New diagnosis-metastatic malignant melanoma

Hi and a warm welcome to the online community

It must have been a big shock for you to discover that what doctors originally thought was an abscess in your armpit has turned out to be metastatic melanoma.

It's no surprise to hear of the emotions you've been through in the last month. I was diagnosed with melanoma nearly 3 years ago and can remember only too well how numb and shocked I felt to find that a 'curious lesion', as the medical fraternity referred to it, was in fact melanoma.

As mine was found on my skin I had to have a wide local excision (WLE) and sentinel lymph node biopsy (SLNB) to make sure that they'd removed it all first time and that it hadn't spread to my lymph nodes.

I'm going to tag my fellow Community Champion KTatHome into my reply because, like you, her doctors were unable to find the primary on her skin and she can then tell you about the success she's had with immunotherapy. If you click on her username you can read about her journey with melanoma if you want to.

When you feel up to it, it would be really useful if could pop something about your 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.

x

Hi , I read your post and I as latchbrook has said I had an unknown primary underwent the full skin check and.eye check and nothing found, this was back in July 2015. Those first few weeks until you see oncology and have a treatment plan are hell aren’t they. If my story helps you can read my profile by clicking on my user name and you can also click on my blogs posts, I’ve put the link in. https://community.macmillan.org.uk/members/ktathome/blogs  I wrote them to just get all the thoughts out of my head. 

i have no concrete answers as to why this happened, I possibly had a melanoma on my skin which my own immune system dealt with, and possibly this all started again as my immune system was weak after coping with my mother being ill and passing away, but as you say it’s the preparing to fight or looking at what lies ahead rather than what’s behind that matters. 

You may find the below patient decision aid from melanoma focus helpful to look at the options that might be presented to you and it has questions you might like to ask and things you may want to consider. The links below

https://pda.melanomafocus.com/stage-four/

I’m no measurable disease, I am still on Pembro every three weeks til possibly March and hoping to be getting back to remaining clear and off treatment. I found it helpful to concentrate on eating healthily and on getting fitter both to help my immune system and to help with the fatigue I was having. 

My tips when seeing the oncologist are, take some water with you, make sure you are well hydrated before they do your blood tests. Take a companion with you as you might glaze over and stop listening, don’t take more than one as sometimes the clinics are heaving with people. Take a list of questions with you so that you can stay focused. Take something to do with you as often clinics run over time, this is a good sign rather than an annoyance as it means they give patients time to ask questions. Make sure you have the name of someone you can ring if you have questions you think of after your appointment, this may be a skin cancer nurse. 

If you have any questions I will help from my own experience where I can, there’s also an ask an expert section on here and the Macmillan support line. 

Its a scary time waiting for treatment to start and then waiting for scan results to see if the treatment is working (or not) but where as 10 years ago anyone with the same diagnosis had no hope, there is now real hope that the treatments available can for some people get rid of this and keep us clear for many years to come. Blow statistics if it works for some why shouldn’t it be you, it’s much better to be positive until you know otherwise than keep dreading the worst, but of course it’s difficult to stay positive all the time we all have our wobbles.

Use here to express the wobbles, celebrate successes, give and get support, exchange personal experience and not feel like you are the only person going through this. I like to share helpful links I’ve found to info aswell so you can make your own mind up about stuff. Some people will say don’t google as it’s scary, some think if you are better prepared when you meet the oncologist you will take more stuff in. I find Macmillan, Cancer research, Melanoma Focus and Melanoma Patient Conference good places to get information. 

Wishing you all the best for Monday’s appointment. 

Hi. Glad to hear you're feeling more positive. My experience sounds similar to yours. What began as an itchy mole on the back of my neck is now, through a series of unfortunate events, incurable spinal cancer. I've had a neck dissection, radiotherapy, chemotherapy and most recently immunotherapy. The immunotherapy is, like they say, a game-changer. I've been stable for nearly a year. 18 months ago, I couldn't walk as the tumours were expanding and squashing the nerves going into my legs. So there is hope! Rely heavily on your family and friends; they'll all want to help. Best wishes.  

Thank you for your reply. Sorry to hear you are also going through the same. I’ll update my profile soon. Thanks for the info.

Hi

I was just wondering how your appointment went with your consultant a couple of weeks ago and what treatment options you've been offered?

I hope you're okay.

x

Hi latchbrook

Thank you so much for asking. Thank you all for your lovely replies and I’m sorry I didn’t get back to you all I’m not very good at using this site.

I went and saw the plastic surgeon who advised they wanted to remove all axillary lymph nodes from my left side and then I will receive some form of immunotherapy but will see oncologist later on once healed to discuss that. I had the surgery Thursday and came home yesterday. My surgeon was pleased and said he found the tumour and removed it.I am very stiff and in lots of pain. I have two drains and am wearing a compression top. I hate the drains, I can’t look at them. My husband empties them for me and I keep them in a pillow case out of sight. I have exercises from the physio but can hardly do them at the moment but know it’s only early days.

i go back next Friday to see someone, it won’t be my consultant as he is on holiday. I hope they’ll remove one of the drains.

if anyone has any reassurance/support they can offer after this specific surgery please let me know as would be nice to receive some.

thank you again and I hope everyone is doing ok. X

Wow thank you for sharing your story. I’m so pleased you are doing well. Did you have any side affects with the immunotherapy? 

Hi 

That's good news that your surgeon was pleased with the way that your operation went although I'm sorry to hear that you're feeling very stiff and in a lot of pain at the moment. I'd certainly recommend taking whatever pain relief your team have suggested. I only had my sentinel lymph node removed but I was uncomfortable for a few days.

There are quite a few people in this group who have had the operation you've just had and plenty of others who are on immunotherapy. I'm sure they'll be happy to discuss these with you. The best way to reach them would be to start a new post as they may not read this one. Just go to the top of the page and click on 'start a discussion'.

I can understand you not wanting to look at your drains as I'm also quite uncomfortable with that sort of thing. I must admit that I surprised myself when I had to have a cannula put in the back of my hand as I even managed to touch it after I'd come round from the operation and biopsy.

Let us know how you get on when you see someone next Friday

x

I’m very squeamish too so also don’t like cannulas! 

I will start a new thread with regards to the surgery recovery-thank you. And I will also keep you updated.

thanks again for your support

Hi

I hope you're well and have healed nicely.

Do you know what further treatment, if any, you need now as you thought you might be having immunotherapy?

xx