Cancer Research UK main site

Melanoma Stage 3A

stevog1184
Offline

Hi folks,

Just wanted to put up a post about my own experience with Melanoma. I was 31 at the time or diagnosis, a serving Police officer, gym buff, little history of illnesses. For as long as I can remember, I had an ugly mole on my upper right arm just below my shoulder. Over a number of years it grew, darkened, lost its circular shape and then became itchy. I ignored it and ignored it until my partner forced me to get it checked. I had it removed, sent for analysis and it came back as Melanoma. Suffice to say that my date of diagnoses, 25/10/2017 was the worst day of my life.

Anyway, I had a WLE and sentinel lymph node removal. 2 of my 3 lymph nodes removed were found to have micromestasis melanoma in them. I opted to have a complete lymph node removal from my armpit area. The remaining lymph nodes were clear.

A CT scan was all clear and I was advised it would be a watch and wait approach. I have checkups every 3 months where I am physically examined by my surgeon but that's the only care I'm receiving.

I was always mentally strong however the news that I had melanoma destroyed me. After I was diagnosed, I would find myself googling everything, going on forums to see who else has melanoma and frantically trying to find some positive news to reassure myself. I was desperate and in dire need of some good news. I couldn't sleep and I couldn't escape the endless thoughts in my head. Will I die? When will I die? How will my partner cope? Will I have time to experience anything else on life? Will I make it past my 35th birthday? Will I make it to my own wedding? 

Two years on and theres no evidence of it having spread. Nothing is a given and I will not take it for granted, but I'm finally seeing some light at the end of the tunnel. Everyones different and have their own coping mechanisms, but for me, talking to folk, counselling and any kind of mental therapy dont work. I eventually went to the doctor and was prescribed sertraline. Well, that stuff is magic. It took about 6 weeks to work but it has made a massive difference in my life. I still worry, but nowhere near what I was like before. It's essentially got me back to the way I felt pre diagnosis.

My advice for anyone facing the same battle as me, do NOT go on google for answers. I can guarantee you will not find the answers you want or need. I can guarantee you will turn yourself in to a paranoid wreck. I can guarantee you'll play the negative thoughts over and over in your head until you get ill from it.

The old saying "ignorance is bliss" springs to mind. So if you have recently being diagnosed and are going through the living hell I've been through, reach out to someone who's been through it, ask your surgeon for answers, keep family close and do NOT get carried away with what might happen.

Melanoma treatment has come on a huge way in recent years. There are endless amounts of success stories from people with advanced melanoma who have essentially gone in to remission by going through immunotherapy. Theres people who have had their own immune system keep the melanoma at bay and die of old age. 

The burning question for any person with cancer is "what will my future hold". You didnt know the answer to that question before diagnosis and you'll not know the answer now. The single most important bit of advice I can give, dont waste any time trying to find out that answer as you'll never find it. 

Focus on the things you enjoy in life, whether that be kayaking, socialising, sitting in with your dogs etc. Focus on these things, keep your friends and family close. Write down what your surgeon says each time you visit, then you wont misinterpret what they say or forget any vital information. If you are told the melanoma has spread to 5 of your lymph nodes then believe the surgeon when he/she tells you that its spread to 5 of your lymph nodes, NOT the rest of your body. If you need medication, get it prescribed. 

Ive gone through it and I'm still going through it, so if anyone feels they need to speak to someone who's shared the experience, then feel free to reach out to me. 

Take care, I am confident each and every one of you will beat your melanoma hands down

 

 

  • Offline

    Hi,

    It's so good when someone else with melanoma comes on here & tells it like it is. Our stories are very alike except for the timeline.

    I too was a Police Officer when I was diagnosed Stage 1 melanoma at the age of 39. That was 23 years ago when there was nothing other then surgery available and the Internet, let alone Google, wasn't invented. My dermatologist was new, only 2 for our city - the 5th largest in the country - yet from looking at my mole she knew straight away & it was confirmed by her only colleague. No SLN biopsies in those days & mine was only 0.7mm so it wouldn't have been offered anyway. Five years of checks after removal & I was good to go.

    Shortly after discharge my brother, niece & nephew all has dysplastic moles removed & our dermatologist asked us to be part of her familial melanoma research so, 6 years after discharge, I resumed 6 monthly checks for her research. 

    Two years later I was faced with bad & good luck in equal easure. A check up revealed a lump in my groin that, after a quick fine needle biopsy, showed the melanoma had returned & I was now Stage 3. So I was in the 5% of Stage 1 patients that has a recurrence & spread - bad luck. However, I was also still under the excellent care of my dermatologist who arranged for a full node clearance in my groin. My stroke of luck then occurred - the head surgeon decided to postpone his holiday by a day so he could do my surgery instead of it being his deputy. On a hunch he also took out my pelvic nodes & this saved my life as a micro amount of melanoma was found in one of these nodes (it hadn't shown on the CT). Again, surgery was the only option for Stage 3 patients in 2009 so, as a Stage 3b patient, I started the endless round of regular checks with my surgeon (my dermatologist now only does research work). The upshot is that I am still No Evidence of Disease 10 years after my Stage 3 diagnosis . I receive wonderful care & my consultant allowed me to carry on with check ups until the 10 year mark (next month). My old dermatologist has then arranged for me to continue with checks under dermatology because of my history.

    In the 23 years of living (on & off) with melanoma there have been so many changes - in treatment (adjuvant drug treatment was brought in for Stage 3 patients last year) - but also in the size of the melanoma problem. The 2 dermatologists at my hospital (now a centre of melanoma excellence) has grown to two departments as the numbers of patients being referred & diagnosed is rising beyond control. The Internet is a wonderful tool, Google especially if used correctly, but it also brings it's problems as you so rightly point out. Melanoma research & treatments are moving so quickly that the internet can't keep up so I always tell people to only look at the respected websites - this one, Macmillan and the British Association of Dermatologists. It is brilliant though for those who need to reach out and find support - 10 years ago my only support was the tiny Macmillan room at my hospital & then these forums started. 

    I totally agree that everyone deals with their diagnosis differently - some want to talk & find out as much as they can whilst others don't - some put their treatment solely in the hands of their clinicians whilst others try to bolster it with alternative therapies or even shun the medical route & concentrate only on alternative medicines. The latter is something I have never agreed with - there are too many 'snake oil' sellers out there that prey on cancer patients. Having spoken to many melanoma patients over the years my advice is - accept everything your clinician says & offers but also, if you want to know more, learn everything you can about the disease & the treatment options by speaking to your peers. This has helped many I know as they have used this information to ask for a second opinion which has brought them a drug trial they weren't aware of. One of my melanoma patient friends now runs an annual patient conference where consultants give presentations to the patients about the state of research & treatments - it is invaluable. My dermatologist speaks at these conferences (she is now the chair of NICE for melanoma) and there are two things she said to me that I will always remember (and I live by) - when being told I was Stage 3, 13 years after first being diagnosed, she said 'It's not the end of the world' and she was so right - it's not. At one of the conferences I asked her if she & her fellow consultants dislike the patients getting 'clued up' & questioning their care & treatment, she replied 'Patient empowerment is very important - it's your health & I'm all for it.' So never be afraid to ask about something that hasn't been offered!

    I truly believe that our (Police) occupation has a bearing on how we deal with our own personal trauma. Live life to the full, don't waste time on the 'what if's' and don't worry about reaching out to your clinician if you have a worry, they are there for you! Keep well & keep positive,

    Angie

    PS I will send you a friend request in case you are interested in the annual melanoma patient conference.

  • Offline in reply to AngieT

    Hi Angie,

    Thanks for your reply and it's so reassuring to hear from another person who is living well, years after diagnosis. Do you mind if I ask what area do you live?

    I'm in the most northerly part of Scotland so we dont have any melonama specialists. I've had all my treatment done by a breast surgeon and the hospital is a 210 mile round trip for me each time I go. Not ideal, but the travelling is a small sacrifice to make.

    Yes I am interested to hear about the conference thank you, anything that will expand my knowledge is well appreciated. 

    I have found that there little treatment for stage 3 patients. I'd absolutely love to have immunotherapy to kill any stray cells that may be in there, however I can understand that theres no way of them knowing if it's worked. Do you know if you can pay to have immunotherapy privately? What's your thoughts on this?

    Kind regards

    Stephen

  • Offline in reply to stevog1184

    Wow Stephen, that's a long way to travel & it not even be a melanoma specialist!  I know it's so hard to miss out on the adjuvant treatment if diagnosed before it started last autumn. It's obviously early days yet to know if it's helping Stage 3 patients but the stats for it's success in Stage 4 patients is showing good results so far. You may possibly be able to pay for it privately - I don't know if anywhere offers it. Because I've lasted so long without any drug treatment (I know of 2 other Stage 3 patients the same as me) I think my immune system must be strong enough to keep it at bay - that's why my dermatologist thinks it took 13 years to return as Stage 3 with me! If I (or you) should have any further problem we will be offered it at that point though.

    Thanks for accepting my friend request. I'm having trouble sending you a message - could you try sending me a message please,

    Angie x

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.