UK Skin Cancer and Melanoma Patients

[clyde]

Dear All
Having spent a lot of the last few days reading everyone's messages I thought it was time for me to join in. I had a malignant melanoma on my back diagnosed last November and since then have had it cut out, a wide local incision and the sentinal node biopsy. All looked hopeful as the mole was not thick (about 1mm). Was told on Monday that cancerous cells were found in one of the sentinal nodes and that further treatment was recommended. This came as a shock as up until them everything seemed to be relatively minor. Am now considering my options. Has anyone heard of the trial from the John Wayne Institute where they monitor you with Ultrasound regularly rather that going straight for a bigger lymph node operation as this has been offered as one of my alternatives.
Just trying to let it all sink in.

[gilly]

Hi Clyde
Sorry to hear your results were not good - there will be people along shortly who can answer your particular query - we had 3 monthly ultrasound checks and when an infected lynph node was found they basically said need to get them all out asap - but my hubbys nodes were macroscopic so fast action was necessary - if yours are microscopic you may have that option ?? There will be someone along who knows much more than me - but welcome to the forum never the less...

[seanty]

Hi Clyde

are you in the US? Prof Thomas in London offers this, and is very strongly of the opinion that to do otherwise is to subject patients to unnecessary surgery.

[clyde]

Hi Seanty

Thanks for the reply and the info / link about Prof Thomas' views. I am based in the UK, Norfolk, and the trial being offered is following a SNB not instead as Prof Thomas suggests. It is a radomised trial between ultrasound monitoring or Lymphadenectomy, a deposit has already been found in one sentinal lymph node!

Does anyone know if there is any difference in prognosis depending on whether you have a Lymphadenectomy following the discovery of 2mm or 4mm deposits in SLNs? It seems that ultrasound can only pick up the deposit at 4mm.

Thanks for all you help.

Clyde

[gilly]

Hi Clyde
since there seems to be some good evidence that a SNB doesn't help prognosis, and that many small node lesions are false positive (and often die off before making a proper tumour) I would have thought it a good thing to monitor nodes by ultra-suond until they are big enough (whatever that is) to be considered dodgy. I read somewhere that a very high percentage of ops are un-necessary. However, I would say you need to have ultrasounds very often because one of my hubbys nodes went from slightly enlarged but with no suspect centre to 9mm with completely "tumoured" centre and "shedding" in less than 4 weeks and then 9mm to 11 in a week. I think a lymphodectamy is often a knee jerk reaction because there is nothing else but surgery as a treatment in stages 2 and 3 - I also can't find any evidence to say that, as long as you are being monitored, you should have the nodes out asap anyway - these are just my ignorant musings and hopefully others will confirm or correct. I think Sean's link and associated papers (in the margin at the right of the first page) tell you what there is - sadly its never very conclusive with melanoma and we all have to rely on the small amount of research there is....

[John]

Hi Clyde,

I also have been offered
a) the randomised trial with a 50% chance of ultrasound monitoring or surgery
or
b) Removal of all the nodes in my right groin.
or
c) do nothing apart from regular check ups.

All seems a bit of a lottery!

This was after an initial removal of the offending lesion, scans and then a wider excision at the Norfolk and Norwich. I aslo had a sentinel node dissection ( of 2 nodes) which showed that some cells in one node. As a result I am curently off work for a bit.
The trial is headed up by the John Wayne Institute in Santa Monica and it seems that NandN are part of the UK trial. My surgeon has been brilliant but nevertheless I have to make my mind up which way to go and at present am still mulling.

Hope all goes well for you.

John

[clyde]

John

Thank you for your experience I am also considering my options for the trial and I am also at the NNUH. I will send you a PM.

Clyde

[swissie]

Hi Clyde,
Actually your primary is not really small, that was also the reason you had a SNB.
I understand where you are coming from, but I personally would recommend a LND. This is the best way at the moment that you can kill the cancer cells in your body.

My SNB came back unclear if there were isolated tumor cells or benign nevus cells. The doctors told me they were certain it was benign.
Half a year later I felt a lump which came back from an FNB as a macrometatase (it was 1.3cm).
At the time of the FNB, they checked everything and found another enlarged node. They tested this as negative for melanoma.

However, when I received my path report after the LNB there were 3 tumors. I do not know how large the other two were, but they were for sure not found by the ultrasound.

Now I have a 50/50 chance of surving the next 5 years. I am hoping to bring my kid to school for his first day instead of my wish to become a grandmother orso.

Off course every story is different, and maybe you can take this change when there are medications after you find a new metastase, but as there is no cure at the moment, I think surgery is our best option at this moment.

Good luck with your descicion,
Swissie

[seanty]

Hi,

I don't want to be pedantic, but there are a few inaccuracies in the last post,(perhaps as a result of someone writing in a non-native language/ about a foreign medical system) which also goes so far as to recommend a particular medical treatment. Of course we are not doctors on here, and are not qualified to recommend medical treatments.

1. A 1mm depth MM IS "thin" and therefore low risk. SNBs are experimental in the UK, and are not associated with a particular depth of primary. It is my understanding that most consultants would not do an SNB with a thin primary.

2. It is not actually proven that LND cures anything, though it HAS been shown that giving everyone one does NOT improve their chances.