a few simple remedies you can do to help clean out the dried blood.  Speak to your GP or chemist and google is your friend!

    To get a fuller picture of the WLE, you can click on my username which will take you to my profile.  There's a rundown on how it all happened in my case, and of course you can do that with the other users of this site. If theres anything you think I might be able to help with, please do drop me a mail and I'll get back to you. In the meantime have a look at this melanoma vid? I find its a useful thing to explain melanoma to friends and family who often think its just an itchy mole.

    https://www.youtube.com/watch?v=9oNXT22uMdY

    Take care

    J

  • I'm sorry to hear that things are still not progressing as smoothly as you'd like them to .

    I don't think there's anything I can add to 's excellent reply except to say that once this surgery is over, and you go to 3 monthly check-ups, you should have a lot more control over appointment dates and times. I'm nearly at the end of year 3 and after each check-up with the consultant I then get to choose my next appointment date and time for the following appointment. 

    I hope you get the hearing back in your ear soon.

    Take care

  • Hi Latchbrook

    I don't know how widespread being able to choose your next appointment is across the country but I have not done this for years.  Interesting that you can!

    When I go for check ups I just leave a piece of paper at reception and then the next appointment comes in the post.  Even then there is no guarantee that the date won't change, which it often does, if not always.Fortunately I can cope with changes as I gave up work because of the stress over how I treated when diagnosed with melanoma (complaint still with the ombudsman) and a replacement hip that has left me with pain.

    Across various hospital departments I visit changes of appointments are often the case.  My son in his 20s developed epilepsy a couple of years ago and the initial appointment to see a neurologist took months because it was changed from 2 weeks after he left hospital.  He was never seen as per the NICE guidelines of within the 5 weeks of his first seizure.  His follow ups change and as for my very blind, wheelchair bound mother in her 90s, our local eye hospital is so overwhelmed with patients that they are booking people in 2 years ahead just to have them on a list and then they hope to bring them forward.  As I was told, at least they won't drop out of the system that way.  Recently a mum was awarded £3 million because she went blind waiting.  My mother's appointments change all the time so much so that the check up on her eyes required for the consultant is now on a different day to that when she sees the consultant.  The only alternative was wait until next May. Not nice when you have to get a wheelchair bound elderly lady out of her carehome twice in the middle of winter.

    I feel the individual has very little control over when they are seen because the system is so over stretched in our area.  Hope you don't mind me putting a less optimistic view on things.  I obviously live in the wrong area!

  • Hi

    It's good to hear from you again! It seems ages since we last spoke.

    Of course I don't mind you coming here and telling us how your appointment system works. This is the whole point of the Community that we share our experiences.

    I don't know if my hospital system is unusual but my consultant hands me a form which I have to hand in at reception, just like you. However, the receptionist then pulls up the diary for 3 months time and tells me which days and times are available and I choose the one that's best for me. 

    However, I have had two appointments that have then been rearranged although, like you, as I'm retired it's not caused me a problem so far.

    All the best

    x

  • Thanks Sailor2. Latchbrook & Tiptoes12 for the advice and encouragement. I completely understand about the appointments and how over-stretched the NHS is.

    A couple of thoughts, if a patient normally has a long wait, what poor person was kicked down the line to fit me in, in such a short time-span? It seems very unfair as I had requested a longer lead time and the surgeon said the operation was completely precautionary.

    I would love to go with the flow, but life isn't easy and I have to be mindful that I want to work as long as possible to fund my pension as I know we won't have enough to live on. Worrying about that plus the possible cancer will more than double the anxiety levels.

    I'm lucky that my job is well paid, with a very concerned employer. I gave my boss a list of appointments and she contacts me after each one to see how I am and to remind me I can take time off.

    I'm only taking time off if I really need it, saving it for when absolutely necessary as the sick leave is on a rolling year. In addition, I have been given unofficial approval not to work the office in Malmo, but to remain in Glasgow. This consideration from work means I'm very conscience of not taking advantage of them

  • Hi 

    To answer your question, there could be a couple of reasons for you being offered an early appointment for your WLE. It could simply be that someone has had to cancel and you were next on the list to be offered an appointment so you got it. Alternatively, someone could have been 'bumped' down the list because it was felt that your WLE was more important that whatever they were waiting to have done by the plastic surgeon. You have to remember that the plastic surgeon will be doing all sorts of operations that require his skills and not just WLEs and a cancer diagnosis may well trump other ops he was scheduled for.

    I can understand your reluctance to only take sick leave when absolutely necessary as you say that you need to work for as long as possible. However, I know this will sound trite but your health is more important than your job. If you become too ill to work, because your melanoma spreads, then that is not going to help you now or in the future. 

    You may not realise it but because you've been diagnosed with cancer you are protected by law against discrimination at work (link). In fact you are now legally classed as disabled and your employer must make reasonable adjustments to make sure that you're not disadvantaged. It sounds like your employers have already started to do this by saying that you can now work from the Glasgow office.

    It's a shame that your consultant said that "all the cancer was removed" and that the WLE was "completely precautionary". I think that in his effort to make you feel less anxious he's given you the impression that the WLE is not really necessary. However, although the tumour has been removed they will not know whether all the cancer cells have been removed until the WLE is done and the results are back from this. 

    I've noticed that you keep referring to what was removed as a wart but it wasn't a wart it was a malignant melanoma. You are right that you can refuse any treatment that is proposed but a WLE is the treatment that follows a malignant melanoma diagnosis and gives you the best chance of making sure that everything has been removed.

    I don't know if you've looked at the video that  linked you to but the dandelion analogy is an excellent way of describing melanoma. If you haven't watched the video, it describes melanoma as a dandelion and that it only takes one seed (cancer cell) from the dandelion to break away and settle somewhere else for another dandelion (melanoma) to grow, possibly undetected.

    I'm sorry if I've offended you in any way, as it's not my intention, but it really worries me that you might not understand the seriousness of being diagnosed with malignant melanoma and that you're putting your career before your health.

    x

  • Good morning Latchbrook

    I drop into the site to see if anyone is talking about topics that interest me.  I don't expect to find anyone battling with their hospital over the way they were spoken to by a skin cancer nurse, her refusal to give me my full diagnosis and her refusal to name my consultant or even allow me to see one.  A cancer patient with no consultant and a patient whose hospital notes have been very conveniently lost! 

    However, it would be good if someone had an experience of mole mapping.  My red haired son, with a red haired mother a red haired father who had died of melanoma before he was born, now sees a doctor once a year. Like his father he has masses of moles.  I spotted one coming up; just like his father he is developing them through his 20s especially on his back.  Photos had been taken by the hospital and we have copies but the area where this has come up has been missed!  I do wonder if other hospitals have better techniques and what exactly mole mapping means..

    As you, just like me had an amelanotic melanoma and I have done some reading about them, I feel that the leaflets, the ABCDE advice and articles with advice do not state clearly or even mention that  these lesions will not look like 'ordinary' melanomas and do not follow the ABCDE rules.  I have also been told that dermaoscopes do not spot them unless used by a real expert, certainly not a GP.  Mine was a round red lesion, I gather they can be clear or beige.  It took 4 years to get mine removed starting with visiting my specialist dermatology GP who didn't have a clue.  All she did for me was tell me take Vit D, ironically in the summer I was too pale, use Efudix cream and finally passed me onto another GP running a minor dermatology clinic.  He told me it was a BCC so I took a very slow route to a BCC clinic for its removal.  You are more likely to die from one of these melanomas and I can see why.  There is no publicity for them and no GP awareness.  You would think I would have realised having seen my husbands, but no they are so far removed in appearance that even I had no idea.

    Now I have wonderful care and a consultant who did the checks himself last time and so far always comes to see me anyway at appointments.  All checks are done by a doctor - I will never trust a specialist nurse again.  Last time he mentioned his work on finding the faulty genes that make us redheads more susceptible to melanom.  Ironically neither my husband or myself ever sunbathed or wanted holidays abroad for the sun.  We both had mothers who understood that we had to be looked after with suncream or covered up.   My mother never sunbathed and as a 92 year old, nurses remark on what lovely skin she has! I have no more fear of the sun than I had before mine was diagnosed and my routines have not changed, only to the extent of doing a double check.  I spent time on an archaeological dig this summer on a site I love and know has virtually no shade, but I'm not hiding away.  Life goes on and I know it could possibly be lurking to come out years later, but so be it.

    It is marvellous the time you give to answering questions.

    X

  • @latchbrook  I don't mind at all, that is why I have posted on the forum. I'm looking for the overview, empathy that seems to be missing from my treatment. Every medic I have seen has been excellent, but none seem to be overall in control, I ask one about a previous appointment and they can't help.

    I was very surprised to hear I'm classified as disabled, I feel a fraud even thinking that I am. The video was interesting and well presented, thanks 

    I'ms sure I mentioned the issue with my colon that was removed because it had pre-cancerous polyps. The operation to remove my was a disaster (badly formed ileo-anal pouch, combined with the final conclusion that they had made a mistake, the polyps were not pre-cancerous. It's not an excuse, but an underlying reason why I can't take this too seriously until I have absolute proof. And comes back to needing someone pulling all the treatments together.

  • Hi

    Yes, mole mapping is something that intrigues me too as I've never been offered it. However, I know that is going to be having this done and she said she'd let me know what's involved afterwards. I've tagged her into my reply to you so that she can hopefully let us both know.

    x

  • I didn't know that you'd had a problem with an operation on your colon  so I can understand why you'd want to know everything that's involved in having a WLE before going ahead with it.

    I've always found that the best person to ask questions of is my skin cancer nurse specialist (SCNS). As you quite rightly say, you don't always see the same person twice but your SCNS can access your records and find the answers to any questions you might have. You should have been given a card with your nurse's contact details on. You'll probably find that you have to leave a message and she'll then get back to you when she's not in clinic.

    Yes, I was surprised about the disabled classification and you can find out more information by clicking here. I think I should have said that you are classed as having a disability rather than classed as disabled, which means that you are protected from discrimination at work.

    x

  • Thank you for offering to do that.  I have been told by the doctor who checks my son that 70% of melanomas come from new moles and my son is gradually adding to his collection as time passes.

    xx

  • Hi ,

    I have been away from the site for a few days only to find that Latchbrook has already written exactly what I had planned to write myself when I got the chance. 

    What I would like to add is the following. What makes all of this almost surreal is that we are often diagnosed with a potentially deadly disease when we feel just fine and we are fully engaged with our families, our friends and our work and living life to the full. A diagnosis out of the blue suddenly plunges us into another world. We are no longer spending our days with dynamic, energetic people, but in the waiting rooms of hospitals. No longer planning business trips but surgeries! I used to feel as if everyone else was driving powerful cars on a smooth sunny motorway and I was in a parallel universe pushing a wheelbarrow uphill on a pot-holed road. Your whole world changes and it is very, very difficult to really believe that a small lesion could truly be so dangerous.

    Concerning dates, I have never had a choice. I mentioned earlier that I had to have two WLE operations as the first was not sufficient to get the right safely margins. I know for sure that my second WLE operation meant that several wisdom teeth extraction operations were postponed (the parents must have been furious that those operations were postponed into the school year rather than taking place during the school holidays!). Even on the morning of my operation, I was all prepped, fasting as required and then told that the operation would be late afternoon as the surgeon had to deal with the unfortunate victims of a car accident. I can definitely confirm what Latchbrook says about the many different types of priority surgeons must manage to ensure their patients get the appropriate care. They are judged and measured on providing the care in a timely manner. If they consider that you are a priority, then you ARE a priority. Their schedules are driven not by patient preferences but by which patient requires the most urgent treatment. Again, a very different environment to a business environment where we always consider the customer is king and ensure his or her preferences are taken into account.

    Please do put your own health first. Put this melanoma story firmly in the rear-view mirror. If you take risks and your health deteriorates you will not be able to work. And having a good pension will meaningless if you are not there to benefit from it.

    I hope you will not be offended by this straight-talking but I do feel very concerned that you are putting your work commitments and your pension before your commitments to your self. You must be your own top priority right now. Doing everything you can to ensure the melanoma does not come back is your priority. Not an easy call to make.

    I hope this helps to let you know that we know the heartache that goes hand in hand with all of this, the feeling of why me, the feeling of being overwhelmed by a situation we never sought nor expected. 

    Take care

    Miranda

  • Hi

    I'm glad to see that you've found all our experiences helpful and I wondered if you'd come to a decision about when and whether to have treatment for your melanoma yet?

    Wishing you all the best with whatever you've decided to do

    x

  • Yes, I have an appointment between xmas and new year