Hi xal, I went private for a kidney problem.  I asked the GP to recommend one, they then write and make initial private appointment which is a consultantion with a Consultant.  So we paid for that then told them we needed to go back on the NHS for further treatment.  Despite being NHS your private consultant will deal with it all in their name.  Good luck, Carol 

Hi,

If you don't mind me asking, what depth was your wife's melanoma and where in the country are you living? Sadly there appears to be long waiting lists in some parts of the country at the moment but it's important to know the depth and if it was ulcerated as a 3 month wait is the longest I've heard of up to now. I'm assuming it was more than 1cm in depth if they are recommending a sentinel node biopsy?

To go privately you need to ask your GP for a private referral. The NHS wouldn't recover any of the costs but she can return back to the care of the NHS after her private surgery.  Please read this from the CRUK website as I think it's worth arguing that your wife is not getting her treatment within the guidelines www.cancerresearchuk.org/.../waiting-times-after-diagnosis

Angie (melanoma patient)

Hi, 

Thanks for the replies. 

Apparently, the depth is 0.1mm, but the width of the actual mole was probably about 8-10mm. 

To me, the depth sounds very small, but then again, she needs to have a lymph node removed. 

We're in Maidenhead, Berkshire. 

Our concern is that she would have been seen by a consultant several months ago, if her GP had referred her at the first visit, so it's been untreated for this length of time and another 3 months is not ideal. 

Thanks. 

Hi,

0.1mm is very shallow so your wife is very lucky and she will be Stage 1a. The width is not a problem as it's spread in the upper layer of the epidermis and only a small part of it has grown in depth. What I can't understand, however, is why she has been offered a Sentinel Lymph Node Biiopsy - this only usually occurs when the melanoma is over 1mm in depth - in fact some consultants don't even offer it then as they don't believe it makes any difference in survival, only as a Staging tool. A melanoma as shallow as 0.1mm has very little chance of spreading to a lymph node. The fact she is having to wait 3 months because it's so shallow but they want to do a SLNB is very puzzling. Has she been given the details of a Specialist Cancer Nurse that she can contact if she has any questions? If she has, then I suggest she ring them and query why such a shallow melanoma needs a SLNB. If she hasn't, I suggest she rings the consultant's secretary and requests a ring back to query this. The normal procedure, no matter what the depth, would be to do a Wide Local Excision (WLE) to ensure a wide margin of tissue has been removed to mop up any breakaway cells (which is unllikely to occur with such a shallow melanoma). She would then have regular checkups for between 1 & 3 years. As I said before, a SLNB would only be offered for anything over 1mm & then it's not always offered. It's also the patients choice if they want to have it done so your wife can choose if she wants it or not. It definately needs more explanation from the consultant or nurse.

I know it's very worrying and frustrating that her GP didn't refer her earlier - this isn't uncommon I'm afraid. Some GP's may only see a patient with melanoma once or twice in their career and some melanomas are hard to diagnose but they should really have referred her if they were unsure (according to NICE guidelines). Can I suggest that, once she has spoken to the hospital to clarify if a SLNB is needed, that she puts a complaint in to the Practice Manager and that she explains in full what happened - if she has any photos of the mole add those too - it won't change what has happened to her but it will hopefully make the practice get extra training for their doctors so they know what to look for in other patients. 

Having said all that, the time spent being fobbed off before referral is unlikely to have had a negative effect on your wife's diagnosis. The melanoma being so shallow means it's probably not grown in depth in that time so please take comfort in that. I've sent you a friend request so we can chat by private message should you want to.

Best wishes

Angie

Thanks for the detailed information, Angie. 

The notes say it is stage 1b.

My wife has been given details of a Macmillan nurse, so I presume that is the specialist nurse you're referring to. We'll call and query this. 

I completely agree with what you said about the practice and we are planning to complain, precisely for the reason you mentioned - hopefully to make it less likely to happen to someone else. 

This was 3 separate doctors over a period of months and when my wife said she wanted to be referred on the third visit (after he said that he didn't think there was any problem), he was very hesitant and then asked if she had private health care!? This suggests to me that he thought it was not a good use of NHS resources, whereas to us, this mole exhibited a number of the classic danger signs that always get mentioned: rapid growth, change of colour and change of texture. 

She provided photos and measurements too. 

Anyway, that's something we'll take up with them, so I won't say any more about that. :) 

Hi,

If she is 1b then her melanoma must be 1mm rather than 0.1mm depth. This link shows the staging www.cancerresearchuk.org/.../stage-1

If that's the case that is why she has been offered a SLNB. I think a 3 month wait is far too long under these circumstances. I suggest she still speaks to the Macmillan nurse & perhaps asks if another local hospital can do the surgery quicker - she has the right to change hospitals if she's unappy with her care.

Angie

Hi, 

I've made a mistake with the depth - it's 0.8mm, which is apparently only 0.1mm over the size at which they do the SLNB. 

Her Macmillan nurse is on holiday until Monday, but I think we may see if anyone else is available to speak with. 

We'll follow your advice about trying to get this done sooner at a different hospital. 

Thanks again. 

Hi there are 4 main cancer hospitals you can go to any one and they are centers of excelance you can goe private and that gets you to see the consutant quicker if you can afford it forget what they say about it being none urgent it is three months is a ridiculas waiting time . Theres no such thing as none urgent with this rotton disese i cant name hospitals as they blank them out but one we went to the town makes steel they were brilliant and have sone of best treatment and quick and the staff are lovely .if you live near the hospital they made a tv program about its a terible place scans take weeks .myself ive ive  had probs with protrate got a two week refferal saw specialist at 8.2o he said ime send ing you for an mri i though be a couple of weeks but he said now had mri and was back for ten takking to him he said theres a slight anomoly we can moniter it or your can have biopsie said he could do it fridy that was two days later was so quick had to arrange for following week have have genral anasthetic so next preop more bloods and i was home for one so you see if that had been another health authority i would be waitng months and my prostrat allthoe was enlarged a bit ime not ridled or anything but thats the way it should be done not like most hospitals cone back for scan then cone back to see dr so my advice look up on internet for cancer hospital and get your dr to request they see you . Regards paul

Yes theres lots of missdiagnosis in nhs. its not that its none urgent its theres not enough money to treat it sooner trust me if you can afford it get it sorted as soon as posible cancers a funny thing it can turn agressive it happend to my partner so ime not just talking out of the top of my head ime telling you how it is not the hype about none urgent forget about size and dept cancer cell can be tiny and go round in your bloodstream and colect in lymph glands or around your lymphatic systym then it grows in other organs in truth they never realy know for sure if theye have got it all sorry  if ime a bit direct but ime quoting facts

Thanks Paulus, I've found that there's a centre of excellence in cottonopolis and I know the steel place you're referring to, but it didn't get good ratings last time, as far as I can tell. 

Will continue my research.