Experiences of melanoma
Male, aged 52, white. Lived in Surrey, UK, all my life. I have blue eyes, fair skin. Not a “moley” person! I had severe sunburn (blisters on arms & legs) when I was about 15 on holiday in Corfu. Have had many holidays in sunny places, notably California. I also used a sun bed for a couple of weeks immediately before going on holiday (annually for about 10 years).
2003-5 : showed 10mm red, flat mole on left forearm to my GP on several occasions who said it was normal & nothing to be concerned about, this turned out to be misdiagnosis.
Between April - June 2005 it changed shape & colour slowly into a black nodule (looked like a black wart); removed from left forearm in my GP’s surgery Aug 2005. At this time I knew very little about melanoma & never thought it would “get” me.
August 2005 - Primary : Malignant polypoid nodular melanoma left forearm, excised Aug 2005, 3” scar with large divot remaining. Breslow thickness/depth 1.9mm, Clarke’s Level III, no ulceration, no regression, high mitotic rate (cancer cells are growing rapidly) of 15mm2 . <1> Consultant advised that 80% of melanomas return within the first 18-24 months of diagnosis.
November 2005 - Sentinel Node Biopsy (SNB). Left axilla positive parenchymal deposit, one melanoma in sentinel node only <2>. Operation next month will remove all the lymph nodes from this area in case one or more could contain Melanoma. Stage 2A.
December 2005 - left axillary completion Lymphadenectomy. 24 lymph nodes removed from under left armpit (all negative, ie non contained MM). Stage 3A
January 2006 - course of trial BCG injections in an effort to possibly delay MM spreading (didn’t work for me!).
July 2006 - Fine Needle Aspiration during a routine melanoma clinic visit, melanoma positive lump left axilla and positive node lump in left neck. These 2 melanoma tumours were removed 2 weeks later (major operation at NHS hospital in London)
July 2006 - left axillary metastectomy <3> plus left modified radical neck dissection type 1. 42 lymph nodes removed from left neck/shoulder (one positive <4>). Left sternacloidial muscle removed. Phrenic nerve not cut. Very long scar from left ear > chin> shoulder. Re-diagnosed as Stage 3C • July 2006, Post operatively left chylothorax, treated with Octreotide
July 2006, Left raised hemidiaphragm due to neuropraxia of phrenic nerve
July 2006, Left shoulder weakness and chronic anterior subluxation probably due to neuropraxia of accessory nerve
Aug 2006 - Referred to fractures clinic : shoulder and physiotherapy, hydrotherapy. Signed off from physiotherapy & hydrotherapy Nov 2006. Fractures clinic (shoulder) signed off Jan 2007.
October 2006 - Ultrasound (neck OK) ; EMG appointment to check phrenic nerve intact because my shoulder blades were sticking out like angels’ wings – a result of the operation. These were back to normal after 6 months. Phrenic nerve remained intact.
Jan 2007 - CT scan (full body), result = all clear for now.
Feb 2007 - Monitoring possible cyst under left armpit (I am prone to cysts but on my back). See photos below of how this “cyst” grew quickly over 10 weeks – turned out to be melanoma. Scar is from previous Sentinel Node Biopsy & left axilla lymphandectamy.
Feb 2007 March 2007 April 2007
April 2007 – New lump under skins surface (left armpit) removed possible epidermoid cyst left axilla (day surgery) = result metastatic malignant melanoma node <5>. Note I’d already had all my lymph nodes removed from this area in Dec 2005. Staging remains unchanged at 3C.
July 2007 - CT scan (full body), result = all clear for now
Aug 2007 - During self-examination I could feel 2 soft iffy lumps in my left neck, possibly a couple of lymph nodes they’d missed when I had them removed in July 2006. Ultrasound to investigate these 2 new palpable lesions in left posterior triangle = result believed benign, no FNAC carried out.
Sept 2007 - Full body CT scan. Result = 9mm lesion on right lobe of liver. Liver biopsy, result = benign haemangioma (confirmed by ultrasound, FNA not required)
Jan 2008 - 2 suspicious cysts removed by surgery; 1 from lower back & 1 upper back. Result = both were epidermoid cysts (non malignant)
Nov 2008 - Full body CT scan (result = all clear for now). Recommendation of no more routine CT scans.
April 2009 : 2 years No Evidence of Disease
May 2009 : At routine clinic visit Consultant advised me : pathological staging PT2 A N2 M1A. I asked about my clinical staging of 3C, but this has now been updated to Stage 4A due to more than 1 lymph node basin involved (axilla & left neck) plus local recurrence in left axilla. It is possible to be a Stage 4 and have no evidence of melanoma in organs (which is my case)
April 2010 : 3 years No Evidence of Disease (NED) – ie from last tumor removal on 17.4.07
21.5.2010 : LDH blood test, result = normal.
3.3.2011 : Day surgery : removal of suspicious cyst from left shoulder - Result = lipoma showing no malignancy or dysplasia. Ultrasound of suspicious fatty tissue lump on left side - Result = benign lipoma; FNA not required
April 2011 : 4 years No Evidence of Disease (NED) – ie from last malignant melanoma tumor removal on 17.4.2007
Summary of my 5 malignant melanoma tumours removal
Aug 2005 x 1 (left forearm) Primary <1> Nov 2005 x 1 (left axilla, sentinel node positive) <2> July 2006 x 2 (left axilla & left neck) <3> & <4> April 2007 x 1 (left axilla) <5>. Summary of scans: 1.06 CT Scan; 1.06 Bone scan; 7.06 CT scan, full body; 10.06 Ultrasound scan (neck); 1.07 CT scan, full body; 6.07 CT scan, full body; 7.07 Ultrasound (left neck); 9.07 CT scan, full body; 9.07 Ultrasound (right lobe of liver) ; 1.08 CT scan, full body (brain, neck, chest, abdomen, pelvis); 11.08 CT scan, full body
Trying to find out more information about malignant melanoma when I was first diagnosed proved to be difficult, apart from stuff on the internet which was mind-boggling. At that time I believed fully all what the melanoma specialists were telling me. It was recommended I go on a trial of BCG injections and a suggestion of taking various vitamin supplements might delay melanoma (it didn’t!). After being diagnosed with MM, I gave up work in 2006 in order to reduce stress. I was advised by an oncologist that by reducing stress levels, this may give me a better prognosis. My job was very pressurised & not too enjoyable so I was happy to give it up. As I have had 68 lymph nodes removed in total only from my left upper side, I have to be careful about getting an infection in my left arm/left neck areas; for example I always carry antiseptic cream in case I cut myself or get a mozzie bite. I buy clothing with a very high sun protection factor (there are specialist internet shops), plus I always use the maximum protection sun cream. I always wear long sleeve shirts during the daytime. I currently have no evidence of disease since April 2007; I attend Melanoma clinic once every 3 months in London. I am currently not on any trials or taking interferon or similar. I feel fit & healthy and lead a normal life (retired early).