Lump of 5 years turned out to be Melanoma... anyone else?

Hi , welcome to the online community, I’m so glad the support line suggested you join us. I know that your searching for something that isn’t negative, so I’m hoping that my profile experience might give you some thing positive. It’s not the same as your Dad is, at the moment your Dad is not expecting any spread is he, and it’s better to feel positive than dreading stuff all the time. 

My story started with no primary but a spread to abdominal and pelvic lymph nodes and then later my ovary. I’ve never been aware of anything on my skin so who knows how long ago my immune system had been trying to cope with things. I’ve had targeted therapy and immunotherapy, currently I’m on Immunotherapy again til March a year after my lymph node surgery when it came back a second time, but currently no measurable disease. I don’t always feel so positive, but no one can all the time, 3 monthly scans are the wobble times but things are pretty good when you look back and I can see things getting even better in March when I’m hoping to be off treatment and still no measurable disease. 

I hope after surgery you both get good news to celebrate, but if it’s not as good, we are hoping for you it can get good again. Good luck with the WLE and SLNB next week. Feel free to reach out for support, give it back yourself and ask questions of everyone for their experience. 

Best wishes

Hi and a second welcome to the online community

Firstly, good for you in getting your husband to see his doctor. We all know how easy it is to keep convincing ourselves that there's nothing wrong. When my lesion first appeared on my arm it was my husband who persuaded me to go and see my GP as I was convinced it was just an insect bite, or that I'd caught my arm on something which had caused it to be angry looking.

When I was told, after the biopsy results were back, that it was melanoma I remember feeling completely numb. I wish I'd known about this forum then so that I could ask questions of people who actually had melanoma instead of frightening myself with negative stories that I read on the internet.

I had the wide local excision (WLE) and sentinel lymph node biopsy (SLNB) that your husband is having next week so if you want to ask any questions surrounding those ops just fire away.

You haven't said how deep your husband's melanoma was but there's every chance that the WLE will be all the treatment that your husband needs. He will then have 3 monthly check-ups for 3 years and then 6 monthly check-ups for 2 years with a consultant or skin cancer nurse specialist (SCNS). 

When you have a minute it would be really useful if could pop something about your husband's journey so far into your profile as it 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 how he gets on next week.

Thank you replying to me. Sorry, it’s actually my Dad that has been diagnosed. I will try to update my post 

The thing is he/we seem to have been told nothing about stage/ size etc. All we know is that it was removed and tested and when he went back (he thought it was to check wound healing) he was told it wasn’t as good as they hoped and it was malignant Melanoma and he’d require more surgery. 

He was referred to royal free where he had his initial consultancy and they talked him through the next Op. (the pre assessment, the skin graph and possible lymph removal) They only really discussed that he needed to discuss with his GP about his aspirin etc. He was told the whole thing would be within 4 weeks- by the time of his op it’s actually 5 weeks  and this involved him chasing. 

We are now pretty clued up about the next op and why they are removing the node etc but not really any wiser as the stage of the cancer itself... I assumed maybe they’d know this after this next week. The thing concerning me the most is the length of time this thing has been there. 

I think I’m looking for reassurance that no one can really give me, that this thing can exist all that time and it still doesn’t mean the worst. Maybe I’m wrongly clingy to hope that after all the the the WLE & SLNB will still be the end of it . 

Hi AKL86,

Sorry that your dad has joined the Melanoma club, but theres a very good chance he will have the second op, and nothing more will come of it save for the three monthly scans & check ups.

Your father will have been allocated a specialist nurse who will be able to answer most questions about his condition, and this will certainly include the staging of his melanoma.  Still its possible that he is in "shock" too over the discovery that he has this conditition, so maybe he needs a little space & time to adjust before asking lots of questions?

I wish your father, you and all your family the very best, and please don't hesitate to ask any questions here, one of us may well have an answer of some experience to share.  You can of course look up anyones profile and read their story too which I have found very helpful.

Take care

J

Hi AKL86

I have a very severe phobia of doctors - so severe that I would prefer to die than be admitted to hospital. This meant that I knew I had a malignant melanoma on my arm for years, more than five, and it had been growing up and out of my skin (after a knock) for eleven months before it started bleeding so badly that I was blue-lighted to hospital.

Yes, it had spread to my lymph nodes - I had two substantial tumours in my armpit. No, there was no evidence it had gone further.

It turned out, after a large helping of intensive psychotherapy, I can stay in a hospital for about 8-10 hours at a time. That was enough for my melanoma team to sort out a treatment plan. I had the primary removed and I had immunotherapy.

I was a responder to immunotherapy and have been NED (no evidence of disease) for three and a half years.

So, yes, I left it even longer than your dad and, yes, my treatment has had a positive outcome.

All the best

Hi

Im afraid you’re not going to get any definitive answers until your dad has been through the process of tests etc.

But please don’t lose hope.  My melanoma was - ahem -  “not somewhere I’ve ever been sunburnt”. I’d noticed discolouration for a while but thought (a) it was collateral damage from childbirth and (b) you couldn’t get melanoma there. Wrong on both counts! But I’d been living with it for a while.

i was eventually staged at 2c. I think the surgeons were surprised it hadn’t spread further. 

BUT the really important thing to know is that melanoma treatment has changed massively over the last few years, and whatever the tests show, there will be a treatment plan for your dad.

Please keep posting whenever you need to - there is a lot of very helpful experience on this forum which can help you and your family as you work through this x

Thank you Moira. I’m so pleased you are NED now. 

Was yours diagnosed and then you left it for several years? Or the lump you knew you had for that time then was diagnosed after the bleed?

I'm unsure as to how my dad’s started as I didn’t see it. Of course it may have been nothing that turned cancerous (I know it wasn’t a mole) 

I also understand that perhaps we won’t know more until another 4 weeks after they have removed the node and tested. It’s a frightening time. 

My diagnosis was after the bleed but the news it was malignant melanoma was not a surprise as I had watched a mole enlarge, change shape, change colour and spread horizontally over those 5+ years. In the last year, after I knocked it, it grew outwards Obviously, I do not know when it started to spread.

I knew about malignant melanoma. The only surprise was that it could be treated as, until recently, the available.treatments were ineffective.

It is entirely possible that your dad's melanoma may not have spread. I just want to assure you that treatment is available and not all possible outcomes are bad.

Thank you Moira  I really appreciate that! I’m so pleased you are through the other side now. X

Thank you Sarah. Sorry I did reply I’ve only just seen your message. 

You’ve so right; and I know I just seem to be looking for some confirmation that no one can give me until further tests like you say. At the moment all the positivity I had has left me now the surgery and results are more imminent. 

It’s a frightening time that so many of us have gone/are going through. Just trying to take each day. 

Thank you for your message. I’m hoping I can support others too in future.