Any advice welcome!

When my melanoma has spread to my lymph nodes (2015, 2017, 2019) they have always done a biopsy to confirm. You don’t seem to be talking about lymph nodes though ? (You haven’t mentioned biopsy results from a SLNB) you seem to be talking about further surface lesions. You may need someone else to give their personal experience. 

Immunotherapy (Pembrolizumab) wasn’t my first treatment, my first was a targeted therapy drug (Dabrafenib) because I was BRAF positive. My first oncology appointment discussed how I was feeling, family history, and as I was not well enough at the time to start any treatment I was put on steroids for a week to see how I improved. I know I was really anxious for treatment to start as soon as possible, so I understand how you feeling right now and yes it’s a very common reaction. The fact that you have an oncology appointment booked I wonder if they were going to offer you adjuvant treatment to prevent a spread, the only difference being is that adjuvant treatment last one year, where as when it has spread and can not be removed by surgery the time scale is for as long as it takes. 

After the consultants talked to me and paperwork was signed for treatment a nurse showed me where my treatment was going to take place and  was open to any further questions I might have, either there and then or if I wanted to call her. Some people on here have said they were also given a link to a video to watch about immunotherapy and reporting side effects. I hope my experience helps a little bit but perhaps someone else with a more recent diagnosis will also comment on their experience.

Many thanks for the reply KT.

Hi JTG and welcome to the online community

That's great to hear that reading our 'stories' have made you feel calmer.

Having read your post and profile am I right in thinking that you haven't had the results of you excision biopsy yet and that this is what you're going to see the oncology team tomorrow for? If not, I'm sorry that I've misinterpreted things

If tomorrow you are going for the results of the biopsy then it's unusual to see an oncologist. Normally you would see the consultant dermatologist who examined your freckle and decided to have it removed. If it does turn out to be melanoma, and I'll be keeping my fingers crossed that it isn't, you'll have a follow up procedure called a wide local excision (WLE) and, depending on the depth of the melanoma, you may be offered a further biopsy called a sentinel lymph node biopsy (SLNB). I won't go into further detail about those ops in case you don't need them but I'm happy to tell you about my experiences with them.

It's perfectly normal to spot lots of other things on your skin once you have been through what you have as you're suddenly much more aware than you were. When you see the consultant tomorrow you could ask him/her to have a look at these for you. If you are diagnosed with melanoma you should have your body visually checked all over to make sure there are no other suspicious lesions before you have the WLE and optional SLNB.

I hope this helps a bit and do come back and let us know how you get on tomorrow.

x

Thanks Latchbrook. 

So yesterday I went as you suspected to the consultant for the result of my excision biopsy ( I was literally terrified to the point of nausea).

The doc explained in great detail that I had a melanoma, but, I had spotted it very early (stage 0-1A). He will do a larger excision around the original site to make absolutely sure that they have removed everything. I consider myself very fortunate to have caught it at this point. My other marks which also appeared around the same time (and looked to me identical to the one excised) appear 'normal'.  However, this process has opened my eyes to the uncertainty and fear that this disease can cause you and your family. It has also opened my eyes to how wonderful people can be despite this- evidenced by all you folks on this site supporting each other.

I wish you all the very best for your own circumstances and will remain on here until I am fully discharged to help whoever needs it. I also have committed to donate a bit from my salary each month (which is modest) to help the fight to find even more effective treatments.

Good luck all

John

JTG

Hi John

I'm sorry to read that it did turn out to be melanoma but it's good that it has been caught at an early stage.

I'm sure you'll have been given information at your appointment about what having a larger excision, called a wide local excision, involves but if not clicking on the link in my previous reply to you will explain more.

Do pop back if you want to ask anything at all.

x

Yes thats right Latchbrook. I'll be having the wider excision in a couple of weeks, and then follow up appointments to track me for a year or so.

Hi JTG

I'm just popping in to see how your WLE went. Hopefully you've had it done and had the results back.

x

Thanks for checking in latchbrook! Yes I have had the WLE and am going to get the stitches out tomorrow as it happens. Still waiting for my follow up appointment- but will feedback as soon as I have soon news. Hope everyone is staying well!

I've just had my results back today from a mole that my consultant wanted to have removed from my back. Thankfully it wasn't another melanoma!

I had dissolvable stitches which I much prefer although one of them is stubbornly hanging on!

x

That is a relief latchbrook.! It must of been a worry waiting for the results? I don't think it would get any easier the second time round ...