Diagnosed with melanoma skin cancer.

Hi  and a very warm welcome to the online community

I'm very sorry to hear that you've recently been diagnosed with melanoma after a long wait for your results. 

Most results take between 2-6 weeks so 10 weeks is longer than normal. A lot does depend on how busy the pathology labs are and sometimes the biopsy has to be sent off for a second opinion which adds to the wait. I hope your consultant was able to explain to you why you had to wait so long for the results. My personal experience was that I had to wait 6 weeks for mine so I do understand how frustrating and worrying this wait must have been for you.

When the plastic surgeon told you that you would be put on the urgent list were you told how soon that would mean that you'd be seen? The reason I ask is that what we think of as urgent and what the medical profession think is urgent can be two different things 

The second operation that you're waiting for is called a wide local excision (WLE) and most people have that between 2-8 weeks after diagnosis. Sometimes it can be longer, mine was about 10 weeks later. So being told that it'll be 3-4 weeks for your operation is, I'm afraid, about average.

When I had a chat with my cancer nurse (SCNS) she explained that the WLE was a "mopping up exercise as the melanoma is removed at the time of the biopsy". She was also able to reassure me that they had already got clear margins on the original excision but that protocols dictated that they remove a further 1-2 cm all around the original site to be on the safe side.

I'm not quite sure what you mean about knowing where you stand legally. If you're talking about cancer waiting times then clicking on this link will take you to the current NHS targets in England, Scotland and Northern Ireland. 

As for how you could speed up the date for your WLE, you could ask to be put on the cancellation list if you're able to take an appointment up at short notice.

When you have a minute it would be useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Let us know when you have your appointment through and, in the meantime, if you want any more information on what's involved with the WLE then please come back and ask. Many people in the group, including myself, have had this and we'll be only too happy to share our experiences with you.

x

Thank you so much for your reply. Eight years ago I had four months of Cryotherapy to remove face lesions. As a fair skinned, light haired person who has lived a long time abroad in the sun, it was not that much of a surprise. However, in June last year I asked my GP to refer me again as l was concerned at the presence of more facial lesions and dark freckles on my body. I had assumed l would be seen quickly as my GP knew my history and l waited. After three or so months l was getting frantic. I repeatedly asked my GP to get me fast tracked. Indeed l thought she had done this. I began ringing the hospital secretary myself, complaining about my wait time. Eventually my appointment came through in November last year, nearly six months after my referral. On 4 December the dermatologist took two biopsies from my side and breast. I heard nothing back. I asked my GP if she had received any report on 18 December and again on 3 February. She was not at all concerned at not hearing anything, and on 11 February, 10 weeks after the biopsies were taken, I went to my scheduled dermatologist appointment at the skin clinic. After waiting more than an hour after my appt time, I went to find a nurse as other patients had already been seen before me and gone home. It was obvious there was a state of confusion over my appt. They told me that I did not have any pathology reports back! I was shocked as so much time had passed that it didn't seem it could be possible. Eventually a nurse called me into the office where the dermatologist who did my biopsies, was opening up three pdfs from the pathologist. She literally read out the results to me as she read them from the computer screen in front of me. She told me the first was clear but the second was melanoma skin cancer. I was numb, l couldn't hardly speak or take it in. They tried to locate a cancer nurse but there wasn't one available. They gave me a booklet about the cancer with pages missing as they couldn't find out where they were kept. It was horrible. They gave me an appointment with the plastic surgeon on 28 February. This surgeon apologized on behalf of the NHS saying it was not how they normally look after their patients. She said that she would go through her patients operation list and fit me in urgently. She also urged me to put in a complaint and that she would be emailing both the dermatologist and my GP.  She confirmed that the pathology report was sent to my dermatologist on 11 January, but it had not been looked at until l turned up for my normal appointment on 11 February. My GP had not contacted them throughout the time I had been waiting since last June. The pathologist did not chase up the report he had sent to the dermatologist. And the dermatologist did not look at the pathology report until l walked into her office. I'm in despair over it all. I've looked at the link you sent me and I am woefully short of all the time targets set. Next Monday I have an appt with my GP and l will ask more questions of her. But it seems l have been totally let down by everyone involved in looking after me. It really is a scary position to find myself in.

Hi , I’m sorry to hear your feeling so very let down. I always feel making a complaint is to put things right for yourself and to make sure that similar circumstances don’t repeat themselves for any one else. 

I’ve not made a complaint myself but I’ve put in a link I’ve found that might help you if you do decide to go that route.

https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/

I hope your next wait and procedure goes smoothly and quickly.

Having read all that happened from initially seeing your GP to receiving your results I can understand why you feel let down.

We put our trust in medical professionals to look after us and act in our best interests so I can understand that you feel scared about the position you're in now.

I'll be keeping my fingers crossed that your SCNS is able to call you today with good news about an earlier appointment for your WLE.

x

Thank you, I will keep you posted on my experience. X

I was called in to have a full body check by my cancer nurse on Friday 6 March. Additionally I was given an op day for the WLE of Thursday 19 March. The plastic surgery unit called me on 9th and said they would fit me in the week before, on 12th probably, and would confirm. On Tuesday 10th they sent me a txt message to confirm. I made arrangements to go in. On the afternoon, today, they rang me to say no, it was back to the 19th. No particular reason other than the patient they hoped to change me with could not be changed after all. I was really upset over this. Later, I received another call from my cancer nurse who wanted to confirm my time for going in on the 12th. I told her I couldn't go in as the plastic surgeon said I couldn't. She said no, that isn't right, I will call you back. She did, but merely confirmed that no, I couldn't go in after all. I remonstrated with her that this just isn't fair, and how long I have been waiting. She got very defensive and I got the feeling that she considered me a nuisance. She told me that my GP was to blame for all this, and not her. I told her I was not criticising her personally, but I do think the whole of my journey with the NHS so far, has been terrible. Far from comforting me I found her aggressive and dismissive. She even told me that there was no guarantee I would have the operation on 19th. She didn't have control over circumstances. I'm afraid I broke down crying and I have hit a very low point with it all. Her arguement is that the biopsy on 4th December removed the melanoma and the WLE is just a formality. I asked if she was aware of any other patient who had waited over 15 weeks from biopsy to WLE, and she conceded that it was not usual, no. I really don't have any faith in anyone anymore. I'm in the hands of the NHS and I can't do anything more than I have done. Incidentally, I do have more lesions that will have to be dealt with and this is leaving me very apprehensive for the future.

I'm sorry to hear how upset you were yesterday when you discovered that you weren't going to be able to have your WLE brought forward to tomorrow as you'd previously been told.

We all get psyched up ahead of an operation and it's horrible when we're told that it can't go ahead as planned. I had something similar happen last year when the biopsy for a lesion I was concerned about was moved back a week so I do understand how you feel.

Looking back now I know that the operation was moved because someone was in more need of the plastic surgeon's skills (he specialised in burns) than me but at the time that was no comfort.

You only have a week to go now and your SCNS was right when she said that the melanoma has already been removed. My SCNS described the WLE as a "mopping up exercise" designed to make sure that they have clear margins. 

Looking back through this thread I see that you had an appointment with your GP last week and you were going to ask for clarification about why the whole process has taken so long. Was she able to help? If not, then as my friend KTatHome has suggested, you could contact PALS so that they can look into this for you.

Wishing you all the best for next week's op.

x

Hi

How are you doing in these very challenging times? I hope your WLE was able to go ahead last week.

Look after yourself

x

Hi , I also had a bad experience with the NHS with wait times for my initial consultation, biopsy and WLE, although not as bad as what you experienced. I’m not going to go into detail about it because it makes me very upset but there were so many mistakes made by NHS staff that I could’ve easily slipped through the radar. I am very grateful that the NHS is free but I just do not want to risk this happening again with something as serious as cancer, so I am now going to a private dermatologist for my further treatment. I was treated for my first melanoma in Australia and the wait times were very stringent - a WLE was always performed within a week of your biopsy coming back positive. Wait times were 10 days for biopsy results which for me back then felt like forever but it’s nothing compared to 6 weeks here! Anyway, I understand that not everyone can afford to go private and I can’t really either, so my parents and partner are helping me out...so I’m grateful for that. I have had 2 melanomas so far and probably more so I just need a better level of care that I have personally experienced so far through the NHS (acknowledging that lots of other people have likely had great experiences with the NHS!). I haven’t been to the private clinic yet because of coronavirus but I’m hoping that i have a better experience there. Also, in Australia, the dermatologists had a confocal microscope, which means that they can look at your moles when they are still on your skin at a cellular level, instead of taking them out and then getting them looked at by a pathologist. This was great for me because I have lots of dysplastic moles and have already had 20+ moles taken out before this technology was invented and it reduces the amount of biopsies that the doctor needs to do (and the wait times!) I don’t know your individual case that well but some of the private clinics here have one, which is a plus. Anyway, all the best & I’m so sorry you had to go through so much anxiety and stress. 

Hi and thanks for both messages, I'm very grateful that you have taken the trouble to write to me. To update, I was called up by the plastic surgery unit on 12 March at 9:15am, and told to come in at 12 o'clock for the operation. I'd already eaten breakfast but only a slice of toast. The day surgery unit was packed out, and this was before coronavirus impacted. The WLE was done and I came home. I was told to come back a week later for the dressing to be changed and a wound check. I did this but there were no staff available to speak to me and so I wasn't able to ask anything. The nurse who changed my dressing apologised but said that coronavirus had upset everything. No-one was wearing protective gear. I called my cancer nurse on 21st to see if she knew anything about the WLE. There was noone there and the nurse called me back on 23rd. She had no information about the op but said that I had an appointment in place for 3rd April with my plastic surgeon. This was followed by a written appt. I arrived and found no other patients at the clinic! Most appts had been cancelled due to coronavirus. I was given a mask to wear and the consultant was in full protective gear. She told me that my WLE was clear and she wanted to do another full body check. I have many lesions on my skin and she pinpointed two which need further investigation. I was sent for a pre op in preparation for the biopsies. I was then sent for a full body mapping with the medical photographer, which took quite a time. Again I was the only patient present. It felt very eerie. I'm used to the hospital being overrun every time I go. Lockdown changed all that. So, that it the situation at present. I'm waiting to start the process all over again when I'm sent for!